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

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Today’s ‘Letter from a Caregiver’ is by

I met Liza earlier this year when I came across her publication, “WriteLiza”. Her article “Welcome to WriteLiza! Reclaiming my title as ARTIST through caregiving and creativity” resonated with my efforts to not just define my bespoke version of thriving, but to bring my whole self to each moment.

“I arrive on set as a caregiver and it empowers me to advocate for cast and crew in my role. Care and creativity are entwined for me. It is how I can show up as truly myself and do my best work.” - Liza

I recommend learning more about Liza’s work as an intimacy coordinator and how, in her words, “her caregiving and creativity lives intersect and inform one another.” I’ve enjoyed her humour and appreciate the different frames that she’s presented about care and caregiving.

Bringing Caregiver Energy to Set as an Intimacy Coordinator. But I’m not your mother.

“I didn’t know I might be good at caregiving until I was tasked at doing so. And I don’t think I’m “meant” to do this. I simply am able to understand that help and support cannot come at the expense of another person’s dignity. Whether they’re doing a nude scene in a film, or sitting in a hospital gown with an IV port, waiting to have their brain imaged for signs of tumor recurrence, everyone deserves as much agency as they can command.” - Liza

Thank you for your letter, Liza.

Author’s Bio: Liza Wyles is a writer and intimacy coordinator in Queens, NYC. She is a parent to two teens and a caregiver to her husband, Scott, who was diagnosed with glioblastoma in 2024. She launched WriteLiza in 2025 to share how her caregiving and creativity lives intersect and inform one another. Her essays and humor have been published in The New York Times, Scary Mommy, Romper, and Self, and she has written and produced TV series for AMC Networks, Disney, and Marvel. Ask her anything about Star Wars and 80s New Wave music.

The Little Things You Do Are a Big Deal

Dear 26-year-old Liza at NYU Langone Health Hospital on that hot summer day,

I see you in the room with your mother and aunt, surrounding your grandmother in the bed. The nurse asks loudly: “Are these your girls? How many do you have?”

My grandmother smiles: “Just three,” she answers, looking at each of us.

She is wrong. She has two daughters. I’m her granddaughter. Except not on that day.

You were there, filing her nails. She always had manicured nails, painted bright red or shimmery peach. She did them herself, the Revlon bottles at her bedside, next to the lamp and ashtray. But they were ragged now. She had tried to escape the night before, wrestling with the safety bar on her hospital bed, and tearing her nails in the process. You’re filing them down to get them smooth and even and safe. You’ll do your best. But her nails won’t look the same.

This act will stay with you. It is something you can do. It is all you can do at that moment. It will be enough. It’s the last memory you have of her alive.

It does you good to remember how to do these small things in big circumstances. When you become a parent, the skill is handy. Wet wipes at the ready. Plastic bags to catch vomit. Notes with smiley faces in lunch bags.

In 2024 you will need to do big things. Cancer will require it. It has you driving your husband to the E.R. in the middle of the night while you’re on vacation, and it will keep coming up with new challenges. How to talk to your children about glioblastoma (“Don’t Google it!”). How to advocate for care that falls outside surgery and radiation and chemo and painkillers but is just as essential. How to keep the lights on when neither he, nor you, can work in the wake of his diagnosis and ongoing treatment.

You will find the small things you know you can do well: keeping a dedicated notebook of everything “cancer,” stowing travel toiletries at all times so you can stay at the hospital (and you will, for over a week) asking your parents to care for the kids and making sure they have their insurance cards and your son’s Epi Pens. You try to delegate the rest, like meals and housekeeping, to friends and family who want to help.

And looking back, it’s all these small things that supported the big things. The practice is in the small bits. You might have always known that. Maybe this is why you amused yourself in math class in middle school by listing outfits, in detail, you dreamt of wearing. Pages and pages in the back of your looseleaf, filled with descriptions that read like shopping guides at Benetton and The Limited.

Others may call it low-hanging fruit. Doing the easy stuff. Because you don’t get recognition or reverence for the small things. Glioblastoma is a big disease. You need to match it with big gestures. And that is how your husband has been facing it. Six weeks of daily radiation and chemo post surgery, followed by a year of monthly rounds of chemo that made him tired and turned eating into a chore. But he persisted; daily walks, exercise videos, and full days of remote work once those six weeks of daily treatment were over.

Heroism is what’s called in to fight cancer. It takes heroic efforts. You are not a hero in that sense. You are below Big Energy out there battling the disease at center stage. You’re in the wings of its performance. Running the power cables, securing the safety ropes, cueing the background.

You know people want to help. They always let you know. Sometimes they go ahead and do something without asking, and that is the best. It’s not always the actual thing that helps, but it’s the behavior. It’s them knowing you don’t have the time and bandwidth to manage the team of helpers. So when two boxes of Baked by Melissa cupcakes show up at your door, it’s not what you wanted or needed, but it will be exactly the right way to help.

And you will see that all the people who have come to help are there by design. A testament to the years you and your husband put in at work, and outside the office, to cultivate meaningful connections. Not through grand gestures, but in small ways: walks around the neighborhood, a coffee, a zoom venting session, a rant about the state of movies over text.

A thousand small points of light will illuminate the path to go where you are most needed.

I don’t mean to be unkind by calling these acts “small.” Unfortunately the toxic work culture our generation has grown into will perpetuate a hierarchy of labor that will relegate caregiving to the bottom rung. Even within the caregiving spectrum, there is an order of significance, when viewed from the outside.

I have to implore you to dismiss that.

As you meet other caregivers–and they will all be so additive to your journey–you will learn that from the inside, there is no structure of importance. It all matters. From keeping the bathroom stocked with toilet paper, to picking up his prescription refills, from managing appointments on the calendar, to getting on a reasonable payment plan, from arranging rides for the kids when you can’t do it, to giving up washing dishes because the way you rinse annoys him and he has the right to be annoyed by small things when he’s out there fighting the beast. It’s all caregiving. It all matters. It all adds up to be what sustains a family when cancer barges in.

When you launch your Substack in late 2025, writing from the intersection of care and creativity, it will be because you have gathered all these small bits of experience and realized how big an impact you could have on communities you’re a part of. The artist community. The caregiving world. The parenting group. The midlife diaspora.

Your instinct to reach out and take someone’s hand, to file their nails, to guide them across the street, to anticipate a radio-oncologist’s reading of a scan, is not low-hanging fruit. It is the root of kindness, where only good things can grow.

Love,

Future Liza (July 2026)

One last question to close the letter from Victoria.

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

I saw (the first, but not the chronologically first) Star Wars in 1977 and my creative self came online in that movie theatre. I knew I wanted to do that: write and direct films. Yes, all the special effects were awesome, but I was five, so I didn’t have a lot of context to understand how remarkable they were. What drew me in were the characters: they felt so real. They played off each other in such specific ways to their personalities. My biggest take-away was that humor was embedded in all the space drama, and I think that taught me that life is funny even when you need to save the galaxy.

Prompt for discussion:

What’s a small gesture that made a big impact in your caregiving life? It could be something you did, or an act of someone else.

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.

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Small soulful moments and oases of calm

Dear friends, caregivers and anyone who needs a small oasis of calm….I see you.

Summer isn’t the same for everyone.

Some people are excitedly preparing for their holiday with family/friends, checking passports and coordinating a fabulous new look for cocktails by the pool. Yup, I have twinges of envy. I’m only human! ;-)

I’ve nostalgically scrolled through floaty maxi dresses online and conjured up memories of cocktails by the pool, a glass of rosé in hand. I remember al fresco dinners with friends… the glow from candles (or was that my sunburn!), the laughs, and all the great food and wine. I don’t miss ballooning into bumps, as the sacrificial mosquito fodder for the evening, but I do miss the magical hum of cicadas. I have beautiful memories. Blessings - the memories and the friends.

Despite the nostalgia-fueled envy, my heart lifts when I see friends’ photos taken at airports and on planes. I can imagine the kinds of memories they’ll be curating. New adventures for the kids. Seeing others enjoying themselves makes me smile. So I ask for photos and urge them not to censor their excitement or news!

It’s just that Summer isn’t ‘a break’ for everyone.

People who are caring for family members, whether they call themselves ‘carers’ or not, experience a different kind of season. They’re navigating disruptions to familiar care routines, such as coordinating care around kids being out of school or paid carers going on holiday. Familiar faces may be replaced by substitute support, creating angst with dementia sufferers. ‘Sundowning’ behaviours can be more acute in Summer. I remember the heat and angst, and it wasn’t all due to the weather. Not everyone is relaxing or able to explore new creative pursuits.

For me, caring for my mother and continuing my mentoring business have meant a continuous flow of events and appointments since January; small crescendos, with flurries of activity. So, I’m relieved that I’ve had this backbone of music to lean on:

Each year, I update a few playlists to stabilise, soothe or shift my mood during the year ahead.

Over the course of the year, I curate other playlists with new discoveries and motivators.

But these are the songs or classical pieces that serve as vertebrae, keeping me upright or moving. These make me feel more centred, and enable my head, heart and gut to align again.

My head-heart-gut alignment feels solid when I can have small moments of soulful respite. I recently made a new playlist to create an oasis of calm in my day. This isn’t about energising my mind or exercising. It’s not for soothing hurt or sadness.

This music is for releasing pent-up tension, exhaling, and letting the soulful blues out.

The opening bars of Quédate Conmigo give me an exhale now. I highly recommend listening carefully to the poetic lyrics of “You Lost Me Forever.” Powerful reframes about a relationship ending.

You’ll find a lot of Olivia Dean’s songs and a few old faves by Sade.

May 26, 2026 This Artist Says Ambition Is a Trap (10 minutes)

Portraits of Another Life is a documentary series about artists, makers, and people who have chosen lives shaped by craft, discipline, and meaning.

Directed and Shot by Emil Lozada, Edited by Brittany Hammer and Emil Lozada, Produced by Arnelle Lozada

In this short documentary, Jennifer Owen, a Maui potter and ceramics teacher, reflects on a lifetime of pottery, teaching, and living close to nature in Hawaii.

This is a film about pottery, but it is also about the quiet politics of enough. It asks what happens when an artist refuses to let the market become the measure of the work. It asks what a creative life can look like when it is rooted in attention instead of achievement. Maybe this is what success has looked like all along, before we were taught to confuse it with applause.

96 Years of WISDOM: The 3 Lessons That Will Make You Feel Awe

Featuring Dot Fisher-Smith. Filmed in Ashland, Oregon, USA. August 10 2024 (12 minutes)

Awe isn’t only for extraordinary moments—you can find it in everyday life: a starry sky, a powerful sculpture, or music that moves you. With a little intention, we can seek out wonder and remember we’re part of something bigger—an extraordinary response to the ordinary. Thank you, Dot.

“People ask, what’s the secret of longevity? What’s the secret? There’s got to be one thing that if I just do that everything will be ok? And it’s go slow, for me.

[She sings} Go slow then you’ll know,

where to seek the truth

when to speak your truth from your heart.

Go slow

then you’ll know that the only way

to enjoy this day is

right now.”

Plumes Musical Moments with Animals

Singing for Animals Compilation You’ve probably seen his videos, if not take a few moments to watch the animals react to his music

Other ComfortZone Watchlists

Care to share a moment, when you’ve created space for a deep exhale?

How do you curate moments of respite within your day; your oases of calm?

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

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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

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Today’s ‘Letter from a Caregiver’ is by Kaeli Hansen

I met Kaeli via her publication “Caregivers Count” in early 2025.

During our network forum, Caregiving as a Spouse/Partner Kaeli shared this intro-context to her caregiving:

“My beloved first husband died after a courageous and gruelling battle with stage IV throat cancer. Most recently, I have been the primary caregiver for my second husband, Kurt, for the past four years.”

Having had a TBI (Traumatic Brain Injury) myself during my first husband's cancer was really difficult, and after his death, I met Kurt, who became my caregiver. Then suddenly, he had 5 strokes, and everything changed overnight.

You can read more from Kaeli at . I recommend reading:

• Caregiver Role Reversal. When Your Caregiver Becomes the One Who Needs the Care

• When the Caregiver Gets Sick: Giving Yourself the Same Grace You Give Everyone Else

  I finally ate the “wrong thing” for someone whose tummy is not yet accustomed to Ecuador. It made me think deeply about my own vulnerabilities, including disability, and the one thing that can happen to any of us—illness. But caregivers can’t always get a day off. I haven’t perfected self-care; it’s still a struggle for me sometimes, but if you can relate, continue reading for some possible ways of coping.

Yes, Kaeli and Kurt are now in Ecuador. I recommend reading about their experiences of travelling, the healthcare system and day-to-day living.

Thank you for sharing your letter with us Kaeli. I know how difficult it must be to relive the emotional rollercoaster of caring for Sean.

Author’s Bio: Kaeli Hansen is a writer, caregiver advocate, and coach whose work sits at the intersection of caregiving, creativity, and consciousness. Drawing on more than thirty years of family caregiving experience, she supports caregivers and creatives through her coaching practice at kaelihansen.com. Her emerging initiative, Root and Return, offers nature-based programs for caregivers, creatives, and spiritual seekers. She is completing a Master of Arts in Transpersonal Psychology at Sofia University and is currently writing When You Love Someone Who Is Ill: A Caregiver's Honest Guide.

You Have to Receive in Order for the Circle of Love to be Complete

Dear younger me in Fairfield, Iowa, 2015—the year everything changed…

I know life seems to be going great. You should feel at ease with how things are going, but a gnawing in your gut tells you something is not right with your beloved husband, Sean.

In about a month, despite an internal medicine doctor and a specialist saying he is fine and just has a sore throat, you will know something is terribly wrong. He will be collapsing before your eyes. When you two go to a different doctor, he will call you back immediately and order you to go to the University of Iowa hospital by ambulance if you don’t have a car. It will be that urgent! Your intuition will be confirmed, but it will be extremely upsetting, as if an elephant were suddenly sitting on your chest.

When you both arrive at the University hospital, the young doctor will examine Sean’s mouth and, without hesitation, bluntly deliver the news: it is cancer. You’re going to feel like you’ve been punched in the gut, but you will try to hold it together for him. He will need you, and you will feel this is not about you at all, but about him. Nothing else will matter, except being with him. So, you will do what you do in a crisis and spring into action, using your research skills and past caregiving experience to help him. But you will be really scared and wonder, “Will it be enough?”

Cancer is not unfamiliar to either of you — you’ve walked alongside family and close friends through it and watched too many of them not survive. So when that word lands in the University of Iowa ED, it carries the full weight of everything you’ve already witnessed.

You and Sean have always been caregivers for others and have been reluctant to ask for or accept help unless someone was about to die, in which case you’ve relented. You want to be the one to give, and being on the receiving end feels uncomfortable. It’s likely a coping mechanism in response to past trauma, making you reluctant to be vulnerable. Your lifelong identity as a helper to others is threatened when you are the one in need of help. Needing help feels like proof that you are not enough.

When you are riding home after an 8-hour day of scans, appointments, and tests, your inner voice will whisper, “You have to receive in order for the circle of love to be complete.” You will get the message and think you are heeding it when friends offer so much help with meals, healing tips, fundraisers, and more while you’re still at home in Iowa. However, after a few weeks, you two will leave for Los Angeles to seek treatment for Sean and accept help only when people volunteer (which will be a lifesaver at times for you both). But you will refuse to ask until the last few weeks of his life.

Somewhere in the recesses of your mind, you believe that asking for help is a sign of failure. He will live for almost 2 years, which will be a miracle with stage IV cancer, but it will be an extremely difficult 2 years that will also include managing his mother’s care. You won’t feel you can ask for help, but you need to — otherwise you will be wrecking your health.

People will want to help and are only waiting for you to ask. Most people aren’t sure what you and Sean may need or want, and the best way to protect your mental, emotional, and physical health is to ask for help. You have friends in LA who love you and Sean and are ready to help. It’s not a failure to ask for it!

Furthermore, it’s okay not to be okay. You are not alone. You don’t have to “be strong” or be heroic. It’s okay to be brokenhearted. It’s okay to be tired. It’s okay to need help from someone else. You are loved and supported. People can be with you, but you have to be willing to ask. Even though you are not sure you can live without Sean, you will. You still have much to offer the world. You might not love yourself much right now — receiving love, even your own, doesn’t come easily yet — but please know that this will change.

Love

Kaeli (2026)

One last question to close the letter from Victoria.

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

"The best and most beautiful things in the world cannot be seen or even touched. They must be felt with the heart." — Helen Keller

Prompt for discussion:

When your role shifted — from spouse, child, partner, or friend to caregiver — what did you discover about asking for and receiving help along the way?

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

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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!

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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.

• 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

• 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.

• 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. Navigating grief with children

7. Grief Empathy is painful

8. 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

• 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.

• 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. 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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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.

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

• 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.

Back to Table of Contents

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!

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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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What tips and hacks have worked for you?

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I’m Victoria. I live in the UK, and I’ve been caregiving since 2015. I’m building Carer Mentor: Empathy and Inspiration for caregivers and anyone with a chronic illness or health condition.

I launched the website on my Dad’s birthday in 2020, the first without him. I joined Substack in October 2023 and could finally build the community support network I’d envisaged, with this fifth evolution of Carer Mentor.

I’m continuing to build Carer Mentor through collaborations, anthologies, and articles while caring for my mother.

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

All the articles and resources are freely available. You’ll soon realise how much time, passion and effort I put into supporting carers. This is a passion project, and an effortful gift, freely offered.

If you’d like to sponsor my work, please consider upgrading your subscription to a monthly or annual subscription. Please share the website so that others can benefit from its resources. Thank you!

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To help you navigate the website:

If you’re on the cusp of caregiving, for example, you may be trying to have conversations about how you can support your parents

1. Explore the Giving and Receiving Care Anthology, in particular the sections:

   1. Are you a carer, on the cusp of caregiving - many people don’t self-identify as a carer despite the creeping amount of support and help they do.

   2. “Starting the discussions and managing someone else’s affairs”

2. Here’s a link to some support organisations that can offer online/live support.

If you’ve been caring for someone for a while

1. You may like these “Caregiving hacks and tips” for your care routine.

2. Perhaps you’re going through a hospital admission or emergency, and need advice about how to advocate for your loved one? Here are some useful articles: ‘Hospitals, admissions, experiences’

3. Maybe you’re stressed, lost and trying to stay afloat - we’ve all been there! Here’s a useful resource: “Managing the mental load. Understanding and enabling yourself’

4. You may resonate with “Caregiving Misperceptions and Realities. What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?”

If you’ve been caring for a long time, I see you. You’re not alone. Many of us have rollercoastered for a long time.

1. I created the “Letters from a Caregiver” collaboration so each of us can offer our younger selves compassionate wisdom. There’s a wealth of wisdom within this collaboration of letters and from readers’ comments.

2. ComfortZone holds numerous recommendations for music, podcasts, films and TV series, to distract our minds and thoughts and be entertainment on-demand.

For anyone who is experiencing bereavement and grief, I think this anthology will offer resonance and community: Bereavement and Grief Anthology.

If you’re looking for resonance around particular chronic health conditions, you can find other caregivers and care-adjacent publications by exploring these anthologies. Each anthology includes a directory of writers and articles that I’ve read and recommend to our community.

1. The Dementia Anthology

2. The Cancer Anthology

If you’re caring for your parents, or an older family member/friend who has a chronic health issue or an increased need for care support due to declining health, mental capacity, or physical frailty.

• An Anthology: Eldercare / Caring For Parents

If you’re caring for a child with special needs, a disability, a rare disease, autism, cancer or another health condition, meet other caregivers in this community network

• Caregiver’s who are parents “Ask us anything”

If you’re interested in learning how the first rollercoaster of caregiving started for me:

• ‘A Prelude to Caregiving: Love and Torture.’ 2015 hospitalisation was only the beginning.

Join in the Community Network discussions

Within each of these discussion articles is an index to new discussions:

• First Friday of each month: Caregiver’s who are parents “Ask us anything”

• Second Friday of each month: Eldercare/Caring for Parents Discussion and “Ask Us Anything”

• Third Friday of each month: Caregiving as a Spouse/Partner

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If you know someone who could benefit from these resources, please share Carer Mentor with them

Please share this article/restack in Substack so others can find these resources. Thank you!

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Share Carer Mentor: Empathy & Inspiration

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

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Today’s ‘Letter from a Caregiver’ is by

When I connected with Cooky earlier this year, I was blown away by her extreme parenting. I think I felt a deep connection to the long, fraught rollercoaster we had caring for my Dad. When there was no sleep, and we were walking on eggshells, primed to call an ambulance.

I highly recommend reading Cooky’s articles and, in particular, these two: Welcome to Extreme Parenting and Highly extreme parenting PDA and Norovirus: a delightful partnership.

Both give us a better understanding of Cooky’s caregiving. I’ve learnt a lot through reading Cooky’s articles. Her writing is funny and light and at the same time raises awareness about the realities of caring for a child, now a young woman who has Special Education Needs and Disabilities (SEND).

For example, I wasn’t aware of PDA (TBH I only know the acronym as ‘public displays of affection’!). Cooky shared that PDA, Pathological Demand Avoidance, is

“a profile of autism in which certain everyday demands, normal or mildly irritating to you and me, make the recipient literally panic. They go into ‘fight, flight or freeze’ mode and respond accordingly. To me, cleaning my teeth is a routine annoyance: to Olivia, it’s a life-or-death demand which she has to fight with every fibre of her being.”

A very different PDA from the one I knew! It opened my mind and cinched my heart when I thought of what this meant to caregiving for Olivia.

Author’s Bio: Cooky Howitt lives in Exeter, UK, and is a mum of two young adults including Olivia, 19, who has complex special needs. Cooky started writing Extreme Parenting last September in response to a health crisis of Olivia’s, which knocked their world completely off its axis. She’s continued writing it as Olivia has recovered, and now it’s mostly a diary of joy, musings, and everyday mild peril. When not doing extreme parenting, Cooky is a career coach for her company Flourish Career Coaching, a vocation that she absolutely loves.

“I am eternally grateful to Victoria for finding me here on Substack, and bringing me into this amazing and supportive community of fellow parent carers. She works tirelessly to bring carers together, and her website ‘Carer Mentor: Empathy and Inspiration’ is full of useful tools, resources and general wisdom! One of my points below is how lonely I felt while Olivia was ill, I wish I’d known about this community then, although I probably wouldn’t have had time to connect with it.” - Cooky Howitt.

Dear Cooky of September 2024,

I’m writing this to you from 2026 but I’m never going to send it because actually, you don’t want to know what’s going to happen to you over the next year. If you DID know, you probably wouldn’t believe me, it’s so crazy. And anyway, it is the not knowing, the hope, your natural optimism, that will keep you going. Ignorance is bliss in this case my friend.

The only thing that I DO want you to know is that you will get through it. And you should be incredibly proud of how you do it. Hang onto those two things as hard as you can.

Your optimistic world view is about to be smashed off its plinth.

It’s only just started kicking off this September of 2024. And it’s so cruel because you’ve been waiting for this moment for 20 years. You’ve finally moved back to your home county of Devon, after pining for it since your children were born. But your eldest George is starting at Bath University this month, so it is a good time for him.

Your youngest, 18yo Olivia, is trickier. She has Down’s Syndrome, autism (PDA profile) and ADHD. She is non-verbal and still in nappies. She had a wonderful school in Kent, amazing carers and a great gang of friends. You knew that moving her would be hard, but actually you are about to discover that will be the least of your worries.

At the moment, you have just landed in Devon, and it’s lovely to be back. It’s not ideal, you are renting temporarily and the house is old, damp and mouse-infested. It’s at the bottom of a deep dark valley. There’s going to be a lot of rain over the next 6 months, which the cobb walls will soak up like a sponge.

Already after only a month you can see that Olivia is not happy, and you’re pretty sure there’s something physically wrong with her. It appears to be bowel related (she is gluten intolerant) so that’s your best guess, but she can’t tell you and has no idea herself how she feels so it’s a guessing game. Or maybe she’s just upset by the move?

Cooky, you’re wrong on all counts! It’s gynaecological. You will finally realise this in December. The medical establishment will take a further 6 months to be convinced.

There is no new school for Olivia arranged for this September, they are all full. You have found an independent college that looks perfect and amazingly does have a space, but in the end Olivia won’t start there until next January as the LA1 will deliberately drag their heels on the funding. At the moment you are full of false hope that it’s happening imminently.

I’m not going to spell out the day-to-day misery as Olivia’s illness develops, it’s all recorded in my Extreme Parenting Substack, but here is your year at a glance, so brace yourself my love:

Cooky, there will be three main challenges to your natural optimism. You haven’t got over any of them yet, and may need some help in doing so.

1. Losing faith in the medical system

The gut-punching main thing is that before this experience, you assume - like most other people in the 21^st century in a wealthy western country - that there is a safety net for anyone with an acute health problem. Someone to catch you. The NHS is under pressure, sure, but it’s still there, free for everyone. This turns out not to the be the case for a person with severe special needs. Every time you visit the hospital, it will be like they have never seen anyone like Olivia before, they won’t know what to do with her, or how to treat her, so they basically won’t treat her. They will sedate her, try her on the pill, then suggest that it could be mood related, PMDD2, maybe somehow linked to her learning disability?

She won’t get a scan until July 2025 (7 months after you first alert the gynae department to an urgent problem). She wouldn’t have got the scan at all if you hadn’t pushed and pushed and pushed. Just before they take her down to theatre, they will say ‘we’re not expecting to find anything’.

They will find something. And how. She will have been living with an infected fallopian tube for at least a year. Untreated, it will have caused other complications - organs moving including a twisted ovary, huge adhesions forming affecting her bowel.

She will take over 2 months to recover, during which time the pain will continue, and you will have no idea if the surgery has worked fully or not.

2. Exhaustion

Cooky, you are not as young as you were, and you will feel ancient by the end of this. The sheer physicality of taking care of a big, strong, bloody-minded young woman who hates to be touched at the best of times. Who can’t sleep when she’s in pain. Often for the entire night. Who lashes out. Who is bellowing and roaring. Who doesn’t understand why you can’t fix her.

If I tell you now, that you be will living this hinterlife for over a year, you simply won’t believe me. You won’t think it’s possible. After 2 weeks of extreme behaviour from Olivia, you will think “I can’t go on”, but you will have to go on for another 50 weeks at least. That doesn’t sound doable but you will somehow, somehow crawl there.

Two years later, the hypervigilance is still with you, it’s a form of PTSD and tbh you probably should go and get some help with it.

3. Loneliness

The final big thing to blindside you will be the loneliness. Although friends and family love you and give you heaps of moral support, nobody can actually DO anything. No-one else other than you and Matthew can look after Olivia when she’s screaming and smashing things. She can’t go to respite like this. In the next couple of months, she will physically attack two very experienced carers. Mostly it’s going to be just you, Matthew and Olivia in the house, all wide awake and frantic for days at a stretch.

The people who do manage to cut through and actually support you? The Learning Disability Health team whose existence you’re not even aware of yet. When they call, welcome them with open arms. They are wonderful people who will listen, believe you, and never give up on your girl. You will also have a fantastic GP and an excellent social worker. These people will back you up with the hospital, to ensure that she gets that much-needed scan.

The end

In early September 2025, you’re going to dream that you are talking to your beloved mum (dead for 10 years now), the only grandparent who could look after Olivia. In the dream, you sob to her, “I can’t do this, I need your help, please please come back, I can’t do it anymore”. And your mum smiles at you, her beautiful, brilliant smile, and she says “But Cooky, you ARE doing it, you’re doing a great job, you don’t need me at all.” It’s so vivid and real, it’s exactly what she would say if she was alive, and you are reassured, and wake up with tears on your cheeks.

At the start of October 2025, everything will finally begin to settle down. Olivia will be healing properly now. She was not be ‘cured’, there will still be wobbles, but nothing like the previous year.

Olivia last week 😊

Relentless Optimism

The good things that will come out of this ordeal:

1. You will buy and move into your dream home half-way through this saga, round the corner from your childhood best friend. You will love living there.

2. When Olivia gets better, she will be happier than she has ever been. She now has incredible carers, the best college in the world, and spends 90% of her time in the sea. Living her best Devon life.

3. Your son will do well at university, and make friends with a fantastic Exeter gang of young people, two of whom will work as great carers for Olivia

4. Your marriage will be stronger: you will be amazed throughout by Matthew’s resilience, his calm, and his love for his daughter. You will get through the year by being a team, and what a team, I reckon we could cope with anything now.

5. (Obviously the best thing) Bursting to communicate your experiences with Olivia, you will start writing a Substack in September 2025. It will be immediately cathartic, and connect you to a wonderful community of like-minded souls, other SEND parents and carers around the world.

Finally, being completely honest, I suppose that if I could say one thing to myself in September 2024, it would be

“IT’S AN INFECTED FALLOPIAN TUBE YOU BERK, GET HER TO A GYNE SURGEON ASAP”

But I guess we got there in the end.

One last question to close the letter from Victoria.

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

I was inspired to start Extreme Parenting by listening to an episode of the We Care podcast, Care Fully Considered (Misery Olympics, 2/9/25). I love the organisation and the podcast gets great guests. This episode featured two journalists who said ‘We need more everyday stories from carers’. I suddenly thought ‘Why not me?’

And I’m eternally inspired by the Penguin Skipper in the animated film Madagascar, who shouts “Don’t give me excuses, give me results!” then slaps whoever he’s talking to around the head with his flippers. This is basically my mantra for life, and I think it helps me when advocating for my girl.

Prompt for discussion:

Have you ever thought, “I just can’t do this any more”?
What happened next?

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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.

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.

• The latest “Caregiving As A Parent” monthly discussion (the first Friday of every month) was hosted by on June 5th “The System I Forgot To Build.”

• The June 12th “Eldercare /Caregiving for parents” discussion focused on “Child-to Parent Dynamics”

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

7. Marina Ortiz Caiuby

9. 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.

Today’s Discussion:

“Recalibrations in the partnership: the habitual roles, routine, and so much more.”

The Premise: I’m guessing there’s a certain rhythm, habits of your daily life together, that’s changed since your partner/spouse became ill. Has this been an evolution or an abrupt change? This recalibration can go much deeper than the practicalities.

I can’t speak directly to your experience as a spouse/partner, but I’d like to share why this discussion and the creation of this space are particularly important to me.

The house admin and practical tasks: I remember my mother having to take over the tax return, trying to figure out where to get the information and how to file it. My Dad was very organised and had told us repeatedly about ‘what to do when’, but still… she had to decipher many things, all at once, while caring for my Dad when things were destabilised in 2015.

The broader context and recalibration of 2015

My Dad had his first heart attack when I was around 16 and a quintuple heart bypass soon after. Then there were operations to replace his arthritic knees, a hip, infections, straightening toes and fingers (don’t ask; it was gruesome), and numerous other hospital stays and medical interventions that dotted most of my adult life.

Dad soldiered through everything. Working as a consultant geriatrician until he decided he couldn’t. When he retired, my mother did too, so they could enjoy travelling together. He adapted his golf clubs so he could still ‘go out with the boys.’ He took pride in his innovative solution, and we joked about him registering a patent! He managed all his medications and pill boxes. He learnt new languages, practised writing Chinese characters, and meticulously accounted for all their finances. The major hospitalisation in 2015 disrupted all of that.

I hadn’t fully appreciated all the caregiving my mother had done for my father through each operation, recovery and consultation until I took medical leave from my job in 2015 to help her care for him. When he was diagnosed with bladder cancer in 2016 and required a bladder resection, I had my own crash course.

The irony through all this was that he’d cared for many elderly patients over the years. He’d even established a day hospital for patients so that their families could have some respite. It’s a car park now.

The 2015 hospitalisation was an abrupt shock to my father’s health, his spirit and the daily life of my parents. Dad’s health conditions- his heart failure, rheumatoid arthritis flare-ups, unsteady mobility, and disabilities made everything precarious. The dementia made everything worse.

It was a relief to be able to take medical leave and be with them. I arranged some paid support, but it was clear that our needs exceeded the amount and type of care that was available. Dad never liked having other people in the house. The proud man didn’t want help, but he begrudgingly agreed to someone helping Mum with housework. We knew, he knew that they were really there for him…but it worked… for a while at least.

It was hard for me to return to work when the maximum 1-year of leave was up. For six months, I chewed over career expectations and flip-flopped in decisions, torn as I watched my parents struggle whilst I interviewed for new roles. I could see how much my mother was having to manage as the rollercoaster of medical events continued.

Eventually, head-heart-gut aligned, I chose to resign from my job. Sure, I wanted to be there for my father, but a large part of my choice was for my mother. The plateaus of calm were shorter, and the hypervigilance was increasing. Soon after I resigned, the recurrence of Dad’s cancer symptoms underscored my decision.

Daily life changes with illness. There are adaptations and recalibrations that only the spouse and partner can speak to as relationship dynamics shift with the giving and receiving of care. I saw a cocktail of mixed emotions, further discombobulated by Dad’s Dementia.

But we had to focus on the here and now, the situational needs and issues.

I hope this discussion and Carer Mentor can offer you and others a dedicated space to exchange your thoughts about Caregiving as a spouse/partner. Somewhere you can air your thoughts with others who ‘get it’.

Postscript: Sunday, June 21st, is Father’s Day in the UK.

For our discussion

Caregiving as a spouse/partner isn’t just about the health issues/condition; it can involve recalibrating the habitual roles in your relationship and the responsibilities of the daily routine. It can involve recalibrating the partnership now that caregiving’s increased.

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

2. Share your thoughts on my reflections or answer this prompt:

Can you share a ‘recalibration’?

3. Please share and reply to other comments.

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Hi! I'm Victoria. I’m a Caregiver, a Mentor and an Advocate for Caregivers.

The Short Back Story! After a career climbing the corporate ladder, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He 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.

I stepped away from work for a year, returned for six months, and then resigned from the ‘big’ corporate job in 2017. Dad passed in January 2020. Shortly after his funeral, we moved to another rollercoaster— treatment for Mum’s cancer.

Why I’m here:

1. The Premise - my rollercoaster journey

2. The Mission - empathy, inspiration, and actionable support

3. The Carer Mentor Website Of Empathy and Inspiration.

4. Building A Community Support Network.

5. Resonance with the mission. Recommendations.

1. The Premise

The rollercoaster image below shows my career growth and the seismic shifts and jolts of being a caregiver. This is a subjective rating of my life events built using a Timeline Exercise.1

Victoria’s Timeline. Rating of Events 1988 to 2023.

Along this journey, I've navigated 18 relocations across 10 countries and led cross-functional diverse global teams and portfolios. I had no idea that from 2015 onwards, I would experience such a seismic ‘amplitude of emotions’ whose intensity and impact stretched me beyond what I thought I was capable of.

It's been an extreme challenge—the acts of caregiving and orchestrating all the connecting elements. We are the orchestra, the sheet music, and all the instruments. We are the conductor, but we have no baton.

I count my blessings. Right now, I am in calmer waters. Other caregivers are not. They are tired and have no time to advocate for change or themselves when all their time and energy are used caring for and ensuring the safety of their loved ones. They need empathy and support. When those who need support are too tired to lobby for themselves, we must stand for them.

2. The Mission

Together, we can raise awareness of the struggles Caregivers face today and the impact that the hidden crisis of Care has on ALL of us.

Whether you are a caregiver, someone suffering a chronic illness, or someone navigating life’s challenges and uncertainties, the resources and experiences I share could offer Empathy and Inspiration for your journey ahead.

Context: As the population ages, a whole new generation is added to our lifespan - an ageing population, a ‘5 generation’ workplace’/economy & a ‘Sandwich generation’ that is burning out. (see Interview Chris Hayes Podcast with Ai-jen Poo Exec Director of Caring Across Generations in the US).

The Problem: an increased need for care has outpaced the change in policies and infrastructure. There is a hidden crisis as caregivers struggle to do everything themselves; long battles with bureaucracy and complicated access to care support exhaust whatever energy remains after working. This is compounded by the fact that everyone’s trying to make ends meet financially. So, conversations are ‘put off’, and denial and discomfort simmer until a medical crisis occurs.

How do we improve the situation and match the needs of the growing, ageing population? How do we care for our loved ones today, and who’ll look after us later? There is a collective social need for change.

The Idea: We can start by changing the narrative around care and caregiving - let’s start having more discussions within our families and with others and creating solutions in our communities. While I hope we can advocate for changes in policy and with governments, I’ve seen the most powerful, effective solutions being made between 2 or 3 people sharing daily tasks and errands. E.g. shopping, collecting medications, making meals for others, and driving to medical appointments.

We can redefine care and caregiving in our communities: one cup of tea/coffee, one errand, one conversation at a time. Define your care team. Build your Caring Community.

We can support each other by leveraging our experience for peer-to-peer support, empathy, and inspiration. Let’s be neighbours and friends who support each other.

3. The Carer Mentor Website Of Empathy and Inspiration.

The purpose of this website is to offer caregivers empathy and ideas that could support them in their situation. Navigating everything can be overwhelming, and finding others with similar interests can be difficult.

Carer Mentor is a hub of resources, recommendations and information. A reliable go-to for resonance and a place to find others who understand caregiving.

This is a place where Care for the Carer comes first, and the acts of caregiving come second. Explore the drop-down menu bar, using the desktop version of the website.

This article will help you guide you if you’re new to the site.

The website is a hub of information and a portal to other publications in the Carer Mentor Community Network:

There are several Anthologies. For example:

Every year, I’ve led a collaboration with other caregiving writers. This is the most recent:

4. Building A Community Support Network.

There’s a very human paradox of caregiving: the individuality of our personal situation and, at the same time, our universal common humanity. 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, emotions, and vulnerabilities; our humanity.

Another dimension we don’t often discuss is the relational dynamics. I focus on eldercare/caring for my parents, but many friends care for their spouse, child, or sibling. Plus, caregiving stretches beyond blood ties these days. Various forms of kinship care, care communities, or caring amongst chosen family are being formed.

Caregiving for someone who has health issues or a disability can be different when they’re your parent or older compared to when it’s your child.

I’m not familiar with caregiving for a child, but I’d like to hold more space for those experiences as well as other types of caregiving. So, I’m leading more collaboration projects to facilitate more community connections and discussion.

There are three monthly discussion forums:

• First Friday of each month: Caregiver’s who are parents “Ask us anything”

• Second Friday of each month: Eldercare/Caring for Parents Discussion and “Ask Us Anything”

• Third Friday of each month: Caregiving as a Spouse/Partner

5. The feedback and affirmation I need to keep going!

A small review affirmed the purpose:

145 publications recommend Carer Mentor.

Here are some of the comments:

'Resources for caregivers and an understanding of the political and economic realities facing those needing, and those providing care in our society.'

‘"Shining a light on the emotional and psychological struggles of caregivers is incredibly important. This is a subject that has been too long in the dark."

'This newsletter is such a gift to all people who give care to loved ones.'

'An in-depth resource for those of us in the caregiver role, at whatever stage.'

'If you love someone you will be a carer' is so true. For some of us it will be a blessedly short experience for others it is a lifetime. Victoria's substack offers exactly what the title suggests and is a great resource for anyone in this position.'

'Victoria offers so much to those of us caregiving for others. She's a wonderful resource.'

'Victoria writes heartwarming and insightful pieces about what it's like to be a caregiver. She highlights the struggles caregivers face as well as what an important and often under appreciated role they play.'

at ‘Lots of resources, food for thought and empathy here!’

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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

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Today’s ‘Letter from a Caregiver’ is by

When I read Maria’s ‘Welcome to Holding Both’ article at the end of 2025, I was captured by the grace and permission of her words. We can be many things at once.

I resonated with her remapping of expectations and orientation back to what matters most: love. There’s something about the architecture of her words that creates more space for us to breathe as caregivers and with life in general; we can feel it all, be messy, be wordless and still feel whole.

There are moments that shift our perspective and outlook on life, but when someone we love is involved, our whole world changes. Thank you to Maria, for sharing her letter today.

Read more of Maria’s work:

Full Circle. On teaching, motherhood, and the places that shape us.

Holding Both: When More Than One Truth Lives in the Same Body. Our Caregiving As A Parent network discussion, hosted by Maria.

Author’s Bio: Maria Messer is a writer, speaker, special education leader, and the adoptive mother of two sons, Carter and Mason. She writes Holding Both on Substack — a memoir and essay collection rooted in one hard-won truth: that the realest moments of a life are usually two contradictory things held at once — grief and joy, hope and dread, the child in front of you and the future you imagined. After years of caregiving, advocacy, and slowly learning to offer herself the same compassion she gives everyone else, she writes for fellow caregivers and working parents trying to do the same. She lives in the foothills west of Denver, Colorado. Find her on Substack at Holding Both and on LinkedIn

You Thought You Had to Choose

Dear Maria, fall of 2010,

Stop looking at the monitor for a minute. Sit. Breathe in. Out. Again, breathe in… out.

I know you can’t really sit. I know your whole body is angled toward that crib, listening for the next thing to go wrong. But humor me. I’m you — fifteen years up the road — and I don’t get long, so let me hold your hand the way you wish someone would hold yours right now.

You’re at Children’s Hospital. Day three, maybe four. It began with a shake as he woke from a nap — not a soft newborn startle, something else, something that tightened your chest before your mind could catch up. A 911 call. Then a second seizure no one could stop, and then an emergency flight here. The medications that finally quieted his brain are heavy enough that they’ve taken back the things he only just learned. He can’t sit up. He can’t hold his head steady. He can barely open his eyes. And you are standing over him asking the question that is going to live in your chest for a very long time.

Did permanent damage happen?

I’m not going to answer that. Not because I’m cruel. Because the answer was never the point, and some things you have to live your way into.

Here is what I will tell you.

You walked into this thinking you knew the road. ADHD. Because cocaine. That was the story you wrote — the only one you knew how to tell. ADHD felt manageable. Predictable. Almost ordinary. It came with scripts and strategies and a general sense of what to expect.

Oh, Maria. The story is going to get so much bigger than that.

Not worse. Bigger. You’re going to learn words you don’t have yet — executive function, sensory dysregulation, language disability, autism, epilepsy, generalized anxiety, and others I’m not going to hand you tonight because you don’t need to carry them early. You’re going to become fluent in a language no parent wants to be fluent in. And here’s the part I most need you to hear, the part that took me years:

Carter learning to need all of that does not make him less than the baby in that crib. It makes him more. More than any single word. More than any meeting, any report, any prognosis. He refuses, his whole life, to shrink into one story. So will you, eventually. You’ll just fight it first.

You already know something you don’t know you know.

Last Christmas — Carter barely six weeks old, the snowy parking lot, the county building all lit up, the visit his birth mother didn’t come to. You sat in that cold car and felt two enormous things at once. Devastated and ecstatic. How could she not come for him? and, almost in the same breath, oh — we might actually get to keep him! Grief and hope, neither one erasing the other, both of them true, both of them yours.

You thought that was just a strange, hard moment.

It was a lesson. The first one. Life is going to teach it to you again and again until you finally have language for it, and when you do, it will become the truest thing you know. So I’ll give you the words now, early, as a gift:

Holding both.

You don’t have to choose. You are never going to have to choose. Hold the grief and the joy. The mother and the professional. The love for the child in front of you and the grief for the future you imagined. The certainty you crave and the not-knowing you actually get. Life will not ask you to pick one. It will ask you to hold both — and then hold them again — and then again.

You will. I promise you, you will.

I have to be straight with you, because you’ve always preferred the hard news straight.

There are years coming that are going to break you open. Carter’s name is going to start showing up on incident reports and court dockets. You’re going to sit in rooms and hear words about your son — elopement, aggression, dissociation, non-compliant — that don’t match the sweet, busy, tender boy you know at home. You’ll feel torn down the middle, living in the gap between two Carters, certain one of them must be the lie.

Neither is the lie. They’re the same coin. Same boy. Both true.

And underneath it, there’s going to be a feeling you’ll mistake for shame for a long, long time. The shame of being a special education professional who can’t decode or manage or fix what’s happening in her own house. I should be able to hold this. I do this for a living. You’ll call it exhaustion. You’ll call it confusion. You won’t call it what it is.

It’s grief. Grief for the life you imagined. Grief for the plan. Grief that does not mean you failed — it means you loved something enough to mourn it honestly.

I want to save you the years it takes to learn that. I can’t. You’re going to have to live them. But I can stand on the other side and tell you they end somewhere survivable.

You’ll learn — much later than you’d like — that your body keeps the score whether you want it to or not. That the grief you don’t put down somewhere will find another way out of you. That you are allowed, you are required, to take care of yourself as fiercely as you take care of everyone else. There’s a book coming for that. There’s a meme, of all things, that’s going to bring you to your knees in the best way. There’s a phrase — radical acceptance — that you’re going to resist with everything you have, because accepting feels like quitting, and you have never once quit anything.

Radical acceptance won’t ask you to stop loving him. It’ll ask you to stop pretending that loving him means denying the rest. My child is wonderful. My child has significant needs. Both are true. Both belong. That’s not surrender. That’s expansion.

There’s more I’m not going to tell you.

I won’t tell you about a marriage that bends under a weight no one talks about, or what it costs to leave a life that no longer fits in order to step into one you can’t yet see. I won’t tell you about a second boy who’s coming — you don’t know about Mason yet, and you need to know he’s coming, because he is going to answer a phone on a highway one day when no one else can reach his brother, and he is going to make you laugh when you’ve forgotten how.

And I won’t tell you about a morning, fifteen hundred miles from your son, when you have to do the hardest thing a mother can do, and walk back into a quiet house afterward. I’m leaving that one alone. Not to scare you with mystery — to spare you the counting-down. Things are going to be as they’re meant to be, in their own time.

I’ll only tell you this about it: you survive it. And the quiet you’ll be so afraid of turns out not to be emptiness. It’s something you haven’t felt in years. You are still his mother. The love does not need to be in the same room to be real.

Before there was language, there was love. You’ll write that someday. It will be the truest sentence you know about Carter and you. Keep it.

Now. The reason I really came.

Somewhere in the middle of all of it — the hard years, the unraveling, the rearranging of everything you built — you’re going to sit down and do something you have never done in your life.

You’re going to write yourself a love letter.

It won’t even be your idea. A therapist will hand it to you as an assignment, and you’ll want to roll your eyes — because by then you will have spent your whole life as your own worst critic. You are fluent in the harsh things. You should have known. You should be handling this better. You’re not doing enough. You speak to yourself in a voice you would never, not once, use on someone you love. That is exactly why she gives it to you. Write a letter to yourself, she tells you, the way you’d write to someone you love.

So you do. For the first time in your life, you turn that kinder voice toward yourself. It feels small and enormous at the same time. And I want you to have it now, early, so you know what’s waiting:

The work you have done and are doing is incredible. You are strong, resilient, ambitious, tenacious, tender, loving, patient, and kind. I love who you are becoming and cannot wait to see what the future holds. It is bright and ALL things are possible. You showed up for yourself when you had to. You’re doing the HARD work your body, heart, and soul desperately need. Keep going, you’re worth it!

— Me

Look at what you do in it. You name yourself strong, resilient, ambitious, tenacious — and in the same breath, tender, loving, patient, kind. You don’t separate them. You don’t rank them. You write them in one sentence because they belong to one person.

You.

That letter is real. It’s a beginning. But hear me, because this is the thing I most needed to learn and the thing I most want to hand back to you: a beginning is not an arrival. Worth is not something you’ll discover once and then carry effortlessly into every room and every morning after.

Worth is a practice. Daily. Imperfect. Some days with confidence, some days through gritted teeth. You don’t earn it by holding everything together. You don’t lose it when everything falls apart. You’re worth something not because of what you build but because of who you’re becoming — and you are already, sitting in that hospital chair, becoming her.

So keep doing what you’re doing, love. Listen to the doctors and also to your gut. Call your sister. Make the spaghetti. Borrow the car seat. Say all the I-love-yous, every single one, every chance you get — bottle the delight.

You won’t get all the answers. You’ll learn to live without the map. You’ll stop being so afraid of the gray, because the gray turns out to be where your actual life lives — complicated and tender and full of contradictions you finally stop trying to resolve.

The beauty of gray. It was always the answer. You just have to live your way into it.

And here is the thing I almost didn’t see coming, sitting where you’re sitting tonight: Carter becomes the best teacher you will ever have. Not in spite of all of it — through it. He teaches you, without a single lecture and most of the time without words, how to love your whole life exactly as it is. Before there was language, there was love. He will prove that to you a thousand times.

So this is what he teaches you, in the end. To hold both. You’ll hold the grief and the joy. The mother and the professional. The certainty you wanted and the not-knowing you got. The rest and the devotion. The strength and the tenderness. The love for the child in front of you and the grief for the future you imagined. You’ll stop asking which one is the real one. They both are. You don’t have to choose. You never did.

Hold both. And then hold them again. And then again.

I’m in you and with you, through the pain and the joy that’s coming. And one day, we’ll be the same person, standing in a quiet kitchen with a cup of coffee, still here. Still his mother. Still his student. Still becoming.

If I could leave you with a single word, it would be that one. Stay. Not because it’s easy — because it’s the bravest thing you’ll ever do. You choose this life, and yourself inside it, over and over.

Again. And again. And again.

With everything, Me — today

One last question to close the letter from Victoria.

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

In my early twenties — before I knew anything about anything — I had a line from “The Beauty of Gray” by Live tattooed on me. I loved the song. I loved how it sounded. I had no real idea what it was actually trying to tell me: that the world is not black and white, that a real life is lived in the colors in between, and that the gray is not the absence of an answer — it is the answer. I’ve spent my whole life since living my way into those words. They were a map I couldn’t read yet, inked onto a young woman who still believed she could plan and prepare and achieve her way to certainty. The song knew before I did.

And years later, Bessel van der Kolk’s The Body Keeps the Score gave me language for something I’d been living inside without a name. Grief doesn’t stay in the mind. It moves into the body and makes a home there — in the hypervigilance, the exhaustion sleep can’t touch, the bracing you stop noticing because it has become your normal. Eventually the body insists on being heard. Between a song I didn’t understand at twenty and a book that finally explained me decades later, I learned the same lesson twice: pay attention to what you’re carrying, and where you carry it.

Prompt for discussion:

Who in your life has taught you something real without ever using words?

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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.

It’s Carers Week in the UK (June 8 - 14). This year’s theme is ‘Building Carer-Friendly Communities’. I support this campaign and the work of Carers UK. The Carer Mentor Community Network aims to build stronger ties and support between caregiving communities, writers and carers online.

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.

• The most recent “Caregiving As A Parent” monthly discussion (on the first Friday of every month) was hosted by on June 5th: “The System I Forgot To Build.”

• The previous “Eldercare /Caregiving for parents” discussion focused on “A Carer’s Recalibrations”

The Eldercare/Caring For Parents Collaboration Team

I’m pleased to introduce you to our 14 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. Julia Yarbough

6. Kirbie Earley

7. Kirsten Mau

8. Sally Cave

9. Sarah Bain

10. Sarah Coomber

11. Sue Montgomery

12. Tina Matras

13. Viva Mogi

14. 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.

Today’s discussion

Today’s discussion is co-hosted with . I asked Sue a couple of questions because I knew she had a wealth of professional experience in addition to her personal caregiving.

In the back of my mind was a general thought: we try hard, without any training, to learn about caregiving, influence, and advocate in the best interests of our parents. This isn’t just as an interface to medics and organisations. We’re also translating, advising and negotiating with our parents. No wonder that we can second-guess our choices on that learning curve. It’s also easy to feel frustrated when our recommendations or opinions aren’t truly heard or considered. We can wonder if our parents are questioning our judgment and capabilities.

With that in mind, I wondered what Sue’s experience was like caring for her Mom, given her professional expertise and training.

Two questions to Sue

Can you share a brief context of your professional and private experience of caregiving?

As a registered nurse, my professional experience with caregiving includes working within various roles for a large hospice in Florida for 15 years. I spent 12 years in critical care prior to that, working with both children and adults. But caregiving in the ICU certainly isn’t the same as working with hospice patients and families in their homes! For hospice, I worked in the field as a case manager for both children and adults; as a staff nurse in our hospice houses caring for both children and adults; as the manager of a homecare team with an average daily census of 100-120 adult patients; and as the Director of Interdisciplinary Practice for the organization. That last role didn’t involve as much contact with patient/family situations, but all of the others did.

My personal experience as a caregiver includes caring for my mom for many years and helping my husband care for his mom for five years.

My mom lived with my husband and me in her own apartment at one end of our home for nearly 10 years. She was fairly independent until about the last five years of her life, when she required increasing levels of support. Over the last few years, she required some level of care/support nearly 24/7. She was in a community-based palliative care program for the last six months of her life and had hospice the last three weeks. She died peacefully at home, in her own bed, with me by her side on May 29, 2015.

After Mom died, we relocated to be closer to my husband’s mom. We provided increasing levels of support for her until we decided it was time to move in and provide 24/7 care on various levels. We were also blessed to have hospice for her, and she died peacefully at home, in her own bed, with family by her side on January 16, 2026.

Can you share an anecdote of when you helped a family in your professional capacity and compare that with a similar personal experience caring for your mother? Was there something that surprised you or was a lightbulb moment for you?

I have lots of anecdotes for both scenarios, but here’s one that popped into my head as overlapping both my personal and professional experiences: How frustrating it can be for family members when their loved one dismisses their suggestions for various reasons – only to think it’s a great idea from someone else!

When I was a nurse in the field working with hospice patients in their homes, it wasn’t uncommon to have a spouse (often a wife) open the door to greet me and say something along the lines of, “Maybe he’ll listen to you!”

I’d then step back onto the porch with her as she vented her frustration over her husband’s stubborn stance on this or that. Even if what she was suggesting was exactly what needed to be done for the situation, he wasn’t having any of it — until he heard it from me. Then, it was a different story. How frustrating for his wife!

A similar scenario with my mom initially was about pain and symptom management, topics I had more than a little experience with. To her credit, she was often open to my suggestions about various things, but this one in particular bugged me because it was my field of expertise. I specifically remember making some suggestions early on about options for managing her pain, but it wasn’t until she heard the same suggestion from her doctor’s nurse that she was willing to give it a go.

For my hospice patients, I knew it was about trying to maintain some level of control in the midst of the growing pile of losses they were experiencing. Which is what I tried to explain to the many frustrated family members I encountered. Of course, with my mom, it was exactly the same, but that was a little more difficult for me to identify when I was the caregiver.

I didn’t necessarily have a “lightbulb moment” about these dynamics with my hospice patients, because I encountered these scenarios so often. But with my mom, I eventually realized I needed to put my ego aside and try to understand what it was like for her to endure all the changes and losses she’d experienced as her health failed and independence became a thing of the past. She needed to have as much control as possible, and I needed to do whatever I could to help her have it.

Thank you, Sue!

This resonates with my experience of caring for my Dad. He didn’t like to take the pain medication and didn’t want to be more ‘fuzzy.’

I wouldn’t want to presume about why your Mom didn’t follow your suggestion, Sue. There could be various reasons. I am glad she listened to that Doctor’s nurse.

It’s clear that this was a mental shift for you as her caregiver. Perhaps that's less about your ego and more about recalibrating your approach to her wishes and needs; your daughter-to-mother dynamic? Having to integrate more of your professional insights into your Mom’s caregiving must have been tough. These are the situations where I wonder, “How much time do we really get to ‘just be’ the daughter or the son?”; presence rather than ‘doing’.

You provided much-needed care and support to your patients and their families. It’s easy to see how you enabled your Mom’s wishes and needs.

Thank you for this reminder for us to lean into relationships outside family dynamics, whether that’s with medical experts or trusted friends.

An important note about cognitive issues

We may not know, but we may have growing concerns about our parents having some short-term memory loss or issues with logical reasoning or comprehension.

Are you aware of Anosognosia? It’s a condition in which a person is unaware of their cognitive decline, most often seen in Alzheimer’s disease or other causes of dementia. This lack of awareness is often confused with denial and poses unique challenges for our care discussions and for aligning on our parents’ needs and wishes.

Perhaps our mother or father is scared rather than stubborn. Or fighting to retain some level of control when things are escaping his/her grasp. Perhaps they need more time to recalibrate on what they’re becoming more aware of.

Beyond our child-to-parent relationship. We’re recalibrating our adult-to-adult relationship whilst facing their health issues and despite historical baggage/dynamics. No wonder why it’s so tough!

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:

   Has there been a situation when advice/recommendation was best served to your parent(s) by someone else?

   Or can you describe a moment where you and your parent(s) felt solid alignment?

3. Meet other caregivers by replying to other comments or questions.

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

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I launched the website on my Dad’s birthday in 2020, the first without him. I joined Substack in October 2023 and could finally build the community support network I’d envisaged, with this fifth evolution of Carer Mentor. I’m continuing to build Carer Mentor through collaborations, anthologies, and articles while caring for my mother.

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.

All the caregiving articles and resources are freely available. You’ll soon realise how much time, passion and effort I put into supporting carers. If you’d like to support my work, please consider upgrading your subscription to a monthly or annual subscription. Thank you!

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The Carer Mentor content aims to support the caregiver and see the person beyond the acts of caregiving. Examples of articles focused on supporting the caregiver include: Resources: ‘Managing the Mental Load,’ and ‘Wholehearted living: Avoid Toxic Positivity and Rethink our beliefs around Emotions.’

This eldercare anthology focuses on caring for your parents, or older family member/friend who has a chronic health issue or an increased need for care support due to declining health, mental capacity, or physical frailty.

Other anthologies include the Dementia Anthology or the Cancer Anthology.

This is a dynamic and growing resource. Please bookmark this article. I’d like it to be a reliable go-to reference source so you can avoid searching, saving or scrolling.

Feel free to recommend another article by sharing its URL in the comments. Thank you!

Anthology Table of Contents

On the left of the desktop screen: use the lines to navigate between sections

1. Eldercare / Caring for your parents

2. Attitudes and mindsets of caring for your parents

3. Caring for your parent(s) from a young age

4. “I’m a carer/caregiver!”

5. Initiating discussions about your parents’ care wishes

6. The Official Paperwork - Be aware, learn, prepare with your loved ones

7. Discuss emergencies, ‘what to do when…’ and end-of-life wishes

8. Be prepared for an emergency or hospital trip

9. A sudden diagnosis, crisis or emergency

10. When does a parent decide to give up driving?

11. Home aids, enabling your parents’ quality of life at home, reducing risks

12. Discussing everyday finances, bills and banking

13. Care support: where parents live.

14. Care support: orchestrating support at home

15. Siblings, family dynamics

16. Long-Term Caregiving

17. Enabling comfort and quality time

18. The giving and receiving of care

19. A crisis or emergency, hospital and discharge

20. Downsizing, sorting through belongings before they pass or afterwards

21. Palliative, Hospice/End-of-Life

22. After your parent, family member, or friend has passed

23. Caregiving for your other parent

24. Carrying grief as life continues

25. Support organisations and book recommendations

Eldercare / Caring For Parents

I believe that every eldercare experience is unique because each of us is different. Relationships, history, family dynamics, and the impact of disease are just some of the variables that influence the caregiving experience. When we start to consider culture, socio-demographics, digital literacy, finances, access to healthcare and spirituality, we may wonder why caregivers can empathise with each other so easily.

At the heart of any caregiving experience (pun intended) lies emotional labour and grief; our common humanity connects us. Eldercare/caring for our parents involves a litany of tasks to ensure our parents receive the care they prefer and need as circumstances change.

We constantly feel the tension and pressure because caregivers stand at a threshold, interfacing with systems that focus on productivity while we defend and advocate for our fragile, ‘humaning-hard’, situation

We’re doing our best. You’re not alone, even if it may feel that way a lot of the time!

Table of Contents

Attitudes/mindsets of caring for your parents, and caregiving in general.

• ‘Love and Caregiving go hand in hand’ The Silent Suffering of Caregivers | Amanpour and Company June 5, 2023 If you love someone you will be a carer.

  This Amanpour interview with Emily Kenway dispels some commonly held myths and presents the stark realities of caregiving.

• Should I Care for My Parent? Things to Consider by . I recommend reading Viva’s article, in which she shares her caregiving journey, her family’s experience, and the reasons she decided to move home to help care for her mother. This is a linked image of five priceless insights. The simplicity of her words belies the complexity, emotions and wisdom she’s sharing.

  

• “My caregiving journey is a family healing journey” By

• It’s not parenting. (Or is it?) I’m annoyed when caregiving for an aging parent is described as parenting. By

• When the Healthcare System Relies on Invisible Labor. The unseen coordination work that makes medical care possible. By

• The Problem with ‘Self Care’ On the individualization of systemic failures. By

  “Sure, part of this involves finding a balance and distinguishing others’ care needs from preferences. I and others may have found ways to protect our own peace to continue in our care roles in a way that is sustainable, and I was fortunate to have Alex and dear friends to lean on. However, it can be difficult to figure out what that balance is, and there is a lot of caregiver guilt and shame that comes into play. I still distinctly felt the lack of broader support for navigating all of the complicated financial and health decisions, and felt thrown into a complicated world that I knew nothing about and had no one to guide me.” - Anna

• Entangled and Estranged Family caregiving when you’re emotionally detached. By

  “How do you care for someone who has pushed everyone away - including those they expect to care for them? I’ve been thinking a lot about this, because it is the situation I am in with my mother. We have come to a new phase of the care journey, in which I am not physically needed to support her care in the same capacity anymore. And because of our history and relationship, I see her much less.” - Anna

Caring for your parent(s) from a young age

• Growing Up Caregiving: Coping with the New Normal (or Not) by

“I’m a carer/caregiver!”

• Checkpoint: ‘Are You A Carer?’ Many people don’t consider themselves to be a Carer until a Crisis happens. Here are some useful facts, figures and signposting to support you.

  • Carers UK: Guides and Tools

  • Carers UK: A guide with tips, advice and support for unpaid carers

    “Are you caring for someone but unsure of your rights and what support you’re entitled to? Our guide explains the different benefits and support available step by step. Looking after someone also offers many practical ideas to help make life easier when taking on caring responsibilities.” Carers UK

• I recommend reading this series by Tina, when you realise you’re a caregiver and you don’t know what you don’t know:

  “I’m New to Caregiving. Where Do I Start? Oh, Crap! I’m a Caregiver, Part 1: Practical first steps for caring for an aging parent or elderly loved one when you’re new to caregiving.” By Tina

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Initiating discussions about your parents’ care wishes

• The Eldercare Discussion. Connection and Conversation. Questions and Resources By Victoria

• How to start talking to your parent about aging. It’s not about having one big talk, it’s about finding a way to have continual conversations about aging. by

• Having “The Talk” Without Blowing It Up (What Actually Works) How to begin conversations about help, change, or decline By Cindy Martindale. A great article about how to have the conversation, navigating your own thoughts and script suggestions.

• Persuasion - not pride and prejudice. It’s about talking with our parents, not telling them what to do. By Wendy Frew

• What to Do When Your Loved One Refuses Help by

  “You’ve tried to help. And they’ve told you, clearly, that they don’t need it.

  This is one of the most common — and most frustrating — realities of early stage dementia caregiving. The person who needs help is often the last one to believe they need it.

  Here’s what you need to know.”

• Caring for Parents: Being One Step Ahead. Thoughts and tips on practical ways to be prepared for parental decline By Siobhan Calthrop I really appreciate the way Siobhan compassionately lays out potential scenarios and empathetically shares her ideas, insights and words of wisdom.

• The Sandwich Generation. What it really means to care for both aging parents and kids. By

• Shoulder, Strength, and the Quiet Courage to Face the Pain (Part 1 of 3) By

  “That conversation marked the beginning — not just of a medical process, but of a shared journey that would test both of us in ways we couldn’t yet see.” - Adrian

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The Official Paperwork - Be aware, learn, and prepare with your loved ones

I used to think that getting the paperwork done so I could be a stronger advocate for my parents’ wishes was the main goal of this administration. Now I know it’s also about what would happen if something were to happen to me, the caregiver.

Legal documents and health directives differ by state, country and sometimes the hospital (in the UK). I highly recommend doing a little research for your person’s location.

Don’t forget to note any important medical intervention alert, e.g. specific issues with intubation or anaesthesia that were identified in a previous hospitalisation.

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

Articles and resources published by other caregivers:

• Dementia Care: What to Do When They’re Losing Their Mind, So You Don’t Lose Yours Along the Way By In this article Jodi has a section with links about “Getting the paperwork in order”, an excellent list for anyone who’s new to this paperwork!

• A Legal Roadmap for Dementia Families The Documents We All Wish We’d Signed Sooner by

  "I wish we had done this while she could still understand what we were talking about." I've heard those words more times than I can count in my nursing career, and they break my heart every single time. Here's how to avoid being the family that waits too long.”

• “Do this now: Health Care Surrogate Form .It’s so simple, I promise.” by . Lauren shares links to get the form for your relevant US state.

  “This form empowers you to make health care decisions for your parent. If your parent ever wants to revoke it, that’s easy, too.

  This is especially important if there are complicated family dynamics at play, like your mom only wants you to make health care decisions, but she lives with your Aunt Kathy, who can be pushy, or like your dad is estranged from your older brother but not you, or if your parents are married but one is experiencing signs of cognitive decline.”

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Discuss emergencies, ‘what to do when…’ and end-of-life wishes

• Most Emergency Plans Fail Elders Before The Disaster Even Starts by contains several excellent points that are worth everyone working through! As I don’t live in the US, I hadn’t thought about tornadoes!

  I’m always grateful for new ideas, learnings and tips! This makes sense for any caregiver where an emergency disrupts the care routine and our loved one’s welfare.

  “Our plan wasn’t perfect. Your plan won’t be perfect either. But a plan beats luck every time.”

• The Week Our Lives Fell Apart: Lessons from a Family Crisis Palliative Care, Social Work, Care Navigators and “The User Manual” By

  “Do This Now: Create a User Manual for Your Life

  In addition to the urgent decisions families may need to make with respect to medical care, a crisis can create a mountain of important administrative work at a time of high stress. If you or your loved one are incapacitated, who will direct the finances, pay the bills, manage the home, make new housing and care arrangements, and how will they know what to do? The final lesson to share is to create a user manual for your life.” - Saskia

• When Family Won’t Talk About Death: A Caregiver’s Guide to Essential Conversations Handling end-of-life decisions when everyone else avoids them...By

• My firsthand experience using ‘5 Wishes’ to talk about end of life. Complete with how-to screenshots of 2 online tools. By Karen Lutfey Spencer PhD A personal experience of how one family used the ‘5 wishes’. A useful walkthrough with links and screenshots.

• Talk to your parent now about hospice. How do you know whether your parent needs hospice? How do you talk to them about it? by

Be prepared for an emergency or hospital trip

• First Aid: Primary Survey, CPR and Recovery Position. By Victoria

• What You Need to Know Before an Unexpected Hospital Trip 🎁 Gifting essential learnings. Download 3 checklists. By Victoria

A sudden diagnosis, crisis or emergency

• So, your parent got a tough diagnosis. Now what? Making sense of second opinions, treatment options, and tough conversations. By

• ‘A Prelude to Caregiving: Love and Torture.’ A 2015 hospitalisation was only the beginning. This is probably the most painful article I’ve written to date. A grief hangover ensued. Trigger warning for anyone in emotional turmoil over caregiving or at the start of their care journey: this may be too tough to read.

• Broken Bones, A Broken System: 40 Days of Saving Dad Helicopter landings, shackled prisoners, chaos, cruelty, and the indifference behind the myth of compassionate care in the US hospital system. By

“When my father called me and told me he had fallen, I didn’t panic. I live more than four hours away, so I asked him if he needed my brother to come and help him get up.

That’s when he told me to call an ambulance. And that’s when I knew that our lives were going to change forever and that my dad was going to a hospital and would probably never return to his home again.”

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When does a parent decide to give up driving?

In the UK, driving licences expire at 70 years of age, so when you reach 70, you need to renew your driving licence if you wish to continue driving. You then need to renew it every 3 years. Drivers must meet minimum eyesight standards and declare any notifiable medical conditions to the DVLA. There is no upper age limit for driving, but the DVLA must be notified of any health changes. It’s a legal obligation. Anyone over 70 needs to renew their license and check their insurance is valid. [Is the government going to change driving licence rules for the over-70s? 23 Oct 2025]

• Hanging up the car keys. A Dad/daughter conversation by (US)

• Should My Loved One Still Drive? Is it Time to Take the Keys? by (US)

• Is your parent still driving? How to help them be safer before it’s time to hand over the keys. There are things you can do to make sure your parent is safe driving in their later years and conversations you need to have before they become unsafe. By (US)

• Is it time your parents took a back seat? It’s hard for our parents to stop driving but a bit of planning and some support can help. by . (Australia) I highly recommend watching the videos. Put yourself in the shoes of the 80-year-old lady.

• 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”.

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Home aids, enabling your parents’ quality of life at home, reducing risks

• Personal reflection: ‘Home-aids & Starting the Care Discussion’. You can’t un-see risks, once your lens is turned. by Victoria. The realities of introducing grab rails and ‘the talk’.

• Resource/Tools: ‘Home-aids’ What’s worked for us. Food for thought, not a promotion. By Victoria

• Wearable Safety Devices: ‘What will you do if you/your loved one has a fall?’ Considerations, features and my experience. By Victoria

• A Home That Still Fits. “Why adapting the home isn’t about removing risk — it’s about preserving independence, confidence, and the life someone still wants to live.” By

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Discussing everyday finances, bills and banking

• Bills & Essentials: Are the Lights Still On? Caregiving & Bills: Keeping the Essentials Paid Without Taking Over by Tina

• 8 Resources to Help Caregivers Understand the Legalities of Managing a Loved One’s Finances. Trusted places to learn what you can do legally (and what won’t work) by Tina

• Money, money, money! How to start talking about finances with your parent. Tips and conversation starters for your first talks about finances with your aging parent. By

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Care support: where parents live.

• How Do I Know When My Loved One Should No Longer Live Alone? Five Indicators That It’s Time for Dad to Live with You. By Tina

• Anyone seen my toothbrush? By Courtney Martin at the examined family. Courtney shares her transition to cohousing intergenerationally, moving to a house where her parents (her father with advanced dementia and her mother with chronic illness, having cared for her father for over a decade) live with her and her family. Her brother lives closeby. I highly recommend reading her articles.

• Granny flats: when love and the law collide. Thinking about a ‘granny flat’ arrangement for your parents? Here’s what you need to know by

• Is Care Migration the Next Frontier? Or another bandaid for our broken care system? by

• The Staggering Costs of Elder Care in America My Experience with Medicaid, and Threats our Safety Net faces by

• Is it too early to look at assisted living? (Probably not!) A common mistake I hear when I ask friends about their mistakes is that they wish they had gotten their parent into assisted living earlier. by

• In caring for aging parents, can we see assisted living as assisted loving? Making the decision to place my mother in memory care as her dementia progressed was wrenching but each day I find that the circle of love can extend beyond her family. by

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Care support: orchestrating support at home

US-focused articles

• Solutions to Two of Healthcare’s Most Intractable Problems: Caregiving Costs & Insurance Denials. The Advocates. Episode #2. Neal K. Shah. CareYaya & Counterforce Health AI By and

  • The website: Careyaya “Changing how America cares for its elders”

  • Counterforce website “Appeal your health insurance denial in minutes”

• What Are the Different Types of In-Home Care for Aging Parents? by Tina

  Oh Crap! I’m a Caregiver, Part 5: What each kind of care means, when you might use it, where you can find it, and how it may be paid for.

• Learning to ask for help. Our “awkward, brave & kind” email and the response we received By Sarah Coomber. Sarah shares the email she sent to friends asking for help, and how they used a Google Calendar to coordinate efforts. Practical, word-for-word advice.

• The Things Nobody Tells You About Asking for Help. By

• 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.

UK-Focused articles

• Here in the UK, I think there’s an assumption that, with the NHS (free at the point of clinical need), care, including end-of-life care, is readily accessible to everyone. It’s not. It’s worth investigating the availability of services (agencies and charities) and their cost before having care discussions. In England, social care funding thresholds determine if you pay for your own care (self-funding) or get local council help. If you have assets (savings, investments, property) above £23,250, you pay full costs. If assets are between £14,250 and £23,250, you pay a tariff income, and if below £14,250, you pay only from income. Your local council may be aware of additional services, but generally, the only difference (as far as I know) is how the care is funded: contracted by the council or self-funded. In England, the quality and availability of services are a ‘postcode lottery’.

  Paid Care can include: companion care, carer support and basic care tasks. Care support for more complex needs is difficult to find. Overnight ‘awake calls’, where someone watches over your loved one while you sleep, are difficult to find and postcode dependent. We found that our local hospice charity could provide some care support, depending on their team’s availability.

• How do I get care support in the UK? Getting clear on care support, hospice and end of life care. By Victoria

• A UK online organisation: Lottie. “Compare care homes, home care services and retirement properties”

• Carers UK information about Finding Care Agencies and Care Workers

Siblings, family dynamics

• Why Sibling Tension Explodes During Caregiving (And How to Calm It) Answers to why this feels so heavy...By

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Long-Term Caregiving

Enabling your parent to live the best quality of life possible. The challenges of caregiving long-term with unpredictable, worsening health. The uncertain duration, step-down progressions, and trying not to wait for the other shoe to drop. Trying not to be subsumed by the caregiving, sustain a sense of self, and savour the small moments.

Enabling comfort and quality time

• Breaking the Silence: Addressing Elderly Parents’ Loneliness Together By

  “Suggestions for managing loneliness in our parents

  Loneliness in our elderly loved ones is a serious concern that affects both their mental and physical well-being. I want to share what I have found works, as well as some other strategies I’ve learned from others, to help your elderly parent cope with loneliness.” - Kerri

The giving and receiving of care

• Caregiving Misperceptions and Realities. What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities? By Victoria

  “The reality is that we optimise situations for the care, comfort, and well-being of our loved ones. We must make careful trade-offs between risk and benefit, rather than prioritising productivity. This includes advocating for ourselves by taking our safety, health, and capabilities into consideration and setting our boundaries. This is why care solutions are unique and need to be personalised, not generalised.” - Victoria

• I promised not to put her in a nursing home......but I did it anyway. By

  “The undercurrent of judgment that “putting a loved one in a home” is somehow a breach of trust, a break in a contract, or even abuse or neglect permeates the family caregiving space. Sure, they will say, “No judgment,” but it’s there.

  Like those who place their parent in a facility of some kind are somehow weaker, less dedicated, or selfish.

  It took me a long time to break free from the misconceptions I had about what it would mean to allow my mom to live in a nursing home.” - Jeanette

• When you need as much healing as the one you care for. My burnout didn’t come in a big wave that overwhelmed me. It came in the little moments that kept building and building. By

• A Caregiver’s Temper by The Caregiver shares the very real emotional turmoil that caregivers go through. Imagine this day in and day out for a very long time. Imagine if someone comes in with clichés or ‘advice’ (even if it is well-meaning). Imagine the impact on a caregiver’s mental health over time. THIS is why we need community support.

• The Hazardous Middle Stage of Caregiving (And How to Prepare) Understanding the hidden grief of loss...by

• Never Off Duty: The Caregiver’s Struggle with Hypervigilance by The Weight of Caregiving

  “Caregiving is often described as an act of love, a responsibility that comes with deep emotional rewards. But for many caregivers, particularly those providing care for an aging parent, it becomes something else entirely. It becomes a constant state of alertness, a life lived in anticipation of the next call, the next crisis, the next moment when everything suddenly shifts and requires their full attention.” - Allison

• The Scene That Stopped Me Cold: Why We Need to Take Caregiver Collapse Seriously by The Weight of Caregiving

  When a caregiver reaches their breaking point, what they need isn’t a reminder to “rest” or “make time for themselves.” They need actual relief: respite care, flexible work policies, financial support, and accessible mental health services.

  Caregiving is love, yes—but it’s also labor. And until we treat it that way, we’ll keep seeing stories like this one play out on TV and in real life.

• I’m Not Mother Theresa I’m a sober daughter, a work in progress trying to do the next right thing By Jodi is the primary caregiver for her mother who has Dementia. She shares the realities of everyday caregiving.

• Recognizing Trauma Responses: A Lesson in Compassion. The things Mom’s aide did that drove me crazy, I’d done—to survive abuse by

• Backup Plan for the Backup Plan If you do nothing else this year, make sure your caregiver plan has contingencies. In caregiving, “One is None.” By

• Poem: ‘The Eldercare Rollercoaster’ The unpredictable emotional ride-along when your loved one’s health has an increased, accelerated decline. By Victoria

• Poem: ‘Cut through and torn’ By Victoria

• Poem: ‘Friends, I see you!’ I wish you restorative sleep, moments of joy and peaceful calm. By Victoria

• Poem: ‘We don’t like the Hero-ing.’ For carers empathy and listening are more powerful gifts of support than suggesting solutions- no matter how well-intentioned they may be. By Victoria

• Poem: ‘The ‘We’ of Cancer What I do to navigate both of us through anxiety and uncertainty. By Victoria

A crisis or emergency, hospital and discharge

• The Recovery U-Turn. When recovery isn’t a straight line and caregiver instincts become vital. by

  “the cognitive fog rolled in and my caregiver “spidey senses” kicked in to high gear. I was used to my father-in-law’s typical apathy towards taking care of himself - even the lackadaisical manner in which he was treating his recovery from surgery. This was different - something was off.

  We were staring down a 2:30 PM lab deadline - the kind of hard stop that, if missed, creates a medical black hole over the weekend. I had repeated this deadline to him like a mantra for three days. Yet, when I called at 2:00 PM, he was drifting.” - Gen X Caregiver

Downsizing, sorting through belongings before they pass or afterwards

• What to keep... ...what to throw away by

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Palliative, Hospice/End-of-Life

US-based definitions and experiences

• Cancer: What Does Remission Really Mean? A Plain-Language Guide to Cancer Terms Like NED, Stable Disease, and Response by

• Palliative versus Hospice. What’s the difference? By

• Palliative Care Isn’t What You Think You don’t have to be dying, for one thing

• 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. (includes information on Community-based palliative care) by

• My Mother Was Dying… So Why Was She Still Being Kept Alive? The One Question That Finally Ended My Mother’s Suffering by

  We requested a family meeting with the hospice physician, nurses, caregivers, and our entire family. After listening to their reports, I asked one simple question: “If she is in hospice, why is she still receiving multiple life-sustaining medications?”

  I recommend reading more about Carol’s experience and the key lessons she wants every family facing hospice care to understand.

  “.. this experience taught me something important: you cannot assume; you must ask questions, review care, and advocate for your loved one every step of the way.” - Carol

• Home Again When the timeline compresses a well-oiled machine springs into action. by . This is a heartwarming read because Edie shares how her siblings pulled together to orchestrate Nina being at home.

  “Coming home to die. That term had always sounded so dark and morbid. Now, it was a ray of light, something we desperately hoped we could make happen, the pony at the bottom of the shit-pile Nina had been digging through for years.” - Edie

• The Lighter Side of Hospice Humor is an unlikely but welcome bedfellow by where she highlights ‘s work and words.

  Humor and hospice may not seem a natural combination, but their pairing also makes perfect sense. Humor normalizes a natural process—dying—that every single one of us will experience yet rarely discuss. It is an inevitable event for which we are, somehow, totally unprepared. Of course there is going to be some weird sh*t going down. We might as well enlist it for a laugh.

• What’s a good food for a hospice patient to eat? By

  “What’s a good food for a hospice patient to eat? Something with lots of vitamins, right? Calorie dense? Protein-packed?

  Fuck that.

  A good food for a dying person is whatever the hell they want. Big Mac. Tacos. That certain random pastry from the bakery two towns over. Baileys on ice. Linguini with clam sauce. An ice cold beer. We had a patient who had her mouth swabbed with red wine when she was too weak to swallow.

  As long as they can chew and swallow it without choking, it’s fair game.

  If anyone tries to shove those Ensure drinks down my gullet for months on end one day, I’m gonna haunt them. Big time haunting.

  Can you tell it’s lunchtime and I’m hungry??? Good thing I have my car candy (gummy worms)!” - Denise

• What does “the end“ for patients with dementia look like? By

  Sometimes, patients won’t eat more than a bite or two for days or weeks in a row. Then, they’ll eat great for a week. Then back back to the other.

  Sometimes, they will smile and be alert all day. Then they will sleep for three days straight. Then go back to normal. Up and down.

  The family asks, “how long can this go on?”

  The answer is: much longer than you think.

  It sucks.

  It’s sad.

  I hear family say all the time, “my dad would never want this.”

  You’re not alone in wishing that it would just be over. You’re not alone in not wanting to spend too much time in the room with your loved one with dementia. It’s depressing, and there’s nothing anybody can do.

  It’s February now. Sometimes in dementia land it feels like it’s always February. It’s just dark and cold and sad and quiet and miserable.

  But spring will come again. - Denise

• International End-Of-Life Doula (INELDA)

  INELDA defines an end-of-life doula as a nonmedical companion who provides personalized and compassionate support to individuals, families, and their circles of care as they encounter and navigate death, loss, and mortality. An end-of-life doula advocates self-determination and imparts psychosocial, emotional, spiritual, and practical care to empower dignity throughout the dying process. - from the website

• US National End-of-Life Doula Alliance (NEDA)

UK-based information

The tip I give to carers in the UK: the best recommendations for quality care homes and palliative/end-of-life care are Hospice UK, local Maggie’s centres (the cancer charity), and local Macmillan nurses. The experts are those who interact with the very sick. A telephone call can reveal volumes of insights quickly.

• “Your guide to hospice and end of life care” Hospice UK and their care finder

• “Find Cancer Support” Maggies centres. I’ve asked for their advice for hospices and end-of-life care unrelated to cancer. They have the experience and the experts, including therapists and counsellors.

• Macmillan Cancer Support. End of life information. Palliative care and cancer

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After your parent, family member, or friend has passed

UK information

• UK Government

• Citizens Advice

• Marie Curie PDF

• Bereavement Advice Centre is a free helpline and web-based information service provided by Co-op Legal Services.

US information

• US Government

• National Institute of Aging

• AARP

• Don’t Wait To Probate In the U.S., probate is a critical step to ensuring that a loved one’s debts are resolved and assets are transferred. Not doing the work can lead to complications. By

Caregiving for your other parent

• You’ve made it through. A few reflections at the beginning of a new year. By

Carrying grief as life continues

• Poem: ‘Echoes in the Walls’ Reconciling with grief over the festive period. Written by Victoria. I wrote this poem after Dad died.

• My caregiving is over...why am I still freaking out? by

  “Towards the end of her life, over the last several months, she became less able to make her own decisions and, I think, was too exhausted to keep trying to, so these moments became more stressful in my life. And then, in the end, I made decisions, considering her wishes, on how the last few days of her life would go.

  I am still recovering from all of that and grieving from the profound loss of the woman who loved me the best she could for as long as she could.” - Jeanette

• When Grief Is Relief. The Truth We’re Afraid To Admit By

  “When my mom died, after more than five years of struggle with Lewy Body Dementia, I exhaled. My first thought was “Finally! It’s over,” uttering the same sentiment that I felt was so heartless two decades before. I was grateful she was free from the confusion of her own mind. I was also relieved to be done with the constant gnawing anxiety of visiting the nursing home (which was in a bad neighborhood) and of bracing myself for the phone call from my sister telling me that she had passed. The struggle – hers and ours – was finally over.” - Carolyn

• Personal Reflection: ‘Grief, Love persevering’ The painful threads within us.

• ‘Grief is messy. It’s not a tidy five-stage path.’

  Lucy Hone, a public health Resilience Researcher, shares her insights on grief following the loss of her daughter. She draws on her experience as a resilience researcher to support and analyse her own grief journey. She differentiates between grief reaction, which is uncontrollable, and grief response, which involves active choices to manage grief and having more personal agency. Hone emphasises the importance of oscillating between confronting grief and taking a break from it, a concept known as the oscillation theory.

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Support organisations and book recommendations

This book list includes dementia and caregiving books

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

If you know someone who could benefit from these resources, please share Carer Mentor with them

Please share this article/restack in Substack so others can find these resources. Thank you!

Share Carer Mentor: Empathy & Inspiration

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 written 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

Each letter will be published on Tuesdays during the Summer Season.

Today’s ‘Letter from a Caregiver’ is by

I recently met Vicki. In her article The Architecture of Belonging she writes about “The Turning Point”

In 2022, my husband was diagnosed with Alzheimer’s. The decline was swift. The man who had written “Welcome home” was slowly disappearing.

For four years, I became his caregiver.

Medication schedules replaced dinner conversations. Vigilance replaced rest. Our world narrowed.

And quietly, almost imperceptibly, I began to disappear too.

The house that once felt like a sanctuary began to feel heavy with memory.

Community felt distant.

Even my own reflection felt unfamiliar.

Read more about Vicki and Lee at The Tender Warrior, for example:

• Over and Over Again

My heartfelt condolences to Vicki. Thank you for your letter.

Author’s Bio: Vicki Tull lost her husband to Alzheimer’s over seven years — four of them as his primary caregiver. Somewhere in those years, she stopped recognizing herself in the mirror. Today she writes The Tender Warrior, published three times a week for anyone who has loved someone through loss and is ready to belong to themselves again. Because after caregiving, coming home to yourself is not the end of the story. It is where the story begins.

The Suitcase by the Door

Indialantic, Florida. September 2023.

Dear Vicki,

You just got home from Venice.

Put down the suitcase. Leave it by the door. I need to talk to you.

I know what you’re feeling right now. The guilt is sitting on your chest like something physical. You keep replaying it — the plane, the seatbelt, the look on his face. The way the Venice crowds overwhelmed him before you’d even left the airport. The 90-degree heat. The streets you’d imagined walking together, hand in hand, the way you used to. The hotel room where he spent most of the time in bed while the Adriatic glittered outside the window, indifferent and beautiful.

You went because you wanted to feel normal again. Husband and wife, traveling together, the way you were in Alaska the year before — when he stepped off the plane and became himself again, adventurous and alive and fully there. You wanted that man one more time. You needed that man one more time. And so you booked the trip, and you hoped, and you got on the plane.

I can still feel the guilt and regret and disappointment.

You did not do this wrong. Hear me again. You did not do this wrong.

You did it out of love. Out of the very human, very reasonable refusal to let go of something before you absolutely had to. You were not in denial — you knew things were changing. You just weren’t ready to stop reaching for him. That is not a character flaw. That is what it looks like to love someone the way you love Lee.

But I also want you to be honest with yourself about what this trip showed you, because you already know it and you’re trying not to look directly at it.

This was the last one.

Not because you failed. Not because you chose wrong. But because the man who bristled against the seatbelt on that plane is telling you something about where he is now, and part of loving him — the hardest part — is learning to hear what he’s telling you even when he doesn’t have the words for it anymore. The cramped seat terrified him. The crowds were too much stimulation. His world is getting smaller and no amount of love or planning or hoping can make it larger again. That is the disease. That is not you.

The guilt you’re feeling right now — hold it gently, but don’t let it move in permanently. Guilt has a way of masquerading as love, of convincing you that punishing yourself is the same as honoring him. It isn’t. You took him to Venice because he was the love of your life and you weren’t ready for the adventures to be over. There is nothing to be ashamed of in that. The regret is real and it is yours to feel. But that is not the whole story.

This is important for you to know.

You have been showing up for Lee every single day with more love and steadiness than most people will ever be asked to summon. You have been his wife, his companion, his anchor, his calendar, his safety. You have navigated behaviors and moods and moments of confusion and moments of terrible clarity — his and yours — and you have done it without a roadmap, largely without help, largely in silence. That is not nothing. That is everything.

And now you are home from a hard trip, sitting with a broken heart, and I need you to do something that does not come naturally to you.

Let people in.

Call the friends who have known you for decades. Not to perform okayness, not to give them the edited version — the real one. Tell them what Venice was. Tell them what you’re carrying. The research will tell you that caregivers who maintain connections outside the caregiving role fare better, stay more resilient, and show up more steadily for the people they’re caring for. But forget the research for a moment. You need your people right now. Let them be there.

And start building your network — not someday, now. Medical professionals who can explain what’s coming. Care professionals who’ve walked this road with other families. People who can see Lee in the moments you can’t. You have been trying to solve this alone, and Alzheimer’s is not a problem that can be solved alone. The strongest thing you can do right now is ask for help.

One more thing.

There will be more grief ahead — I think you already know that. The trip to Venice is not the last loss. There will be the day his needs become more than you can meet at home. There will be the day you realize you are his caregiver now, not his wife, and you will write that in your journal in the specific, precise language of someone trying to make sense of the unspeakable. There will be the day they tell you your presence upsets him and it’s better if you stay away.

Each of those days will ask everything of you.

But here is what I know from where I stand, looking back at you sitting there with your suitcase and your broken heart and your jetlag:

You are going to be okay. Not untouched — you will be changed by this, permanently and in ways you can’t yet see. But changed into someone more patient, more open, more clear about what matters than the woman who booked that flight to Venice hoping for one more normal trip.

The love you have for Lee is not diminished by what this disease is taking. It is proven by it. Every day you show up — every seatbelt you gently fastened, every moment of confusion you quietly smoothed over, every time you answered the same question again — that is the love. That is what it looks like now.

Start by trying to put down the guilt. You took him to Venice because you loved him. He knew that. Even now, even as so much slips away — he knows that.

Come home to yourself. Your people are waiting.

With all my love,

Vicki

One last question to close the letter from Victoria.

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

I keep coming back to The Snow Child: A Novel by Eowyn Ivey. It’s a story of resolve, resilience, love, acceptance and loss - and it transported me to the wilderness of Alaska where family and home and community are all you have sometimes.

Prompt for discussion:

There is often a single moment that divides caregiving into before and after. It could be something very small that marked the transition. Something very personal to you and your spouse. What was that moment for you?

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

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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 written over the past three seasons.

This Summer Season so far

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

Today’s ‘Letter from a Caregiver’ is by

I met Marina earlier this year. While our caregiving and life circumstances are very different, I recognised common themes, a resonance in her articles. I think any caregiver will feel that resonance, too. Those feelings of uncertainty, our reactions to the pitying looks, and our attempts to reconcile with the uncontrollable, while still trying to erect some sort of stable scaffolding for our loved ones. I get it; several others will too.

Thank you for your letter, Marina, and for your important work helping other caregivers. I hope more caregivers connect with you and your articles, especially spouses/partners and mothers.

I encourage you to read more of Marina’s work at The Together Hub:

• A Full Weekend Just for Me, and the Feelings I Didn’t See Coming A weekend of freedom, joy… and a truth I wasn’t ready to face

• Twelve Months of Holding It All Together What caregiving, waiting, and loving someone through illness taught me about strength, limits, and choosing where to place my energy

Author’s Bio: Marina is a mother of two young children and has been married for over ten years to a husband living with autoimmune diseases, a journey that led to a liver transplant and revealed her identity as a caregiver. With over 15 years of professional experience and having lived in four countries, she brings both depth and perspective to everything she does. She now channels both worlds into The Together Hub, a company dedicated to bringing caregivers out of invisibility.

The Word I Didn’t Know I Was

Dear Marina, of April 2025 in Lisbon,

Knowing you as well as I do, I know you would love to meet me. You’re probably wondering who I am and how I know you so well, so let me tell you straight away: I’m you, from the future.

Wow. I know you have so many questions. And as you always say, there are things you know will eventually happen, but if only you knew when, that would make all the difference to your anxiety.

So I’m here to ease some of that anxiety. I’m not going to spoil everything, but I will tell you this: the next 12 months will be some of the most challenging you’ve ever faced. And yet, they will also be the period in which you change the most.

Change is neither inherently good nor bad. But in your case, it is inevitable, and ultimately, it is beautiful. You will get to know yourself deeply. You’ll become introspective in ways you’ve never been before. And you will be so genuinely kind to yourself throughout it all that it’ll be a joy to witness.

I know what you’re living through right now isn’t easy. I know that receiving the news that Gu will be added to the transplant list, without knowing when, is terrifying. I know the thought alone is already triggering a panic attack. But here’s one thing I can tell you with certainty: the anticipation is harder than what you will actually feel when you get there.

Right now, the word “caregiver“ has never crossed your mind or your vocabulary. But in just a few months, you’ll be talking about it every day. It will become your work, your identity, your purpose.

Which brings me to the first big news: you will leave your current job.

You were never truly happy there, deep down, you knew it, but you were always afraid to admit it, let alone act on it (the end-of-month paycheck had a lot to do with that). I won’t tell you everything that unfolds, but I will say this: that chapter will become one of the greatest contributors to your journey of self-discovery.

Leaving wasn’t an easy decision. You had been feeling unlike yourself for a while, and it was seeing your kids notice it that became the turning point. You felt weak, alone, and like you weren’t good enough. But Marina, leaving that job was one of the bravest, strongest things you have ever done.

Because for the first time in a long time, you put yourself and your wellbeing first. And this is something you’ll learn throughout this year is not just important, it is essential. Not only for your own survival, but for the wellbeing of everyone around you.

I’m writing these words and reading them back to myself, hoping I’ve finally learned this lesson. Because the 2025 version of you didn’t fully know it yet. And honestly? Sometimes the 2026 version of me still forgets. 🙂

Now, let’s talk about friends, because some of them will prove just how close they really are.

Even the distance from João and Marcela won’t diminish the love you all share. You’ll find moments together, you’ll see each other, and you’ll still miss each other, and that’s okay.

And Paulinha. We all know she’s already important, but this year she will go above and beyond for you and your family, and she’ll do it while being pregnant! Yes! The news came at exactly the right moment: a burst of joy in the middle of everything you were all going through.

This will also be the year you feel closer to your family than ever. They’ll visit more often, and their support will carry you. You’ll feel a little irritated by the pitying looks and saddened by the worried eyes, but all of that will be eclipsed by the warmth and love you’ll feel and give in return.

And Gu, Pipa, and Pepe. They are everything, you already know that. But this year, you’ll feel it even more deeply.

You’ll want to make everything perfect for the kids, to shield them from what’s happening. Let me tell you: you don’t need to. Not even a little. You are going through this too. You have fears too. This is your story as much as it is Gu’s. So let yourself feel it sometimes. Let it be imperfect.

You’ll be demanding of Pipa, she’s the oldest, and you’ll lean on that without always meaning to. You’ll also start to notice Pepe growing up faster than you expect. But try, whenever you can, to just be with them. Laugh when they make a mess at the dinner table. Play with them. Be silly.

Because here’s what I want you to know: you will miss singing Aquarela to Pipa. You will miss the nights Pepe falls asleep on your arms, because by now, he falls asleep on his own and doesn’t want to be held like that anymore. Enjoy the little moments. They pass, and then they’re gone.

There’s something else about your family that you should be proud of and never take for granted: you never let the challenges become bigger than you.

Throughout this entire journey, you and Gu chose to be larger than the disease and whatever it brought with it. You kept living, really living, despite everything happening around you. You understood this as your reality, as something you couldn’t change. And so instead of collapsing under it, you decided to carry on alongside it. That was extraordinary to witness.

Let me close with a few spoilers, because you’ve earned them:

• You will start your own business

• You will help people feel heard and seen

• You will consider moving to another country (I know, shocking)

• This will be one of the years you travel the most

• You will travel alone with Pipa and Pepe, a four-hour flight, to a country you’ve never been, and you will feel so powerful for doing it (as you should)

This letter has grown long, and I could keep going. But part of what you’ll learn this year is to live in the moment. You’ll have to face some of the biggest challenges of your life to grow into who I am today, and I wouldn’t take any of it back.

So I’ll close with the most important thing I can tell you:

Gu was added to the transplant list on November 30th. I know you can’t imagine it right now, but that day will be one of the happiest of your life. Not a day of fear, a day of relief, of possibility, of hope. The transplant was no longer a question of if, but of when.

And because I want to be kind to myself, and to you, I’ll say one more thing:

Gu has received his transplant. And he is recovering at home. 🙂

You’re going to be okay, Marina. More than okay.

By Marina, 2026

One last question to close the letter from Victoria.

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

Atomic Habits by James Clear. Throughout this year, it became more important than ever to understand the power of small, consistent habits, and how the right ones can quietly hold you together when everything else feels uncertain. Daily exercise, for example, was both life-changing and, in many ways, life-saving.

Prompt for discussion:

When did you first realise you were a caregiver, and did you ever give yourself permission to also be the one who needed care?

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

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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-three letters have been written over three seasons. Many thanks to all the caregivers who have shared their letters with us.

A new season of letters begins today.

For context: In 2019, my Dad had numerous compounding health issues. The highest priority one was his congestive heart failure, which was destabilised by bladder cancer. He was peeing Bordeaux, having urinary tract infections, and in turn these were aggravating his rheumatoid arthritis and stability. Atrial fibrillation episodes and falls were unpredictably frequent, usually in the depths of the night. Vascular dementia made this more torturous for him. Shouting to stop us from calling paramedics and crying with sad exhaustion. Dementia discombobulated his reasoning. In the last months of 2019, my mother was also undergoing cancer investigations.

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

Dear younger me of 2019, in full action mode

R-E-S-P-E-C-T.

I look back at all we did then, and I’m in awe of all you’re doing.

I’m not here to change anything or to tell you what to do. I’ve learnt so much over the years of caring for Mum and Dad, and from you. Thank you.

As I write this, I’m mindful of making any assumptions, generalisations, or sweeping statements. Every situation - yours, mine, others, whether at the start of caregiving or deep in the long days of no sleep and stress - they’re all different. Pieces may look similar, themes may resonate, but I struggle with blanket instructions and advice. I think our biggest learning is to never assume we have the answers for someone else (and that includes you, dear younger self) - no matter how much we want to prevent someone from feeling the pain we’ve felt, we can only offer up our experience as an example, and share ideas for others to try out. Maybe what helped us can help them, but who knows!

Humans and relational dynamics will make every experience messy and non-linear. We can easily trap ourselves in self-built disappointments and frustrations.

Caregiving tasks compete with our presence as their daughter. We want to be more present, but we’re chasing a prescription, an appointment or a letter. And let’s not overlook all the household and financial administration required to maintain their everyday welfare. After securing this scaffolding of care, the hands-on caring verbs of organising, preparing, showering, and cleaning take precedence over the “less productive” ones of ‘just being’: sitting together, listening and curating quality memories. Sure, we do our best to weave these into caregiving, but sustaining the scaffolding can steal our time, energy, and peace of mind!

We know how blessed we are. You could choose to stop working and be with them. You and Mum are tag-teaming Dad’s care in 2019. We try to curate quality time and memories in the smallest moments of the day. And still, you’re becoming more aware of how caregivers are informally recruited to be the unpaid glue of the fragmented healthcare system. Connecting what could get missed. Questioning to confirm the foundations of our understanding. We don’t want to prove a negative - what would happen to the scaffolding if we didn’t do what we do! We smooth the path and become that path for continuity. We hold the scaffolding, upright and in place.

We champion and advocate because we already know what happens when we don’t emphasise Dad’s needs. During a hospitalisation, a water jug is too heavy or too far out of reach to quench a thirst. A food tray would come and go without being eaten because a tired body and arthritic hands couldn’t get the food from the tray to his mouth. Our caring doesn’t stop at the hospital entrance. In an overworked, understaffed hospital, we camp out by the bedside to care.

Time warps. You already know hyper speeds. You’re starting to feel the mounting dread, hypervigilant and primed for another paramedic call-out. These are inevitabilities. Not ifs, but when. The anxiety-fear around spikes of speed and drama hangs heavy. Caring for Dad in 2019 is about walking on eggshells. Living on the thinnest, sharpest edge of fraught and still continuing.

You might not feel like you’re doing anything well, but you’re the one grading yourself harshly. From where I am in the future, you are surviving and doing your best for both of them and yourself. Like I said, RESPECT. What you’re doing IS love in action, even if you’re having to redefine what that means for you with every single sunrise and sunset.

That love is fuelling your courage to continue caring despite the fear and frustration you feel inside. Don’t second-guess your love in action; how you’re caregiving. Question the scaffolding, challenge default assumptions and ask someone to go a little further to help you. Trust your choices.

Today, caring for Mum, the calmer waters are becoming murkier. While less fraught than caring for Dad, time is warping again. There’s a molasses, a darkening with scanxiety, waiting for discussions, recommendations, and more cancer treatment. These suspended days of blurred time stretch out pinned only by the next appointment. Hanging low, suspended with uncertainty. Never quite touching the ground.

Even in these stretches, there’s continuous movement; a learnt agility and responsiveness to act. More confident, for sure, but we’re still learning and adapting. We have to. It’s another part of courageous caregiving. We’re curiously learning how the scaffolding is evolving, so we can recalibrate and act.

I’m discovering something new about how to ask for medical support or request an action. Our GP practice has evolved in how it triages, responds, and operates. It’s not the old school, cradle-to-grave relationships, but that would be impossible these days.

I’m the monitor and report system, trained in what looks normal, or not, for my parent. Primed to activate our practice or the hospital specialists. My writing skills are being honed via eConsults: 500-character online requests. Words matter. Red flags trigger a fast triage, so I keep asking, “What do I need to look out for if this is escalating?” and lean into words and phrases that can help me close potential patient-physician communication gaps

It’s an iterative loop of learning—adapting by doing, whilst caring. The scaffolding is evolving, but we’re still the glue and the interface, identifying potential weak spots and filling gaps.

It’s easy to feel the warped tension of time with all the tasks. Weaving all the caregiving, monitoring, reporting, and my own needs within each day could easily distort my loving frame of intention.

But love in action and courageous caregiving also include how we treat ourselves as caregivers. I’m sharing all this with you because in 2019, you’re setting boundaries, prioritising, and making hard decisions. It’s not just for Mum and Dad’s benefit, it’s for yours too.

When expectations are swirling, breathe deeply, hold space and choose what matters most in this minute. You know what that is, hon. Trust yourself.

The power of being zen with incomplete tasks.

Being zen with an unfinished task is a new practice I’ve been trying to learn for a while now. The incompleteness would grate on my former corporate self. The completer-finisher, list- and checkbox-trained project manager, would baulk at the laundry half-folded or the dishes half-washed. But I’ve learnt that trusting myself to get it done.. eventually… is okay.

The rebellious, anti-productivity nature of an unchecked box has its own intoxicating freedom. To suspend my urge to finish something this minute. To be ok with frustrations that may swell. These internal self-imposed challenges to ‘get-it-done’ don’t have to steal my energy, or our random moments of joy. Who set this race against time, anyway?

It’s not the completion of the task in this exact minute that matters. When time’s being warped, we have to make more meaningful trade-offs. If that’s synonymous with doing laundry, fine - but maybe it’s about choosing what you need to wash first and trusting you’ll get to the others later. Don’t let the lure of an empty laundry basket distract you from what really matters!

Some of my frustrations, whilst caregiving 24/7, can come from my own conditioned sense of starting and finishing something in one sitting. But there are only 24 hours in a day, and our energy is already spread thin. Am I worried it won’t get done,… really?

It’s okay to want to feel in control and productive. Seeing a clean kitchen or a freshly made bed can give us a sense of order and satisfaction in an overwhelmed or out-of-our-control situation. So let’s choose the best time to do it, or better yet, feel if the moment is now or not and move on. That’s how I ended up cleaning the kitchen worktops and sink at 10 pm. Who dictates the time things need to be done? Let’s be our own kind of unconventional!

It’s also okay to choose yourself instead of the laundry or the dishes. It’s not just about getting up earlier to journal - although that works some days. You can choose to spend an hour in the day writing while Mum’s sleeping, one ear open to hear her.

Mindful, meaningful moments need courageous choices, especially when the demands on- and expectations of- our time and energy are increasing.

There is a weirdly powerful zen in walking away from the unfolded towels on the chair, taking the big thermos mug of tea, switching on your go-to playlist, and spending time writing. You may not be able to write or journal for a long period, but it’s the choice, a vote for yourself, that matters. Of course, the towels got folded later…But this way, I reclaimed some time for myself!

Everything you’re doing now, in 2019, is giving me the trust I need to continue now. Our experience, agility, and years of caring help me zero in on what’s most important. Even if no one else gets my choices, you do, and that’s all that matters.

There are no perfect answers. We’ll keep curiously learning and discovering, hon. It’s one way we’ve learnt to move forward with the fear and uncertainty - we don’t judge the emotions, they just are.

You know what matters most, despite the ongoing recalibrations and time warps. Trust yourself. Your caregiving is about making brave choices and love in action. Remember that the choices to dedicate time to yourself and your passion projects are integral to that, too. They’re not an afterthought. Curiosity and empathy need to be directed inwards as well as to others, to meet our version of meaningful caregiving; that’s how we keep evolving and living our truth.

Keep going, hon.

Love you,

2026 Me

Prompt for discussion:

Are you okay with leaving a task incomplete?

Do you catch yourself getting frustrated when you're called away mid-task? Where’s the frustration coming from and why?

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

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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

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.

Subscribe now

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 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!

There are two previous seasons with Twenty-One Letters.

This Spring Season so far

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

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

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

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

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 Khadra Awomer

11. “Stay Hydrated” by Bud Hager

Today’s ‘Letter from a Caregiver’ is by Lucy Furlong

I met Lucy at the start of 2025. A poet, teacher, writer and walking artist, I was intrigued by her labyrinth walking and her work. Do you know the difference between a maze and a labyrinth? I didn’t. A maze is a puzzle with dead ends and branching choices, while a labyrinth features a single, winding path that leads to the centre and back out again without any wrong turns. A labyrinth “draws you in,” as Lucy says in her World Labyrinth Day article, “Have you ever walked a labyrinth?”

Lucy publishes “Setting Sundays” on Substack, and I recommend exploring her website. As well as her MFA in creative writing, she specialises in poetry, and holds a Postgraduate Certificate in Learning and Teaching in Higher Education (PGCLTHE).

Here are two of her articles you may like to read:

• Walking Home. Over The Fields,

• It Looks Like We’ve Made it to the End. But it’s only the beginning.

Thank you for writing this letter, Lucy. I know you’re spending a lot of your creative energy and strength advocating for your son’s needs. Keep going. I’m sending some strength and support your way.

These days, caring means we have to be “difficult.” ‘Difficult’, ‘annoying’, whatever anyone says, trusting our gut and advocating for our person’s needs gets things done.

Author Bio: is a Forward and Pushcart prize nominated writer, poet and walking artist. Her work has been widely published and exhibited, is taught as part of the Open University’s MA in Creative Writing and has featured in The Guardian and on BBC Radio 4. The second edition of her poetry map, Amniotic City, is available from www.lucyfurlong.com

Caring and Being ‘Difficult’

24^th May 2026, London, UK

Dear Lucy,

Your son has just turned 19. 19 years old! He’s a young man! It made me think of when he had his 15^th birthday, back in May 2022, and how much life has changed since then for us.

As you know, back then, you had been back in the UK for just over 6 months, having returned from Ireland with S in December 2021, after getting stuck there during the pandemic. It was a difficult decision to return because it meant leaving Wexford where you loved living and also your husband (S’s stepdad) having to go back to the States.

But you had to go back. S was very poorly, and the GP in Wexford thought it might be long covid but no one really knew. He had been ill for months after contracting covid earlier that year, was exhausted, underweight and desperately unhappy, aged 14. Dad was at home in Tolworth (where we had lived with him until we got stuck in Ireland in March 2020) and was also very poorly, having undergone surgeries, chemotherapy and a significant amount of radiotherapy in the summer of 2021, which was now taking a serious toll on his health and wellbeing.

S’s 15th birthday in May 2022 was his first back at home since we went on holiday to Ireland in March 2020 and got stuck in the lockdown there. We were unable to return because Dad had just started six months of chemo and we couldn’t travel in the lockdown, and we were worried we might infect him with covid. So we stayed in our holiday home in Wexford for six months (instead of five days) and then moved into a rented house on the edge of Wexford Town in September 2020. We stayed until we travelled back to the UK in December 2021, having by this point been vaccinated against covid.

S’s 15^th birthday was, you remember, a lovely, sunny May day. You had been to the local party shop in Surbiton the day before and bought two enormous silver foil number balloons, a 1 and a 5 to make 15, and a bunch of others all inflated and tied with colourful ribbons, which you’d had to carry back to the car, and stuffed them down between the seats where they were hidden until the following morning. You got up early the next morning, got the balloons out of the car and took them into the living room, putting them by the fireplace along with birthday bunting and a pile of presents and cards.

Even this year, at the age of 19, he still got a massive balloon with Happy 19^th Birthday S… I suppose at some point soon I’m going to stop…maybe. Anyway, remember what was really special about his 15^th birthday? He could eat proper food again.

At the beginning of March 2022, he was formally diagnosed with Crohn’s disease and had to undergo what his consultant called ‘nutritional therapy’ which meant a liquid diet from March until the beginning of May that year. This was a special powder formula called ‘Modulen’ which S’s consultant had actually been involved in developing, and which would sustain him nutritionally for the approximate eight weeks he took it – and he could eat NOTHING else.

He tapered on to it and off it at the beginning and end, but for many weeks he drank five bottles of this powdered formula, mixed with cooled boiled water, and banana flavour Nesquik and did not eat anything solid at all. The diet was extreme but designed to rest his inflamed bowel and give it a break so that it might heal, and the Crohn’s might go into remission. Other then the claggy banana flavoured liquid, which he drank through a straw so he tasted as little of it as possible (the banana flavour made it just about palatable) he was allowed to chew bubble gum, so you were bulk ordering every flavour of Hubba Bubba you could find online.

Four years later, and I still have no idea how he managed to stick to it but he did. He’s a tough kid. He’s had to be. If he hadn’t been able to do it they were talking about tube feeding which sounded very difficult indeed. Do you remember making up the bottles every day? Boiling enough water, measuring the powder, cleaning the bottles…it became routine.

At the same time you were wondering what to eat as you felt bad about carrying on eating a normal diet while he had to battle his way through this difficult but vital Modulen therapy. So you decided you would mostly eat soup, a sort of liquid therapy of your own to show solidarity – but still a breeze compared to what he had to do. You were making big batches of soup to last through the week and trying not to eat in front of him, although most of the time he was staying in his bedroom.

By his birthday S had started eating proper food again, beginning with half a chicken breast on one day, a small boiled potato on another day, and building up his ability to eat solid food one step at a time, slowly over the couple of weeks before his birthday, while at the same time he gradually weaned off the Modulen.

The other very special part of this birthday was that Dad / Granddad was back at home, in fact came out of hospital where he had been since March, the afternoon before S’s birthday. While you had been dealing with the hospital appointments for S and liaising with various people in various institutions to try and get him the help he needed to get him back into education, you were also trying to look after Dad. The shock you and S had when you arrived back from Wexford in December 2021 to find he had lost significant weight, was struggling to eat and generally struggling – it was a big change in him, and even though expected was very hard to see.

I’m not going to write about everything you went through with Dad here, you know what happened. The summary of this particular part of his story, is that he was rushed into hospital in the early hours of the morning of the day S was due to start the Modulen. He had fallen and you had called your sister and she had gone in the ambulance to the hospital with him as you couldn’t leave S.

Dad ended up being put on a dementia ward where he should never have been, and for a week after was treated appallingly. This was to the point where you were so worried about him, and the fact that no one was listening to you when you were telling the staff that he had colon cancer, that in desperation you went through all Dad’s recent hospital discharge paperwork. You were looking for any possible contact information, and you emailed the PA to one of the surgeons that had operated on him earlier in the year.

You know this was one of several times where you had to be resourceful and think of a possible way around a situation which seemed unresolvable – and where Dad did not thank you afterwards but actually complained about how difficult you were and how cross he was at the fuss you’d made. As you know, the day after you wrote the email, the surgeon appeared on the ward where Dad was, and where at the time your uncle, Dad’s brother, was visiting. So you got to hear from your uncle what happened:

“Then we heard a loud voice saying “Where is my patient, Mr Furlong, who I believe is here?” and the surgeon arrived and said he wanted to examine your father. Your dad was not pleased that you had emailed the PA and was complaining about you, but I stopped him saying you had probably done it with his best interests in mind….”

The thing is, Dad didn’t want any fuss and didn’t want to lose an iota of control over his life. He was fiercely independent and stubborn to the last, and it must have been so difficult for him to deal with his outspoken and ‘difficult’ daughter making that fuss on his behalf. Maybe that’s why he vented about you to other people.

I want you to know that you did the right thing because I know you’ve doubted yourself and been made to doubt yourself. If you had not sent that email, they would not have discovered that Dad needed emergency surgery, which he had two days later – as you know this surgery was successful, if risky. In fact it was so risky he said “Goodbye, just in case I don’t come through” in a brief telephone conversation just before he was operated on.

But he did come through it – he went into ICU and was very ill, had delirium, was diagnosed with covid which he had contracted in the hospital and you had to make a case for him being resuscitated if necessary. He eventually got better and was moved to another unit down the road where he slowly regained his mobility, having completely lost it during the weeks before and after surgery. It was a long haul, but he recovered. If you hadn’t sent that email what would have happened? He would have stayed on that dementia ward or been sent home – the surgeon said he could have died at any time.

Instead, he came home the day before his beloved grandson’s 15^th birthday and got to see family and friends (and he stuck around for S’s 16^th birthday too). Somehow you dealt with all of that at the same time, and being called difficult and being accused of making a fuss and goodness knows what else. Being ‘difficult’ seems to be a requirement when you are caring for someone. Being liked - it turns out - is not.

But what is important is trusting that you are doing the right thing for that person, even if you are being told it is a waste of time, or you shouldn’t. You have to trust yourself and your intuition – because you’ve been proved right so many times, even if no one appreciated it, even your Dad who you loved beyond all measure. You know there are things you wish you’d done things differently – noone’s perfect -but you always tried your best. So be kind to yourself and know that the effort and determination you put into getting S the support he needed (aka being ‘difficult’) paid off.

And there are plenty of people who like you and love you.

Love,

Me xxx

The Closing Rapid Fire Questions from Victoria:

1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving.

I practice mindfulness: I focus on my breath, taking slow breaths in and especially out. I think about my feet on the floor and try to stay in that moment and tell myself it will be ok and we will get through it moment by moment.

2. Thinking of someone you admire/respect (friend/colleague/well-known person), name three of their standout qualities/characteristics

I have an amazing friend, who has had several battles with cancer over the last few years, and three of her stand out qualities are: resilience, determination to continue living her best life, her generosity of spirit

3. What’s one quote/movie/book that’s inspired you?

“In the midst of winter, I found there was, within me, an invincible summer. And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” ― Albert Camus

Prompt for Discussion

Are there times when you’ve had to be a ‘difficult’ person?

Postscript from Victoria:

If you’re walking around London, you may want to explore the “Amniotic City” (2nd Edition) by Lucy

The next Summer Season of “Letters From A Caregiver” starts on Thursday.

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Dementia Action Week (UK) 18-24 May

Dementia Action Week is an awareness campaign led by Alzheimer’s Society (UK), bringing people and organisations together to act on dementia.

The theme for Dementia Action Week 2026 (May 18–24) is centred on raising awareness, improving diagnosis rates, and promoting early intervention. The Alzheimer's Society campaign- Forget Me Not appeal—highlights the critical need for timely diagnoses and challenges stigma

• The Diagnosis Gap: “1 in 3 people living with dementia do not have a formal diagnosis, which prevents them from accessing necessary care and treatment.”

• Dementia Action: Act now to support those living with dementia and their caregivers.

• Raising Awareness: Sharing personal stories as part of the Forget Me Not campaign or with your friends and family helps everyone recognise early signs and understand how to support others.

• What support is available, where and how: no one has to be alone. Talking and connecting are essential, whether that’s a dedicated Dementia organisation, someone else diagnosed with Dementia or a carer. Sharing our experiences of what’s worked for us can help someone else.

Care to share your Dementia story in the comments?

Tell us about something you’d share with someone who’s just been diagnosed or with their carer? What’s helped you and why?

OR

What would you describe as meaningful support for you today? What do you want your friend or someone else to know about what helps you.

Together, we can raise awareness and open up discussions about Dementia. Let’s offer each other support.

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.

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Carer Mentor supports Dementia Action Week

The Carer Mentor Website (desktop version) has a dedicated Dementia section with an Anthology of people’s experiences, ideas and reflections. This is a simple, easy-to-access reference that anyone can turn to when they’re looking for empathy and some comfort and inspiration. The image below shows the top navigation bar and the drop-down menu of Dementia resources.

Watch or listen to diverse Dementia experiences

Dementia UK has videos and a podcast that share the stories of carers and people with Dementia. Here are a few episodes:

Tommy lives with Alzheimer's disease. Andrew is the primary carer for his mother, who was diagnosed with vascular dementia in 2020.
In this candid pub conversation, the two talk about their respective dementia journeys -- one from the perspective of someone living with the condition, and one from the carer. They touch on the fear that so often accompanies dementia, rolling grief, dealing with guilt, and their hopes for the future.

You can find the podcast on Apple or Spotify (click image-link)

Hear first-hand stories from people who have experienced dementia, alongside life-changing advice from our dementia specialist Admiral Nurses.

Penny’s story about moving her Mum into full-time care.

Penny’s mum Rosemary was diagnosed with mixed dementia (symptoms of more than one type of dementia). Penny was organising increasing paid care support at a distance, and there were continuous recalibrations as Rosemary’s needs increased.

Penny and Rosemary’s podcast: Discovering Dementia (17 May 2017 - 25 April 2024)

Elene’s story about when dementia care doesn’t reflect your culture.

Elene found that she needed to provide meals for her mother in her care home. The ‘system’ was standardised for efficiency and practicalities, it didn’t cater to person centred care - to someone who’d never had turnips and parsnips before, she wouldn’t eat that, she wouldn’t get the nutrition she needed.

Black, African and Caribbean Communities Admiral Nurse clinics provide culturally informed, culturally sensitive advice.

Find support for you or someone you know

Dementia UK, Admiral Nurses webinar April 2026 (14 April 2026). It’s a useful video by Gemma Conway and Julie Reid, introducing Dementia UK and the role of Dementia Specialist Admiral Nurses. They share the range of support services available across the UK and specifically in Scotland. These services are for anyone who is affected by a dementia.

I recommend watching the video particularly at 11:10 when they share information about how to access the services: free consultations via video-link, or telephone calls with a Dementia UK Specialist Nurse

United Kingdom

• Carers UK: For unpaid carers with expert information, advice and support. A Carers discussion forum (anonymous participation). Campaigning to make life better for carers

• mobilise ‘Together we care and thrive’

• 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

• 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

• Memory Cafés Support groups.

Dementia, Creativity and Music shares articles about how we can use art and music to connect with our loved ones.

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

If you know someone who could benefit from these resources, please share Carer Mentor with them

Please share this article so others can find these resources. Thank you!

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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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Thank you!

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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

a year 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 - updated 12.19.24 We can't do this alone. Additional reading, resources, services, podcasts & media Thanks what a fantastic gift of resources.

• (UK) Talking care and creativity. A conversation with Lindsay Johnstone by and

• 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

• 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•

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Before my father died in January 2020, I lost count of the number of times I dialled 999 for an ambulance in the middle of the night for him. He experienced several atrial fibrillation episodes, cardiac events, and a couple of bad falls. Congestive heart failure, rheumatoid arthritis, cancer, along with vascular dementia, and organ issues. All these health issues meant we were walking on eggshells; hypervigilance was our norm.

Two weeks after Dad passed, we pivoted to my mother’s cancer surgeries, one after another, and then chemo, and then radiotherapy. So, I’m a seasoned ambulance passenger, a primed ER cubicle camper, a carer based in the UK.

Having been in many emergency situations, I’ve developed a process that works for us. It may help you, too. What worked was having one hospital go-bag for my parent and one for me. Each had its own purpose and essential contents.

I want you to have these, so you’re primed for an emergency. These are NOT random lists of items. They’re curated checklists I use to pack and repack what we need in these crises. Each item and action has a story.

For example, a water bottle and a plastic straw. It’s not easy to give someone water when they’re lying down on a hospital bed. It dribbles out the side of their mouth, making everything wet. One health assistant tried to be helpful by getting a paper straw from the nurses’ station. But after a short time, the straw became wet and mushy, making it impossible to drink. A plastic straw stays intact.

Every essential item has a purpose. These insights need to be shared.

[Disclaimer: This is based on personal experience; this is not medical advice. This information was previously shared via a link to a Podia site that has now been cancelled]

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Table of Contents

1. The Hospital Go-Bag

2. The Caregivers Go-Bag

3. Admission Checklist

4. Medical Information Summary Checklist

1. The Hospital Go-Bag for the Patient: Why I think you need this

Be prepared. Have a go bag to have one less worry in a crisis. It will give you some reassurance and a sense of control in a difficult situation.

The contents of this go bag are for a person who is ill and may be admitted to a hospital. It holds only the essentials because there’s limited space in hospital bedside cupboards. Visitors can bring/change items during visiting hours. Limit the number of items to reduce the stress of finding things.

The Checklist

Short-sleeved pyjamas for easy access to veins. A nightdress can easily bunch up, restrict movement in bed or make toileting more difficult.

✅ One change of clothes.

• Tops: Vests or T-shirts. A cardigan, or fleece jacket to wear or remove easily. Wear back to front if a cannula is in place.

• Bottoms: trousers, tapered ankles/jogger pants or pyjama bottoms. Tuck trouser legs into socks to avoid tripping/falling over, especially after toileting.

• Avoid bras, buttons or anything with metal in case a CT/MRI scan is needed.

✅ A warm dressing gown acts as a blanket over thin hospital blankets, and an overcoat in the ambulance.

✅ Bed socks with rubber grips on the soles are better than taking shoes or slippers on and off. Poor circulation can make feet cold at night. The grips can offer extra reassurance in bathrooms.

✅ Small towel & wash bag including

• phone charger.

• small bar of soap. Some hands don’t have the strength to squeeze bottles.

• a small face cloth,

• small travel-size toothpaste and manual toothbrush,

• earplugs (it’s noisy on a ward),

• pens, post-its,

✅ Their Phone with a paper copy of emergency contacts in the phone case.

✅ Wet Wipes to clean hands and face in bed, or bottoms after toileting.

✅ A half-empty tissue box or another long flat box can act as a handy container for spectacles, a notebook, a pen, face wipes, etc.

✅ Small bag of current medications and inhalers NOT full pack.

✅ A book or a puzzle book like Sudoku.

✅ Put a note, a photo of yourself, e.g. as a screensaver on the phone or a small letter to comfort your person/family member in the hospital.

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2. The Caregiver’s Go-Bag: Why I think you need this

Be prepared. Have a go bag to have one less worry in a crisis. It will give you some reassurance and a sense of control in a difficult situation.

Think of it as your essentials, utility bag.

The caregiver’s go bag contains the essentials you need during an emergency and for a long wait in an emergency department.

A rucksack with multiple compartments is best. A caregiver would carry this and the hospital go bag into an ambulance.

✅ Five paper handout copies of the essential patient reference documents:

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

• Medical history summary: highest priority conditions, last investigations, incl. CT, PET, MRI, endoscopy, colonoscopy, biopsy, and blood tests (haemoglobin, blood clotting factors, cancer markers). Be prepared to make clear statements of this to medics.

• Doctors names: PCP/GP and name of their practice, and specialists

• 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

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

  • UK: Advance Care Planning Link to Macmillan Cancer Support

✅ Small notebook and pens, to write everything down including the names of each person, doctor, nurse, health care assistant, each paramedic. Use names to personalise the conversation.

✅ Your phone: note taking, reference documents and reading.

• Access to emergency contacts and medical information

• Load your phone with a book and games

✅ A power pack with an inbuilt connector to avoid loose wires e.g. Powerpack to recharge your phone

✅ I DO NOT take headphones for my phone because I need to overhear everything people are saying, and listen out for symptoms changing.

✅ Protein bars and individually wrapped biscuits to avoid hypoglycaemia.

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

✅ Tissues and a small towel or a face cloth.

✅ Incontinence pad x 2, underwear, wet wipes, depending on your person’s needs, and your own if you’re on alert and don’t want to leave their side!

✅ Plastic trash bags for dirty clothes/waste that you’ll take home

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

✅ Face mask and hand sanitiser because you don’t want to get COVID or flu

✅ Cash for a taxi. Ride in the ambulance to the hospital. Have a local taxi company number to get home.

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

✅ Glasses and glasses case, artificial tears for dry eyes. Avoid wearing contact lenses.

✅ Lip balm, and chewing gum.

✅ A book you’ve already read, a puzzle book like Sudoku - something easy and familiar to pass the time, but not too distracting. You’ll be listening to the staff and the person you care for. Candy Crush works well!

✅ A box of aspirin and paracetamol for the carer/advocate, not the person being treated. It’s easier to have your own supply, especially if you have increasing symptoms, e.g. COVID, flu, headache

Go-Bag Tips

• Refresh the go bags every month. I do this with my mother as a reminder to both of us of how important it is and that we both know what’s inside the bag.

• Put it somewhere anyone can grab it to go

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3. Admission Checklist

Actions to take when your family member/friend has been admitted to the hospital through the emergency department.

Use this in conjunction with the Hospital Go Bag Checklist and Caregiver’s Go Bag Checklist.

The aim is to make the patient comfortable and ensure essentials are accessible, without unpacking everything in case the patient is moved unexpectedly.

✅ Your person’s shoes and coat take up space - take them home.

✅ Things to put within reach on the bedside table locker or over-bed table:

• The tissue-box container with tissues, spectacles, wet wipes and phone.

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

✅ 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.

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

✅ The change of clothes and wash bag are easily accessible IN the bag

✅ Give the medications to the nurse OR ensure a clear note of the usual medications has been taken.

• Medications are usually locked in a drawer

• Tell nursing staff what medication has/has not been taken that day.

• Check what medications are being given today.

✅ Check if your person needs the toilet before leaving

✅ Place the call button within their reach. Ensure it can’t fall outside the bed

✅ Ensure oxygen and any other lines are not tangled in sheets

✅ Ensure they are warm enough and comfortable. Leave the large scarf

✅ Check the name of the nurse on duty and inform them of any disabilities or additional support your person may need e.g. difficulties toileting, walking, drinking, swallowing or eating.

✅ Make sure medical staff have your contact details

✅ Note the nurse’s station telephone number, ask who is on duty tonight and tomorrow.

✅ Check visiting hours and the time doctors usually review patients.

Tips for the caregiver:

Contrary to popular opinion, when you get home, I’d advise burning off frustrations and adrenaline, as hospitalisations are stressful. Don’t crash into bed immediately. For example:

• Tidy up the bedroom post-paramedics, and prepare another go bag with a change of clothes, extra water and food.

• Call to update the most important person/friend/family member. Ask them to update others to help you communicate the news

• Hydrate and eat something (avoid alcohol and caffeine).

• Plan what you’ll do tomorrow: will you call the nurses first? Will you go to the hospital? At what time? Be mindful that your person may have additional scans or tests after the doctor has reviewed them.

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4. Medical Summary Checklist

Avoid missing key medical information when under stress or in an emergency by preparing a one-page reference summary.

Hand out copies to paramedics, doctors, and other medical staff. Make sure all the text is clear and easy to read.

Update the summary sheet with each new event, e.g. a medication change.

1. State the date to be clear it’s the latest edition.

2. At the top, put the person’s name and date of birth (principal identifiers) big, bold and clear

3. UK-based people need to include their NHS number near their name.

4. Home address

5. Insurance number and provider if relevant

6. Emergency contact

   • Name and relationship to the person

   • Mobile telephone number

7. Name of the GP/PCP practice where the person is registered

8. Name of the specialists, e.g. oncologist, cardiologist

9. Current medical summary:

   • Recent medical event: dates (admission, discharge), diagnosis, medication

   • Highest priority diagnosis: when the diagnosis was made, where, by whom, treatment name, dose and date prescribed

   • Repeat for other diagnoses in rank order of priority/impact

   • Any recent scans or investigations: date, type and result

   • Dates of recent immunisations, e.g. COVID, flu, shingles

   • Other symptoms, e.g. shortness of breath, pain (intensity, frequency, location, duration)

10. Disabilities that could impact their hospitalisation, care and comfort: mobility issues, difficulty dressing/undressing, difficulty toileting or eating.

11. Medication:

    • Note the information from each drug pack. The drug name and dose

    • The date it was started

    • How many pills are taken each time, the time of day, with/without food.

12. Allergies: Medication, food or other allergies e.g. plasters

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