The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️ Start exploring here.

Carolyn and Team - please could you lead the discussion and respond to comments. I’m still in high-carer mode given Mum’s fall at home on Monday and emergency hospitalisation (17 hours ER and ‘incidents’ I had to manage - more on that later). She was discharged home late Wednesday night but, as you know, this is an intense period of activity to ensure her safety, pain management, follow-ups, rescheduling appointments, including the usual caregiving. Thank you!

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The Premise for these monthly discussions: different relational dynamics within caregiving.

Carer Mentor offers heartfelt empathy for caregivers. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, we’re united by universal life experiences: birth, death, feelings, and vulnerabilities; our humanity.

Another dimension we don’t often discuss is the relational dynamics of caregiving. I focus on eldercare/caring for my parents, but many friends care for their spouse/partner, child, or sibling. In addition, these days we recognise that caregiving stretches beyond blood ties. Various forms of kinship care, care communities, or caring among chosen family are emerging. While we may share experiences of caregiving as a whole, I’m curious to explore these caregiving relationships and offer caregiver-friends a space to connect.

This is why I started this new collaboration project to facilitate more community connections and discussion: Carer Mentor Community Network. The project involves monthly discussion groups.

• August 7th: Caregiving as a parent discussion “

• August 14th “Eldercare /Caregiving for parents” discussion

Our collaboration team members

I’m pleased to introduce you to our 13 team members. Each person has a publication in which they share their thoughts on caregiving for an older family member, friend, or parent(s). Click each name to find out more about them.

4. Cindy Roman

9. Marina Ortiz Caiuby

11. Patricia Paddey

Important details

• Mark your calendars: Caregiving as a Spouse/Partner discussions will be on the THIRD Friday of every month.

• The discussion will start on a Friday, but won’t close. Join on Friday or over the weekend, or whenever you can. No pressure, we know how precious and unpredictable our time can be.

Victoria: Last month’s discussion cohosted by and myself was an opportunity to dive deeper into “The Lonely Marriage. Exploring the Specific Isolation of the Spousal Caregiver. “

Too often, all types of caregiving are ‘lumped together’. My hope is that you feel you can freely share whatever you wish, knowing that this is a dedicated space and lens for your caregiving. My thanks to Allie for being open to my thoughts and for agreeing to share our notes. Our exchange has laid firmer ground for more discussions.

Soon after last month’s discussion, Carolyn and I explored topics for today.

Carolyn: One possible question we could explore would be:

“How do you maintain your identity or sense of self while caregiving for your spouse/partner? What tips do you have or what do you do to maintain your sense of self during this difficult phase of life?”

This is something I grapple with. Caregiving has made my life narrow, and I’m determined to create a life for Carolyn that extends beyond my partner’s needs.

Victoria: Can you turn that into a specific experience relating to caring for your partner? Instead of asking questions to our community, it would be great to offer your personal experience as a perspective others can relate to.

Perhaps you can write about a shift in your sense of self now that you’re caring for your partner. I’m trying to really hone in on personal experiences, so each person doesn’t need to try to ‘translate’ their actions/feelings for others but simply state their experience as an example.

Carers already do enough bridging and translating. Hopefully this space allows our community of spouse/partner caregivers to have more space to expand their reflections, rather than trying to ‘normalise’ it to what other people ‘think’ their caregiving experiences are.

Carolyn: In my article, Sharing An Address, Not a Life, I opened the essay with my attempts to get my partner to do various activities with me.

I tell him that I am lonely. I am very upfront with him about my need for social stimulation. While he wants to sit at home and do nothing (which I’m told is normal as cognitive decline progresses), I have decided to start carving out a life for myself.

I take tai chi classes, attend writing salons, write at my neighbourhood cafe, meet with my caregiver friends for lunch, and participate in activities at my local community centre.

I watched my mom be a caregiver for my brother (who had a traumatic brain injury) for over 30 years and it swallowed her up whole.

I’m trying to avoid martyrdom like my mom did. I watched it destroy her. Yes, her situation was different because it was mother and son, but the principle is the same: caregiving can swallow you up no matter what caregiving dynamic you are in.

Sometimes I feel guilty for trying to nurture a fulfilling life outside of my caregiving role, but I have been open and honest with my partner.

In my caregiver support group, my social worker once said, “Please don’t let this disease ruin two lives.” That really stuck with me. So, that phrase from my social worker and my mom’s total self-sacrifice in caring for my brother have helped shape the way I approach caregiving.

Let me stress that trying to build a life of my own alongside my caregiving is not easy, but I am determined to try. I’m deeply interested in seeing what others have to say on this topic.

Victoria: Thanks for sharing, Carolyn. I hear you. I could share my experiences about caring for my parents, too, because this touches several broader caregiving topics like identity, having your own time and space, how we communicate with the person we care for, and how they behave…and so much more. But here, let’s focus on caring for a spouse/partner. I’m curious to learn more from the team and what readers will share.

For our discussion

1. Briefly introduce yourself: where you live, who you care for and how long you’ve been caring.

2. Share your thoughts on Carolyn’s reflections or answer this prompt:

For those navigating spousal/partner caregiving, how do you actively protect your own identity and carve out a life for yourself without letting your caregiving role consume you?

3. Please share and reply to other comments.

A Reminder: Let’s remember that there is no right or wrong here. This community space is founded on empathy, mutual support and inclusivity. Please lead with kindness.

Encouragement: When you are raising a specific point or challenge, please feel free to share a note, or an article you’ve published, or a resource you’ve found - something that may more fully expand on your point or offer support to someone else. Please describe why you’re sharing it and the URL.

This is your opportunity to share what you may not feel you can share with caregivers who aren’t caring for their partner/spouse. This space is for you and between you. Resonance building your diverse experiences.

Please remember to ‘❤️’ LIKE the article to guide others to this discussion

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

8. “When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness

9. “Accept Caregiving Help When You Can” by Sue Montgomery, RN, BSN, MA

10. “A Map Already Torn” by Allie Varga_Spousal Caregiver

11. “You Are Still in There” by Denise Servais

12. “Becoming The Mom I Didn’t Know I Could Be” by Amy J Brown

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Today’s ‘Letter from a Caregiver’ is by

I met Sara earlier this year. I think I was drawn to her caregiving approach after reading “I live in both sides of my brain simultaneously. I’m analytical one moment, creative the next.” (from her article: The Real, Unfiltered, Slightly Caffeinated Version of Who I Am)

I’ve encountered people who think caregiving is only about hands-on care and support. Of course, that’s part of what carers do, but there’s so much more deciphering, analysing and creative solution finding, or communicating, going on too. There are no one-size-fits-all, cookie-cutter solutions, but we all curate a bespoke support scaffolding and care routine over time.

Sara offers practical support and ideas in her publication, along with a lot of grace. Here are a couple of articles I recommend reading:

• Little Deaths. Living inside a diagnosis that doesn’t stay still.

• You Are Allowed to Ask. A practical guide (plus the free checklist that started it all) to advocating before you walk through the door

Many thanks to Sara for this letter sharing her learnings and compassion with her younger self. This phrase has gone into my journal and will stay a while, "

“The love doesn’t have to disappear just because the shape of it changes.”

Author’s Bio: Sara Clime is a caregiver, systems builder, and writer. Her youngest son, T.J., was diagnosed with Duchenne muscular dystrophy in 2012. She has spent over a decade turning hard-won lessons into practical systems that help caregivers and entrepreneurs reduce overwhelm and reclaim mental space. She lives with her husband, Craig, and writes at Sanity & Systems, where she shares honest reflections on caregiving, identity, and building a life that holds both grief and joy.

Finding My Way Back to Me

Dear 2012 Sara,

It’s fourteen years since we sat in that small room and heard the word Duchenne for the first time. Today you’re standing in the garage. You went out to grab a protein shake. Instead, you found your old hiking boots, buried under old camping gear, covered in dust.

You pick them up. You don’t put them on. You just sit down on the cold concrete floor and cry.

I know why you’re crying. It’s not really about the boots. You’re crying because you don’t know who you are anymore. The girl who used to love the adventure of hiking is gone. The woman who planned a career, an empty nest, and a whole different kind of life is gone, too. Some days it feels like caregiving swallowed her whole.

I’m writing to tell you something you need to hear, even sitting there in the dust. Losing who you were might not be the worst thing that happens to you.

I know that sounds strange right now. Stay with me.

You’ve always been the one who handles things. Even as a kid, you never wanted to let anyone down. You’ll carry that into every hospital hallway and every school meeting for the next twenty years, and it will make things harder than they need to be. There will be a night, years from now, when you say yes to one more thing you don’t have room for, just so nobody has to be disappointed in you. You’ll sit in the car afterward, too tired to even turn the key, wondering why you keep doing this to yourself. So, here’s my advice: let people down sometimes. Skip the birthday party. Say no to the extra volunteer shift. Show up late, or not at all. It won’t make you a bad mom or a bad friend. It will make the road ahead easier on your soul.

You are about to lose a lot, and I won’t pretend otherwise. You’ll grieve the empty nest you pictured with Craig. You’ll grieve the career you thought you’d build. You’ll grieve family hikes, lazy Saturday drives, and a hundred small dreams you never even said out loud, like the vacations you sketched out on napkins or the quiet mornings you imagined having to yourself one day. That grief is real. Don’t rush past it. Don’t let anyone hand you a silver lining before you’ve had the chance to be sad. Grieving a life you haven’t technically lost yet is confusing. Nobody sends a casserole for that kind of loss. You’ll have to learn to sit with it on your own, and that’s okay.

But hold onto this part while you’re crying on that garage floor. Just because those dreams change doesn’t mean new ones can’t take their place. Some of the new ones might fit you better than the old ones ever did.

Take the boots. You won’t hike ten miles again for a long time. But you can still love the trail. Find five minutes near the trees on a hard day. Push TJ’s chair down a paved path and call it a hike. Trade the ten-mile trail for a walk around the block after his bedtime. The love doesn’t have to disappear just because the shape of it changes.

Do this with everything you love, not only hiking. You will lose most of your old hobbies for a while. Some of them will sit untouched so long you’ll forget you ever loved them at all. But keep looking for new ones anyway. You’ll pick up a pen again, even though you swore for years you had nothing left to say. You’ll find yourself building spreadsheets and systems, not because it’s fun exactly, but because it gives your hands something to do while your heart is busy grieving and hoping at the same time. Some of what you find next will surprise you. A few of them will end up mattering more than the things you lost.

Here’s something else worth hearing. Caregiving is going to make you stronger. I know that’s the last thing you want right now, sitting in the dust with boots you can’t wear. But stop fighting it. You are being forged into someone tougher and more resilient than you can picture from here. Let it happen instead of bracing against it.

You will also find out that you gave away a huge piece of yourself as a woman. It won’t ask your permission before it slips away. One day you’ll catch your reflection in a store window and not quite recognize the tired face looking back. You’ll wonder where she went, the woman who used to know exactly who she was. But here’s the good news: you’re already finding your way back. Not back to who you were before. Back to who you were always supposed to be. A woman who sees the world differently now. Who feels the brutal parts and the beautiful parts, sometimes in the very same hour, and doesn’t run from either one.

Let yourself feel both. Don’t let the brutal days steal the joy from the good ones. Don’t let the good days make you feel guilty for the hard ones. Both are allowed. Both are true, sometimes on the very same day.

I want to tell you about the people standing next to you in this, because you’re going to need to notice them.

T.J. will become one of the strongest humans you know, and he’ll teach you that strength was never about muscle. He loves his life. He’s happy. Let that be enough. Most people in this world won’t achieve that goal. Oh, and he’s funny. He’s funny in a way that gets you. It’s a gift that Duchenne can’t ever steal.

You’ve known Craig since you were fourteen years old. You knew him as the dorky teenager. You knew him as the floundering new dad. You’re about to watch him become someone new, a husband who sits up with you at two in the morning without complaining once, who learns medical words neither of you ever wanted to know, who becomes the rock your soul needs on this journey. Watch it happen. Notice it. Say thank you out loud, more than once, even on the days you’re too tired to say much else. Love him for all of it, not just the parts that feel steady.

Watch Connor grow up too. Your oldest will become someone only a sibling of someone with this diagnosis could become. There will be birthday parties he shares the spotlight at without complaint, and quiet nights when he notices you’re struggling before you even say a word. He will grow into one of the funniest, most empathetic, strongest people you know. Some of that will come from pain he didn’t ask for and didn’t choose. Let him have that too. Don’t try to shield him from every hard thing, even when it breaks your heart to watch him carry it. It’s shaping him, the same way all of this is shaping you.

And you will meet new friends. Friends who will walk this journey with you in a way others simply won’t understand. Trust them and hold onto them with everything you have. And take trips with them. Often. They will become something vital to the new you thriving.

Now, back to the boots.

Fourteen years from today, you’ll still be a caregiver. But you won’t be only a caregiver. You’ll have found your way back to a woman you didn’t know was still in there. Turns out, she’s fierce and doesn’t scare easy anymore.

You’ll learn to love bigger than you thought you could. You’ll make friends you would have never met without Duchenne walking into your life. You’ll try things that never would have crossed your mind before this diagnosis. Some days will still knock you flat. Some days will feel like a win just because you made it through the grocery store without crying. Both kinds of days count. Neither one cancels out the other.

So, here’s what I want you to do today. Put the boots back on the shelf. You don’t have to throw them away, and you don’t have to lace them up right now. Just don’t let them turn into a reason to hate what your life became. Let them turn into the start of a new list instead. What do you love now? What could you learn to love, if you gave yourself permission to try? Maybe it’s a shorter trail. Maybe it’s something you haven’t discovered yet. Give yourself time to find out, without any deadline attached.

You are not losing yourself, Sara. You’re just taking the long way back to her.

With love,

Sara

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

“I don’t see how a world that makes such wonderful things could be bad.” — Ariel, The Little Mermaid. (I watched that movie way too many times growing up.)

Caregiving has given me plenty of reasons to be afraid of what’s ahead. But it’s also made some of the most wonderful things in my life. I’d rather keep looking for those.

Prompt for Discussion

Have you ever found an old piece of yourself packed away in a box or a closet, and had to decide whether to grieve it, keep it, or make room for something new?

Please click the ‘❤️’ like button so that other caregivers can find this article and the resources within this Carer Mentor: Empathy and Inspiration website.

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You can read about Why I started Carer Mentor: Empathy and Inspiration here. I recommend using the quick-start navigation guide to explore the website.

The Premise for these monthly discussions: different relational dynamics within caregiving.

At its core, Carer Mentor offers heartfelt empathy for caregivers. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our caregiving experiences unique. On the other hand, we’re united by universal life experiences: birth, death, feelings, and vulnerabilities; our humanity unites us.

Another dimension we don’t often discuss is the relational dynamics of caregiving. I focus on eldercare/caring for my parents, but many friends care for their spouse, child, or sibling. In addition, these days we recognise that caregiving stretches beyond blood ties. Various forms of kinship care, care communities, or caring among chosen family are emerging. While we may share experiences of caregiving as a whole, I’m curious to explore these caregiving relationships and offer caregiver-friends a space to connect.

This is why I started a new collaboration project to facilitate more community connections and discussion. The Carer Mentor Community Network involves 3 monthly discussion groups:

1. 💬 Caregivers Who Are Parents

2. 💬 Eldercare/Caring for Parents

3. 💬 Caregiving as a Spouse/Partner

The Eldercare/Caring For Parents Collaboration Team

These are our team members. Each person has a publication in which they share their thoughts on caregiving for an older family member, friend, or parent(s). Click each name to find out more about them.

1. Adrian Chung

2. Anna De La Cruz

3. Janine De Tillio Cammarata

4. Jodi Sh.Doff

5. Kirbie Earley

6. Kirsten Mau

7. Sally Cave

8. Sarah Bain

9. Sarah Coomber

10. Sue Montgomery

11. Tina Matras

12. Viva Mogi

13. Kerri Forrest

Important details

• Mark your calendars: The “Eldercare/caring for a parent” discussions will be on the second Friday of every month.

• The discussion will start on a Friday but won’t close. Join on Friday or over the weekend, or whenever you can. No pressure, we know how precious and unpredictable our time can be.

• Explore previous discussions, indexed in the first discussion article

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Today’s discussion is co-hosted with

Listening and presence versus the ‘doing’ is our fourth Eldercare/Caring for Parents discussion.

How has listening without an agenda, goal, or need to be right changed your role as a caregiver? What was an A-ha moment or spark that highlighted this change?

Thanks for sharing your experience and reflections with us today, Janine.

Janine: When the World Cup came to the US, Canada, and Mexico, my family and I watched 90% of the games. When I visited my mom, it became a topic of conversation, because soccer is the only sport she loves to watch. I’d call her and tell her what time the games were on.

One day I was at her apartment, and a game was scheduled for that afternoon. My goal was to get there early enough to help her with her daily needs. I brought her favorite roasted red pepper egg bites from Starbucks and refilled her glass with Snapple Peach Iced Tea. As she ate, I did her laundry, cleaned, took out the garbage, etc. Everything that was on my list was done.

Done. I could rush home to watch the game with my husband.

I turned the game on for my mom, and my favorite player was on the pitch. Mom was excited, so I sat and told her more about Lisandro Martinez. We continued to watch, talk, and occasionally complain about the refs’ calls.

As I got ready to leave, my mom thanked me for staying. She had fun watching the game with me.

Her words and body language made me pause. What I heard her say was that she was lonely and having someone there being fully present brightened her day. She sat up straighter in her chair, was engaged, and mentally clear.

My mom needed company and connection just as much as she needed someone to help her around the house–probably more.

That doesn’t mean that every time I’m there we aren’t connecting. We can have a blast when she’s feeling OK.

But normally I’m trying to fit my mom in like she’s a check on my To Do List. I always say that my mom’s stubbornness makes it harder on her children. Not agreeing to have outside help for more than 2 hours a week only makes it more difficult to spend that quality time with her.

I always heard what I wanted to hear. I labeled my mom as stubborn because her wishes didn’t fit into my busy life. I admit that the physical and emotional demands cause resentment.

In addition to listening to my mom, I have come to understand through hard lessons that I also have to listen to myself. This doesn’t mean being right. This means knowing that in addition to caring for my mom unconditionally, with a full heart and open ears, I need to have boundaries.

My mom chooses to live on her own in an apartment and not with her children or in an assisted living facility. My siblings and I have worked very hard to honor her request, so I guess I have listened to her on her deepest level.

However, that choice and the choices she has made in response to her ailing health have often put me in difficult situations that impact my health, work, and family.

When I was forced to listen to my body because it broke down, I set up guidelines for caring for my mom. This isn’t something I share with her, but it’s what supports me lovingly so that I can take care of her.

A simple boundary is scheduling her doctor appointments around my schedule so that I have time to write, exercise, and be present with my family. I was always rushing to get to my mom and then my entire day would be over and I was depleted. Now on the days that I’m with my mom, my mornings are spent how I need. It’s not selfish having those boundaries. It’s Self-Full! By living my life in a way that honors my needs, I am happier and better able to care for my mom.

Listening with an open heart and mind has improved my relationship with my mom and her care. It’s also saved my health and made my life more balanced and lighter.

Brené Brown says, “I’d rather get it right, than be right.”

When I paid attention to my mom and listened with a full heart, I saw a woman who raised four children, took care of her mother and sister who had Down Syndrome, kept her home clean, and fed us, while my dad worked long hours to make ends meet.

My mom became a nurse at 40 years old and worked for years in a nursing home. She knows what can happen at the end of someone’s life.

She wishes to stay in her apartment.

She wants to do as much as she can on her own.

To live life on her terms.

To spend time with her children, not as an item to get done, but as a human being.

There are many times when my mom refuses to go out or have company. Some days my visits are quick or to check on her if she’s struggling cognitively.

Other times we’ll spend a day together going to an appointment and shopping in a bookstore and leaving with full bags.

In those moments when I truly listen to my mom and not have a checklist buzzing in my ear, I see the vibrant, intelligent, and loyal woman she still is.

Victoria: After 11 years of caregiving, I’m still learning that presence is not just about being present and listening to my Mum; it’s also about listening to myself and my own needs. Thanks for sharing and this reminder, Janine!

There’s always a tension of needs, a never-ending list of ‘To—Dos’—theirs and ours, and all those other things: the house, work and kids depending on your circumstances. Plus, of course, the unpredictability of illness.

So, there are moments that prod us, like Janine’s football match. Only you’ll know how best to spend your time amid the tension of multiple needs. We all know many things compete for our time. No judgements here! We get it! We know, all too well, the tension between ‘doing’ and being present.

For our discussion

1. Briefly introduce yourself: where you live, who you care for and how long you’ve been caring.

2. Ask us anything, share your thoughts on our reflections or answer this prompt:

Today’s prompt for discussion:

How has listening without an agenda, goal, or need to be right changed your role as a caregiver? What was an A-ha or spark that highlighted this change?

3. Reply to other comments or questions, share empathy and strengthen your connection with others who ‘get it’.

Let’s remember that what works for one person may not work for someone else. Let’s lead with empathy.

Please remember to ‘❤️’ LIKE the article to signpost this discussion for others to join

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

8. “When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness

9. “Accept Caregiving Help When You Can” by Sue Montgomery, RN, BSN, MA

10. “A Map Already Torn” by Allie Varga_Spousal Caregiver

11. “You Are Still in There” by Denise Servais

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Today’s ‘Letter from a Caregiver’ is by

Amy and several other caregiver friends have opened my eyes and mind further to caregiving as a parent. Their experiences and learnings underscored my belief that too often all types of caregiving get lumped into one bucket. So, I created our collaboration initiative Caregiving As a Parent, A Monthly Discussion Series.

There’s a wealth of insights and heartfelt advice in Amy’s articles—not surprising given her experience and parenting six kids! Here are just a few I recommend reading:

• Building a Ramp: Parenting Kids Whose Disabilities You Can’t See

This doesn’t mean that kids with physical disabilities always get all the help they need. That’s not true.

The problem with invisible disabilities is that people often see them as moral issues because they affect behavior. When others blame or judge us for our kids’ actions, we often feel ashamed.

My son can’t climb a mountain, and I don’t feel upset or guilty about that. But when my daughter acts out at school, I often feel angry and ashamed.

So how can we change the way we think about challenging behaviors? And how can we help others do the same? Read more about how Amy offers a small but powerful reframe in how to parent kids with invisible disabilities

• When Family Doesn’t Get It: Navigating Support As a Parent of Children with Invisible Disabilities

• 10 Things I Have Learned: Holiday Edition Spoiler alert: You don’t have to do it all.

8. Pay attention to what is right in front of you. And have the courage to slow down (even if no one else does).

I love this quote:

“True spaciousness of the soul has the will and courage to experience things as they are” - Christina Valters Paintner, The Artist’s Rule

Author’s Bio: Amy J. Brown is a writer, mentor, and spiritual director, and author of The Other Side Of Special: Navigating the Messy, Emotional, and Joy-Filled Life of a Special Needs Mom. She holds a Master’s in Spiritual Formation and Leadership and writes honestly about adoption, parenting children with mental health issues and trauma, and life-giving spiritual practices for overwhelmed caregivers at More than a Caregiver. She and her husband are the parents of six children and live in Michigan.

Becoming the mom I didn’t know I could be

A letter to a mother who blamed herself

Dear Younger Amy,

Years ago, you were standing in a hospital as your four-year-old daughter had a CT scan after a seizure. You were worried sick about her. As you watched her small body on that huge machine, you felt helpless, and you had no idea yet how much that feeling would become a constant in the years ahead.

After the procedure, the nurse turned to you and said, “Pick her up and hold her like she likes to be held, mom.” You stood there for a moment, confused. It was a simple request. Hold your child. But in that moment, you realized you had no idea how she liked to be held. Shame and guilt washed over you. What kind of mom doesn’t know how her daughter likes to be held?

That was the moment your mom-guilt went into overdrive. You did not know when you adopted her that she had reactive attachment disorder and Fetal Alcohol Spectrum Disorder (FASD). (Reactive attachment disorder — RAD — is a condition where a child has difficulty forming a bond with parents or caregivers due to early trauma.) You were doing the best you could. It was just the beginning of years when guilt and shame would hang over you, and you would carry the weight of challenging behaviors that were never actually your fault but a result of her diagnosis.

A few years later, you’re sitting in an Individualized Education Program (IEP) meeting with all the specialists. You came prepared with your own research, documented behaviors, and pages of notes. You were hoping that someone would truly see your child and her struggles and give her the help she needed. Instead, you were met with the question: “What is going on at home?” The judgment was clear: that your parenting, your home, was the problem. That this was your fault. At that moment, in a room of “experts,” you felt small and dismissed. Once again, you questioned yourself, wondering what it was you were doing wrong as a parent. You straightened your shoulders and went home believing you needed to try harder.

You decided to be honest with a friend about the challenges you were facing at home. You vulnerably shared about the rages, the calls from school, and the behavior that comes from a trauma-formed brain. You were weighing the few options you had, not knowing how you’d make it another day, and saying the words aloud felt vulnerable and scary, but also a relief. You were met with questions and responses that missed the mark — “Maybe she isn’t getting enough attention, maybe you need to XYZ.” The words were gentle, but they felt like a slap.

You walked away and told yourself that no one would get it, that you were on your own. Maybe I can’t trust myself.

You are sitting on the back porch with your husband after another disappointing attempt to get help and support, and you say what you never thought you would have to say: that your child needs to leave your home to get help. You realized that she needed more than you could give her. You both made the decision to send her to a residential treatment center. This will be one of the hardest decisions of your life. You do not know it now, but it will be the right and best decision for your child. But in that moment, you feel the most helpless you have ever felt.

I wish I could go back to that hospital room and remove the shame and guilt you will feel for the next several years. But here is what I want you to know and wish you knew all these years ago: parenting kids with invisible disabilities and challenging behavior that stems from trauma will be the hardest thing you do. But in all these moments, you were not a bad mom or to blame. You were parenting in an impossible situation. But you loved well. You were loving trauma and drug exposure, dysregulated nervous systems, and a child terrified to be loved, so she reacted in the only way that felt safe to her, and that was violence and raging.

In that moment of confusion when you picked up your child after her MRI, you kept picking her up, again and again, in the hardest moments. You chose love even when it seemed impossible.

When you felt dismissed, you kept advocating anyway. No expert could tell you what you already knew; you knew your child better than anyone, and that inner intuition was strong enough to trust.

When a friend didn’t understand, you retreated. But hear this now: you will be seen. You will find others who have walked this path. And one day, you’ll be the voice for another mother standing exactly where you once stood.

When you felt at the end of your rope and made the decision to send her to a treatment center, what felt like giving up was actually what helped her. That decision helped give respite and healing to the rest of the family. You were not giving up on her; you were putting her on solid ground so she could heal and learn the skills she needed to get to where she is today. That decision took bravery and love, and you had both.

Somewhere along the line, you got the idea that it was all up to you, that you had to do everything, and that it all had to be done immediately. You worried about your other children. You juggled several children with high needs while the other children witnessed the trauma. I want you to know it’s not all up to you. You will have people who walk with you on this path. You don’t have to do it all. You can take breaks and care for your body, and you can take a minute, take a breath, and do the next right thing.

In the moments when you sat in the garage and didn’t want to go inside because you didn’t know how to do one more day, life seemed really hard. I want you to know there will be so many moments of joy, laughter, and beauty, and you will be accompanied not just by others but by God and your beautiful soul.

This has been a journey, one you didn’t choose, and one that has cost you more than anyone will ever fully know. But it’s also one you’ve grown through. The woman writing this letter is not the woman standing in that hospital room. You’ve learned to trust yourself. You’ve learned to continue to love in the most difficult circumstances. You have learned to speak up, set boundaries, and not cry at an IEP meeting.

You were and are a good mom. Not a perfect one. You made mistakes and had missteps, and that made you wiser and stronger.

One last thing: eat more ice cream. Just do it.

Love

Amy (2026)

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

I love this quote by Henri Nouwen1: “Trust that the treasure we look for is hidden in the ground on which we stand.” from Bread for the Journey: A Daybook of Wisdom and Faith.

It reminds me that beauty and joy can be found in my life right now, not on some distant horizon when things calm down. Let’s be real, as caregivers, things never truly calm down! This quote encourages me to slow down and pay attention.

Prompt for Discussion

As a caregiver, I often believed that “it was all up to me” and that everything had to be done immediately.

Where in your life do you still carry that belief? What would it look like to set it down, even briefly?

Please click the ‘❤️’ like button so that other caregivers can find this article and the resources within this Carer Mentor: Empathy and Inspiration, website.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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Let’s consolidate our hacks and tips to help each other!

This article provides a reference list of tips, hacks, and Ideas that help us daily in our acts of caregiving.

There is so much more to caregiving than the acts of giving care, and we are more than the label/role of being a caregiver. The majority of Carer Mentor anthologies and articles explore the full breadth and depth of being a carer. But this article collects tips and ideas for tending to the needs of a loved one or the person you’re caring for.

The easiest way to scroll and jump to different sections of the list is to view this article on the desktop version (not the mobile app). Click on the lines on the left of the screen, and you’ll see a navigation list of the sections. Choose and click-through to a section.

Drop any hacks and tips in the comments.

Please ‘❤️’ LIKE the article so others can benefit from our experiences.

Table of Contents

Priming for Hospital

At Home Monitoring

Communication/Medical Consultations

At Home

• Organising

• Filling a Paper Prescription

• Repeat Prescriptions

• Eating and Drinking

• Sitting comfortably

• Keeping warm

• Staying cool

• Swollen feet

• Gadgets, gifts and innovations

• Showering and shaving

• Sleeping

• Safety including what to do when there’s a fall.

• In Home cameras

• Wearable safety devices - detect falls, GPS and response service

• Cleaning and messes

Outside, Away from Home

Priming for Hospital

Everyone needs these free insights!

This article [published March 7 2026] contains access to a Free Download containing this essential information: 3 checklists:

A) Hospital Go-bag for emergencies

B) Admission and ‘checked in’, they have a bed in the hospital.

C) The Caregiver’s Go Bag—it contains more, a camping-in-the-ER necessity! If you have other ideas you’d add, let me know. Average time for Review & Treat in Accident and Emergency, pre-admission. 6-8hours, most were 14 hours.

A) Hospital ‘Go Bag’ for Emergencies

Key thoughts:

• Carer’s bag preps for being in ER vs. patient’s bag is for admission

• Our caregivers’ Go Bag has 19 Tips

• Reasons to keep to essentials: restricted space in bedside cupboards; we can bring/change things during visiting hours; limit items to reduce the stress of finding things!

It’s a relief to know our person’s go-bag is primed for an emergency.

1. Short-sleeved pyjamas (so the cannula /injections into veins are not impeded). Pyjamas are better than a nightdress. A nightdress can easily bunch up, or restrict movement in bed.

2. One change of clothes

   1. Tops: a cardigan, or fleece jacket as one arm may need to be out for injections/a cannula: E.g., a vest or a tee shirt (no buttons or zips).

   2. Bottoms: E.g. Trousers, tapered ankles/jogger pants tucked into socks to avoid slipping on trouser legs if they’re sitting on the toilet.

3. A warm dressing gown that can be used as a blanket over the thin hospital blankets. Patient rooms get cold at night. A long, warm dressing gown can also act as an overcoat.

4. Bed socks with rubber grips on the soles. It is better than taking shoes/slippers on and off

   • Poor circulation can make feet cold at night. The grips can offer extra reassurance in bathrooms

   • Pyjama bottoms. Tuck trouser legs into socks if they’re a bit long to avoid tripping/falling over, when they’re down at the toilet.

5. Small towel & Wash bag: small liquid/bar soap (some hands don’t have the strength to squeeze bottles), flannel, small travel-size toothpaste, toothbrush, headphones, earplugs (noisy on a ward), pens, post-its, phone charger.

6. Their Phone: Put a paper copy of emergency contacts in phone case.

7. Face wipes and toilet wipes. Roll of toilet paper. Why do hospitals only have thin sheets of single-dispensed paper? Not great for toileting if you have arthritic hands, or have to keep pulling paper!

8. A half-empty tissue box to act as a holder for e.g. spectacles, notebook, pen, face wipes etc.

9. Small bag of current medications and inhalers NOT full pack, as we rarely get them back.

10. A book or a puzzle book like Sudoku.

11. Put a note, a photo of yourself, e.g. as a screensaver on the phone or a small letter to comfort your loved one in the hospital.

    Ref: “A little note in a pocket of the bag reminding her that I love her. It might not be useful but my heart will always be with her in the moments I’m not” Thank you, for this heartfelt idea Tea, Tissues & Therapy ☕️

B) Admission and ‘checked in’, they have a bed in the hospital.

Admissions can be late afternoon or at night. Once admitted, these are the things I’ve done to settle my parent for the night. Then, I go home to sort out the bedroom post-paramedics visit before I eat and sleep.

1. Shoes and a coat take up space - take them home. Usually, the paramedics wrap the patient in blankets, so a warm dressing gown or just a fleece jacket and slippers are enough for the trip to the hospital.

2. Things to put within reach of your loved one (bedside or over-bed table):

   1. the tissue-box/small container with tissues, spectacles, wet wipes and phone.

   2. Water with a plastic straw, a packet of biscuits that they can easily open.

3. Change day socks to the bed socks with rubber grips. They may not be able to bend down to put on slippers overnight. Avoid falls and slips.

4. Tie a plastic bag for waste to the bedside table.

5. Ensure the change of clothes and wash bag are easily accessible in the bag (don’t unpack them)

6. Give the 1-2 days of medications to the on-duty nurse. They’re usually locked in a drawer (UK information).

   1. Ensure nursing staff are aware of what has been taken and what hasn't that day.

   2. Ask daily about what’s been administered and why. This way, you know how many days the usual prescription was disrupted, and you’re clear on what’s being done and why.

C) Caregiver's Go Bag for ambulance trips.

1. Essential patient reference documents:

   1. List medications (dose and frequency of administration), including allergies to medication or latex (dressings/plasters). Five copies

   2. Medical history summary- highest priority conditions, last investigations, incl. CT, PET, MRI, endoscopy, colonoscopy, biopsy, and blood tests (haemoglobin, blood clotting factors, cancer markers). Five copies. Be prepared to make clear statements of this to medics. (See below about communication)

   3. Name of primary care physician/GP and surgery practice

   4. Legal documents and health directives: Power of Attorney (PoA), Living Will, Do Not Resuscitate (DNR) if applicable. Emergency Health Care Plan (EHCP). Any important intervention alert e.g. specific issues with intubation, anaesthesia

      1. US: Living wills and advance directives for medical decisions incl. Physician orders for life-sustaining treatment (POLST). Author: Mayo clinic

      2. UK: Advance Care Planning Link to Macmillan Cancer Support

2. Small notebook and pens, to write down everything plus the names of EVERY person, doctor, nurse, health care assistant, each paramedic. Names and titles in a book and using them in conversation is essential.

3. YOUR PHONE! The simplest most important thing and I missed stating it. Thanks to for highlighting the phone, and important info as the giver/receiver of care!

   making sure your phone is set up that emergency contacts and medical information is accessible in case of incapacitation, like in an accident or something.

   Especially with blood type in case of needing a blood transfusion. I have O negative RH negative blood type and can only receive that type. O positive or any other can be harmful, for example.

4. In a notes exchange with I remembered this tip ‘Record the conversation’ - your Phone is a great way to record conversations (let the person know you’re recording so that you don’t miss important information). Time can pass fast. To not miss anything, and to listen back later. I think we’re meant to tell the doctor/nurse we’re recording for our own personal use. Sometimes I do, sometimes I don’t. I may emphasise I’m recording if I’m getting the ‘brush off’ or ‘yes dear’ spiel! Apple watches do this too, I think.

5. Powerpack to recharge your phone: One of the best buys. Check your phone's compatibility.

6. I don’t take headphones or ear pieces for my phone because I need to overhear everything people are saying, AND listen out for symptoms changing.

7. Protein bar and individually wrapped biscuits. To avoid hypoglycaemia, I carry these in any bag we take to appointments.

8. A bottle of water with a plastic straw, for your loved one because no one can drink from a bottle lying down, and a paper straw dissolves fast.

9. Tissues, wet wipes, small towel/flannel.

10. Depending on your family member's needs: incontinence pad x 2, underwear, wet wipes.

11. Plastic trash bags for dirty clothes/waste

12. Cotton washable scarf that can double as a shawl/blanket/pillow

13. Face mask and hand sanitiser.

14. Cash for a taxi. Twice I needed to ride in the ambulance and needed a taxi to get home around midnight. Have a local taxi company number ready.

15. Hair ties and grips = holds things together = can bunch up clothes out of the way. e.g. when they’re using a commode or being sick.

16. Glasses and glasses case, artificial tears for dry eyes,

17. Lip balm, and chewing gum.

18. A book you’ve read, a puzzle book like Sudoku - something easy/familiar to pass the time but that isn’t too distracting. (Thanks

19. A box of aspirin and paracetamol. This may seem odd if you’re going to a hospital but twice I’ve had a headache/symptoms and it was hard enough getting attention for my parents, so now I take medication for me. FYI Aspirin

    Aspirin works by reducing this stickiness, which in turn lowers the risk of blood clots forming and makes the blood thinner. This is why the NHS recommends chewing 300mg of aspirin if you think you’re having a heart attack. You can do this while waiting for an ambulance to arrive.

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At Home Monitoring

1. No Touch Forehead thermometer. Purchased September 2024.

   1. If your loved one is immunocompromised and has a temperature over 38’C use a cold wet flannel on their forehead to bring down their temperature.

      I’ve been advised to call for an ambulance at this temperature. It’s worth priming yourself with medical advice for ‘Alarm symptoms’ and ‘what to do when…’ scenarios.

2. Oximeter: Pulse and Oxygen saturation Similar to the one we purchased in 2020

   1. Pulse Oximeter(Amazon) and How to use a Pulse Oximeter at home video. Normal Oxygen Saturation 95-100%

   2. NHS (published in 2022) How to use a Pulse Oximeter and a handy tracking sheet.

5. Blood Pressure Monitor Similar to the one we purchased in 2017

   1. How to use a Blood Pressure Monitor (British Heart Foundation Webpage and video)

   2. The electronic monitors can be glitchy. I recommend taking 2-3 readings.

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Communication/Medical Consultation

For an emergency be prepared. I recommend having your ‘6-second Emergency Info-Speech’ ready so you can focus on immediate issues!

1. Symptoms & current situation: what, when, where (location on body), intensity, within what timeframe and compared to your loved one’s norm

2. Medical history in brief

3. Current medication

4. Medication allergies

💡Consistent, clear, direct priorities/information. Use these articles to help prepare:

Consultation with a doctor - how to help ourselves, close patient-physician disconnects.

1. 'How to close patient-doctor disconnects.' Building our language/questions to feel like we've done our best to advocate for ourselves AND improve our chances of being heard in a medical consultation.

   What do you say when you’re consulting with a doctor or nurse?

   How can we advocate for ourselves, identify actionable phrases to use with medical staff and close potential patient-physician disconnects?

2. 'Beyond using the right words, how can we improve our interactions with doctors?' What can we do to be heard in the medical consultation?

   Each moment counts. How much alignment and understanding will you and the doctor have in an emergency? How can we optimise the dynamics and interaction as the patient/caregiver?

At Home

Organising

1. A Caregiver Organiser in How to Reduce Stress During Caregiving. Journaling to Track and Organize by (Thanks, Janine!).

   1. Janine’s shared some prompts for journaling and generously shared an excel template of how she has tracked information. ‘This excel file is generic so you can input medications/doctors/hospital visits for yourself or anyone you’re caring for. Again, it’s what works for me’

2. There is no right or wrong way to track, monitor medications, appointments etc. It IS IMPORTANT to track things. Here’s a list of information points we track:

   1. Day, date, purpose of visit/consultation, doctor/medic’s name, questions going into the consult, potential outcomes/actions/tests, medications (brand name, the in brackets drug name), dosage (milligrams), formulation (patch, tablet, capsule, sublingual, liquid)

   2. Date of next appointment and follow-up checks

   3. Who will receive copies of letters / communications (so far there has only been a few letters that have been 100% correct).

   4. Summary of key information points, and any changes to current medications and tests with a view to sharing this with the other doctors.

3. A tip about information management, from “ I have a list of my mom's meds, insurance cards, pacemaker info card, etc. in a folder labeled MOM on my phone. I'll also use the info ℹ️ on the phone to add other notes for that particular photo. It comes in handy when out and about.” A tidy idea, thanks, Janine.

4. Calandarpedia is a free resource. On the left you’ll see this view click on the format you prefer. I like to use a yearly calendar in Excel format. Click the hyperlink and scroll to the bottom of the page to see the different templates E.g. Template 7. The aligned days helps me to see where the monthly appointments fall

   

   

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Prescriptions

UK Paper prescriptions

If you are given a GP or specialist prescription on paper I recommend asking the doctor to spell the medication and confirm the drug class that it belongs to.

• Handwriting may not be legible.

• One letter difference can mean the difference between a pain, anti inflammatory drug and a hormone treatment for cancer.

Check the milligram dosage, frequency, and if it needs to be taken with/without food. (Always read the patient information leaflet inside the medication box, and ask your doctor if the ‘indication’ (an indication refers to the specific medical condition or symptom a medicine is used to treat, prevent, or diagnose) does not match your/your loved one’s diagnosis.

always Google search the drug name so that I can print out the patient information from trusted cancer organisations, for our awareness. This is an added validation step.

i can then make sure the pharmacist is providing us with the right mediation. Busy pharmacists need support.

Repeat Prescriptions

Managing repeat prescriptions (UK specific). If in doubt always check with your GP practice.

Via the NHS App

• When the NHS App was launched I completed forms with the GP Practice to have access, and manage prescriptions and appointments for my parents

• Via the NHS App on my phon I can switch between our profiles, order repeat prescriptions. There is a list of pre-approved medications and I tick box the ones required. A GP then approves the request and this triggers a prescription at our nominated pharmacy

• I set up a delivery for my parents medications

Via eRD = electronic Repeat dispensing

NHS England » Electronic repeat dispensing (eRD)

• This is when your GP does a batch approval of, for example, a years worth of repeat prescriptions. I thought this was what I was already doing via the NHS App

• BUT, No. The regular medications are pre-approved in a batch and held by the pharmacy. Each month, the pharmacy delivers these to our door.

• This ONLY works because there is no change in the type, dose, frequency or formulation of medications.

• I double checked with our GP practice AND the pharmacy. A few days before a delivery was due I rechecked with the pharmacy to avoid running out of pills.

  This is the 'Never Assume' Carer Mantra in Action. The pills were delivered.

• PRO TIP: I ensured the delivery is on a Thursday, so if there were any issues I could go to the pharmacy early on Friday. Pharmacies are closed at the weekend.

Eating and Drinking

1. A thermos cup

   1. a large grip handle, for those with arthritic gnarled hands, or who have difficulty gripping smooth cups/glasses

   2. slide-close, not a twist or difficult clip or knob. A Slide closure is easier for arthritic fingers

   3. a large stable base, to reduce spills

   4. not too tall - like a mug, to avoid knocking it over

2. A Push-Button top thermos (Similar to the one we purchased in 2016). I make 6-8 cups of tea with sugar and milk, fill up the flask and use this overnight instead of making single cups of tea. It stays hot for around 8-10 hours. I usually pour tea into the thermos cup.

   1. Beware if you have milk in the tea/coffee ensure you wash out the thermos everyday to avoid soured milk, or bacteria build up. Best option no milk

   2. Also really good for hot juices and squash e.g. Ribena or Robinsons orange.

3. Small travel kettle is a blessing if you need to quickly make a cup of tea for yourself or a loved one in their bedroom, in the middle of the night. When things are a little unstable, night times can be the most difficult. Sometimes, getting out of bed and having a warm drink can be worthwhile, to have a deeper sleep afterwards.

4. A Cool-bag is a low cost way of keeping water or other drinks cold in a bedroom. Or a little milk in a water bottle for the overnight cup of tea or ovaltine.

   1. On Amazon you can find small portable fridges that can keep things cold or warm. These can be used at home or on car journeys with the different cable power cables.

5. A transparent water bottle to measure fluid intake

6. Fortified drinks for when loved ones can’t eat much. They have a dense consistency but can work in a little porridge/cereal. e.g. Fortisips, Ensure, Nutricia’s Nutilis, Complan. They’re available on Amazon or ask your pharmacy.

7. Dense liquid honey is a great alternative to throat lozenges/cough sweets. A teaspoon is enough to coat the throat. Even after a drink of water, it still coats the throat and helps with a dry cough.

   1. If the person you're caring for dozes off to sleep with their mouth open, their throat dries quickly.

   2. Honey is sometimes better than lozenges/sweets to avoid a risk of choking when they fall asleep

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Sitting Comfortably

1. Memory foam cushion with side-arms to keep it in a stable position and ‘hug’ at the hip-level. It comes vacuum-packed and tiny but plumps up to its huge size quickly, if you patiently agitate the foam inside. I bought the medium-firm support.

   

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Keeping Warm

The colder, damper days also increase joint aches and pains due to rheumatoid arthritis and osteoarthritis.

A few warmers I researched/purchased over the years, for my parents

• To warm up hands and toes. Hothand’s warmers. I recommend putting them in a small pouch and avoiding direct contact with the skin if you’re sensitive or thin-skinned.

• Slankets; blankets with sleeves. Amazon versions.

• Heated Throws and overblankets: Dreamland’s heated throws and overblankets

• Don’t forget: fingerless gloves and woolly hand muffs are good for someone sitting in a wheelchair, to keep both their hands and legs warm. If I were

  handcrafty, I’d make them!

Staying Cool

• Battery operated handheld fans, Wooden fan

• MENO COOL Scarf Cooling Gel Neck WRAP I have two of these, and they work!:

  • Simple & effective cooling aid for Hot Flushes

  • No refrigeration or freezing required. When worn, the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries.

  • Simple to Use: Just soak the scarf in water until the crystals have swelled completely, towel dry and use. Re-activate at any time by a short re-soak.

  • Dry Cooling Comfort: The special crystals in the back of the scarf when soaked in water expand and stay cold for up to two days without feeling wet.

• Creative cooling tactics.

  • “A hot water bottle with cold water freezing it is a great hack (as long as its in a soft cover). It stays cold all night unlike a physio cold pack (which are also good too).” - thanks

  • Fridge-cooled, unopened bottles of water in a pillowcase as long, cool packs at night.

  • Large gel pads and packs (used for sports injuries) are great for wrapping around your body. Check if it’s better to put them in a pillow case or towel instead of touching skin directly. An adjustable strap can keep it in place on your body, or you can simply lie with it on your chest.

  • I don’t recommend using ice-cube bags in towels. Once melted the water goes everywhere. Been there, done that!

Swollen Feet

There are several reasons why a foot/feet may be swollen. For my mother it was Deep Vein Thrombosis:

Microvascular damage and cancer activity in lymph nodes, means we can’t expect the swelling in one leg to reduce. It may continue to be larger than the other leg and foot. The reality: there are some adjustable sandals that she can wear but no rainproof shoes. When the swelling is like a puffed up glove, the top of the foot needs more space.

1. These are what I bought: shoes with a velcro-flap for an adjustable closure by FitVille.(UK store)

Only one foot is swollen, so I’ve used oversized insoles in the other shoe to raise the foot and pad-out the space behind the heel, as an interim solution.

2. Tina who publishes shared these two alternatives. Tina’s based in the US:

• He said this pair felt great on his foot, but he didn’t care for the thinner sole.

• He loved this pair, but had to wear socks with them because they rubbed on one of his feet. Dad’s right foot is larger than normal due to an old injury. But he wore them daily until they wore out.

3. I bought Skechers Hands-free slip on shoes ‘Bobs’ two years ago for myself. They’re super-comfortable easy to slip on and take off when my hands are full. I don’t think I’d go running in them, but I’ve worn them on fast-paced errands and walking everywhere.

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Gadgets and Innovations

1. A phone wallet case with an adjustable, cross-body carry-strap. This is such a handy buy (pun intended)! I don’t have to carry the phone around in my hand. It holds cards a few coins. If I didn’t have a huge number of keys a door key could fit in the snap-pocket.

   

2. A grabber stick with a magnet and rotating end.

   1. This avoids the need to bend down to pick things up, i.e decreases the risk of a fall

   2. Helpful for pickup up keys that have landed in a tight spot.

3. A sock putter-oner. If you've ever pulled a back muscle, you know how difficult it can be to wear socks. This makes things much easier

4. Button hook: Small buttons on shirts and blouses can be tricky to fasten. This makes it easier

5. Amazon has a section called 'Mobility and Daily Living Aids'- it's classified under healthcare in the UK shop. If you look at the left column you'll see various subcategories of aids.

6. We used Ability Superstore(UK mobility aids)

   1. Ultimate Buying Guide for 2024 - Top 10 Mobility Aids (July 2 2024)

   2. Ultimate Buying Guide for 2024 - Top 10 Bathing Aids (June 13, 2024)

   3. Did you know that if you or the person you're caring for has a chronic long term condition or illness, your purchase is exempt from VAT in the UK? VAT Exemption

7. Here’s an article of 10 Gifts for Chronically Ill People! A quick gift guide by . Worthwhile browsing for ideas! Thanks Luna Rose.

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Showering and shaving

1. Shower chairs and mobile aids

2. A neat idea is to put a bar of soap in a wash bag that acts like a loofah for exfoliation. An alternative to soap-on-a-string. This helps avoid accidents in the shower, from bending down to pick up the soap and falling over.

3. Some bottles of shower gel and shampoo are on hooks that can hang from rails, so that you don’t have to handle bottles.

4. Batiste Dry Shampoo, No Rinse Spray to Refresh Hair in Between Washes

5. Shampoo and conditioner Caps, No Water, no rinsing. 3 pk - Premium Rinse Free Shampoo Cap - Microwaveable with Conditioner & Vitamins, Nourish & Protect, No Water, No Parabens, Latex Free, Alcohol Free with 1 Pack of Limdo Gloves.

   These are easy ways to wash hair if someone has mobility issues, or dislikes lots of water. This is not the brand I used but it has better reviews!

   

   ,

6. Showering another person by

   “Showering another person, other than your child, is not a universal experience. In June, my mother with dementia fell and caused an irreparable tear between her rotator cuff and her arm. Here you can see her keeping the shoulder up. She cannot remember that she is unable to lift her right arm above waist height. A game changer.🥹

   Time to take action. Dementia delusions mean she believes she showers every day. This was not an easy mission. Is it dignified to stop bathing? Not an option. So here’s how it happens.”…Read more about their process here

   I showered Dad everyday in the evening, and helped Mum when she was going recovering from surgeries and chemo. Melissa’s process is similar to what we did. Gentle ‘clinical’ simple narration through familiar steps helped my Dad who had vascular dementia.

7. Shaving my Dad

   The easiest most convenient way to shave my Dad was using this Braun portable travel shaver. Features: AA Battery powered, foil with trimmer underneath, side trimmer that proved useful, safer for under his neck and around his adams apple and. I usually shaved him after a shower.

   The model we used MobileShave M-90 Shaver

   

   Or the MobileShave M-60 Shaver

   

Sleeping

1. A V-shaped pillow is a good idea for anyone who is coughing or tends to cough. This could be due to some accumulation of fluid in the lungs, a chest infection, or oedema (fluid) due to impaired heart function.

   1. Normal pillows will slide apart if you put them in a V shape, or they may be too soft

   2. I used to bend the ends of the inverted V so it would sit more easily and added normal pillows to embrace Dad. He'd slide down a bit as he fell asleep, but this way, he could drift off to sleepinstead of coughing and fluid building up.

Here's a video. I didn't buy this but you can see how the end sections support and embrace the user. "The V Shaped Pillow is ideal to give you extra support when sitting up in bed or while sitting in a chair. With three individually filled sections, with extra support in the centre section, the V shaped Pillow provides support where you need it.  It can also be used on your lap for working, feeding your baby or reading."

10 Best Sleeping Upright Pillow In The UK published 12 July 2024I think the batwing pillow looks the most interesting as it has all round support. However, I've not purchased any of these. Take a look at the different types

2. For Sleeping, 55 inch Full Body Pillow Long Pillows for Sleeping, Maternity Body Pillows for adults with Cover Velvet

   Bed rails are important when someone is frail, prone to falls or is becoming delirious. (see home aids). If the person you care for is frail, needs some support full body pillows can be a comfort. It’s flexible enough to completely encircle someone, or be used in a V shape, or inverted to raise legs.

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At Home safety

1. Resource/Tools: 'Home-aids' What's worked for us. Food for thought, not a promotion.

2. Handles and locks. A couple of times, just before he was diagnosed with vascular dementia, Dad went to the toilet on his own, locked himself in and couldn’t get out again. It was a scary hour or more, trying to cajole and encourage him to unlock the door. Soon after, we changed the bathroom locks and removed keys from doors. The bathroom locks look like the image below.

   This lock is a twist-turn knob on one side, and on the other side of the door is a grooved counterpart, that can be twisted using a coin. This facilitates privacy and the ability to open the door if needed. All our doors have lever-handles.

   

3. An old fashioned whistle on a string. It’s good on plane life jackets to call for attention AND at home! This worked with Dad, and I’ve given one to family friends where the wife was fainting and couldn’t get her husband’s attention downstairs.

4. Be safe lifting your loved one from seated position and around the house

5. Helpful tips and videos about what to do if you/your loved one falls on the floor. How to check for injuries and getting up with no one else around.

   If someone has fallen on the floor, it can be dangerous for them AND you to try to move them from where they are. Always check if they have pain in their joints, or if they are feeling nauseous or sick or dizzy.

   It’s a shocking experience and traumatic for us as caregivers. I’ve experienced this too many times. Always calmly insist on taking time to check their body and try to calm them if they’re agitated or scared.

   Remember, when someone is on the floor, they are often a ‘dead weight’ and you cannot simply lift them off the floor. You need some leverage and support.

   Here are two helpful videos with advice on how to get up from the floor after a fall. Remember: if you use a chair or any furniture, make sure it’s stable or against a wall. Don’t grab the chair, as you can end up back on the floor.

   Creative Ways to Get Off The Floor!

   Brad and Mike demonstrate 7 creative ways to get off the floor. (July 9 2023)

HOW TO GET UP AFTER A FALL - 3 BEST METHODS

Balance Rehab by Doug Weiss, DPT (January 15, 2024)

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In-Home camera

Here are three versions of in-home cameras

1. IPC360 is on Google Play OR IPC on Apple Store (UK) by Puwell Cloud Tech Ltd - I used this to check on my own apartment when I couldn’t be there most of the time. It could also be used to check on your loved one. You have an app on your mobile phone and can view the room. I used 2 cameras for the hallway-front door and the living room.

2. Ring doorbell and indoor home cameras and system. (UK, EU) I set this up in my parents home and as a motion sensor doorbell system. The cameras are effective. Bonus: when we had a visitor someone upstairs can hear/talk to someone at the door without moving. This also avoids the need to open the door to any stranger.

3. Amazon Echo Show 10 (newest model), HD smart display with premium sound, motion and Alexa, Charcoal (USA) AND Echo Show 10 (Newest gen) | HD smart display with motion and Alexa | Charcoal Fabric UK Version

   I’ve heard of this but not used it. It ties the camera with Alexa. I don’t have Alexa set up, it was too frustrating for my parents to use. However, this looks like a great option.

   shared her experience of using the Echo:

   We used the Echo a lot with my folks in very early pandemic when Dad didn’t want me in their home. Enabling “drop in” between my device and theirs allowed my to have video calls with Mom and reconnect a dropped call without her needing to do anything. It was a lifesaver for short calls when she was having a restless day and longer calls so Dad could do an errand or just to stay connected.

   Am has changed their privacy policy in US recently, which may affect user comfort level, but 4-5 years ago it helped SO much.

Wearable Safety Device

(UK) Sure Safe UK Personal Alarms system

• I’ve tried both the bracelet and the necklace with Fall detection and GPS. Both work well, but he bracelet can be a little heavy for some people and a little chunky.

• I’ll be updating this personal experience soon.

(US) Life Alert

(US) Bewell medical alert

Thanks to Olivia Pegula for sharing this:

BeWell Alert is a US-based wearable safety device for older adults or people with health concerns. It includes fall detection, GPS, and connects to a 24/7 response center.

What stood out to me is that they offer free setup and evaluation with no obligation to subscribe, which made it much easier to try out and discuss with my relative.

It’s not just an app — it’s a pendant with a button, and some versions detect falls automatically. There’s also an option for regular check-in calls, which adds a human touch.

When I introduced it, I emphasized it as a way to stay independent but with backup — that helped the conversation go smoothly.

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Cleaning and Messes

• Steradent tablets are good for dentures but they’re also good for urinal bottles, cups, drinking bottles. When a Steradent tablet is placed in water, it dissolves and thousands of tiny oxygen bubbles ‘scrub’ and kill bacteria

• For the poonamis or shituations:

  • Dr Beckman carpet stain remover,

  • Vanish Oxi Action (clothes and carpets).

• The ‘lasagne bed layering up’. It takes a little while to prepare the bed this way but believe me, in the middle of the night this makes things a LOT easier.

  • Preparation. When the person you care for is sitting elsewhere you can prepare the bed with multiple layers:

    • Waterproof mattress protector with old sheet

    • Large disposable bed pads, fitted sheet over (its a personal preference whether they can sleep directly on the pad or not)

    • Another layer of pads and fitted sheet.

    • I usually had 3 layers under Dad. When the sheets are layered up, you only need to remove the soiled sheets.

  • In this video Nancy shows how to Change the bed with someone in it.

    • remember that for your safety you’re not lifting or carrying someone. There are always ‘how to’s’ to avoid your injury. In the video, Nancy has Bedrails and slidesheets.

Caregiver Success by Nancy the NP (March 24 2019)

If you’re a new caregiver, you will eventually need to make a bed with someone in it. Here’s an easy way to make a bed while keeping your patient or loved one comfortable. You will learn in this video: how to talk to the person to help you with proper positioning, how to use good body mechanics to prevent a back injury, how to make making the bed an enjoyable experience.

Outside, Away from Home

1. AirTags I haven’t needed to use these, but I know caregivers who put these in their loved one’s pocket or bag so they can track where they are. This could be a subtle solution to keep an eye on loved one’s with dementia.

2. Wheelchair bags and pouches can be fixed at the back of the wheelchair. (e.g. Amazon). I prefer to use a small bag/backpack that I carry

3. Beware that you’ll need a waterproof poncho/blanket to cover the user and around the chair in the rain. Otherwise, the seat and their bottom will get wet. (A coat may not be big enough.)

4. To warm up hands and toes. Hothand’s warmers. I recommend putting them in a small pouch and avoiding direct contact with the skin if you’re sensitive or thin-skinned.

5. Don’t forget: fingerless gloves and woolly hand muffs are good for someone sitting in a wheelchair, to keep both their hands and legs warm. If I were handcraft-y, I’d make them!

6. Wheelchair 'Driving' and two videos that I found useful from the NHS (Leeds Teaching Hospitals NHS Trust)

If we were at a kerb with no ramp, I would go down backwards with the wheelchair to ensure there was no tipping forward in our Transit Wheelchair. I would go forward up the kerb.             

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? This Anthology was started in February 2025.

World Cancer Day, February 4th

CLICK HERE to learn more about the campaign and its organisers. #UNITEDBYUNIQUE #WORLDCANCERDAY

"The new World Cancer Day theme 2025-2027 “United by Unique” places people at the centre of care and their stories at the heart of the conversation."

Everyone has an important role: patients, loved ones, caregivers, friends, neighbours, practitioners, researchers, advocates, and allies.

Table of Contents

**Click the lines on the left of the screen (desktop version) to see the Table of Contents as you scroll through the Anthology. Hover your cursor over a title and click to go to that section.**

Anthology of Cancer Experiences

1. Adult cancer experiences

   1. Breast Cancer

   2. Cervical Cancer

   3. nonHodgkin’s lymphoma

   4. Lung Cancer

   5. Ovarian

   6. Colorectal

   7. Prostate

   8. Squamous cell carcinoma of the tongue

   9. Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.

2. Child/childhood cancer experiences

   1. Osteogenic Sarcoma

   2. Leukaemia

   3. Rare form of paediatric cancer

   4. Neuroblastoma

Our Recommendations of Organisations (including support for children) and Books

Anthology of Cancer Experiences

“Why I’m curating A Cancer Anthology”: iCARE about Cancer.

The authors/creators who are subscribers of the Carer Mentor Community have kindly agreed to let me share a few of their chosen articles to expand this Cancer Anthology. The original World Cancer Day collaborators have shared a short introduction about their cancer experience.

The anthology has evolved to include other writer/creators and their publications. I’ve written short introductions to their publications and shared articles that have resonated with me that I believe will benefit other members of our community.

An intention and disclaimer. The anthology aims to share unique voices and experiences, offer insights and recommendations, and ensure that anyone on a cancer journey (everyone, not just the person with the cancer) knows they are not alone. The Carer Mentor publication aims to network empathy and inspiration; a hub of resources, a portal to other like-minded souls human-ing hard.

The information here is not a substitute for medical advice. Please seek medical support or ask a healthcare professional if you have specific questions about your cancer/symptoms or if you have worries or questions about a loved one/friend.

Back to Table of Contents

1. Adult cancer experiences

Breast Cancer

Emma Vivian writes Attempts at Optimism by Emma Vivian.

‘I survived aggressive breast cancer at age 29. My childhood best friend, diagnosed the same year, did not. In this piece, I reflect on how writing helped me overcome survivor’s guilt. ‘Welcome to ‘Attempts at Optimism’

Five years after losing my breasts at age 30, I reflect on how the loss shaped me and changed the way I view my body. Five Years Ago, I Lost My Breasts’

Kristina Adams Waldorf, MD writes After He Said Cancer about how her family continue to navigate through her husband’s breast cancer.

How It Began. This story is the origins of my Substack publication and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis.

That Ribbon. This chapter delves into my emotional response regarding the gendered stereotype of breast cancer and who it leaves out of the narrative.

writes My Big Fat Cancer Plot Twist. She says, 'I’m a British writer diagnosed in December 2024 with triple-negative breast cancer. Writing is how I process things – and I really wanted to create a real-time diary that would also explain cancer honestly, but with humour, too. Chemo, surgery, jargon can all be so intimidating – I’m aiming to humanise it for everyone affected by that bolt-from-the-blue moment that begins with diagnosis.’

So in Meet my Brussels Sprout I share the details of my diagnosis just weeks before Christmas – a tumour in my lymph node the size of a very un-festive Brussels Sprout – and explore how daunted I feel about what lies ahead but also my consultant’s advice to embrace the treatment and keep on running…

And a month later, in So What’s Chemo Really Like? I explain why chemo isn’t like the movies – and why that’s seriously good news! It’s more boring and less disruptive than I expected. I reflect on how the stories we tell shape how we feel about challenges in life - and share the tips and little luxuries that make my weekly infusions more tolerable.

I don’t yet know what the ending will look like – I’m angling for a happy one – but I promise to give you all the twists in my real-life drama.

December 8, 2025, shared a montage of images from her last 365 days, a year since her diagnosis: 365 days on the mountain Frozen, terrified, amazed - and ready to party!

August 10, 2026 “Sting in the tail: why I’ve written about the miracle cure that nearly killed me. And would I still have taken immunotherapy if I’d known then what I know now?” by Kate Harrison.

Kate, Thank you for writing this balanced, personal experience to raise everyone’s awareness. In Kate’s words:

Not moaning but awareness-raising

Just to be clear, I am seriously grateful to be alive to be able to talk about this. But not everyone understands why immunotherapy is different from chemo.

I recommend reading Kate’s article (FYI, Kate’s based in UK)

My Big Cancer Plot Twist

Sting in the tail: why I've written about the miracle cure that nearly killed me

Look at me in The Mail on Sunday yesterday - I’m writing about the immunotherapy drug that helped see off my cancer but also nearly killed me and still affects me every day, seventeen months after my last dose…

Read more

13 days ago · 23 likes · 14 comments · Kate Harrison

writes “2x cancer survivor | writer | fitness enthusiast | Texan living in Alaska”

I recommend reading Flat or Bust Coming To Terms with New Me After Cancer. I love her attitude! Victorious Val has recast and vilified cancer into the character of ‘Doug’..an inspired reframe!

Like a typical ex, and after a ten-year separation, Doug returned in 2021. To get you up to speed, Doug is the name I gave to breast cancer in 2011 when I was first diagnosed. After uttering the phrase my cancer for the hundredth time in the first two weeks, it made sense to call him Doug instead. First, I realized cancer wasn’t mine. I did not own it nor did I want to. And second, it didn’t own me either. Over my dead body.

writes Jenny’s Dying to Live. 'Diagnosed with terminal cancer —if you accept the diagnosis but not the prognosis and want to live genuinely and joyfully, we could be friends.'

I’m drawn to Jenny’s writing because I feel deep resonance with each of her articles. Here are the opening lines of her article ‘I’m not a positive person’

“In my writing about living and finding meaning after a devastating diagnosis (in my case, stage 4 breast cancer), my readers often comment with, “You’re such a positive person.”

I’m not actually a positive person. Let me rephrase that — my goal is not to be a positive person.

My goal is to be a mentally healthy person.

Although it sounds great on the surface, “positivity” can easily cross a line into toxicity.”

How Humor Got Me Through My Father’s Death (and my own cancer diagnosis)

Whatever is going on in your life right now, I invite you to remember to laugh. Break out into a broad grin, giggle, snicker, or bust a gut. Laugh til you cry. Pound the arm of the chair you’re sitting in. Life — as long as we have it — is for the living.

Both articles underscore Jenny’s publication premise —if you accept the diagnosis but not the prognosis and want to live genuinely and joyfully, we could be friends.

Thank you for this article, : A New Phase of Healing And it’s not real fun. (Published January 8, 2026) Your way of keeping your heart open to feel the yucky feelings to wade through the difficult, and still feel the joy, is heartening—not just for those with cancer but also for other caregivers like myself.

“And more important than what I’m doing is how I’m being — I remind myself that I am a committed person, a resilient person, and a resourceful person. Use your own adjectives, but being clear about the kind of person I am (my identity) is what enables me to do the things that help me feel the way I want to feel.”

It’s an important message for all of us! Thanks, Jenny.

writes Life. After. Life. about grief and losing his beloved wife, Heidi, to breast cancer.

"On World Cancer Day, I want to remember this incredible human being who shared her life with me." John generously shares a video his wife made during her chemo session. This link will take you to a note with the video.’

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Cervical Cancer

writes WordDance and is a stage 4 cervical cancer survivor AND breast cancer survivor. Two separate cancers six years apart.

‘I have survived divorce, cancer and all the things that come with raising three children on my own. These experiences have taken me into the darkness on a winding journey towards the light.’

I’m sharing the two key articles from her publication where she shares her cancer experiences. I’m merely stating some facts about her experience; I highly recommend reading these articles.

When you read her articles, you’ll appreciate her words' humble wisdom, beauty, dance and poetry.

No Regrets Staring at Death Helped Me See Life Instead

I didn’t just arrive at this goal by chance. On April 7, 2016, I had a life-changing experience that put everything into perspective. I was diagnosed with stage 4 cervical cancer. I was told I could expect to live for two years—up to five at best. The diagnosis knocked the wind right out of me. I remember walking around feeling like a zombie hoarding this terrible secret. I’d look around at strangers in the grocery store and think, They don’t have this burden. They’re so carefree, just going about their day with their whole lives ahead of them.

…Then, in October 2022, a CT scan showed “dense tissue” on one of my breasts. My oncologist insisted that I follow up with a mammogram, the results of which required further testing. In December, a biopsy revealed that it was breast cancer.

On Ephemerality The beauty is in the knowing and accepting the invitation to savour it all.

nonHodgkin’s lymphoma

Jeannie Moloo writes about the gaps in cancer care, her late husband’s experience of nonHodgkin’s lymphoma, and her own experience of Breast cancer.

In Beyond the Cure, I explore how curing and healing, while interconnected, are also distinctly different. The article reflects on my personal experience as the caregiver for my late husband during his struggles with non-Hodgkin's lymphoma and how embracing healing earlier might have allowed us to take greater control of our situation over the 12 years rather than feeling defined by the cancer.

A Critical Gap in Care highlights my top five recommendations for how cancer centers can step up to help make the caregiving experience more manageable and supportive. From communication to emotional resources, these ideas are rooted in my personal journey and what I wish I had access to during my cancer caregiving and treatment years.

Alone in the Shadows is about helping caregivers, patients, and families connect through difficult times.

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Lung Cancer

Mel Erwin writes My Lovely Lungs about living truly living with stage 4 lung cancer. Lung cancer is the biggest cancer killer of men and women globally and increasingly affects younger people and non- smokers. Mel lives with va-va-voom and writes about diagnosis, treatment, her cancer tribe, integrative care and above all, love.

I wrote Signs of Life on Planet Cancer in a painful week when we lost two young, beautiful souls from the global, young lung cancer community. I see us all as fellow cancernauts on this planet we did not ask to be landed on. We offer solace, empathy, knowledge and humour to one another.

Doing cancer queerly - Gay, straight, lesbian, transgender, non-binary, bisexual, intersex, queer, no label or all the labels. It is remarkable to be human. Be curious, stay connected, be kind with or without cancer.

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Ovarian Cancer

Jennifer Garam writes Rebuilding With Jennifer Garam and Jennifer’s Website & Blog where she writes about her recovery from ovarian cancer.

I’m also a BRCA1-positive ovarian cancer survivor, breast cancer previvor, and women’s health advocate — if you’re interested in or impacted by cancer, or know someone who is, I publish articles for cancer patients and survivors and their caregivers on my personal website’s Cancer Blog, which you can read here.

My Ovarian Cancer Diagnosis: Where It All Began What I remember from the week I was hospitalized and diagnosed with stage 3c ovarian cancer.

Reconnecting With My Purpose After Cancer How I found my purpose after being diagnosed with cancer — and how I'm trying to remain connected to it in survivorship amid the obligations and challenges of day-to-day life.

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Colorectal Cancer

Janine Cutting writes about life beyond her colorectal cancer.

Cancer experiences do not usually end after the last treatment. As a matter of fact, many cancer patients go on to develop troublesome mental health symptoms. For me, at the end of a year of radiation, surgery and chemotherapy treatments for stage 3 colorectal cancer, my recovery was just beginning. We must allow recovery time to restore a healthy balance of mind, body and spirit. You can read about my experience here: Recovery Time. Giving Oneself Gentle Permission to Heal and Seek Support is not Easy in our Culture.

Many people develop fears of recurrence after cancer treatments have ended. Learning how to manage these fears in a supportive way is so important, as they can vastly impact well-being and healing. In this article, I write about my own process of overcoming “The Question of Recurrence”

writes about his battle with colorectal cancer and the physical, emotional, and psychological toll it took on his life.

Mikel has a clear mission in publishing his experiences: ‘The purpose of my Substack newsletter is to increase awareness of colorectal cancer and motivate people to get colon cancer screenings beginning in their 40s and continuing into their 80s.’

Here’s a clear call to action in his article: Declining a colonoscopy at age 76 was my tragic mistake.

“Why am I sharing my personal experience with colorectal cancer? Because I hope nobody in my family or among my friends experiences what I have. The same hope extends to people I don’t know.

I hope you will get screened for colorectal cancer regularly if you are over 45 EVEN IF YOU HAVE NO FAMILY HISTORY OF CANCER AND NO SYMPTOMS. And continue screening even after age 75.

You don’t want to experience advanced-stage colorectal cancer. Trust me.”

Colorectal/Bowel Cancer Awareness month is in April:

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Prostate Cancer

writes AnthonyFeig's Substack Have You Seen My Prostate? where he says "I'm on the other side of prostate cancer and I write funny stories about that." This is the real deal—simple, incisive (pun intended) and ouch!

When My Man Part Got Sick. A cancer story told entirely in one-syllable words and dumb drawings

I'm a cancer guy? Face to face with two grand misfortunes: An incurable, potentially life-threatening disease, and having to call Blue Cross when they are Experiencing An Unusually High Volume of Calls.

writes about Prostate Cancer and the bits they leave out.

Why did I write Well this is shitty news? Easily answered, because getting diagnosed with prostate cancer is exactly that, shitty. But instead of keeping it all to myself and spending a small fortune on therapy, I thought that I would share the raw, real, and sometimes ridiculous side of this journey. If you or someone you love is facing this, you’re not alone. Give it a read, share it, and let’s talk about it.

The cancer journey doesn’t always end when the initial treatment does, in my case there was regular blood tests, the waiting, and the nagging ‘what ifs.’ I wrote So is 'it' still there? to talk about the part no one prepares you for. If you’ve been there or know someone who has, give it a read, share it, and let’s talk about it.

writes Guy with Cancer

I appreciate how Guy shares all the details of his treatment and chemo. Facts, blood tests and all. For example in Chemo-2, Control, and Knife Crime Guy walks us through the cycle. I appreciated his straightforward confession:

“This is all a very overt personal mission to be as in control of my life as possible. Yes, absolutely I am trusting the medical profession, taking their advice, attending every appointment, taking the treatment (after doing my own diligence to confirm they are giving me the best possible advice, which so far as I can tell, they all are). But if I just hand myself over to that, and the rest to work demands, my morale and more general health will suffer awfully. I have to control as much of my life as possible - and this last couple of weeks has been all about finding out how best to do that.”

interviewed Guy: Talking prostate cancer with Guy Gratton: Diagnosis, treatment & the road ahead. To get general anaesthetic or not is a question I’ll be posing to my friend! Thanks for this interview, Mark and Guy.

In this conversation, I sat down with Guy Gratton, a fellow Substack writer and cancer patient, to talk about his diagnosis, his current treatment plan (including chemotherapy) and what he's learned along the way.

A new article by A Year and a Bit. 2026 January 7th. Thanks to Guy for allowing me to share this ‘update’. It’s an uplifting read (you’ll understand the pun once you’ve read his post!). He’s had numerous achievements last year…

“None of which is particularly front and centre in my consciousness. The only success that really matters for 2025 is beating prostate cancer. I’ve gone from somebody with stage 4 cancer, a deformed prostate and tumours right through my pelvis and torso, to somebody whose blood tests are coming back with the magic word “undetectable”. Nothing else really matters does it.” - Guy

I recommend reading about how he used his celebration to raise awareness and enable 50 men to get PSA tests!

writes “The Wilds of Cancer: A Journey is the working title of my next book. I want to try something different before I publish this one. Over the coming months, I’ll release via Substack selected chapters from the book’s final draft. “

1. Into the Wild The Journey Begins

“My shoulders sagged, and my stomach tightened as he described how the biopsy revealed prostate cancer cells with varied degrees of aggressiveness. One set of cells was not very aggressive. One was medium aggressive. But a very aggressive third set concerned him. And that concerned me.”

30. The Jiggle Water, Water, Every Day. There are lots of interesting details that others may be interested to learn about here.

‘Prone on the radiation machine’s table, I awaited the start of my tenth treatment. As I nestled my feet and calves into the custom-made bean bag designed during a planning session three weeks earlier, I recalled that session, which began when a nurse entered the room, handed me a mug filled with water, and said I needed to “chug the mug.”

I read this article by Rick and it reminded me about some of the dreams my Dad had - different health issues, and not prostate cancer but this eerily resonated. 31. Dreams and Cancer Nighttime Battles

writes Hans Casteels’s Nutmeg’s Substack

I explored Hans’ articles about Prostate cancer, smiled at his sarcasm and dry humour, and subscribed because of this article, ‘The Wives Club’ an appreciation for his wife’s role as an unpaid caregiver, the second patient on the journey. I’ll be adding this to the Carer Mentor Cancer Anthology.

When a man is diagnosed with prostate cancer, there are two patients in the room. One has the biopsy slides; the other has the handbag. The one with the slides is fragile, hormonal, and suddenly convinced his trousers have become the main stage of medical tragedy. The one with the handbag is calm, competent, and quietly doing the arithmetic of pension, mortgage, and life insurance. The doctor addresses the man. The wife listens, takes notes, and later explains what was said. She is the translation service, the chauffeur, the pill-counter, the emotional sponge. And no one applauds her.

Read his letter to his wife and the rest of the article here

February 4th, 2026 has written this article for World Cancer Day:

February 4th: International Cancer Day. Congratulations, You’ve Discovered Cancer: A One-Day Festival for a 365-Day Disease. By Hans Casteels, reluctant lifetime member of the oncology loyalty program (no free coffee, no points, no exit).

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Squamous Cell Carcinoma

writes Everything Is An Emergency. I’m sure you'll be as drawn to her writing as much as I've been since day one. Bess is an emergency medicine doc and writer. She is the wife of Jake Seliger, and mother to the beautiful Athena, who was born shortly after Jake passed from squamous cell carcinoma of the tongue. Bess writes about life, cancer, death, love, health, and healthcare (“health” and “healthcare” being distinct).

Cancer Speaks Its Own Language How we spend our words is how we spend our life. What happens when you find yourself speaking a language the people you're closest to don't understand? Is it possible to bridge the unbridgeable gap?

How to let go: one life ends while another begins I'm seven months pregnant with our daughter as Jake's life comes to a close. How do I walk into an uncertain future without him?

Cholangiocarcinoma. A rare, aggressive cancer in the bile ducts.

• writes Along Came Cancer — “a space where I write about what it’s like to juggle life as a mom and a cancer caregiver. This is where the realities of treatment plans, toddler tantrums, and the emotional rollercoaster of both collide.”

I recently connected with Tori, and I’m sharing her articles because THIS is why we need community and connection.

Welcome to Planet Cancer One diagnosis, a whole new planet.

My husband has cancer. The father of my toddler. My best friend since high school.

I’ve read the stories before — young person, rare cancer, blindsided. I always thought that won’t be us. We’re healthy. Informed. Supported. But it was us.

Two weeks ago, we were living a normal life. Toddler chaos. Work deadlines. Groceries. Date nights. Then came a dull pain under his ribs. Maybe gallbladder? Something antibiotics could fix, we thought. But instead, we got tumors — multiple, grapefruit-sized.

Biopsies and Chicken Tenders. Caregiving, community, and the strange (chicken) tenderness of Planet Cancer.

And then suddenly, a girl, probably around my age, sat in the chair next to mine. She, too, was there for a biopsy and also had cancer. She looked over at me and, without hesitation, asked, “Do you want a chicken tender?” Before I could answer, her mom—who had been sitting quietly nearby—came over and hugged me. This moment—quiet, odd, unexpectedly intimate—has stuck with me.

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2. Child/childhood cancer experiences

Osteogenic Sarcoma

writes Disability and Rizz about her childhood cancer, osteogenic sarcoma.

Nerisa courageously shares her heart wrenching experience about The First Steps Into the Unknown: My Early Days with Childhood Cancer. The Day My World Changed: A Cancer Diagnosis at 10

Leukemia

writes Writing Elizabeth where she chronicles her family's post-cancer life in the aftermath of her daughter's leukemia.

In Reaching Through the Dark, I reflect on my daughter’s leukemia diagnosis and the emotional weight of her treatment. Visiting an art exhibition featuring works by Suleika Jaouad and her mother Anne Francey, I confront my own unresolved grief, finding parallels between their creative expressions of illness and the ways my daughter and I processed our shared nightmare.

In the Shadow of Relapse, I explore the emotional toll of living with the lingering fear of relapse as I navigate the tense hours awaiting my daughter's blood test results. I grapple with both hope and dread, reflecting on the ways humor and love can coexist with the persistent shadow of past trauma.

Rare form of paediatric cancer

writes . “Jacqueline is a freelance writer and essayist located in New York’s Mid-Hudson Valley. Her essays on grief and parenting have appeared in The Washington Post, HuffPost, Modern Loss, Al Jazeera, Pulse, Longreads, and more."

I recently found Jacqueline’s publication. Her article ‘My Daughter's Palliative Care Doctor Gave Me Permission to Hope. Hope, by its very nature, is never false’

When I read your article, Dr Waldman offered a new perspective that soothes the soul. It reconciles my need to be ‘practical’ and allows ‘hope’ to stay with us—less struggle. Both. AND. It’s okay to have both together. It’s paradoxical, yet so wonderfully human– our capacity to know stark facts and still hope.

Jacqueline says, ‘The news of the LA fires inspired me to write this essay and revisit this idea of "false hope" and Dr. Waldman's advice. He was a lightkeeper when I desperately needed one. I hope his words will resonate for readers as much as they did for me.’

“One of the most wonderful and amazing attributes of the human soul is the near impossibility of crushing all hope. This is a gift. I don’t know if it’s God, or nature, or evolution, nor do I care — it is a beautiful and vital part of what makes us human.

We have actual published data that people (patients and parents alike) can (and want to) hear frank, stark information about their prognosis, are able to internalize the fact that they are going to die of their disease, and yet still simultaneously maintain some sort of hope.

This often befuddles clinicians, and I am often called to help because a parent or a child doesn’t “get it.” I find myself in those situations explaining to my colleagues that the ability to simultaneously grasp one’s own mortality while still hoping for something is one of the beautiful paradoxes that makes us human and that allows us to function.” — Dr. Elisha Waldman

I’d encourage everyone to read the full context of these words in Jacqueline’s article.

Neuroblastoma

writes Toeing the Golden Line with Taryn Jarboe. When I read Taryn’s articles, my heartache wrenches, and yet I’m compelled to read on— to sit alongside her and June and to be part of the soulful howl and tragic beauty in Taryn’s words.

Who I Became After My Daughter Was Diagnosed With Cancer “The only thing I can do is be June’s mom. I am just June’s mom.” The introduction paragraph quoted:

Our daughter June began chemotherapy when she was eight-months-old to treat a highly aggressive pediatric cancer called neuroblastoma. After her diagnosis, slowly, slowly gone went my identity. I became no one to society. I still had my nursing license, but I’d stopped working the day we found out June had cancer.

The Days We Spend in the Chair. Bedtime with my children is more of a ritual than a routine. This quote stayed in my mind for a while:

For some awful reason, and one which brings me so much guilt, those objects also remind me that it’s easier to love June at times than it is to love my living children. When I acknowledge that I have been giving June too much of my brain and my body in one day, I return to the beautiful babies in front of me. Sometimes the lines, however, are blurred between them and her. Sometimes their mannerisms are identical to their sister who is gone or one of them gives me a look that’s strikingly June.

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Our recommended organisations (UK, USA and Canada).

OUTpatients: The UK’s only LGBTQI+ cancer charity led by LGBTQI+ people affected by cancer

Roy Castle Lung Cancer Foundation: support and information for everyone affected by lung cancer

Oncogene Cancer Research (UK): a charity focused on research for mutation driven lung cancers and information for those affected

EGFR Positive UK: a patient-driven charity committed to providing information and support for EGFR-mutated lung cancer patients and their families.

Maggies (UK): Everyone's home of cancer care

Macmillan Cancer Support (UK). 'Because cancer can affect your life in so many ways, we do whatever it takes to give people the support they need.' Macmillan provides medical, practical, emotional and financial support to cancer patients, their carers, friends and family. Phone: 0808 808 0000

Tackle Prostate Cancer (UK) ‘We are the only patient-led, UK-wide charity representing people with Prostate Cancer and those who care for them’

CarersUK page ‘Caring for Someone with Cancer “A cancer diagnosis can come as a huge shock for family members as well as the person with cancer. To help support those throughout their journey, [Carers UK] have compiled caring tips and information from some leading charities that can offer help.’

BBC Action Line List of UK Organisations for Information and Support ‘If you, or someone you know, have been affected by cancer, the following organisations may be able to help.’

Metavivor (US): METAvivor is dedicated to the specific fight of women and men living with stage 4 metastatic breast cancer.

Young Survival Coalition (US): Young Survival Coalition (YSC) strengthens the community, addresses the unique needs, amplifies the voice and improves the quality of life of young adults affected by breast cancer, locally, nationally and internationally.

Stupid Cancer (US): Stupid Cancer, a nonprofit, is the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health and social media.

The Breasties (US): for those impacted by breast and gynecologic cancers

"You, Me and the Big C" podcast Janine says “I listened to this podcast on my 5 hour drives back and forth to the city for treatment. Dame Deborah James has since passed away from stage 4 colorectal cancer, and she was a beacon of light during my experience. I loved the way she infused so much of her advocacy work with humour.”

The Canadian Cancer Society: “We offer a nationwide support system for people with cancer and their family, friends and caregivers. Access free programs and services that can help manage life with cancer, including our supportive online community, our online and phone-based information specialists and much more.”

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For the care of children

Alex's Lemonade Stand We’re changing the lives of children with cancer by funding impactful research, raising awareness, supporting families and empowering everyone to help cure childhood cancer.

St. Baldricks Foundation The St. Baldrick’s Foundation is a volunteer and donor powered charity committed to supporting the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

The Children's Oncology Group The Children’s Oncology Group (COG) a member of the National Cancer Institute (NCI) National Clinical Trials Network (NCTN), is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. COG unites over 12,000 experts in childhood cancer at more than 220 leading children’s hospitals, universities, and cancer centers across the United States, Canada, Australia, New Zealand, and Saudi Arabia in the fight against childhood cancer.

Recommendations by “Following are resources that may be helpful for parents caring for a child whose parent is dealing with cancer or who has lost a parent to cancer.”:

Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.

National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.

The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.

CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.

Other organisations

Macmillan Cancer Support Website. Cancer statistics in the UK

Macmillan Cancer Research studies data and funds research to understand the lived experiences of people living with cancer and to improve outcomes and services.

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Our Book Recommendations

Dr Susan Love’s Breast Book By Susan M Love (Jan 1, 1990)

The Year of Magical Thinking. By Joan Didion (Sept 1 2005)

The Untethered Soul by Michael SInger. (Oct 3, 2007)

Read more:

Human-ing alone is hard. You are not alone.

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In our ‘Letters from a Caregiver’ Collaboration, a caregiver-author offers wisdom, compassion, and hope to their younger self.

No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Uncover the wisdom and insights of the previous 34 letters.

The Autumn 2025 Letters from a Caregiver Series:

1. Introduction and letter to my September 2017 self by Victoria

2. ‘Acceptance With Grace’ by

3. ‘Strength in Vulnerability; Growth from Adversity.’ By

4. “Changes beyond my control but agility beyond my imagination,” by Victoria

5. “From The Other Side Of The Story.” by

6. “Healing Comes in Many Forms: Honoring our Sacred Contract” by

7. ‘Blessings in Disguise’ By

8. ‘Find The Joy’ By

9. ‘To love life even when you have no stomach for it’ By

10. Connecting with Empathy and Compassion. ‘Letters from a Caregiver’ Autumn Series Finale by Victoria and

The Winter Season 2025/6

1. The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria

2. ‘You Each Deserve Your Own Life’ By

3. ‘Relearning Hope In A Time Of Darkeness’ By Victoria

4. ‘Having Compassion for Your Earlier Self’ By

5. “Grasshopper, you are the expert” By

6. ‘You Published Your Book! And Now What?’ By

7. ‘The Light We Carry’ By Victoria

8. ‘It’s Not Her, It’s The Disease’ By

9. ‘The Gift Of Self-Compassion For The Caregiver’, By

10. “When the Waves Keep Coming: Trust Yourself” By

11. “The Hardest Decision You Ever Made Was the Right One” By

The Spring Season 2026

1. “Misunderstood, and everyone has an opinion,” By Victoria

2. “What It Takes To Embrace the Life He Has “ By

3. “The Long Road Home for a Different Kind of Future” By

4. “Grace, belatedly..…Becoming the daughter she needed” By

5. “Caring to Love.” A Letter to My Younger Self By Kirbie Earley

6. “My caregiving journey is a family healing journey” By Viva Mogi, MPA

7. “The Love Test” by Echoes of Memory by Sally Cave

8. “Nothing and Everything Will Prepare You for This Moment” By Brittany Carroll

9. “But You Will: A Letter to My Younger (Suddenly) Caregiver Self.” By Tina Matras.

10. “Leave It in That Room” By

11. “Stay Hydrated” by

12. “Caring and Being ‘Difficult’” by

The Summer Season 2026

The articles so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By

4. “You Thought You Had to Choose” by

5. “I Can’t Do This Any More” by

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen

7. “The Little Things You Do Are a Big Deal” by

8. “When Wishes Come True” by Cindy Roman, who writes

9. “Accept Caregiving Help When You Can” by

10. “A Map Already Torn” by

11. “You Are Still in There” by

12. “Becoming The Mom I Didn’t Know I Could Be” by

13. “Finding My Way Back to Me” by

If you’re new to Carer Mentor: Empathy and Inspiration, start with this article:

Or if you’re a caregiver seeking some practical tips and help with caregiving itself, check out this rolling list of ideas:

Please like ‘❤️’ the article to guide others here.

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The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️ Start exploring here.

When I read “Who Cares: The hidden crisis of caregiving and how we solve it” by Emily Kenway in 2023, it immediately became one of my Top Ten Annual Re-Reads:

Since its publication, Emily has been interviewed and written several pieces for The Guardian newspaper about care, carers and social policies.

Many thanks to for all the work and advocacy she’s doing for unpaid carers, especially in the UK, and caregiving.

In this article you’ll find

1. My short review of her book

2. Links to The Guardian articles by Emily Kenway that I’ve read.

3. Videos and interviews with Emily Kenway.

Why “Who Cares: The hidden crisis of caregiving and how we solve it” by Emily Kenway is a must-read for carers

For the very first time, one book has managed to neatly articulate and expose the realities of being a carer. It’s not about ‘how to do caregiving’. This is about the carer.

It is truly disturbing to read all these truths about what I have been through and what I continue to experience, fully stacked, compounding, and resonating so loudly. A thorough evidence-based approach to kin-caring.

I read this book in July 2023. It was a compelling page-turner for me because it forensically referenced and laid bare the reasons behind the state of caring today.

Plus, I wanted to discover potential solutions that could enable us to be seen, valued, and embraced, not marginalised in society.

I encourage you to read it for yourself, whether you’re a Carer or not. A key read for me was ‘Chapter 4 On Family: Wise Women and the Practice of Kinning.’

Each truth is treated with care, especially when explaining the injustice, the history and societal conditioning. Emily weaves in her own experiences of caring for her mother (who was suffering from cancer & receiving treatment).

Statements encompass more than one country, more than one opinion, and many meaningful references. She presents each point logically, substantiated by evidence and historical facts.

The narrative's eloquence guides our education and highlights how people's views differ and why each carer’s experience is unique. It offers irrefutable, heart-sinking, corroborating insights.

As a Carer, will you feel vindicated, enraged or frustrated at the compounding stack of injustices?

For those who are not yet caregivers, the book provides an important bridge towards understanding the struggles and challenges of what could lie ahead, and why you may feel conflicted about embracing the term ‘carer.’

This book enabled me to mould my ideas for this Carer Mentor website and publication. Until I read it, I’d found a complex web of maddening reasons for why things are the way they are. As soon as I researched one thread, numerous others would complicate the picture. I couldn’t get my arms around it all, research it or lay it out to logically see the interwoven picture.

Emily Kenway’s forensic research exposes irrefutable evidence and reveals the historical stepping stones so everyone can walk the whys and hows of how we got here.

While I hope that governments and policymakers act quickly to achieve meaningful, long-term social change, I have greater faith in how one or two people can help and support each other. We can build relationships and a sense of community locally. Intergenerational friendships and neighbourly support, checking on each other, getting shopping, picking up prescriptions…this is how we can act locally to build community.

Carer Mentor: Empathy and Inspiration is for those of us who are caregiving today. It’s a hub of resources and ideas that anyone can access whenever they wish. It’s a portal connecting people and other publication communities, as a community support network. Every care situation is unique, but no one needs to feel alone.

The Amazon review on the UK website:

A ground-breaking book lifting the lid on the hidden side of the ‘care crisis’ - helping us reimagine our world to put caregiving at its heart

Deftly blending memoir with forensic research and the voices of caregivers from as far afield as Norway, Nepal and Nebraska, Who Cares is an essential read for anyone who has ever cared for, or will receive care from, another person - which is to say, for everyone.

Prompt for discussion:

Have you read the book? What was your most thought-provoking takeaway?

The Guardian articles

• May 21, 2023 ‘Care bots’: a dream for carers or a dangerous fantasy? Robots that can assist caregivers have been talked up as being transformative. But some researchers fear such technology could take more than it gives. By Emily Kenway

• June 30, 2025 Carers like me connect patients and doctors – so why are we so often made to feel invisible? People looking after loved ones struggle to be heard by health professionals. Yet without us, the system would collapse. By Emily Kenway

• August 4, 2026 What if older people refuse help outside the family? This is the taboo that could wreck care reform. Many fear losing their independence if they agree to care workers looking after them. Any social care review must take this on board. By Emily Kenway

4 interviews Emily did around the time of the book launch

The Fearless Caregiver April 30 2023

Carers UK June 2023. July 14 2023 (Where I was first introduced to her work)

The hidden crisis of caregiving and how we solve it | Emily Kenway | Humanists UK Convention 2023

In conversation with Head of Humanist Care Clare Elcombe Webber, writer and activist Emily Kenway uses in-depth research and the stories of real carers to explore what care is like today, and outline a vision for a better way forward. In this session she draws from her book 'Who cares: the hidden crisis in caregiving, and how we solve it' – recently selected as a finalist for the Orwell Prize for Political Writing

As America’s population ages, women shoulder the burden as primary caregivers. 31st March 2024 PBS NewsHour (8mins 43)

Currently, 1 in 6 Americans is older than 65, a number that’s projected to rise to 1 in 4 by 2050. As older Americans’ needs for medical care and other support grow, women bear the biggest part of the burden of caring for them. Ali Rogin speaks with some women about their experiences and author Emily Kenway about the often unseen costs of caregiving.

For anyone who doesn’t have the time or can’t listen to the video, here’s the transcript:

EMILY KENWAY, Author, “Who Cares”: Yes. So I cared for my mother. She was a single mom, which meant I needed to step in as her daughter when she was diagnosed with cancer in 2016. And obviously that was incredibly difficult personally. But it also woke me up politically to what’s going on with caregiving around the world today. And we know that this is just going to get worse over time as well, right? So we have aging populations around the world. You know, one demographer has called it the greying of America. And so we can all expect a greater and greater load of caring responsibilities and to be in the crisis that I was in unless we introduce major changes.

ALI ROGIN (AR): And when you talk about who’s taking on those responsibilities, it is disproportionately women. Why have you found that to be so?

EMILY: We have this historical heritage whereby around industrialisation, we created this cultural norm, right, that the man goes to work and does waged work and the woman stays at home and does unpaid care. And we haven’t caught up with today’s reality at all, because, of course, today more women are working. Many households need the women to work. You know, those wages are not things that can just be tossed aside.

And so this idea that we can carry on ascribing to one gender all of the weight of care for our entire species is really outdated.

AR: And given all those realities you just laid out, what are some of the challenges that women tend to face when they become caregivers?

EMILY : Of course, there’s a financial impact.

Most of the time, if you’re a caregiver, you’ll need to reduce your working days and you may give up your work entirely.

In fact, we know in the U.S., on average, women caregivers lose about $320,000 in lost income and lost social security benefits.

And that doesn’t just harm us right now. That means we’re going to have a real problem in retirement, right? Our security in old age is harmed just because we stepped in and did the right thing.

There’s also a massive psychological toll. You may be having to constantly monitor and watch your loved one’s condition.

You’re experiencing what we call role reversal. So you suddenly become the mother of your mother, right? And you’re dealing with that strange dissonance.

And then, of course, you’re moving through a world that doesn’t recognize or support this. So your employer may well not accommodate your caring responsibilities.

And it bears out in the statistics, too. We know that caregivers have higher rates of depression and anxiety for these reasons.

AR: Given the fact that so few resources exist, I would imagine that also comes with a lot of assumptions and misperceptions. What are some of the most pervasive that you’ve come across when it comes to caregiving?

EMILY: I think one of the most pervasive assumptions is that caregiving is kind of something that doesn’t have any costs when it’s performed by the family, right? So, yeah, it’s free. We’re not being paid, but there are enormous costs.

When you’re very elderly or very unwell, you need to be kept warmer. There’s higher energy costs. There’s mobility aids. There’s special diets. There’s all of this kind of thing. So there’s a material, practical reality there.

The other misperception I encounter a lot is this idea that some cultures can manage this more naturally than white Western cultures, right? So that would typically be countries in the Global South. And it is very much more normalized that they would perform care, for example, for their parents-in-law, not just their parents. But when you actually listen to them, they are struggling in exactly the same ways as I was, the same ways as women everywhere are, because care is hard.

So we have to be very careful of making assumptions based on people’s culture, ethnicity, nationality, and so on, and instead see that women around the world, we’re all in the same fight here together.

AR: And Emily, here in the U.S., one in five adults right now are working as caregivers. How can we better prepare to care for these aging populations in the years to come?

EMILY: What we need to do here is really recognize that humans are going to have to provide care. And so we need to embed policies that recognize that. That’s things like paid caregiver’s leave, from work?

So at the moment, the Family and Medical Leave Act only provides unpaid leave. And in fact, the Department of Labor found that 41% of private sector employees aren’t even covered by it.

So there are these fundamental economic policies that we shouldn’t even be having to ask for, frankly, because it’s so obvious that they’re necessary.

But basically, we’ve arranged our work world as if we’re not actually humans who love people who need us to step in. And that’s got to change.

AR: Emily Kenway, author of “Who Cares: The Hidden Crisis of Caregiving and How We Solve it,” thank you so much for joining us.

EMILY: Thank you.

Please press your heart ‘❤️’ to like this and guide others here.

Warm wishes to you and your loved ones.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

8. “When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness

9. “Accept Caregiving Help When You Can” by Sue Montgomery, RN, BSN, MA

10. “A Map Already Torn” by Allie Varga_Spousal Caregiver

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Today’s ‘Letter from a Caregiver’ is by

I met Denise in January 2026. I was curious to learn more about her daughter’s illness, Prader-Willi syndrome.

*Prader-Willi syndrome (PWS) is a rare genetic disorder characterized by chronic hunger, growth hormone deficiency, and behavior challenges.

PWSA USA explains more: PWSA | USA

Now I’ve an appreciation of the extensive impact of the syndrome’s symptoms, not just day-to-day but over someone’s lifetime: What is Prader-Willi Syndrome.

Denise’s writing incisively points to the caregiving issues she faces but also illuminates the smallest of moments with the kind of humour that resonates. When you know, you know - life is in the small moments, the painful and precious.

I recommend reading these articles by Denise:

• The System Is Working Just Not For Us

• Limits of a Master’s Degree. What my daughter taught me about intelligence, humility, and hiding cookies in the laundry room

Many thanks to Denise for sharing her moment in the car with us. xo

Author’s Bio: Denise Servais is a speech-language pathologist, writer, disability advocate, and is married with three daughters. Her middle daughter, Maya, has Prader-Willi Syndrome and autism, and Denise writes about the complicated, often unseen realities of caregiving with honesty, compassion, and humor. She is the creator of Ground Level, a Substack publication for caregivers and anyone navigating a life they did not expect. Denise also serves on the national board of the Prader-Willi Syndrome Association | USA. She is from St. Paul, MN.

You Are Still in There

Dear Younger Me,

There will be a night when you come home from the grocery store and park the car in the garage. You will sit there with your hands still on the steering wheel, thinking about how overwhelmed you are, and you will start to cry. It will come from somewhere deep inside you and take over your whole body.

Maya will be about five, and her behaviors will feel out of control. Her meltdowns will get louder as she gets bigger. You will feel frustrated and defeated because the parenting techniques you used for Maya’s older sister, Maddie, won’t work for Maya. Mallory will be only one, and you will be raising three young children while trying to manage needs that seem bigger than anything you know how to handle.

By the time you pull into the garage, everyone else will be asleep inside the same house you still live in today. It will be a cold winter night, and you will start to feel the chill as you turn off the engine. You will be alone in the car with the grocery bags and your thoughts, which may be why, on this particular night, you finally understand how bad things have become.

You will sit there and think, I can’t do this anymore. What you will mean, although you may be afraid to say it even to yourself, is that you do not want to exist anymore.

I am writing to you about that moment because it will stay with you for the rest of your life. This may not be the hardest night you ever experience, but it will be the night you finally understand that something has to change. You will realize that carrying in the groceries, getting up the next morning, and making everyone breakfast is not proof that you are fine.

Before caregiving changed the map, you had a plan. You were going to keep working full time and maybe earn your PhD someday. You worked with children and adults with disabilities, so you thought you understood this world, and you believed that experience had prepared you for whatever might come.

It had not.

Being a speech therapist will help with some things. You will understand the reports and know which questions to ask and you will know how to sit in meetings and sound calm even when you are not. But none of that will prepare you to be Maya’s mother. At work, you can make recommendations, finish your notes, and go home. At home, there is no going home.

You will believe that because you work in the disability world, you should be able to handle this without help. You will treat every difficult day as a problem you ought to be able to solve if you just work harder. But that will be the speech-language pathology (SLP) speaking. The mother and caregiver will need help, and she will need to learn how to ask for it.

You never imagined you would become the mother of a child with significant disabilities, or that people might begin to know you primarily as the mom of the child who always seems to be having a meltdown. You never imagined how much of your life would be measured in appointments, paperwork, supervision, safety plans, and explaining the same things repeatedly to people who still might not understand.

You will feel as though caregiving has taken away parts of you, like your spontaneity and humor. For a while, there will be so little room for anything except caregiving that you will assume those parts are gone, but they are not gone.

As you carry the groceries into the house that night, you will wipe your face and keep doing all the ordinary things that still have to be done, even after something inside you has cracked open. But this time, continuing will not mean pretending.

In the days that follow, you will begin doing what you always do when life feels impossible, you will make a plan. This time, the plan will not be for Maya. It will be for you.

You will call the insurance company and find out what resources are available. When you mention to the representative that you think your daughter needs an autism assessment, the man on the other end of the call will patiently and kindly walk you through organizations that can help.

You will get counseling, go to the doctor, and acknowledge that you are depressed. You will finally say aloud that you cannot do this alone. You have believed that because you are capable, you shouldn’t need anyone, and that a strong mother keeps going, figures things out, and protects everyone else from how difficult life has become.

You will slowly learn that Maya does not need you to do everything. She needs you to stay present and let other people help.

You will find other mothers who understand what it means to live with constant vigilance. You will meet these mothers at Maya’s school, through organizations that help people with special needs, and through other friends. Some of these women will remind you that you are still funny, interesting, and allowed to talk about something besides Maya. There will also be friends who may never fully understand what raising a child with significant needs is like, but who listen, stay present, and try. Hold on to those people.

The humor will still be there. It may become darker and slightly less appropriate for polite company, but it will survive. Your stubbornness, your love of music, your sarcasm, and your ability to laugh at the absurd will find their way back.

You will not recognize yourself some days. There will be times when caregiving takes up so much space that you will wonder whether there is anything left of the person you were before.

There is.

You will become more assertive and learn to advocate even when your voice shakes. Eventually you will get tired of apologizing before you ask for something Maya genuinely needs. You will learn that patience does not require silence.

You will also learn, slowly and stubbornly, that you can’t control everything. This will be one of the hardest lessons. You will realize that despite all your attempts to secure a good outcome for Maya, she will still move at her own pace. Her milestones will not always match the ones you imagined. You will try therapies, schools, medications, behavior plans, and living arrangements, and some will help and others will make things worse. Sometimes they will work until they suddenly don’t. You will have to stop treating every bad outcome as proof that you chose wrong.

Your freedom will change too. Before, freedom might have meant a spontaneous weekend away or saying yes without first considering schedules, behaviors, supervision, food, safety, and five other variables. Later, freedom might mean sleeping through the night, taking a drive alone, or having someone else take over for two hours. You will learn how much those small moments matter.

You will think you have finished grieving, and then it will come back. Sometimes you will think you have made peace with the life you did not get, and then something ordinary will remind you of it. A birthday, a school event, or a casual conversation with another mother will bring it all up again.

When grief comes, let it come. There will be times when you miss the life you thought you would have, but that doesn’t mean you love Maya any less.

Please don’t wait so long to seek help and don’t wait until you are sitting alone in a garage. Tell someone how bad it is before you reach the point you did that night. Let people help even when they cannot fix it.

I wish I could tell you that after that night, you will never again pretend to be fine or wait too long to ask for help, but you will. You are still learning this lesson, even now.

That night will be a beginning. You will walk into the house carrying groceries and the knowledge that the way you have been living is no longer sustainable. You will begin to understand that accepting support is sometimes the only way you can keep going.

Stop apologizing so much, and pretending this is easier than it is. Stop measuring your family against everyone else’s ruler.

You are still in there. Even now, I sometimes have to remind myself of that, usually as I pull into the same garage I pulled into that night. One day, you will look back and understand that you did not disappear. Life changed you, but it did not erase you.

Love,

Denise (2026)

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

The Gifts of Imperfection by Brené Brown. It helped me understand that strength is not pretending you have everything under control, and that sometimes strength is admitting you need help because you are only human.

Prompt for Discussion

When did you first realize that you needed support too, not just the person you were caring for?

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

My Father had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.

It was heartbreaking to see the proud, gregarious, highly intelligent man who knew numerous languages lose his ability to reason from A to B to C, lose his sense of time and space, and shrink inward. We were able to care for him at home until he passed in 2020. It was a rollercoaster with accelerated declines, yet we still had small, precious moments together—bittersweet joy.

This Anthology is the first of many to leverage our community’s diverse experience to support each other and new readers. Empathy and Inspiration.

Ask a question, share an article or offer a personal insight to help someone else.

This page will evolve on the Carer Mentor website over time to ensure easy access and reference. Please bookmark this page.

Thank you for being here, reading Carer Mentor: Empathy and Inspiration and being part of this community network.

If you found something that resonated, helpful information, or a new connection and would like to show your support, please consider becoming a subscriber for £6 a month or £50 a year.

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Anthology of Dementia Articles | Resources | Organisations.

Carer Mentor Articles:

These include insights, resources, videos and ideas to support your journey.

Dementia Chapters of Recommended Reading

1. First-person direct experience with Dementia

2. Review of Dementia Types By Organisations in the USA and UK

3. The Caregiver’s Perspective and Experience

4. The Caregiving

5. Caregiving Techniques, tools and ideas including

   1. How to connect and communicate more effectively

6. Emotions in Caregiving: support, connection, disconnection

7. Finances

8. Tough decisions around Assisted Living

9. Articles with Recommended Resources

10. Fear of Developing Dementia

11. Helpful links and organisations

12. Books

13. Directory of the Authors | Writers | Publications included

1. First-person experience of Dementia and Reference to the types of dementia and symptoms

• The first article Judi published about her symptoms and experience in her publication Falling Leaves. The title ‘Falling Leaves. Apathy’ By Thanks to Judi for using her precious time and energy to share her experience.

• Chasing Yourself with Dementia by “ My dear fellow dementia and MCI people, this issue of my newsletter is just for you. Not about you, not around you. For you.”

• I recommend reading Judi’s articles about the different kinds of dementia and symptoms. Here’s the one she shared about Alzheimer’s

  I had a three-fold interview: nurse, social worker, neurologist. I was asked numerous questions about my physical and mental health and given memory tests-the most trying one was the five-object sequence that I had to repeat immediately and again after a good 10 minutes of information and answering inquiries.

• Judi also offers her thoughts on caregiving— her perspective, wishes and needs.

  Judi has a wealth of experience as a counsellor:

  ’I’m a counsellor who has given therapy to diverse populations. I’ve sold over 100 feature articles to magazines. I have dementia, and my newsletter provides information about dementia from professional sources and my own experiences.’

  • Caregiving: Do you have a caregiver?

  • Caregiver Burnout

  • Crafting your Caregiver companion

2. Reference to the types of dementia and symptoms

shares an overview of symptoms and conditions associated with Parkinson’s Disease, as a caregiver of her husband. This includes Lewy Bodies/Lewy Body Dementia.

The Middler

The ABC's of Parkinson's Disease

The information presented here is based on personal experience and research. It should not be regarded as medical advice…

Read more

2 years ago · 12 likes · 2 comments · Pam Johnston

3. The Caregiver’s Perspective and Experience

• Early onset Alzheimer’s - what is this strange version of dementia Many of the resources available aren’t geared toward younger people with Alzheimer’s. By

• First symptoms, feeling alone, and finally redemption. Let's just start at the beginning. By .

• 'Mom, I think you need a neurologist' and other things I never thought I'd say. By

• Caregiving - The Beginning of a New Journey “Documenting my mother’s diagnosis with Alzheimer’s and Dementia and how I am learning the deep need for policy shifts.” by

• How It Started and How It's Going: Our Journey By

• Diagnosis day And how that led to this By (Patricia Paddey)

• In the Rear-view Mirror: Launching the Alzheimer’s Journey. What feels unbearable in the first miles may one day become your source of strength. by

  “My late wife Judy’s Alzheimer’s diagnosis came to us twice. The first neurologist called it mild cognitive impairment and sent us home with a trial month of Aricept® (Donepezil). In my memoir Dear Judy—A Love Story Rewritten by Alzheimer’s, I wrote about the shock of that moment, the way our long marriage seemed suddenly tilted off its axis, cantilevered over an abyss.”

• First, There Were Bandaids. I stayed in denial about Mom's "condition" as long as I could. By

• What to Do When They're Losing Their Mind, So You Don’t Lose Yours Along the Way. Or, Things to try if Murder/Suicide is not an option By

• 'The Long Goodbye. Navigating my parent's dementia, and my brain's attempt to let it consume me'. By Anna De La Cruz

• ‘A Little Life List: When You're In The S***. Grace, Solace, and the Uncharted Mystery of Alzheimer's’. By Alice Kuipers.

• How We Craft Stories That Make Sense of the World. Or Not. Memory Loss: a dramatic shift and the scraps we reach for. By Alice Kuipers

• The Family Caregiver Has Needs Too. But They Are Often Overlooked. By

  . Defining and communicating your needs as the caregiver is important.

• •08• for looking pretty | pa’ viéndome bonito•why I believe it’s fine to wear “a mask” to look and feel better… I wear mine well. By

  Looking good, is not only to feel good, of course. But to mask (pun intended) any bad feelings going on under our Charlotte Tillbury Flawless Foundation and Pat Mc Grath Divine Rose Cream Blush. As a CranioSacral and Somato Emotional Release Therapist with a 22 year working experience, I can vouch that almost always, the better my patients looked, the worse they felt.

• My Last Dance? I will sacrifice whatever it takes to prevent my wife from shutting down. Thank you for sharing this . I dare folks not to cry at this beautifully poignant essay by Sammie.

• When caregiving feels like betrayal Solace to cling to By

  Of all the hard things about being my husband’s caregiver, one of the hardest is trying to justify or ignore the feeling that I am betraying him.

  Thanks to you and your children for sharing this, Patricia. THIS is such an important question:

  During an online course with Lizette Clouette of Think Different Dementia about planning for the future in caregiving, I mentioned my concerns. “Am I betraying Doug?” I asked her.

  “Before he got sick, did your husband ever say that he wanted you to take care of him and make decisions for him should he lose the ability to do that for himself?” Lizette asked.

  I encourage everyone to read Patricia’s response

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4. The Caregiving

• Dementia Care: What to Do When They’re Losing Their Mind, So You Don’t Lose Yours Along the Way. Or, Things to try if Murder/Suicide is not an option by . Please read this carefully crafted article of resources and advice from Jodi. (USA)

• It's Mum's birthday. Thank you for this article . I know several caregivers whose loved ones are in a care home, trying to navigate regular updates, fraught visits and liaising with staff. My heartfelt condolences for the loss of your mother. Your writing continues to help others.

• Dementia Diaries: Understanding how compromised minds work. By

• Sundowning. Dementia Diaries By

• Deciding what to wear. Dementia Diaries By

• Giving up the driver’s seat by

  Conditions such as Alzheimer’s and dementia put the caretakers of the elderly in a very difficult position. First, the caretakers have to battle the resistance that comes from giving up driving. Secondly, they have to battle the fact that the patient forgets that their abilities are now compromised. Finally they have to battle the denial of resistance and the caretakers have to become the “bad guys” and forcefully enforce the “new rules”.

• An important message from about our caregiving mindset. I'm sorry! Life got in the way. (by life, I mean perfectionism.)

• How to treat the dementia patient. And unexpected affirmations on the parenting front. By

• Let them eat cake! Removing control and keeping the "care" in "caring" By

• Part 1 of 2: The Journey That Broke Us - and Built These Books By . Series: The Emotional Catalyst — Lessons from 14 Years of Caregiving by Derek Lloyd.

  In this article, Derek shares the premise for the book he’s written, ‘How Alzheimer’s Broke Us, ’ and his publication: ‘The Caregiver’s Compass.’

  Derek says, ‘After going through 23 nurses and caregivers we built systems, processes, and a dedicated team of caregivers from scratch.

  We made mistakes. We learned. We adapted.

  And through it all, we kept her home, surrounded by warmth, not hospital walls.

  “No one explained to me how different Alzheimer’s looks in every family — shaped by personalities, distance, old wounds, and unexpected strengths.”

  What struck me most — and still haunts me — was that there was no guidebook for any of it.’

• Denial Is In My DNA. Helping Alzheimer's Home Caregivers Of Loved Ones by .

  Obviously, this progress and her ability to recover against many odds gives me hope every morning when I wake up. It may be a false one, but it is all I have, and I am going to hold on to it as long as possible because it has become my motivation for living. Besides, I could see in her silence, she was trying to live. I will fight with her for that. Hope, as illegitimate as it may be, and denial are my best defense mechanisms against deep depression, not always effective, but certainly most of the time. I just try not to think of anything else to avoid that pitfall.

  As there are no two Alzheimer's victims alike, there are no two caregivers alike. We are all different in the way we react. That is why there isn't a “supposed to-do list” to follow. Our patience levels vary, as do the personal tools we apply because we are all dealing with very different behavior changes.

• A Metaphor for Dementia Caregiving Wrestling Over the Wheel. By

• Safety for Dementia Patients while Toileting. Yes. We have to talk about this. By

• Something Else You Didn't Want To Know. Understanding Apraxia: Definition, Types, Causes, and Treatments By

5. Caregiving Techniques, tools and ideas

• Behavioral Changes Associated with Dementia - Part 1. How do things change and why? By Kirbie Earley

• Behavioral Changes Associated with Dementia - Part 2 - For Caregivers! How to manage the overwhelming changes of dementia by Kirbie Earley

• Behavior - AGITATION. Good Ways to Avoid Confrontation By Lydia Fluitt

• Memory Issues...How to Know, How to Help Have you heard of Dementia Friendly Communities? by . Thanks for highlighting some of the signs and signals that can alert us to ‘something more than just aging’ happening with our loved ones. It is a useful list, even if it’s tough to see laid out, it’s good to know.

• Sammie uses photos and gentle questions to ensure his wife understands the relationships with those she loves and can sustain her identity relative to those around her. Hanging On To Her Identity. Helping Alzheimer's Home Caregivers Of Loved Ones by

• How To Connect By Sammie Marsalli

• He Keeps Asking to Go to Work But He's Been Retired for 15 Years By

  Instead of constantly correcting him, she tried something different. She created a "work space" in their home - a desk with papers to grade, lesson plans to review. When he felt the urge to work, she'd redirect him there.

• Keeping Your Loved One Safe A Caring Guide to Managing Wandering in Dementia By

• In this article and the next, Kirbie offers her experience of avoiding hazards at home and practical suggestions on how to make it a safer environment for your loved one with Dementia. Several tips can also apply to caregiving in general. Creating a Safe and Friendly Home Environment for Dementia Caregiving. How to Ensure the Safety of You and Your Loved One By

• Bedroom and Bathroom Safety for Someone with Dementia By

• Tools: Spiritual Assessment Identifying Existential Distress by

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6. Emotions in Caregiving: support, connection, disconnection

• When Dementia Disconnects Love by

  I felt this: “It doesn’t mean he didn’t love me. It just means he lost the ability to interpret what made him look at me like that meant. But I knew.

  And that makes me happy.”

• Being Robbed of Mom by

  ‘A mom’s love is unconditional. It’s instinctual. It’s secure. Dementia demands that of us. To care the way only moms do. To connect not based on shared memories or even recognition. It demands us to care in the purest way with no expectations. To care in the moment without worrying about the next. Mom may no longer be in our world but we are very much in her world.’

• Bridging. On dementia and emotional support by

  I think this hesitation is something we all go through.

  “I hesitated over taking up a place on this free service, made available to my siblings and me because the hospice had supported our mum’s care in the last week of her life. I was coping, I thought, I was journalling and doing my yoga and having a cry when I needed to. But I felt a growing need to speak to someone about the experience of being with my mum as she died. And honestly, this offer of emotional support, the first my family had received in the 12-year-long experience of our mum’s and dad’s dementia, felt too good to turn down.”

• She can’t speak, but she does by There is so much love in this article, and each article Sammie writes—you’ll feel uplifted too.

  “When I see her smile, this means she is happy, so I am constantly searching for ways to provoke this expression of happiness. I did find a guaranteed smile. When we leave the beauty shop every Thursday, walking down the street back to our car, I sing to her with a loud chant, “How beautiful you look,” and she repeats my words, imitating my chant and laughing. At the street corner, waiting for the stoplight to change, she grabs me with a hug and a kiss.”

• Handling Hurtful Words from Your Loved One with Dementia by It’s painful to read but also excellent advice. I love this little reminder “Remember: When they can no longer express their love for you, how you care for yourself becomes an expression of your love for them.”

  I remember the first time my father looked me straight in the eye and said, "You've stolen my money. I want it back now." My heart shattered. After spending hours each day caring for him, this accusation felt like a slap in the face. If you're experiencing something similar, I want you to know—you're not alone in this, and there are ways through it.

• Conversations with Someone Who Has Dementia. An exercise in patience by Useful information, insights and advice—Kirbie compassionately explains characteristics of different types of Dementia and offers her personal recommendations:

  Over the course of an hour-long visit, he might ask this three or four times, yet with the patience of Job, these kids would give him a patient answer every single time, “Papa it’s Sunday” or “It’s summertime we don’t have school.”

  And this is what you have to do - answer it like you didn’t just answer it five minutes ago. And he could tell if he was repeating himself to us, especially at dinner. He never lost his ability to read facial cues.

• Between Knowing and Forgetting: A Conversation with My Grandad About Death By . This article reminded me of how heartbreaking it was to see Dad’s fear

  For the first time in a long time, my grandad was fully aware. He knew that he was forgetting. He knew that something was wrong. And, in that brief window of clarity, he finally understood his dementia.

  “For fuck’s sake,” he had said. “That explains a lot.”

  And then, as suddenly as it had arrived, it was gone.

• A Long Day in A&E: My Grandad’s Hospital Stay with Dementia By I recommend reading Sam’s articles, which landscape societal views of Dementia, and then there’s the articles that share the painful reality, All with love.

  Older adults with dementia are at a significantly higher risk of depression. Research suggests that whilst the disease itself alters cognition, many individuals are painfully aware of their decline in the earlier stages. The frustration, the loss of independence, the slow erosion of self - it’s unbearable.

  He told me he’d had a “good innings,” that I was to “take care of what’s left.” And then, in a moment of pure clarity, he pulled me into his chest.

  “But I love you,” he said. “It’s going to be okay.”

  And I broke.

• Seeing the Person, Not the Diagnosis What happens when people living with dementia are given the chance to create By

  There’s something magical that happens when people feel safe to create and express themselves - and my charity are privileged to witness this on a weekly basis.

  This article shares first-hand experience of how the attendees of The Billericay Men’s Shed created a unique musical composition, that provides the perfect opportunity to experience the person and personality, behind a dementia diagnosis.

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7. Finances

• Thanks to Kevin for sharing his key learnings and insights. Dementia's Financial Warning Signs. Dementia takes a financial toll long before diagnosis, study finds. By Kevin Ferguson. I recommend reading this to learn what to expect and to try to pre-empt financial issues.

• Financial Considerations for Caregivers of Loved Ones with Dementia Useful insights and tips By

• The Staggering Costs of Elder Care in America. My Experience with Medicaid, and Threats our Safety Net faces. Anna De La Cruz shares her Medicaid insights and tips.

• A Business Insider article by Anna De La Cruz My mother prepared for retirement, but a dementia diagnosis wiped out her savings. I had to scramble to figure out her care.

You have a 401k - but are you (and your parents) really planning for elder care scenarios?

I shared how my mom’s diagnosis wiped out her savings in my latest article in Business Insider.

• “Exporting Our Elders Unable to afford care at home, some families, including mine, are moving their elderly relatives abroad.” A Slate Magazine article by

8. Tough decisions around Assisted Living

• The Toughest Decision I've Ever Made. A Personal Journey. By

  ‘Dan was becoming more hostile and challenging to manage as his dementia increased. I’d reached the end of what I could do - maybe a home like that was the solution.’

• When is it Time for Assisted Living or Memory Care? Making the Decision Most Caregivers Dread a Little Easier (I Hope) By

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9. Articles with resources

• (USA) It Takes A Village We can't do this alone. Additional reading, resources, services, podcasts & media Thanks what a fantastic gift of resources.

• Sarah shares some resources to help you know 'You are not alone' Finding company on the dementia journey. By Sarah Coomber

• 'A Q&A with advocate and activist Ai-jen Poo on how to break the isolation of caregiving'. By Amy Brown

• 'In Caring for aging parents, can we see assisted living as assisted loving?'. By Amy Brown

• Amy Brown shares her experience and other resources in her article. ‘Caring for my mother with dementia is an act of love that nearly broke me.’

• Need help with your caregiver toolbox? Call a Senior Care Specialist. Save your self some time and a lot of stress. By Kerri

• Tools: Dr. Farber's Five Questions. Palliative Care as Narrative Medicine. By . These questions are useful prompts. I also wanted to highlight Anna’s publication for this reason: ‘I have discovered that I have one copy of the Alzheimer’s gene—APOE4 and I am writing about being a dementia caregiver to both my mother and my husband, so it is at the front of my mind that it could happen to me.’

• Resources BOOKS, WEB SITES, ARTICLES, MOVIES, PODCASTS By

• This resource has been written by a friend I met at the Carers UK online forum:

  Dementia Guidance: For people with dementia, Their friends and family. By Derek contact@dementiaguidance.co.uk

  Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families. 
  My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved. 
  Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.
  In our own case we have found them out merely by chance.
   I have included one or two suggestions that involve some cost but I would strongly advise you consider them. 

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10. Fear of Developing Dementia

• What if You Knew You'd Develop Dementia? Is it too late to change the course of your brain? By

11. Helpful Links and Organisations.

United Kingdom

• Dementia UK

• Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

• Alzheimer’s Society (UK)

• Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here

• Alzheimer’s Research UK - Report Public attitudes towards dementia

  The Dementia Attitudes Monitor gives detailed insight into the UK’s attitudes towards, and understanding of dementia.

  Findings from Wave 3 builds on Waves 1 (2018) and 2 (2021) and are based on telephone interviews conducted with a nationally representative sample of 2,530 adults in the UK aged 18+ between 7 June and 4 July 2023.

• ReMind UK: an independent charity getting ahead of dementia

  Our vision is a world where early intervention wins to improve the lives of millions more people across the world. Dementia should be diagnosed early and accurately, with a range of treatment options as well as the right support available.

United States

• Alzheimer Foundation of America

• The Association for Frontotemporal Degeneration

• Beyond Memory. I recommend exploring their pages. Caregiver stories. Resources. Myth busting.

  “Beyond Memory is an initiative dedicated to clearing up misconceptions about dementia and creating pathways for support.”

  “A place where caregivers, medical professionals, and advocates shed light on the misconceptions surrounding dementia, providing paths for support, knowledge, and treatment. “

• Memory Cafés Support groups.

• Kerri at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.

  

  Click here to go to the Helpline page on the website.

Canada

• Alzheimer’s Association Canada Alzheimer’s and Dementia Resources

• Alzheimer Society of Canada. There are local affiliates in different provinces. You can find yours here.

• The Association of Frontotemporal Degeneration. Resources in Canada

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12. Books

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13 Directory of the Authors | Writers | Publications included.

Recent additions are bold italic highlighted

• Judi Bailey at Falling Leaves

• Marc Barnacle at Marc Barnacle Guitar

• Amy Brown at Living in 3D: Divorce, Dementia, and Destiny

• Anne at The Future Widow

• Donna Chandler at If I Get Dementia: Empowering You As a Caregiver

• Sarah Coomber at Sandwich Season

• Sam Craven at Echoes in the Mirror

• Debbie at Behind Shoji Doors

• Anna De La Cruz at GenXandwich

• Jodi Sh. Doff at The Long Goodbye

• Anna Du Pen at Betwixt and Between Proxy

• Kirbie Earley at The Dementia Chronicles

• Kevin Ferguson at The Centenarian Playbook.

• Lydia Fluitt at Dementia, Vascular

• Michael F James at Michael F James

• Pam Johnston at The Middler

• Kerri at the Publication ‘The Other Parenthood’

• Alice Kuipers at Confessions and Coffee

• Derek Lloyd at The Caregiver’s Compass

• Sammie Marsalli at Sammie Marsalli, Alzheimer's Home Caregiver

• Sasha Neal at Dementia's Daughter

• Patricia Paddey at Searching for the Words

• Tanya Reynolds at Alzheimer’s Caregiver

• Tahia Sherebanou Fakhri at Contemplations (includes Dementia Diaries section)

• Jessica Smith at Alzheimer’s Awakening.

• Joan Stommen at Accept•Adapt•Applaud

• Janice Walton at Ageing Well

• Janine Campbell at •the point of singularity•

Share

Caregiver peer mentoring: Let’s share and support each other by leveraging our personal experiences.

For example, questions about a type of Dementia, stage of caregiving, an issue.

Do you have a question about caring for someone with Dementia?

Do you have an article that you could share to help answer someone else’s question?

This page and discussion will remain open indefinitely to help each other.

Thank you for being here, reading Carer Mentor: Empathy and Inspiration and being part of this community network.

If you found something that resonated, helpful information, or a new connection and would like to show your support, please consider becoming a subscriber for £6 a month or £50 a year.

Please Remember to ‘❤️’ LIKE the article to guide others to these resources

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Dear Readers, Welcome!

A big hug, I see you. Life has grown around my grief, but in the calm, less stressful periods of life, there are sudden waves that consume me.

Grief was relegated and boxed when I moved from one rollercoaster to another. So now, it tends to erupt and break free.

What happens when grief for one person is smothered by the need to care for another? Containing grief through surgery, healing, chemo-, radiotherapy and administering probate. It’s like an intermittent howl, muted. You know it’s lurking, powerless, unsure when it jumps you.

And yet, in the most unlikely place - ‘Wandavision’ the Marvel TV series, something clicked and resonated.

This anthology is one of many I’m producing to leverage our community’s diverse experience. This way, we can support each other and new readers with Empathy and Inspiration.

I’m not a ‘Grief’ or bereavement expert, so I seek out the expertise of others to hear from those trained to counsel, support and offer resources about grief.

Many writers/authors/creators on this platform, Substack, share their bereavement and grief experiences. Although it may not be the primary focus of their publication, they share their personal story and insights.

[Please let me know if you see any mistakes via DM or vlchin@carermentor.com Thanks!]

I hope these real-life experiences that resonated with pieces of my journey will resonate with you.

I hope readers will explore the directory of publications for other articles.

If you have a personal recommendation for a resource, book, organisation or article, please share the URL in the comments.

This page will evolve on the Carer Mentor website. Please bookmark this page for future reference and share it to help others.

Thank you for being here, reading Carer Mentor: Empathy and Inspiration and being part of this community network.

If you found something that resonated, helpful information, or a new connection and would like to show your support, please consider becoming a subscriber for £6 a month or £50 a year.

Please Remember to ‘❤️’ LIKE the article to guide others to these resources

Your support is greatly appreciated and helps validate my time and effort.

Thank you!

Subscribe now

Articles by Victoria at Carer Mentor

‘Grief is messy. It’s not a tidy five-stage path.’ Shankar Vedantam's interview of Lucy Hone offers us a broader context to her resilience research work and how she leverage her own work to navigate the grief of losing her daughter. Lucy Hone’s book is Resilient Grieving. This is NOT about ‘toxic-positivity’ grit or pushing through feelings. It’s about having practical, realistic actions as enablers.

I exhaled deeply when I found Megan Devine’s work. I share her ‘Refuge in Grief’ Website & Book in this article. Resource: Megan Devine's 'How do you help a grieving friend?' Megan Devine’s book is ‘It’s OK that you’re not OK.’ Something we ALL need to hear!

Personal Reflection & Resources: life grows around grief.

Poem: Echoes in the Walls

Personal Reflection: Grief is love persevering

The Wandavision of Grief

Directory of the Authors | Writers | Publications included.

Recent additions are highlighted in bold, italic

• Kristina Adams Waldorf, MD at After He Said Cancer.

• Madeleine Alice writes Evergrief

• Alexis Alicea at who writes

• Anne at The Future Widow

• Sarah Bain at

• Dina Bell-Laroche at The Grieving Place. Stories of Love and Loss

• Amy Brown at Living in 3D: Divorce, Dementia and Destiny

• Leann Burch at Leann Burch Writing

• Nick Clanton at Your Magnetic Heart

• Sarah Coomber at Sandwich Season.

• Jackie Daly at Creative Seasoning

• Jody Day at Gateway Elderwomen.

• Dr Angela Dean writes The Wild Grief Newsletter at

• Janine De Tillio Cammarata at The Pause Place

• Anna De La Cruz at GenXandwich

• Beverley Dickson at Cinquain poems

• Anna Du Pen at Betwixt & Between Proxy.

• Sue Fagalde Lick at Can I Do It Alone

• Stephanie Farquhar at Unmoored

• Jenna Folarin at

• Hannah Franco-Isaacs at Letters from the Sandwich Generation

• Mariah Friend at Heartbeats

• Dana Frost at I’m Fine (& Other Lies)

• Susan Fusco-Fazio at Blue Sunflower

• Amy Gabrielle at Amy Gabrielle’s Substack

• Laurita Gorman | MSW SEP at Wildly Unraveled.

• Ramona Grigg at Constant Commoner

• Amber Groomes,Ph.D. at Dr. Amber_Writes.

• Nici Harrison at Grief Balm a duet of wonder and grief

• Tina Hedin at Letters from Turkey Town

• Amanda B. Hinton at The Editing Spectrum

• CJ Infantino at [re]dacted

• Pam Johnston at The Middler

• Karen Kelly at Grief Positive

• Kelly - Mothers Never Give Up at Melodies of Courage

• Elizabeth Kopple at Elizabeth Kopple

• Danusia Malina-Derben at Parents Who Think.

• Sally McQuillen at Life is honestly so beautiful

• Jeannie Moloo at

• David Murray at

• Sasha Neal at

• Jessica Nordell at Who We Are To Each Other

• Larry Patten at

• Lily Pond at Lily Pond

• Jane Ratcliffe Alua Arthur and at Beyond by Jane Ratcliffe

• Mary Roblyn at Wri/ter Interrupted.

• Tahia Sherebanou Fakhri at Contemplations

• Mel Schlesinger at Loss to Living

• Bess Stillman at Everything is an Emergency.

• Heather Straughter at Oh, Heather!

• Bonnie Tai. at Let's Just Be

• Trevy Thomas at Our Hundred Years

• Ruhie Vaidya at From The Heart to Beyond

• Christine Vaughan Davies At Journeying Alongside

• Neena Verma at Grief Wise with Neena Verma

• Madeline Wahl at Millennial Caregivers

• Janice Walton at Aging Well Newsletter.

• Debbie Weil at [B]OLD Age with Debbie Weil

• Penelope Wright at

Anthology Table of Contents

Part 1: What is Grief

• Grief is a unique experience and journey

• Architecture of Loss. How grief restructures the spaces we inhabit

• Disenfranchised/marginalised grief

• Dos and Don’ts of supporting someone who’s grieving.

• Grief’s hardest moments

Part 2: The Personal Experiences Navigating bereavement and grief

1. Death Doula. End of Life.

2. Anticipatory Grief/Early Grief. The Long Goodbye.

3. Widow | Widower/ Grief of a Partner

4. Grief of a Parent/Parent-figure | Grandparent | Family Member | Chosen Family

5. Grief of a child, including miscarriage.

6. Grief of a sibling

7. Navigating grief with children

8. Grief Empathy is painful

9. Moving from private grief to communing with grief, and living with grief

Part 3 Enablers | Tools

• Resources | Organisations

• Books

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Part 1

Grief is a unique experience and journey.

I recommend reading Debbie’s article and the comments. They highlight how no two experiences are the same because no two people or relationships are alike.

I appreciated Debbie’s article because many people expected me to be sobbing in grief, but I was relieved: Dad was finally released from his pain & diseased body. Then, grief was deprioritised by more caregiving and complicated by traumatic memories of falls and hospital discharges.

• Please don't say "Sorry for your loss". A complicated relationship with my dad has led to complicated grief. By

What Grief Wants From You. Step one: stop looking for the finish line by Nick Clanton offers some thoughts that resonated strongly with me.

Because more than declaring what it is you want from your grief, it’s better to wonder what your grief wants from you.

A non-exhaustive list of desires your grief may have for you:

“Your grief wants you to know it’s ok to smile, that you can laugh and grieve at the same time.”

“It wants you to figure out how to give your grief space to breathe so it doesn’t choke you.”

“You’re not failing by feeling.”

“Accept that navigating grief well does not necessarily culminate in happiness.”

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“Architecture of Loss. How grief restructures the spaces we inhabit — and why it migrates to screens” by

Penelope is the author of . When I read this article, I felt that her concepts seemed so instinctively obvious; for example, her illustrations and articulation of how grief is concentrated in specific areas of our homes resonated. I recommend reading this article.

“When I started mapping this I thought grief was something you carried inside you. A feeling that moved with you through the world.

What I found is that grief doesn’t just live inside you. It settles into the spaces around you. It concentrates in specific corners of specific rooms. It ambushes you in kitchens and on city streets. It disrupts your sleep at a biological level. And when the physical world becomes too full of absence to bear, it migrates somewhere else entirely.

This piece follows that migration — from the living room to the kitchen to the bedroom to the street, and finally to the device in your hands. The images throughout are original conceptual illustrations I made to visualise the ideas. They’re sketchbook drawings, not scientific instruments. What they’re based on is real. What I made is a way of seeing it.” Read more

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Disenfranchised / Marginalised Grief

• EverGrief: A Beginning. The who, what & why behind EverGrief. By Madeleine Alice.

  Evergrief explores the many shapes of loss, especially the ones often unseen or unspoken. Written from the lens of navigating chronic illness, this is a place for naming, remembering, and making space for the slow work of disenfranchised grief.

• This is Disenfranchised Grief. YouTube video The lost tribe of childless women by

  at TEDxHull June 2 2017.

• Grief Encounters of the Non-Death Kind On the Ambiguous Losses of caregiving By . This article resonated. I shared that ‘Grief, emotional trauma/PTSD rewired my brain. It also burned a brand/tattoo on my heart.’

• Opening our hearts and minds to everyone. Grief is an individual experience but for some they are suffocated or marginalised. Feeling suffocated? A social justice approach to grief and loss means we recognize and validate those that are cast aside. By :

  Suffocated grief is a term that she coined to acknowledge the sorrow that marginalized people may experience. Different than disenfranchised grief (Ken Doka’s beautiful work), where our sorrow isn’t acknowledged or accepted, suffocated grief speaks to the bereaved not being able to express their pain, for fear of being penalised.

• eloquently shares her betrayal grief : Grief is Fermentation, and I’m Turning into Kimchi. A look inside the jar where I spent the last few months grieving for ambiguous loss.

  the grief of the loss of an intimate partner as betrayal revealed that I had been living in a "reality" that was not real? I had to grief of the loss of my reality and the loss of a future of endless love that I had imagined. Many people have experienced this kind of loss but there isn't enough recognition in our society that we need time and people's support to go through the grieving process.

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Do’s and Don’ts of supporting someone who’s grieving

• Ultimate Grief Gift Guide. Created FOR Grievers BY Grievers By

  How do you buy a gift for someone who just lost the love of their life? Or a parent who lost a child? Or for someone recently diagnosed with cancer?

  You shift the focus of the gift.

  You don’t send a gift with the intention of eliminating their grief (you can’t). You send it as a way to say, “I acknowledge what you’re going through, this totally sucks, and I’m here.”

• Q: What are some last-minute gift ideas for a grieving person (that are meaningful but require very little effort)? ‘Like most, I’m out of time and ideas, but I still want to show up for my grieving friend in a thoughtful way
  — Late-to-the-game & desperate’ By . Thank you for this, Dana. I’ve already sent a set of 10 text messages to my friend, for him to use when needed. Much needed and greatly appreciated.

• Rethinking how we support others through grief. 6 THINGS I wish people didn't do & what we can do instead. By

• 5 Statements that are Decidedly Not Helpful. Even though we both wish they were. . .By

• How Can I Help? How Can I Hinder? By This resonates deeply. How often do we set expectations for ourselves or others. I recommend reading more of David’s reflections.

  Everyone would like to be able to communicate what appropriate support looks like, but no one, including the grieving individuals, can provide a detailed map or blueprint to follow. Grief can be overwhelming and confusing, and it can change from moment to moment. This is the challenge in understanding grief; even the grieving individual can become a mystery to themselves.

• Forewarned is Forearmed What is Wisdom? By I recommend reading the full article to understand just how obscene the comment was and to read David’s concluding wisdom beyond this quote. Thank you, David.

  For a moment, I was able to gain some objectivity and see the ridiculous nature of the statement for what it was as opposed to being drawn into my own desperate misery at the time. More importantly, my friend had given me something to protect myself with. I was forewarned and thus forearmed. It will come as no surprise that I did not see the psychiatrist again. I also learned that I would have to more carefully assess who I let close to me in both my personal and professional life. So maybe I should be thanking the psychiatrist; on second thoughts, maybe not.

• 7 Ways You Can Help Your Grieving Friend. A Shopping List. By

• Songs of Grief By :

“The song of the soul that cries can only be heard by one’s soul who has already cried.” I tell my chaplaincy students, this is the crux of why we explore their own pain, so they can more fully sit with others in their pain.

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Grief’s hardest moments

• As part of the UK National Grief Awareness Week, “has been thinking about how difficult it’s going to be to carry grief across Christmas and New Year celebrations”. In this article, she shares her grief of losing her mum last year and offers her thoughts, insights and resources for us all. Coping with Grief This Christmas - Small Things That Make A Difference. For anyone grieving this Christmas: a few things that might help.

“I’m still figuring out what will help me get through this time. I don’t believe in turning grief into something neat or inspirational. I believe in naming what’s real and sharing it in case any of it aligns with where you are now.” -

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Part 2 Navigating Bereavement and Grief

1. Death Doula & End of Life.

• A compassionate discussion about being a Death Doula: ‘Guided By Joy: A Conversation with Alua Arthur’. On being a death doula, empathy v. compassion, toxic self-reliance, boundaries, celebrating celebrations, and so much more! By and

• The 4 Things You Must Say Before You Die by Thank you and Brenda Hartman

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2. Anticipatory Grief/Early Grief. The Long Goodbye.

• Your Grief Is Real, Even If They’re Still Here By

  Most people don’t realize they are experiencing grief because their loved one is still alive. They think those crushing moments of sadness from seemingly normal life events and situations mean they’re weak or giving up on their person.

  They’re wrong.

  It’s your brain preparing for loss, and it has a name: anticipatory grief.

  The following quote from CJ’s article offers a sharp focus onto a reality few openly discuss:

  “She was dying. She needed money now.

  I was surviving. I needed money later.

  Her cancer dug a ditch between our now two goals, which were once united.

  Anticipatory grief will overwhelm you and your relationships. It will create destructive patterns in your life–when left unchecked. Unacknowledged and ignored.”

  It’s important to recognise this dynamic. I’ve seen this with friends, particularly in the US, given the cost of care and college. Everyone worries about future finances for sustaining quality care, and whatever happens ‘later.’

  Thankfully, CJ shares some practical tips and thoughts to help guide others through what he navigates, caring for his wife Ariana, who has terminal cancer.

• The Grief Before the Grief. Blessing or Burden? Understanding Anticipatory Grief By . I appreciate Christine’s ability to articulate experiences and express feelings. I highly recommend reading this. It resonated a lot with me.

  Anticipatory Grief is the preparation for a change or a loss that is about to take place. It involves all the thoughts, feelings and experiences one goes through when change is clear and inevitable.

• The impact of dementia and long term illness. The grief we feel before they’ve gone. ‘The Long Goodbye. Navigating my parents' dementia, and my brain's attempt to let it consume me.’ By

• ‘Dementia is a thief that steals from us all’. By

• The paradox of blessing-burden and grief-joy. There are so many quotes I wanted to share from this! ‘Exploring the blessings/burdens of this season. Catastrophising with my cup half full.’ By

• Widowish Sort of, but not exactly. By

  Mabel, obviously, is a widow. But when she asked me how Mike was doing, and I tried to explain the strange manifestations of Parkinson’s dementia—like the fact that Mike will sometimes talk about me in the third person, as though I’m not right there in the room with him—she nodded sympathetically.

  “It’s just so hard to lose someone you’ve loved for so much of your life,” she said.

  I nodded, grateful that she understood what I hadn’t said outright. Grateful that she was allowing me into the club of women who have lost their partners, if only for that moment.

• Kristina’s vulnerably raw memoir that shares what happens after her husband’s diagnosed with breast cancer. ‘How it Began’ By

• The beautiful writing of Bess and Jakes journey. Quote: ‘Every bonus hour has become the golden hour. We haven’t been around as long as Newgrange, but it feels like, just by getting to this solstice, we’re a monument to something. Maybe a monument to how much love can do. We’re beautiful in this light.’ ‘How the light gets in: a solstice at the border of life and death. The fire in each of us, on the shortest day of the year’ By

• Uncertainty is the state of being alive. We were certain that Jake would be dead within a few months. Then, a clinical trial drug gave us the gift of wondering: what if he lives? By

• Navigating grief in life. ‘Intentionally Building Resilience One Day at a Time’ By

• Good News! I Cry Pretty Now. Progress. . . I Guess. By

• Bearing witness to the decline and feeling the crescendo of grief. ‘When Death is Slow to Come.’ Finding Gratitude in the Midst of Pain By

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3. Widow | Widower | Grief of a Partner

• Fog by Stephanie shares her reflections on ‘the fog’ which went far beyond what family members had expressed. She offers her own experience for your awareness and resonance.

  Being in a fog sounded like it would provide relief from the anger, the hurt, the fear and the questions that kept playing in my head and would never get answered.

  Looking back now, I know that they were trying to spare me, but I wish they had talked more about it. [Read more here]

• It is Not About Healing From Your Grief By

  Mel shares the details of navigating his “journey with grief after the death of my wife and soulmate of 47 years and 9 months”

  From the very first week, I have taken a very aggressive approach to dealing with my grief. Five days after she died, I forced myself to go to my first bereavement support group. And I mean that I forced myself because my instinct was to stay home and be sad.

  I will not bore you with everything I did, but I want to share one thing: I did a lot of research and reading, and I still read a lot about grief. What I learned is that there is no timeline for the grief journey. No roadmap tells you to do this during week one, then during week two, and then these things in week three. While there is no timeline or roadmap, we can still make choices. I chose to take action despite the overwhelming impulse to do nothing. [Read more about his reflections and explorations here]

• Hello, From the Other Side. A (non)advice column from someone who's been there. By

  At the time, I thought grief was something you dealt with - for a year, tops - and then it would be better. And all I wanted to do was to get to the other side. The side where the horrors of cancer and widowhood were behind me.

  Of course, since that day, I've learned there is no "other side."

  There's life. There's death. And there's grief in between.

  But there is another side to those early days (months? years?). A side where the grief will get softer. It will become more manageable. You will get stronger (cliche, I know).

  Most days, I live on the other side.

  There’s no guidebook for the grieving.

• In Memory of Jake. A brief update and a broken heart. And then, the writing will continue, as Jake would want it to. By

• A poignant essay. ‘What I Learned in My First Year as a Widow. Gratitude is how you get through grief.’ By

• My husband died a year ago from Alzheimer’s Disease. Right afterward, I wanted to go with him. Gratitude Graces Loss. Unconscious Intimacy By

• However long it’s been, you’re not alone in your grief. Have a read of this by Joan. xo The Heaviness of August Grief depression this time of year sucks...but worth a few bad weeks By

  I didn’t write for six months after he passed, then I wrote it all…raw and angry and sad. I shared it here about five months into joining Substack…when I realized there were other widow warriors writing about grief.

• Quote: ‘Be that as it may, there remains a constant sadness in me that I don’t think will ever go away. My life is unequivocally changed - and it wasn’t a change I wanted or planned for. I miss him more than I could have imagined.’ ‘Three Years a Widow. It doesn’t Seem Possible.’ By

• Quote: As a fellow writer said when writing about her husband’s death, “our love is breathing still.” Even though my husband of 60 years is physically gone, constants remain in life - maybe, our love is breathing still - just differently.’ ‘Walk in the Woods’ By

• Referenced by Janice. I Buried Him. Our love is breathing still. By

• Grief Is A Motherfucker. But sometimes it hurts so good. By

• 31. One Year A Widow The event, ‘his death’, and the feeling, ‘my relief’, are inextricably intertwined. By

• Pink Juice Reflections Taking a little control at life's end. By .

When I read Trevy’s reflections, I could feel myself trying to get my heart and head around the pain within these lines. The quote I’d like to share is not from the main text but from the discussion—comments exchange between Trevy and . I hope readers will click through to read the full article and comments exchange—big empathy AND pointing out societal conditioning. (I’m glad Trevy’s found a good one too!)

Oh Trevy, my heart goes out to you. From one widow to another, I get it. It's the "what ifs" and the "should haves" that get to us, even years later. It really is our brains trying to make sense of something awful by drawing unfair conclusions. We cannot go back in time, but oh how I wish we could.

• Your Objects Are Emotional Keepsakes. Why do our belongings feel so charged with energy? By QUOTE: ‘In grief I learned so well that objects hold energy. It’s a phrase I never really understood before.’

Organisations supporting widows and widowers, and their children.

has shared several recommendations for organisations supporting widows and widowers:

• Modern Widows Club: An international community offering in-person and virtual support groups, events, and resources for widows to connect, find hope, and empower themselves.

• Soaring Spirits International: Provides peer support and resources through programs like “Camp Widow,” a weekend gathering for widows, and "Widowed Village," an online community where people can connect and share experiences.

• Hope for Widows Foundation: A nonprofit organization providing online support, local chapter meet-ups, and an annual financial grant to help widows in need.

• Widowers Support Network: A worldwide organization dedicated to healing hearts and saving lives of men who have lost their spouse or life partner.

  National Widowers Organization: A nonprofit organization dedicated to providing support, resources, and advocacy for men who have lost their spouse.

• Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.

• National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.

• The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.

• CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.

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4. Grief of a Parent/Parent-figure | Grandparent | Family Member | Chosen Family

• When I read this article by Jenna I resonated with her words and it took me back to the phrase I’ve adopted, ‘Grief is love persevering.’ We carry it with us, as we move forward and at specific moments, we feel its presence more keenly. The love never leaves us; there’s a paradoxical joy and happiness in that. Thank you for this touchpoint-reminder for me, Jenna. Reflecting on my grief journey 4 years on. Remembering my wonderful Dad by

  So, this time of year is always tricky for me because on 8th October, it’ll be 4 years since my Dad passed away. He was just 65 and it was unexpected. In fact, he was due to have an operation to make him better the day that he passed away. I’ve noticed that even if I’m not thinking about this date specifically, my body knows it’s coming up. Subconsciously it’s always there in the background, that knowing that he is not here anymore. It’s like this deep ache that is ever-present.

• The Pit of Grief by who write The Grief Pen. “Writer and grief support bestie 🫶🏼 In honor of my mom Valerie 🪽”

• On The First Full Year Without A Loved One Mom died in 2022. Was there joy in 2023? By

  Mom wasn’t here.

  She wasn’t here in 2023.

  She won’t be here in 2024.

  And 2025, 2026, 2027, 2028, 2029, 2030, ad infinitum.

  Well-meaning people say she is here in spirit. That she’s here within. Which is nice. Very nice, in fact. But being here in spirit is very different from being here in flesh and blood. Sometimes I just want to watch television with Mom, or talk to her about what to have for lunch. I miss the everyday of getting groceries or talking about how pretty and full the moon is outside.

  While the new year is exciting and full of potential and joy and newness, it’s also a time of deep, profound grief.

  December to January becomes a more complex time of year as we grow older and life events pile up. I have great resonance with Madeline’s words.

• What happens when your second parent dies Or: When you become an orphan By (Jauary 20, 2025). My heartfelt condolences and thank you for sharing this, Madeline.

  My dad died ten days before Christmas.

  The first few days after he passed didn’t feel real. I kept busy, doing work things and getting swept away in holidays. It wasn’t until January when I truly felt lost. It’s hard to lose a parent, and it’s hard to lose a parent when you’re the caregiver. It’s hard to lose the second parent, and it’s even harder to lose the second parent who also needed caregivers (To clarify, it wasn’t expected of me to be a caregiver for my dad. Not at all.)

  The truths came hard and fast:

• 5 More Minutes Or...what would you tell the people you've lost? By A beautiful conversation. Thanks for sharing, Hannah. I think we’d all need more than 5 minutes.

• Note on November 24, 2024, by to her mother about sorting everything in her mother's home. Thank you for sharing, Sarah

  Some of the things I’ve kept from your home, mama. I know you’d be sad no one wanted the china or silver. No one took all the Hummels. No one wanted the antiques or the clocks. We even left behind the new bed. But here is some of what I kept:

• When dying happens...Friday, August 2, 2024 By

  When my mom was dying, it was everything I expected, and everything I didn’t. With pancreatic cancer, we’d been told it would change quickly, suddenly, unexpectedly, and so I found myself holding my breath for the seven and a half months it took to course through her body, and still it took me by surprise with its ending.

• Emptying by Thank you for sharing this Sasha.

  It’s my sixth visit to my mother’s house since she died, and my last. We step from the pavement into the living room, breathe old woodsmoke and damp stone, dip our heads under the blackened, sloping beams to carry bags upstairs and make our beds, and what surprises me most is not that I can’t summon sadness when I want to, but how much I wish the kids were there.

  ‘I want to do it intentionally,’ I told my sister on the long drive west and north through Friday night traffic, ‘I don’t want to get into an unthinking rush.’ But there’s just so much to do.

• A beautiful poem ‘Death Came’

• 5 things I never expected about grief. We all have some idea what grief might look like. Here’s what I didn't see coming. By

• A grief-empathy-exchange between myself and . Ruhie wrote a note about ‘firsts’ that trigger grief. We shared thoughts on memories, music and how we are gaslit when people say, ‘Time will heal…or your grief will get better with time….’UGHHH. When we connect with others who are grieving, we feel seen and less alone. Thank you, Ruhie.

• Navigating feelings after a recent bereavement. ‘Don't let guilt steal your grief.’ By

• ‘Quote’ ‘There was nothing I could do to stop the vortex of chaos, and nothing for me to hold onto and take refuge. The only thing I was able to do – in Alan Watts’s words – “to make sense out of change is to plunge into it, move with it, and join the dance.”'Be Present and Dance with Grief. On moving forward when everything falls apart'. By

• Quote: ‘I had the sense of a circle being brought to completion, of a contract having been honoured.’ A parting gift. Being with my mother at the end. by

• Reframing our relationship with grief. ‘It is clear to me now that I was fearful of grief because I had no framework to make sense of the experience of death, and I had no models for how to cope effectively with overwhelming emotion’ An Invitation to Grieve Fearlessly. Grief can be frightening, but there is nothing to fear’.By

• Learning how we can be like a good friend to our grieving selves. Meet Your Grief With Self-Compassion How I've used self-compassion while grieving, and how you can too. By

• ‘A keening ceremony Finding the doorway into a shared experience of grief and love’ by

• ‘Somehow the loss keeps happening An exploration of time, felt as a pulse, rather than a period’ By

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5. Grief of a Child

• has curated this article of ‘A Directory of Grieving Parents on Substack: Finding Community in Loss’:

  “40+ publications by bereaved mothers and fathers sharing their journeys of love, heartache, and healing.”

  There are over so many grieving parents writing on Substack. Each of our grief journeys is as unique as the child we’ve lost. Many of us have met, messaged, or spoken by phone. Let’s formalize our group with a directory.

• ‘Women are designed to Howl if we're not howling are we even healing?’ By

• The dark side of grief. ..or how family members get in the way of grief By . Thank you for this, Sarah:

  It wasn’t until more than a year later, sitting in a circle with other women whose babies had died, that I confessed my feelings. I couldn’t look at babies, hold babies, see my friends with babies, or smile at babies. And as I quietly confessed my thoughts, a collective sigh of relief took over.

  It turns out I wasn’t alone.

• My 4-Year-Old Son’s Death Is A Mystery. There’s 1 Question I Desperately Wish People Would Stop Asking Me. “What happened didn’t make sense to me. It didn’t even make sense to some of the best doctors in the world.” (HuffPost Personal, May 12, 2026) By

• Quote: ‘These days in my mind, grief looks like a circle of people—all different ages and sizes of Amanda—sitting around, each passing a parcel from person to person. It seems now that when grief had brought someone closure, they passed it on to the next Amanda who was ready.’ ‘The Alchemization of Grief A New Orleans cab driver helps me grieve my daughter’ by

• Emotional Memory of Grief. Hurricane Season By

• Caring for Yourself When Your Heart is Breaking. Tips and Stories Along the Grief and Caregiving Journey By

• Quote: “AHHH, I BUILT A HOME FOR MY GRIEF TO LIVE IN. “7 Years of Grief” is the home of my acute ache.’ ‘DOES SADNESS BELONG ON THE PAGE FOREVER?’ By

• Quote: ‘We don’t return, we don’t pretend, and we don’t just move on. We cannot return to our previous grief free days because we aren’t the same anymore, how could we be after such loss?’ ‘Give Grief a Seat’. Making space for our pain. By

• About the writer…so why did I create a Substack? by

  I've sought answers, support, and understanding. I've worked with charities, spoken to numerous government organisations and officials, and even pursued a Master's degree in Business Psychology, hoping to understand why institutions so often fail those who are grieving.

  What I've learned is this: when the unthinkable happens, you're often left to navigate a complex maze of emotions, practical challenges, and societal expectations, with little guidance. That's where "Beyond the Expected" comes in.

• I Hugged My Son Goodbye And He Began His First Week Of College. Then I Never Saw Him Again. "In my mind, I’m still planning for parents weekend, Thanksgiving, sending his winter clothes. ... None of this will happen." By

• The World Keeps Spinning by . Thank you for sharing Christopher with us, Sally

  With Christopher, it’s different. Time doesn’t really mean a thing. When his little sister gets married, (and she will always be his little sister), I have no doubt that he will be a part of all the celebrating in the year ahead. He will definitely be at the parties. He wouldn’t miss a party. And who knows? Maybe he even brought the gift of Paul Caroline’s way in the first place.

• and sharing Kiki’s story with us ‘Start Here. A good thing plus the backstory’

  Eric and I entered the world of grief, and discovered that when the worst thing happens, the cruelest part is, it doesn’t kill you. The pain makes you wish you were dead yet you have to go on. And that’s what I’m doing here. Finding a path through the darkness. Learning how to carry grief. Learning how to find joy and hope again.

• A Chicken From a Past Life and a Really Good Hamburger in Savannah by This is one of my favourite pieces by Tina. We’re introduced to Clementine, Kiki’s soulmate…and the idea of a tattoo. The follow-up Seeking the Lonely Places Tattoos, Scars, and the Wilds of West Texas.

• Channeling Grief after Henry Anniversaries - the other kind By

• A beautiful legacy. ‘Happy Birthday my eternal child. 24th June ... Happy Birthday to a child long gone, a child ever here’. By

• Bereaved Parents: Reflections on Laura’s Would be 38th Birthday Written on July 13, 2024 By

• A Symphony for One Heart Missing I will keep listening. Keep loving. by . Please read this beautiful article and Kelly’s publication. Here’s a sample of why:

  This Orchestra Hall, a sanctuary for Kevin and I, used to be a place for us to spend countless Mother-Son “date nights”. It was where he and I breathed together in rhythm with the orchestra, our hearts beating in harmony with Mahler, Beethoven, Tchaikovsky, Rachmaninoff... Side by side, rain or shine, year after year, those magical nights through every season and circumstance.

  He was a child of music - a pianist, violinist and composer. Each note he played, each line he wrote, carried the rhythm of a soul too vast for his years.

• The Strange Authority Grief Gives You On performance, truth, and what would have been Bix’s nineteenth birthday by Thank you for sharing this fierce honesty, Karen. - fierce as in brave, raw, truth. I felt your words and your love for Bix.

• The Story Is Mine Now By

  My son died September 20th. I do not have softer words for this.

  One lazy September morning, my world was completely normal: coffee ready for brewing, sunlight spilling through the window, and an hour later, everything I was had been split into two.

• I Did Not Know The Eiffel Tower Sparkles By

  I renewed four out of five passports this spring.

  Moments like these require a very deep breath, walking in with paperwork for your entire family minus one.

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6. Grief of a sibling

• Forever A Sibling The Forgotten Grief of Sibling Loss by

  “Over the last couple of years, I’ve interviewed quite a few siblings and each time, there’s been a common thread.

  When someone dies, we tend to make space for parents, spouses, or children, but siblings can end up feeling invisible. Many feel like they need to be the strong one. They step in to fill the space their sibling left behind or focus on comforting their parents, even while navigating their own loss. Their grief can feel like it comes second.” - Heather

• Sibling Loss - The Unbreakable Bond at A Place of Yes | A Grief Podcast by This link takes you to the YouTube playlist. Thank you Heather!

  “Grief is messy, complicated, and deeply personal — but you don’t have to go through it alone. On A Place of Yes, host Heather Straughter creates a safe, unfiltered space to talk about the realities of loss. Each episode dives into the tears, the laughter, the WTF moments, and the hope — all of it”

• The Wrong Question On “were you close,” the hierarchy of grief, and what to ask instead. The Wild Grief Newsletter at publication by

  I appreciate how Angela shares personal experiences in this article. She also shares suggestions for asking meaningful questions that can open an empathetic discussion about the sibling they’ve lost.

7. Navigating Grief with Children

• ‘Helping Children Process Death and Cope with Grief, While you're still trying to figure it out yourself’ by shares her experience and some resources.

• Crying While Parenting: A Mindful Approach. How can parents allow themselves to cry without introducing unhealthy levels of stress upon their children? By

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7. Grief Empathy is painful

• When ‘Til Death Do Us Part Happens’. Another widow finds herself suddenly alone By writes a beautifully empathetic piece. Many of us, I’m sure, have felt the resurgence of grief on special occasions, but I think it’s particularly potent when we feel empathy for someone else. Thank you for this, Sue.

8. Moving from private grief to communing with grief, and living with grief. NOT moving on, but life growing around the grief that is part of us. They are part of us.

• When was the last time you cried in public? Moving from private grief to community healing By

• Bloom: A season of grief & gratitude Two poems and the start of something new By

• Unhappy Anniversary? What do you say . . . By . Larry highlights the awkwardness many feel around the anniversary of someone’s death. The English language and traditions deter, rather than accommodate, grieving-in-community. Unlike, for example, the Jewish tradition of ‘Yahrzeit.’ I agree with Larry, saying something in empathy is much better than avoidance.

These next two articles by Jackie resonated because specific music reminds me, moves and shifts the grief within me. This is part of my father’s legacy, gifted to me from a young age.

• What a dance weekend taught me about living with grief. Dancing, life chapters, and matryoshka dolls. By

• How good times struck me like a tuning fork. "Good times. These are the good times." By

• Witnessed. From a grief retreat and a crowded airport gate - on what it means to finally be truly seen in your loss. By

  Someone spoke up and offered a piece of their grief to the room - something tender and specific and deeply, privately theirs. And I watched the whole room shift. Heads nodded. Eyes filled. A slow, collective exhale moved through the space like a wave. And then someone whispered, me too.

  Just that. Me too.

  I don’t think I can overstate what those two words do to a grieving person. I really don’t.

  I recommend reading Jamie’s articles

• In an article published by in her publication “Grief Balm” (November 10, 2024), Veronica Stanwell shared these words of wisdom

  As everyone, one by one, placed their items on the grief altar, tears flowed in what felt like one of the most beautiful honourings I have ever experienced.  In those tears, I felt the sheer breadth of love the human heart is capable of.  I was reminded of Cole Arthur Riley’s quote:

  Grief is an honouring.

  It really is.  An honouring of your love.  Of life.  Of all that tears us open to the mysteries of this existence.

  I appreciate how Nici shares diverse grief practices and perspectives. ‘Your grief is an honouring With special guest - Veronica Stanwell’

• Nici has recently renamed her publication to “a heart covered in stretch marks’

  Letting go of Grief Balm welcoming in a change of name, a shift of energy

  “In the end I want my heart to be covered in stretch marks.”– Andrea Gibson

  For nearly a decade I devoted myself to the practise of grief tending: the art and ritual of welcoming grief as potent medicine for alchemising sorrow and longing into gifts of beauty, awe, connection and aliveness.

  More recently, I’ve noticed a shift as I’ve been tending life beyond the edges and depths of grief work.

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Part 3 Enablers | Tools

I recommend reading through Jamie’s toolbox: “Everything I Know About Supporting Grief, In One Place Friday Grief Toolbox: The Master List” by . In Jamie’s words: “This isn’t a prescription. I am not telling you what to do or what will work for you - grief is too personal for that. What I’m offering is a starting point. A menu. A place to get curious. Read through and let something catch your eye. Google it. Ask your therapist about it. Bring it up in a support group. Some of these you’ll already be doing. Some might feel like they were made for you. Some won’t be right for you at all - and that’s fine too.”

Thank you Jamie!

Resources | Organisations

UNITED KINGDOM

• End of Life Doula

• Cruse Bereavement Support

• recommends The Bereavement Journey. Thanks to Beverley commenting on a discussion thread where I’d shared an insight that ‘Grief is fingerprint unique’

  What a great personal observation “grief is fingerprint unique”. I can really resonate with this having done The Bereavement Journey twice and having the privilege of hearing so many heartbreaking experiences of grief and the unique impact on each person.

  My aha moment has been how much writing poetry has helped me do “good grief work” - a term I heard in The Bereavement Journey.

USA

• Here are the resources curated by Dina Bell-Laroche recommends on her website.

• National End-Of-Life Doula Alliance (NELDA)

• Refuge in Grief by Megan Devine

These were recommended by who writes

• What’s Your Grief

• Modern Loss

• Good Grief

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Books

A Reading List for Grieving Caregivers. A few books to help you remember that you’re not in this alone. by Thanks for these new recommendations, Pam!

**I’ve read.

• Finding Meaning: The Sixth Stage of Grief By David Kessler (November 5, 2019)

• Grief Unleashed by Dina Bell-Laroche

• Kokoro: Japanese Wisdom for a Life Well Lived by Beth Kempton

• , PhD. Two books: Grief Growth Grace. A Sacred Pilgrimage. and A Mother’s Cry. A Mother’s Celebration

• It's OK That You're Not OK: Meeting Grief and Loss in a Culture That Doesn't Understand by Megan Devine**

• Resilient Grieving: How to Find Your Way Through a Devastating Loss - Updated and Expanded Second Edition by Lucy Hone, PhD**

• A Manual for Being Human by Dr Sophie Mort**

• Grief Works: Stories of Life, Death and Surviving by Julia Samuel**

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Social Care Reforms were announced as part of a Press conference today, July 29th,

In this article:

1. A link to the video and summary of the press conference

2. How to share your opinion and contribute to “The Big Conversation” about Social Care reform.

3. July 2026 Newsletter: The Big Conversation on Care is now live

   Published 31 July 2026

4. A video podcast “Andy Burnham on Social Care - Do I Sound Like I Care? Podcast” published July 1 2024 by Louise Lynch

1. Andy Burnham, the Prime Minister, announces Social Care Reforms

Watch The Guardian Video

Timestamps:

• At 11:55 Yvette Cooper Health Secretary

• At 16:04 Baroness Louise Casey of Blackstock, Chair of the Independent Commission on Adult Social Care, introduces “The Big Conversation on Care.”

• At 21:39 Prime Minister Andy Burnham talks about Social Care and introduces 3 reforms

[A short summary of the video using Otter AI]

Social care reform: a new push for a National Care Service

At Jewish Care in North London, Yvette Cooper, Baroness Louise Casey and Andy Burnham set out a renewed attempt to reform adult social care.

Yvette Cooper, Health Secretary MP

Yvette Cooper opened by recognising the work of Jewish Care and the importance of putting families at the heart of social care. She described social care as “personal for many of us” and said it matters even to people not directly affected, because a broken care system can also put unbearable pressure on families and the NHS.

She pointed to the long history of failed reform, noting that there have been “22 different attempts to reform social care” since the late 1990s. Cooper welcomed Baroness Casey’s Independent Commission and “The Big Conversation” as a chance to involve people across the country in shaping a better system.

She also highlighted the government’s ministerial group, which she said would accelerate work on the workforce, system reform and early recommendations, including the appointment of a dementia czar.

“We cannot keep walking away from this problem. We cannot keep walking around the same circles because this is so important.”

Baroness Louise Casey of Blackstock, Chair of the Independent Commission

Baroness Casey spoke about the need to make life easier for people living with care needs, rather than allowing public services to make already difficult circumstances harder. She said the Commission had looked closely at previous reviews and found that one thing had been missing: a genuine national conversation.

She stressed that this cannot be a narrow consultation around a specific topic, as has happened in the past, but a broader involvement of the public in fundamental questions: what care means, who should receive it, what families can reasonably do, when the state should step in, and who pays.

Casey described “The Big Conversation on Care” as an opportunity to renegotiate the social contract around care, drawing on the country’s ability to do difficult things when it chooses to act together.

“Nobody had the big conversation. What does care mean? Who should get it? What should you do as a family? How much could you do for yourself, and how do we get this right?”

The Prime Minister, Andy Burnham: three reforms to move social care forward

Andy Burnham spoke personally about his family’s experience of social care and his father’s Alzheimer’s. He began by praising care workers, saying their skill, professionalism and compassion are too often undervalued. He said those caring for “someone else’s dad or someone else’s mum” should be among the best-paid people in society, not the worst.

He then turned to what he saw as the failures of politics. Burnham said Parliament had allowed almost 30 years to pass since the Royal Commission on Social Care, with repeated reviews but no lasting settlement. He described that as a “major dereliction of public duty” and said politics must move from point-scoring to problem-solving.

1. Bringing forward the review

Burnham’s first reform is to ask Baroness Casey to bring forward the Independent Commission’s review by a year (this time next year, 2027). He said the issue needs urgency and that the review should look at how to create a National Care Service for England.

He described this as a system that would sit alongside the NHS, be highly integrated with it, and still remain person-centred rather than over-medicalised. He also emphasised a principle of “home care wherever possible”, so that people can be supported where they are, instead of ending up unnecessarily in hospital.

“The first thing is to ask Baroness Casey, Louise, to bring forward her review by a year.”

“How do we deliver a National Care Service in England that sits alongside the National Health Service, works in a similar way, that is highly integrated and can optimise the journey of a patient?”

2. Focusing immediately on the social care workforce

Burnham’s second reform is to act now on the social care workforce rather than waiting for the review. He welcomed the already-agreed fair pay agreement for social care staff, due in 2028–29, but said this needs to become part of a wider reform.

He wants the ministerial group to look at how to improve pay, training, security and career progression for care workers, including stronger links with NHS roles. His argument was that a National Care Service cannot be built without strengthening the people at the front line.

“The second announcement is to immediately, and not wait for the review, focus on the social care workforce.”

“We will not get the care service we all want until we improve the strength and the capability of care at the very front of the service.”

3. Starting cross-party talks

Burnham’s third reform is to begin cross-party talks on social care immediately. He acknowledged that attempts had been made before and that he had “some of the scars” from previous efforts, but said this was still the right thing to do.

He linked the talks to his wider promise of a different kind of politics: “more problem solving, less point scoring.” Burnham said a lasting solution would require political parties to listen to one another, find common ground and build a new social consensus.

“The third announcement is to start right now initiating cross-party talks on social care.”

“We won’t fix this through politics as usual. We have to bring a different approach.”

“We’re all going to have to give and take here, aren’t we? If we’re going to get to a solution, we’re all going to have to listen to each other.”

A personal commitment

Burnham closed by saying he would not be deflected by political attacks or “screaming headlines”. He framed social care reform as both a political test and a personal commitment, rooted in his family’s experience and in the lives of millions of others.

“I would never forgive myself if I left without having tried.”

“Why am I going to do all of those things? For my dad and the millions like him up and down the country.”

News articles:

The Guardian Social Care Opinion Piece: Battles loom over social care, but this fight must be won. At last, we have a PM who believes that. By Polly Toynbee

The Guardian Politics Sketch: Andy Burnham wants to fix social care. It’s personal for him and for a lot of us too by John Crace

The Times Politics Sketch: Social care reform? Never works. But it might for Andy Burnham! The prime minister spoke without notes to strike a sincere note but the speech brought to mind a line from the US sitcom Arrested Development by Tom Peck

2. The launch of “The Big Conversation on Care”

Note: I am not affiliated with the commission or any political party.

I signed up to receive the Independent Commission’s newsletter. Immediately after the announcement, I received a short update about the website:

Click here to go to the Website. You’ll see this on the screen:

Baroness Louise Casey of Blackstock, Chair of the Independent Commission on Adult Social Care, introduces The Big Conversation on Care.

The Big Conversation on Care is a chance for everyone in England to have their say on the future of adult social care.

To share your view:

1. Click on “Take part online”.

2. Then click “Submit My Proposal” to go to an edit window.

3. There you can add your proposal and thoughts.

   1. There’s a word limit and you can’t edit afterwards

4. And submit your answer.

   1. You’ll need to confirm your email address.

5. Once your email address is confirmed, you’ll have an account and be able to vote on proposals

This is open for 53 days (from July 29th)

Remember this is an opportunity for anyone to share their views of What does care mean? Who should get it? What should you do as a family? How much could you do for yourself, and how do we get this right?”

In addition the FAQs state that the independent partners of The Big Conversation

“Our independent partners will work with trusted community groups, charities and care organisations to reach these people and others who may find it harder to take part. This could include smaller group discussions, one-to-one conversations or more informal ways of sharing views.”

Add your comments now; real experiences need to be amplified instead of theory or inexperienced opinions!

You’ll be asked one question to start with:

“When we are old or disabled, or have a serious illness, who should support us and how?”

From there, you can share your own ideas, read what other people have said, and say whether you agree or disagree with their ideas.

As more people take part, we will be able to see which ideas and concerns matter most to people, where people agree and where they have different views.

What we hear online will help inform the next stages of the Big Conversation on Care. - From the FAQs

3. July 2026 Newsletter: The Big Conversation on Care is now live Published 31 July 2026

Link to the newsletter

4. Having seen this podcast episode, I have hope….but we all need to share our thoughts in “The Big Conversation”

Andy Burnham on Social Care - Do I Sound Like I Care? Podcast (July 1 2024)

“In this moving and revealing episode of 'Do I Sound Like I Care? podcast, host Louise Lynch welcomes Andy Burnham to discuss the multifaceted challenges of being a carer. The conversation explores Burnham’s personal experiences with caring for his father, who has Alzheimer’s, and the impacts of the 15-minute domiciliary care visit culture.

Burnham reflects on his professional insights gained as the former Health Secretary and his advocacy for a National Care Service. The discussion delves into the emotional and logistical complexities of caring for a family member and the inadequacies of the current social care system. Burnham calls for political courage and systemic reform to better support carers in the UK”. - Louise Lynch

TIMESTAMPS
00:00 Introduction and Initial Nerves
00:08 Welcome to the Podcast
00:52 Who is Andy Burnham?
01:29 The Importance of Social Care
03:12 Personal Family Experiences with Dementia
05:06 Challenges of the Care System
12:46 The Role of Family in Caregiving
21:24 A Call for Help
22:22 The Reality of Care Homes
24:44 Political Perspectives on Care
26:58 The Stigma of Being a Carer
30:12 Proposals for a National Care Service
37:13 Personal Reflections and Family Dynamics
39:04 Concluding Thoughts on Care

Please share this information so that more people add their views into “The Big Conversation” and real, experienced based facts are shared

Share

I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

8. “When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness

9. “Accept Caregiving Help When You Can” by Sue Montgomery, RN, BSN, MA

Subscribe now

Today’s ‘Letter from a Caregiver’ is by Allie Varga

I met Allie at the start of 2026. I could see the depth and breadth of care she’s doing for Glenn. I recommend reading her articles:

• The Doer of “Must” Beyond burnout, there is a quiet, cold place where the work just gets done.

• Pushing Through On caregiving, the NH 48, and the lessons learned above the treeline.

• How It Began An excerpt from Chapter 1 of The Relentless Tide.

I knew, based on our interactions, that I could curiously challenge a note that she’d shared. We decided to open up our messages to a broader exchange in the monthly discussion about caregiving as a Spouse/Partner: “The Lonely Marriage. Exploring the Specific Isolation of the Spousal Caregiver. “

"I recently had a wonderful, deeply honest exchange with Victoria from Carer Mentor about the unique "geometry" of different caregiving relationships. While the emotional toll of 24/7 care is universal, spousal caregiving introduces a specific kind of isolation—when the partner who used to hold you up is the one you are holding together, you find yourself carrying the weight of the "we" completely alone. Victoria and I are opening up this space for a dedicated conversation. If you are a spousal caregiver (or supporting one), please join us, share your story, and read the reflections from our community." Read our messages and the comments from readers; a deeply resonant discussion for caregivers of spouse/partners

—

My hand was over my heart reading Allie’s letter. There’s so much emotion, stress and pain within these lines, and then one powerful word, a sentence that grounds us into what it was all about.

Thank you for sharing your letter with us, Allie. These are always much harder to write than we, or readers, may think.

Author’s Bio: Allie Varga is a writer, former restaurant owner, and family caregiver based in Gloucester, Massachusetts. Drawing from her background in sociology and her own lived experiences, her work candidly explores the complex intersections of trauma, identity, and the quiet realities of long-term caregiving. As part of her own journey toward healing and self-preservation, she completed hiking all 48 of New Hampshire’s 4,000-foot peaks in three years following her husband’s stroke. That arduous path taught her about grit and revealed the strength of granite inside her, themes she explores in her first memoir, The Relentless Tide. Through her personal essays and long-form memoirs, Allie gives voice to the unspoken moral, emotional, and systemic burdens carried by family caregivers, offering readers a raw, unflinching look at love, duty, and resilience.

A Map Already Torn

Burlington Hospital, Burlington MA February 23, 2022

To my younger self,

You are standing outside those ICU doors, holding that cup of coffee, terrified to your core. You think your job right now is to be the saviour. You think that because Glenn said he wanted everything done, that he wanted all life-saving measures taken, you have to sign the papers to keep him here.

I need you to put the pen down. I need you to let him go.

But more than that, Allie, I need to tell you something about you.

You are standing there trying to make a heroic, life-or-death decision for a marriage you weren’t ready for. I know you feel like you have to prove your devotion, but the truth is, you entered this love story with a map that was already torn. What your father did to you stole your blueprint for how to love, how to be loved, and how to feel safe in your own skin. You didn’t know how to set boundaries because you were never allowed to have them.

Because of that, you are going to spend decades wondering if the screaming, the fighting, and the misery were your fault. You will torture yourself trying to figure out if you caused the wreckage, or if he was a narcissist, or if the two of you were just breaking against each other.

My mom asked me last night if I had the chance, would I do it all over again. I have been asked this question many times in my life, but this was the first time I ever said no, I would not. Life has been a struggle. I am sickly exhausted and see now that I will never know true happiness. My entire adult life will be spent living for other people.

I am writing to tell you: you do not have to solve that puzzle.

Glenn’s survival will turn into a prison of daily, relentless physical pain for him that no medicine can quiet. His aphasia will trap his mind and turn all his fear into a screaming rage directed entirely at you. If you sign those papers, you are signing up to be his 24/7 prisoner and his target.

In a way he was being selfish when he asked for this, Allie--he didn’t know any better. You listened—you didn’t know any better. I am here to tell you the truth. He wanted to float, but he had no idea he was asking you to drown to keep him up. And you, carrying the quiet trauma of your childhood, will think you have to drown to be worthy of love.

You don’t.

Letting him go in that hospital is not a betrayal. It is the only act of mercy that can save him from a life of torment, and save you from a slow, grinding erasure. You have carried enough pain for one lifetime. You are allowed to choose your own survival.

I still ask myself why the doctors try to save these lives—why they even offer. They know what the outcome will look like, yet they still hand you the choice. Why do they do this when they know there are no support systems waiting on the other side?

They will stand over you in white coats, speaking in sterile clinical terms like “decompressive hemicraniectomy” and “midline shift.” They will present it to you as a question, as if you are being given a choice. But Allie, it is a false choice. The medical system is built to preserve biological life at all costs, yet they outsource the catastrophic moral weight of that preservation onto a terrified, exhausted spouse sitting in a vinyl chair.

They offer to save his life, but they never define what “life” actually means after the machines stop humming. They ask if you want him to live, knowing full well that saying “no” feels like murder, and saying “yes” binds you both to a lifelong sentence of caregiving and silent grief. The neurosurgeon will offer a warning in clinical shorthand using words like “difficult” and “severely disabled.” Looking back, you will realize he might have been trying to steer you away, quietly signaling an exit ramp you couldn’t bring yourself to see. But in the noise of that crisis, you weren’t tuned to subtle cues or unsaid warnings. They give you the authority to sign the paper as if you are capable of making a sage decision under the duress of acute trauma.

For a long time, you will blame yourself, calling yourself a fool for not reading between the lines and signing those papers anyway. But it was never about foolishness, and it wasn’t even about a desperate wish to hold onto him. It was about respect.

Glenn had been unequivocal: he wanted every life-saving measure taken, no matter what. You had asked him the hard questions long before that day, and his answer had always been an emphatic “yes.” So when you pick up that pen, you aren’t ignoring the surgeon; you are honoring your husband. You are trapped between two choices with no happy ending: saying yes to the sacred obligation to respect his wishes or saying no and being responsible for the decision to end his life.

Put the pen down, Allie. Take a deep breath, walk back into his room, hold his hand one last time, and whisper goodbye. Let him rest while he is still whole, and let yourself live while you still have a life to live. It isn’t abandonment; it is the ultimate act of love—for him, and finally, for yourself.

Love

Allie (2026)

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

It is hard to choose just one, as the things that sustained me before the stroke are so different from what sustained me after. But if I have to choose the one line that anchored me in the wreckage, it is this: “It is not enough that we do our best; sometimes we must do what is required.” (Winston S. Churchill). I read this in the aftermath of Glenn’s stroke, and it cut through all the noise. It stripped away the naive idea that good intentions are enough, forcing me to confront the stark, terrifying truth of what duty actually demands when everything has fallen apart.

Prompt for Discussion

If you were forced to stand outside those ICU doors today, do you know what your line in the sand would be? Have you ever thought about what “doing what is required” truly means in your own life?

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

Today’s advice is from Megan Devine1 because the insights in her video struck a chord with several conversations I’ve had over the last few weeks.

Have you been grief-splained? Perhaps you’ve been both care-splained and grief-splained!2

Unsolicited advice, even from someone well-intentioned, can be unhelpful.

Of course, we’re all only human. Human-ing is challenging when we see those we love in pain. We want to help.

Being aware and mindful of our communications with those in grief or any emotional pain is essential to ensure we’re not adding more hurt on top of that pain.

In a world of hyper-speed time, we’ve become conditioned towards productivity, goals, promotion, visibility, and status as societal 'norms'.

Our basic instincts are wired —primed to respond. We are not necessarily listening to understand but waiting for words that give us a platform to launch our response.

When we see emotional pain, we need to retrain ourselves to slow down, create space and listen to understand instead of trying to interrupt with a quip or piece of advice.

Are we trying to validate our presence or gifting our empathy and time? Something to ponder.

Megan’s insights help us be aware of how our communications can impact others and offer us the space to see and hear the bigger picture and context of someone who is grieving.

Her thoughts resonate for any caregiver who, like me, finds themselves always playing the ‘bad cop’ role. Why we don’t do xyz. Why that’s a nice suggestion but..

It would be lovely if I could say, ‘no’ and not have to give a list of reasons, qualifiers and explanations but could confidently outline ‘how we do things’ and simply receive a ‘Sure, no worries, that’s fine.’

Summary

While people's intentions might be good, that doesn't mean all advice is good! Everyone's got an opinion... But most people don't check whether or not what they said was what we needed! - Megan Devine

This is an edited version of the video transcript

0.00 Intro

0.23 The problem with good intentions

Just because someone has good intentions doesn’t mean you can’t set a boundary or let them know their advice is unhelpful.

We think our job is to make other people feel better so we're doing what we think we're supposed to do.

If somebody tells you that what you're doing isn't helpful the temptation is to get defensive ‘I was only trying to help’.

Well if you were only trying to help and your intentions really are good, then you need to be willing to hear that what you're doing isn't helpful.

You're going to feel uncomfortable you're going to feel in some ways kind of ashamed or embarrassed about what you said but that is okay, that is part of Being Human.

If you really do have good intentions then you need to be willing to be corrected in order to deliver the love that you actually intended. You have to be willing to be a work in progress in order to deliver those good intentions that you actually have.

If you are not willing to hear that what you're doing is not helpful, then you are more interested in being seen as helpful than actually being helpful and there is a difference.

3.59 Criticism

“They wouldn't want you to feel sad or they would want you to remember the good times.’ Telling people that they shouldn't feel how they feel is I think of it like the ghost part of a sentence we don't usually say that out loud but if I say to you ‘hey your dad wouldn't want you to be so sad’ what I'm really saying is so stop feeling how you feel because it's not right, it's not good. You got to quit it stop grieving the way that you're grieving like that is always the message inside unsolicited advice.

Unsolicited advice is always criticism. Unsolicited advice is always criticism I look at you and I say m you're not doing it right so maybe you should do it this way.

That sounds like a really harsh description of those good intentions but if somebody did not ask for your opinion you giving your opinion about what they should do better or differently is Criticism

For this conversation today we are talking about people who truly do want to show up for you and be supportive they're just not doing it right.

If somebody has said to you “they wouldn't want you to be sad’ what are you going to do with that?

You have a number of options remember that we're going to assume that this is a person who does have good intentions their intention is to be supportive to you so what can you say is, ‘Hey what you just said to me doesn't feel very helpful I know your heart's in the right place, pretty sure my dad would want me to feel however I feel.’ It is okay to tell somebody that their helpful help is not that helpful.

5:06 Rudeness

Current second least favorite piece of unsolicited advice or trying to make you feel better thing that we say to people. ‘You're going to come out of this even stronger and better than before now that you know what's really important in life.’

It's basically cheerleading masquerading as being supportive you are going to be such a strong amazing wonderful person because of this experience. The part of that sentence that isn't usually said out loud is you clearly weren't a strong resilient person before this happened and you needed this intense loss to happen in order to become your best self

That is rude! We don't think about that thing that we say to somebody who's going through a hard time that this experience is going to make you stronger. There's this like pop psychology thing that has been around forever that says the only way you become your true self is through hardship like that is garbage

One of my favourite things about pointing out what we're actually saying in these kinds of statements is how quickly people with good intentions backpedal. ‘That's not what I meant by that' like I obviously thought you were a good person before!’

But it's like once you show somebody what you're actually saying it makes it really hard to keep saying that stuff. Those unspoken parts of the sentence are there and they are felt even if we don't say them out loud.

Most of the things that we say to somebody who is going through a hard time are actually really crappy things to say if you take a moment and think about what that message really is.

7:18 when you diagram the sentence basically you can really hear how rude, dismissive and nonsensical that stuff is. So if you're you're on the receiving end of that and somebody says you're going to become such a better person you're going to be such a gift to the world you're going to be so strong.

You have some options here you can do the quick and easy route that just says I know you think that that's helpful but that says that I needed this terrible thing because I was such a bad person before that I needed this kind of self-improvement.

The shortest thing you can say is I know you think that that sounds helpful but it tells me that I wasn't good enough before this happened

You can say things like you know I know you mean that to be helpful but what I hear when you tell me that this is going to make me a strong person is that you didn't think I was strong enough before this happened IS THAT TRUE

Using ‘Is that true?’ at the end of the feedback

At the end of telling them the advice was unhelpful, invites conversation, a do-over opportunity. Is that true it puts it back on that person with those good intentions to do the work to think about the things that you're doing and if we care about each other can we be willing to hear uncomfortable reflections and do something a little bit more helpful and human.

Can we put that relationship first and do the awkward work of caring for each other in this moment

9.34 Literal advice

‘Maybe you should try this’.. all you're doing is saying this worked for me and I think the entire world is a carbon copy of me.

It erases the fact that people have their own lives their own preferences you are trying to solve your problem for them without finding out if that's even a problem they have

The instinct to make somebody feel better is not bad it's what we do out of that instinct that is less than ideal if you are on the receiving end of.

The just try some more broccoli or whatever that flavor of ‘do this because it worked for me’ if you're the recipient of that, what are you going to do?

Boundaries

Boundaries can be as simple as saying, ‘That's not very helpful but I appreciate you care’. Sometimes you don't have the bandwidth to have a highly skilled in-depth conversation with somebody who has good intentions. Sometimes you just do not you don't have the bandwidth, you don't have the time, it's not the right place.

You just can't be bothered in this moment and that is okay too.

Sometimes the smile and Nod is your best option because that's all you have the energy for.

You can just say,' ‘thanks for the advice maybe I'll try that’, and walk away.

The point here, is that if somebody needs to feel uncomfortable in those awkward conversations it doesn't have to be you and you can also just leave. That's a boundary too putting on your hat and heading towards the door is a boundary

For those well intentioned friends offering advice

Creating the space is often the hardest piece. Slowing down to hear, to really listen, before jumping to respond is not our default setting.

I try hard to always lean into empathy first, but I’m only human. I get it wrong too.

It’s especially hard to pause when I see caregivers at the start of their journey. Everyone’s journey is unique, yet many pieces are similar. Seismic emotions are our common denominator and it’s hard to not jump in to try and pre-empt someone going through the hard emotions.

Caregivers are hard-wired over time to pre-empt the needs and wishes of our loved ones. Anticipate risks. Assess the trade-offs of risks versus benefits ahead of time, so that we can have more quality time together.

Offering insights and information when someone is seeking advice, is a safe bet.

‘I take my cue from you’ is a my go-to phrase for both my business mentees and other caregivers.

Leading with empathy opens up the possibility of sharing more.

For Caregivers, and a few counter-responses for caresplainers

A caveat for any receiver of advice. Decide how much energy and effort you can afford to invest in the conversation. I have a rigid self-protection boundary because time is my most precious asset as a caregiver.

A reminder. Depending on the person, the existing relationship, your energy and time— you may decide to smile, say thank you and give an excuse to leave. After all, in that moment you’re the one that know’s best.

Being aware and mindful of how we want to respond to communications is equally important.

There have been a few times when the person offering advice is thinking less about being helpful, or simply not thinking.

Sometimes there’s a personal agenda. E.g. proving they know more, wanting to be the ‘hero’. Other times culture dynamics are subconsciously at play.

Here are a few backup phrases I’ve had to cultivate to set a hard boundary with these caresplainers.

• Thanks, but no, that’s your opinion. I/we are not doing that.

• I respect that, that was your decision/how you did things (or maybe not). Please respect our decision(s). NO

• I hear you. Yes. Tried, tested, and we decided no. Thanks. …Moving on.

• No, thank you. I don’t have the time or energy to explain our decision making and reasons with you. We don’t need more advice or ideas.

  • You may think you’re entitled to an explanation, but you are not/I can’t give you one.

• Thanks, but we’re not looking for/didn’t ask for more ideas/solutions/opinions.

Please note the avoidance of our very english tendency of saying ‘I’m sorry, but…’

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• In the UK and Ireland, Samaritans can be contacted on freephone 116 123.

• In the US, you can call or text the 988 Suicide & Crisis Lifeline at 988 or chat at 988lifeline.org.

• In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org

• How can I help someone else to seek help for a mental health problem (by MIND a UK charity)

This list is based on recommendations

Please let me know if you have recommendations for your country.

I am not sponsored, paid or employed by any of these organisations.

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UK Organisations

• Recommended for Carers

• Cancer Support

• Dementia

• Cardiovascular

• Rheumatoid Arthritis

• Respite Support

• Helpful organisations that offer advice, listening services, and support.

USA Organisations

• Caregiver organisations

• Dementia

• Cancer

• Cardiovascular

Canada

• Dementia

• Amyotrophic Lateral Sclerosis

• Cancer

• Cardiovascular

Global Useful Websites

• Travel

UK Organisations

In the UK, the NHS defines an Unpaid Carer as

A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.

Recommended for Carers:

1. Carers UK: For unpaid carers with expert information, advice and support. A Carers discussion forum (anonymous participation). Campaigning to make life better for carers

2. mobilise 'Together we care and thrive'

3. Contact For families with disabled children

4. Flexa ‘Find your dream place to work. We find companies that you can trust, so you can find where you belong.’ Flexible work, remote work, and inclusive

   1. News article for LGBTQIA+ during PRIDE

5. Better Health (NHS) Every Mind Matters

   1. “Looking after a child or young person's mental health

      As parents and carers, there are ways we can support our children to give them the best chance to stay mentally healthy.”

   2. Helping others with mental health problems

      There are lots of things you can do to support someone you know who might be struggling with their mental health.

Cancer Support:

1. Maggies: Everyone's home of cancer care

2. Macmillan Cancer Support. 'Because cancer can affect your life in so many ways, we do whatever it takes to give people the support they need.'

Dementia

• This resource has been written by a carer I met via Carers UK:

  Dementia Guidance: For people with dementia, Their friends and family.

What is Dementia Guidance?

Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families. 
My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved. 
Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.
In our own case we have found them out merely by chance.
 I have included one or two suggestions that involve some cost but I would strongly advise you consider them. 

By Derek contact@dementiaguidance.co.uk

• Dementia UK

• Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?

• Alzheimer’s Society (UK)

• Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here

• Memory Cafés. Support groups

Cardiovascular Disease

• British Heart Foundation

  • Caregiver support.

  • Information and support

  • Support groups and online communities

  • Heart Failure

    • NHS heart failure information.

• Stroke Association

  • Caring for a stroke survivor.

• Kidney Disease: NHS Information and Signposting to other organisations

Rheumatoid Arthritis

• National Rheumatoid Arthritis Society (NRAS) - support

• Versus Arthritis

Respite Support

• Carefree Carefree Transforms vacant accommodation into vital breaks for unpaid carers

Helpful organisations that offer advice, listening services, and support.

• Age UK

• Carers Trust Young Carers Advice and Support

• MIND Crisis and Listening services If you need to talk right now, there are many helplines staffed by trained people ready to listen. They won't judge you, and could help you make sense of what you're feeling.

• UK Citizens Advice website

• SCOPE We are Scope. We’re here to create an equal future with disabled people. We campaign to transform attitudes to disability, tackle injustice and inspire action. We create opportunities and provide information and support that empowers.  One in four of us in the UK are disabled. We are a diverse, proud, and vibrant community. We are part of a powerful movement of disabled people, allies, organisations and businesses. And together, we will be unstoppable.

• Carers UK and Access Ava. Free legal information for unpaid carers

  As a carer, it might sometimes feel like you need to be an expert in the law just to make sure your family member or friend gets the support they have a right to. 

  Carers UK has teamed up with Access Social Care, a charity that specialises in legal advice for people with social care needs, to help you access easy-to-understand health and social care information at the click of a button.  

  AccessAva is an online tool that helps you understand the law governing social care in England. With AccessAva, you can find out about your rights and those of your family member, and complete template letters developed by expert lawyers.

• UK Hospice Care Finder

• Cruse. Grief can be overwhelming. You don't have to do it alone. This has been recommended by several caregivers to me.

USA

1. As recommended by in her article 'Resources for Family caregivers’

   1. AARP Family caregiving.

   2. AARP Care Guides

2. Family Caregiver Alliance

2. who writes The Other Parenthood suggests Calling a Senior Care Specialist

3. in her article ‘In caring for aging parents, can we see assisted living as assisted loving?’ writes about how she chose a memory care clinic for her Mom. She was offered free advice and guidance on senior care options from the organisation ‘a Place for Mom’. A local agency ‘Senior Living Selections’ provided ‘advice on the types of care available—in-home care agencies, elder day care centers, assisted living facilities, how to find other resources like elder care attorneys or social workers, and practical information on the cost of services and what Medicaid and Medicare did and didn’t cover.’

4. Care.com Connects families with local caregivers

5. Careyaya “Changing how America cares for its elders. 50,000+ healthcare students at Harvard, Stanford, and other top universities working to fight back and build a better future for caregiving.”

6. Highlighted in this article by “Exporting Our Elders. Unable to afford care at home, some families, including mine, are moving their elderly relatives abroad.”

   1. ElderCare Global “Elder Care Global helps families explore high-quality senior care options focused on Mexico and Panama. Offering an elevated standard of care, asset preservation, and a path to healthier, more enjoyable living. We provide personalized guidance on senior care insight and logistics, so you can make confident, informed decisions”

   2. Carescout.com “Age with confidence — with customized tools that support you or your loved one every step of the way.”

7. Caring Bridge “In 1997, our founder, Sona Mehring, had the idea for CaringBridge when she offered to support her good friends, JoAnn Hardegger and Darrin Swanson, keep everyone updated after the premature birth of their daughter, Brighid.

   After making emotionally taxing and time-consuming calls, Sona knew there was a better way. She created a website to keep everyone connected and surround JoAnn and Darrin, with support - and CaringBridge was born.

   Since that day, CaringBridge has remained committed to surrounding family caregivers with support while they care for a loved one on a health journey.”

USA Caregiver Support Organisations

• Rosalynn Carter Institute for Caregivers

• Caring Across Generations

Dementia support organisations

• Beyond Memory: “Dementia is often misunderstood, but getting the right information is the first step to helping yourself or someone you know..”

  This website has a lot of information and direct caregiver experiences. I recommend exploring the pages and resources.

  

• Alzheimer Foundation of America

• has curated this directory “Dementia Care: It Takes A Village: reading, resources, services, podcasts & media”

• shares her experience and other resources in her article ‘Caring for my mother with dementia is an act of love that nearly broke me’

• Memory Cafés Support groups.

Cancer organisations

• American Cancer Society and their Caregiver Resource Guides.

• Caregivers and Family Support by the American Cancer Society.

• National Cancer Institute Search engine of resources and information.

Cardiovascular Disease

• American Heart Association

  • Caregiver support

• American Stroke Association

Peer Support, Patient Groups, Caregiver Groups

A recommendation by as a comment to article ‘Low Priority’. Here’s the comment from Patricia that peaked my interest.

I am active as a moderator with AnCan, and I am excited to share that we do have caregiver groups designed for those who have advanced cancer as well as for our Bereaved caregivers/care partners. AnCan is a virtual support group and covers all types of cancer. For anyone who is interested, if you go to AnCan.org you will see the different groups they have available.

From the AnCan website:

Our Vision

AnCan’s vision is to provide easily accessible, inclusive virtual peer support for every serious disease and condition allowing widespread participation, especially to those geographically, physically or socially disadvantaged.

Collaboration with other non-profits underpins our strategy.

Organisations supporting widows and widowers:

has shared several recommendations:

• Modern Widows Club: An international community offering in-person and virtual support groups, events, and resources for widows to connect, find hope, and empower themselves.

• Soaring Spirits International: Provides peer support and resources through programs like “Camp Widow,” a weekend gathering for widows, and "Widowed Village," an online community where people can connect and share experiences.

• Hope for Widows Foundation: A nonprofit organization providing online support, local chapter meet-ups, and an annual financial grant to help widows in need.

• Widowers Support Network: A worldwide organization dedicated to healing hearts and saving lives of men who have lost their spouse or life partner.

• National Widowers Organization: A nonprofit organization dedicated to providing support, resources, and advocacy for men who have lost their spouse.

• Camp Kesem - A wonderful free summer camp program designed specifically for children who have lost a parent to cancer. It’s run through many universities across the country. The camp creates a supportive environment where children can connect with peers facing similar experiences.

• National Alliance for Grieving Children - Offers local and online support groups, resources, and webinars focused on helping grieving children and families. Also, provides education for parents and caregivers on how to support grieving children.

• The Dougy Center - Provides peers support groups, grief resources, and advice for parents and caregivers.

• CancerCare’s Bereavement Program - Offers professional support for families who have lost a parent to cancer. The programs include counseling, support groups, and workshops.

Canada

Dementia

• Alzheimer’s Association Canada Alzheimer’s and Dementia Resources

• Alzheimer Society of Canada. There are local affiliates in different provinces. You can find yours here.

• The Association of Frontotemporal Degeneration. Resources in Canada

Amyotrophic Lateral Sclerosis

• The AlS Society of Canada The ALS Society of Canada is working to change what it means to live with amyotrophic lateral sclerosis, an unrelenting and currently terminal disease.

Cancer

• Canadian Cancer Society

Cardiovascular Disease

• Canadian Cardiovascular Society

  • The Heart Hub

  • Heart Failure Medications: A Patient & Caregiver Guide

Global Useful Websites

Thanks to for this useful travel website Wheel the World.

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Sometimes we need to be reminded that even the smallest acts of kindness offer hope.

I’d like to curate these small acts into an anthology of moments we can share and return to. Not just for carers but everyone who’s looking for hope in our human-ing.

Whether you’re the person acting in kindness or the person receiving it, I’d like to hear your story.

Seeing beyond the blind man by Victoria

We finished the hospital appointment. Tired but relieved, we decided to get a coffee from the small coffee shop while we waited for our taxi. I manoeuvred the wheelchair to a table, slightly apart from the rest. There were the usual stares. I don’t know what attracts the most attention these days: the masks, the wheelchair, or being Asian. Certainly, the combination of all three seems to guarantee an audience. The seating area was functional. It wasn’t set up for warmth or welcome. Practical and clean over comfort. Still, it was a restful spot in a busy city hospital.

I took Mum’s coffee back to our table and sat down. As I stirred in the sugar, I saw a nurse guide a tall man with his white stick to a seat. I tried not to stare. I marvelled at how he managed all his belongings. Two large bag straps criss-crossed his body. Saddled with his wide load, he sat with a sigh, reassuring the lady he’d be fine. She couldn’t see the concern on her face as she patted his arm and left.

Mum and I started to debrief about what the doctor had said. There wasn’t a hum of chatter around us. Conversations were stilted, stuttered and awkward. I could feel the tension between one couple, and hear the tearful anxiety from a woman near us. Their actions and faces spoke volumes

I saw the tall man get up. He’d disentangled himself from one bag and was heading to …the coffee shop? No, the toilets.

Mum was asking me something, so I turned away. The coffee lid was stuck again.

The guy was in front of the toilets, but the women’s. He was trying to feel for a braille sign. Why isn’t anyone getting up to help him?

One couple was obviously trying to ignore him and move away. Others were staring but immobile. These are the times I get frustrated.

I checked Mum was okay, got up and walked over to the man.

“Hi, Sir. Can I help you? I think you’re looking for the men’s toilet, but that’s the women’s?’

“Ohhhh thanks! Yeah, can you?”

We backed out slowly from the women’s toilet. He took my arm, and I guided him through the doors of the men’s toilet.

“Ok? I think you just need to step forward and the urinals are there”

“Thanks so much, Luv”

“No problem! Have a good day”

I walked out. People sitting around were staring into their cups of coffee.

As I sat down, Mum asked if the guy was okay.

I kept an eye on the man’s possessions until he navigated his way back to his seat. I think the most daring thing he did was leaving his things unattended.

I hold on to the hope that anyone would’ve done the same despite the higher levels of anxiety and tension palpable in the sterile, hospital environment. I was just the first there.

Still, a cynical and sad part of me wonders if we’re all being conditioned to be spectators, observing, scrolling, and passing by? Are we too overwhelmed by our own worries to help someone else? Can we widen our view beyond what we need to get done, and offer small acts of kindness?

Can you share an act of kindness?

• Share a random act of kindness in the comments below, as the giver or receiver.

• Or share the URL to something you’ve written on Substack, an article, or a note

  • Please keep it to 550-words or less. I’d like to keep these gems short!

  • If you write something new, please mention this initiative and, if possible, use the logo. Thank you!

• I’ll curate an anthology of experiences to help fuel our hope.

Please share this request, and press the ❤️ to guide others to this Anthology.

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

8. “When Wishes Come True” by Cindy Roman, who writes Alzheimer’s Witness

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Today’s ‘Letter from a Caregiver’ is by

I met Sue earlier this year. I could tell from her writing and comments on other articles that she has a wealth of professional and personal experience, caring for others. Her warmth and empathy for others are clear in the way she shares and offers others support.

I invited Sue to join our Carer Mentor Community Network team to support the monthly discussions about Eldercare/caring for parents. Sue provided her insights as part of the June Eldercare/Caring for Parents Discussion: “The child-to-parent dynamic.”

Sue’s letter brought back memories of caring for my father - the fun moments, the bittersweet moments and the depth of love we shared even in the toughest times. Thank you, Sue.

You can read more of Sue’s at her publication: Organize the Essentials LLC. For example, you can learn more about palliative and hospice care in this article, by Sue: 3 Ways Hospice and Palliative Care Are Different. When we talk about hospice and palliative care, the two terms often exist within the same breath.

This was the first article I read by Sue: Why We Need to Change the Language of Family Caregiving. Words matter more than we may realize.

Author’s Bio: is a former critical care and hospice nurse, seasoned family caregiver, healthcare copywriter, and bestselling Christian fiction author. Both in her professional career as a hospice nurse and with loved ones, she’s experienced the sacred space that’s possible at the end of life. That’s why it’s a passion of hers and why her focus is on providing resources that support peaceful dying. Sue’s publication: Organize the Essentials LLC

Accept Caregiving Help When You Can

Dear younger me,

I’m writing to give you a heads-up about how things will be when Mom dies. Maybe I can help you deal with all the pain you’ll feel by better preparing you for it.

Because let me tell you, you’re going to think you’re ready, but you won’t be. Instead, you’ll feel like your foundation has been yanked out from under you, and you won’t believe that she’s actually gone.

But I’m getting ahead of myself.

By the time Mom steps into Jesus’s arms in 2015, you’ll have been taking care of her nearly 24/7 for four years. But she’ll have lived with you and Dave almost ten (She’ll reluctantly move in after she breaks each hip six months apart, and Dave invites her to live with you guys. Of course, you invited her, too, but his invite seals the deal).

She’ll enjoy a lot of independence the first six years. But in 2011, things will start going downhill. It’ll start the evening her robe catches that mug on the low shelf in the kitchen – which bounces off her lower leg and leaves a bruise.

Pay attention to that bruise.

Despite your efforts to keep it in check, her blood thinners will mean that lower leg will gradually fill with blood – resulting in a lot of pain, two surgeries, a MRSA infection, IV antibiotics, and eight months of daily dressing changes for that massive post-op wound.

But through all that and in the years after as her health declines, you’ll confirm what you knew all along: you and Mom really love each other, and you make a great team.

You’ll laugh together, cry together, be mad at each other, forgive each other, and make up lots of stories that one will start and the other will finish - just like when you were a kid. Some of the most hilarious will include Stuart, your pet rat.

Yes, you’ll have a pet rat.

He’s white and apparently belonged to someone else before Dave found him all alone in the bushes. Since Dave rescues every stray he finds, you’ll know he’s coming home with him - which is why you tell Dave right off that he has to keep him in the garage. You’ll take him to a vet to make sure he’s healthy, listen to them rave about how smart and affectionate pet rats are, and then shock everyone by bonding with him while Dave is away at a conference. Dave will build him a condo, and your sweet Boxer, Rocky, will think you’re all nuts.

But this letter isn’t about Stuart. He just reminds me of how much fun you and Mom had together, which is so important.

Fun, that is.

Because within the tedium and exhaustion you’ll often feel in the midst of being a caregiver for so many years, it’s easy to let it go.

But don’t.

Fight for fun.

Yes, these will be Mom’s final years. Yes, you’ll dread how much you’ll miss her when she’s gone. Yes, feeling rested will be a thing of the past. But don’t let all the hard stuff put a kink in your ability to have a ball together. As Mom will tell you during her steep decline in the last few weeks before her death, “Don’t be maudlin, Sue.”

For the most part, you’ll do a good job of keeping fun in the equation, because the two of you are kinda crazy together.

But here’s something important I want you to know: there will be so many times when you’ll feel like you should do everything for Mom. That since the two of you have always been a team, and you’ve always taken care of her, you shouldn’t let someone else come in at the end to help.

Namely, hospice.

Yep, can you believe it?

With all your years in hospice, you know how much easier things are when there’s help with bathing and nursing care, but you’ll think you should continue to do all that yourself. That you’re somehow letting Mom down if you don’t. That you’re the only one who knows how to do what’s best for her.

But you’re not.

In the last three weeks of her life, she’ll transition from a wonderful palliative care program into hospice. Since you’ll be really tired by then, please accept the visits from home health aides to help you with her bathing. It doesn’t mean you have to give up everything, but it’ll help both you and Mom to have that extra support. And when shift nursing is offered in her final days, accept that, too, so you can actually stretch out and get some sleep.

Because that last week of her life? It’s going to be the longest of your life. And you’ll need the support. Like you’ll tell a dear friend who comes to help, it’ll be harder than you thought it would be.

But here’s something you’ll always be grateful for: when Mom dies, you’ll be right there with her. In fact, it will be one of the most powerful experiences of your life. You, holding her hand. Her, one foot in heaven and one on earth. It’ll feel like you’re looking over her shoulder at Paradise ahead, wishing you could tag along.

Just before she dies, you’ll be nearly at your breaking point, ready to step out to breathe for a bit. But don’t. Stay. The fact that you did will be a huge comfort to you after she’s gone.

The moment she takes her last breath, in her own bed, with you by her side, you’ll fall to your knees with gratitude. Thanking Jesus that she got to live her final season the way she wanted to. And that she is finally, peacefully Home.

But the next morning, your waking thought will be, “This is the first day of my life learning to live without my mom.”

And over the days, weeks, and months to follow, the depth of your grief will surprise you. You’ll find out you weren’t nearly as ready as you thought you were.

While that will be more painful than you ever expected, it will also drive you closer to Jesus than you’ve ever been. That shift will be a turning point in deepening your intimacy with Him. Savor it.

Oh, here’s something else. Don’t enroll in that second graduate program while you’re in the midst of the other. It’s just a goofy, knee-jerk response to your grief, and you won’t finish that degree anyway.

And one more thing (I know, I keep adding stuff, but it seems like there’s so much to tell you).

In the season right after Mom’s death, you’ll be vulnerable and lost without your identity as a caregiver. Which will mean you won’t have healthy boundaries. So, work on that before you go riding in on your white horse and getting in over your head to help everyone you meet who’s in need.

Take time to heal. To learn from everything you’ve been through. Once you do, the Lord’s going to use all that – and you – to help the specific people He places in your path.

Finally, please know I’m proud of you – and Mom is, too. It’s been 11 years since she died, and I still think of her and miss her all the time.

But yellow butterflies remind me that she’s near. And I know she’ll be there waiting for me when it’s my time to come Home.

Love,

Sue

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

I love to read all kinds of things, but the foundation of inspiration for me is the Bible. And here’s one of my favorite passages: “Yet I am always with you; you hold me by my right hand. You guide me with your counsel, and afterward you will take me into glory.” Psalm 73: 23-24

Prompt for Discussion

As a caregiver, what’s one way you’re making sure fun is part of the equation? It doesn’t have to include your loved one, maybe just something for yourself.

And if you’re so exhausted that fun seems impossible, what’s one small thing you could do to change that?

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The Premise for these monthly discussions: different relational dynamics within caregiving.

Carer Mentor offers heartfelt empathy for caregivers. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, we’re united by universal life experiences: birth, death, feelings, and vulnerabilities; our humanity.

Another dimension we don’t often discuss is the relational dynamics of caregiving. I focus on eldercare/caring for my parents, but many friends care for their spouse/partner, child, or sibling. In addition, these days we recognise that caregiving stretches beyond blood ties. Various forms of kinship care, care communities, or caring among chosen family are emerging. While we may share experiences of caregiving as a whole, I’m curious to explore these caregiving relationships and offer caregiver-friends a space to connect.

This is why I started this new collaboration project to facilitate more community connections and discussion: Carer Mentor Community Network. The project involves monthly discussion groups.

• July 3rd: Caregiving as a parent discussion “The 75 Second Ride: What a Roller Coaster Taught Me About Preparing for Everything and Being Present for Nothing” by Amy J Brown , who publishes More Than A Caregiver

• July 10 “Eldercare /Caregiving for parents” discussion focused on a discombobulating question “Doesn’t caregiving get easier over time?”

Our collaboration team members

I’m pleased to introduce you to our 12 team members. Each person has a publication in which they share their thoughts on caregiving for an older family member, friend, or parent(s). Click each name to find out more about them.

3. Cindy Roman

8. Marina Ortiz Caiuby

10. Patricia Paddey

Important details

• Mark your calendars: Caregiving as a Spouse/Partner discussions will be on the THIRD Friday of every month.

• The discussion will start on a Friday, but won’t close. Join on Friday or over the weekend, or whenever you can. No pressure, we know how precious and unpredictable our time can be.

Victoria: I asked Allie if we could share our recent exchange of messages. It’s a great example of how, together, we can gain a deeper appreciation of each other’s caregiving challenges and amplify them for the benefit of others. Too often, all types of caregiving are ‘lumped together’.

My hope is that you feel you can freely share whatever you wish, knowing that this is a dedicated space and lens for your caregiving. My thanks to Allie for being open to my thoughts and for agreeing to share our notes.

“The Lonely Marriage: Exploring the Specific Isolation of the Spousal Caregiver.” By

The Spark: It began with a Note I posted on Substack, reflecting on a structural boundary I often observe in the caregiving world:

“There is a profound, structural difference in caregiving that people outside this life rarely see.

When a devoted partner helps care for a parent or an aging relative, it is undeniably brutal. But at the end of a grueling day, they often still have a peer to come home to—a partner to help carry the emotional weight, share the mental load, and remind them of who they are outside of the crisis.

As a spousal caregiver, the partner who used to be your soft place to land is the person you are caring for. Your refuge is what was lost.

You aren’t just navigating the physical labor of another identical tomorrow; you are quietly grieving the loss of parity inside your own marriage, carrying the entire weight of the “we” completely alone in the dark..”

The Friction: Victoria gently and rightly pushed back on this comparison, via a direct message to me, sharing a perspective that is crucial to the broader caregiving conversation:

Hi Allie - just a quick DM, about your note: I hear you and understand why you’ve written what you have but I just wanted to share a personal opinion here (not on the Substack notes) that your message leaves out the single, childless or single parents who care for ageing/elderly parents, or my own living 24/7 with my Mum, or the sandwiched gen who are struggling with work/kids/partner...your comparison assumes a lens of ‘grass is greener’ for eldercarers who have a spouse...I’ve seen some situations like that and many others where the carer doesn’t feel they’re doing anything well...Every caregiver I met is trying to reconcile and sustain their sense of self beyond being a carer...even with support from friends/a partner/others... I’ve not met anyone whose identity isn’t impacted heavily by caregiving. I feel your frustration, pain and I don’t see any caregiving situation better-off than another - such is the state of caregiving today.

The Deeper Truth: When I re-read my initial words through Victoria’s lens, I realized how easily they could sound like a “grass is greener” comparison. That was never my intent.

The identity crisis, the exhausting day-to-day grind, and the heavy emotional toll are universal for anyone in a 24/7 care role. The immense burden on single, adult-child, or “sandwich generation” caregivers is undeniable and deeply brutal.

My frustration did not come from comparing hardships, but from trying to articulate a very specific, deeply personal layer of the spousal lens.

When your spouse is the one who requires total care, it introduces a unique kind of isolation. You are completely alone within the marriage.

The person who used to be your anchor, your sounding board, and your romantic partner is now your full-time charge.

Personally, I deeply crave intimacy and closeness, but the profound grief of spousal caregiving is that the peer you long to turn to for comfort is the very person you are caring for.

Instead of comparing who has it harder, we need to look more closely at these distinct dynamics. Understanding the specific geometry of each caregiving relationship does not divide us. It allows us to truly see one another in the dark.

Victoria: Thanks, Allie! As I said in our DM, our exchange underscores the need for more dynamic, open conversations to identify the specific challenges and realities faced by different caregivers. It’s why I wanted to start these monthly discussions and create dedicated spaces for each type of caregiving.

For our discussion

1. Briefly introduce yourself: where you live, who you care for and how long you’ve been caring.

2. Share your thoughts on Allie’s reflections or answer this prompt:

What specific challenges or issues do you feel are unique to caregiving as a spouse/partner?

There’s no need to qualify or compare with other types of caregiving; just share your feelings and thoughts. You’re the experts, and voicing your thoughts may help others raise theirs.

3. Please share and reply to other comments.

Please remember to ‘❤️’ LIKE the article to guide others to this discussion

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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? I created Carer Mentor to offer heartfelt empathy for Caregivers. It’s a hub of practical tools, resources, and insights. A community support network for all of us human-ing hard. ❤️ Start exploring here.

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers their wisdom, compassion, and hope to their younger self. No one knows us as well as we know ourselves, and even then, we may second-guess ourselves. The choices, challenges and tragedies we’ve faced have forged us in more ways than anyone can understand; in ways we’re still trying to decipher!

Since September 2025, thirty-two letters have been posted over three seasons.

This Summer Season so far

1. “Caregiving is a continuous evolution of my love, trust and courage.” by Victoria

2. “The Word I Didn’t Know I Was” by Marina Ortiz Caiuby

3. “The Suitcase by the Door” By Vicki Tull

4. “You Thought You Had to Choose” by Maria Messer

5. “I Can’t Do This Any More” by Cooky Howitt

6. “You Have to Receive in Order for the Circle of Love to be Complete” by Kaeli Hansen Caregivers Count with Kaeli

7. “The Little Things You Do Are a Big Deal” by Liza Wyles

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Today’s ‘Letter from a Caregiver’ is by Cindy Roman who writes

I appreciate Cindy’s articles because she shares the small everyday moments of her life—when small isn’t small at all.

“I didn’t set out to write about Alzheimer’s. I started writing to make sense of what was happening around me—and to hold onto what felt like it was slipping away.

This space has become a record of that experience.

These are stories of caregiving, of identity shifting in real time, of loving someone whose memory no longer holds you the same way. Some are quiet moments. Some are harder to sit with.

Everything here is true to what it feels like to live inside it.

If you’ve found your way here, you’re not alone.” - Cindy

She’s not only caring for her partner, Frank, but also supporting her adult son, Niko, who has high-functioning autism and ADHD, and she teaches. Cindy’s shared how a therapist helped her realise just how much she’s been ‘carrying’: Caregiver X Three When Karen did the math, I realized I wasn’t carrying one life. I was carrying three—and forgetting my own.

I recommend reading more of Cindy’s articles, which bring home the realities and challenges of her caregiving.

• The Way We Used To Talk. When the future cannot be changed, love learns to live in the present.

• The Last Time He Drove

Thank you for sharing your letter with us, Cindy.

Author’s Bio: is Cindy Roman’s ongoing series of flash memoirs shaped by caregiving and loving someone with Alzheimer’s disease. These stories bear witness to what remains as memory fades. Her work has appeared in Yellow Mama, and she is the author of the memoir Who Am I?

When Wishes Come True

A letter to my younger self.

Dear Cindy,

“Be careful what you wish for. You might just get it,” Tia (aunt) told you when you were in late adolescence – maybe 18 or 19.

It’s a statement she often repeated into your 20s. Do you remember? I remember it well. At the time, you truly believed she was out of touch with life and the current times. As we sat in her kitchen and talked, she tried to help you avoid typical youthful mistakes. At times you listened but when it came to Frank, you certainly did not.

You were in a desperately innocent state of mind. You could tell something was brewing between you and him but weren’t quite sure what yet. Nevertheless, you wished for something to happen.

If you remember, the fact that he was married played little bearing on your thinking. I don’t know why, but it didn’t. You somehow believed that if something wasn’t initiated by you it couldn’t be wrong. As much as you knew from a moral perspective that it was, you justified your actions as some form of fate.

Frank was a god at the college. Every student admired and respected him. But he was choosing you.

Do you remember shortly before anything happened when you received that chain letter promising that if you sent it to others, your life would improve tenfold? You thought your life was about to set in motion a future you knew would make you happy and threw the letter away. How young and foolish you were. But it did nothing to dissuade you from your dream that felt magical. You truly believed consequences belonged to older people, not a naive 21-year-old like you.

You believed that getting the man meant getting a certain life. You didn’t necessarily believe or even want him to leave his wife and family. You thought it made him that much better a person because he would stay with them. You didn’t know what the future would hold but you didn’t care. Immediate gratification was all you sought.

Frank was all consuming in your thoughts. His charisma, electric energy, humor and status as a professional Broadway musician devoured you.

The summer when it began, you worked for him as he initiated a new musical ensemble on campus. Your responsibility, attention to detail and dedication impressed him, so he asked you to join him on his current project.

He was separating you from the others. He could have picked anyone, instead, he picked you. It was an honor and it set in motion the next forty-plus years of your life.

The evening when it finally happened he told you he loved you. You interpreted that to mean he was in love with you. Now, I recognize that the admission was more a love for another human being, not necessarily a future partner. I’m happy to tell you that will change in time. It became a mature romantic love for a partner.

How could you not wish to be with him? He was offering you the opportunity to be special to him – something you desperately wanted. At the time, you loved him enough to build your life around him, his schedule, his availability and his vacillation.

As foolish as it seems now, at the time your wish had come true. You got him and you got the life you wished for.

Much happened in the forty years that passed. He did fall in love with you. You were together, you were apart – on and off over all those years. You married when you thought hope was gone. Not that you ever wished for him to leave his family; you just needed more of his time than he could give.

Finally, after all that time, you resigned yourself to love him and only him. You tried to love another and briefly did, but that didn’t last and you found your way back to Frank. It was always about Frank.

Then the opportunity finally came to be with him as a partner. Little did you know this would prove to be a sacrifice you didn’t anticipate. Over the years, you had plans for the time you would eventually share together. It never occurred to you that the dreams you dreamt together and the places you would go would evaporate so quickly.

By the time you lived with him, his memory was poor. You attributed this to normal aging and senior moments. Once you were together a few months, it became clear this was more than memory problems. Something was wrong.

For over a year, he refused to see a doctor. By the time he did, it was Alzheimer’s.

You intended to be his partner but found yourself taking on more and more responsibility – paying bills, managing medications, becoming his spokesperson and slowly, quietly becoming his caregiver. It was a role you accepted and even embraced. He truly needed you and you intended to fulfill your promise to stay with him until the end.

There was no marriage due to his fears of what that entailed. But there was love and plenty of it. You were happy in a weary kind of way.

Over the next year you found yourself coping with behaviors that seemed increasingly off. He was angry much of the time and verbally abusive – not so much at you but to others on the road, in the market and most assuredly at the news.

You knew nothing about Alzheimer’s and didn’t research it much until one conversation with Frank’s son prompted you to learn everything you could about the disease during one long and laborious summer.

At first, much of what you read didn’t seem to apply to Frank. Then slowly things began to change. Repetition was one of the first signs and you found yourself losing patience despite the books warning you this was natural and expected. He started losing language skills, struggling for words and describing things instead of naming them. Instead of Atlantic City, he’d say, “that place where you go to gamble.”

The last year was when all hell broke loose.

He started imagining things that weren’t real. You later learned these were delusions. You found yourself absorbing his reality all day long. Then came the texts from inside the house implying you weren’t there. Then he imagined another you – the young college student version of you.

It was frightening, wasn’t it? You didn’t know what to do or whom to turn to. His doctors did little to prepare you for what was happening and where you were heading.

The most frightening feeling was relief when leaving the house and fear when returning because you didn’t know what you’d encounter when you got home. Would he know who you were? He began seeing you as different family members and not you. That will break your heart, won’t it?

The exhaustion will quickly become overwhelming but also shameful. You won’t accept that maybe this is going to be too much for you, but you’ll realize love can coexist with resentment and grief. Do you love him enough to do what needs to be done? Yes. You’ll find that you will.

It was at this point that your aunt’s words will come back to you. You will have achieved your dream but it won’t look like what you thought it would. You won’t travel, you won’t have a partner who’ll make you feel safe enough – if anything, you’ll keep him safe. You’ll became the protector.

As an adolescent, you couldn’t imagine this version of devotion because no adolescent imagines becoming a caregiver. Your wish begged for a beginning, not endings. You imagined growing old together, not one of you disappearing while still alive.

It took a long time for you to accept the dream you wished for. How could you have known reality would be so different from that initial fantasy? You don’t blame yourself for your wish to be with him. It was as real to you then as your struggles are to you now.

Your aunt’s words carry a much heavier weight now than they did forty-plus years ago. Even though you love Frank and have no regrets, the burden you carry is real, but so is the love you felt and still feel for him. It’s simply a different life than what you imagined.

Sometimes fulfilled wishes continue unfolding long after the moment they come true.

You often ask yourself if you could go back, would you have made the same wish? You probably would have. Your love was that strong; your connection that deep. You learned that some burdens are the natural consequence of loving someone long enough.

With no regrets, you move forward not just because you have to, but because you still deeply love him.

With all my love,

Your future self, Cindy

One last question to close the letter from Victoria.

Please share one quote/movie/book that’s inspired you.

“Be the change you want to see in the world” is a quote that has inspired me. The exact phrase “be the change you want to see in the world” was actually coined by American educator and social innovator Arleen Lorrance in 1970. The quote is widely, albeit incorrectly, attributed to Mahatma Gandhi. While Gandhi never used this exact wording, the misattribution stems from his similar philosophical writings.

I’ve always believed that meaningful change begins with the individual. Too often, people wait for the majority to speak first before standing up for what they believe is right. But the majority is built one person at a time. Every movement, every social change, every challenge to injustice began because someone was willing to act before it was popular or safe. If everyone waits for someone else to go first, the majority never forms. Real change happens when individuals choose to become the first voice rather than another silent observer.

Prompt for Discussion

Has a wish of yours ever come true in a way you never expected? How did it change your life?

Please like ‘❤️’ the article to guide others here.

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The Carer Mentor website is a hub of tools, resources & insights, as well as a community support network. A portal of hope ❤️ Start exploring here.

A carer’s reality can be swirled with many opinions, and it’s easy to internalise some of them, along with expectations or narratives. There are misperceptions we repeatedly face as carers.

So, I’m re-sharing a series of articles that offer this carer’s reflections and empathy for anyone feeling misunderstood or second-guessing themselves.

It’s a go-to reference for when you’re feeling ‘swirled’ or discombobulated. You’re not alone in what you’re feeling. Other carers, like myself, get it.

Article 1: What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?” Read this article “Caregiving Misperceptions and Realities.

Article 2: “How Do We Disrupt Internalised Misperceptions About Caregiving, especially during the summer. The reframe. Creating space, not frustrations, and thriving in the small moments.” Can we compassionately review how we show up for ourselves and others this summer?

Article 3: ‘Why does pursuing happiness make us unhappy?’ Appreciating the messiness of now, reflecting on joy. Research conducted by Dr Iris Mauss, a psychologist at the University of California Berkeley, found that people who were very intent on being happy paradoxically had lower levels of well-being, higher levels of depressive symptoms, and overall, lesser happiness.

Article 4: ‘Misconceptions of Emotions. The Myths and Biases.’ Decoding Emotions: insights and resources. We judge our emotions. We’re conditioned by society and by each other. We apologise for our pain and tell ourselves we should feel grateful. Or wish emotions away. I wanted to know ‘why we do this to ourselves’, so I investigated the science, researchers’ insights, and their implications.

Article 5: ‘Misconceptions of Emotions: The Happiness Trap and a Paradox. Decoding emotions. Insights and resources.

Popular ideas about happiness will make you miserable if you actually hold on to them too tightly believe them too much or let them dictate how you live your life and there are three big happiness myths in particular that create this happiness trap - Russ Harris

I hope these articles and anecdotes resonate with your experience or offer fresh ideas for reflection. It’s not easy to short-circuit thoughts when they’re swirling. You’re not alone.

Share your thoughts here or in our Carer Mentor Community Network discussions. Each of the 3 articles introduces the debut discussion and acts as an index for subsequent monthly discussions.

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