Carer Mentor: Empathy & Inspiration

💬 Caregivers Who Are Parents: "Ask Us Anything"

Victoria — Fri, 03 Apr 2026 09:04:01 GMT

Hello, dear Friends, I’m Victoria. 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. ❤️

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

Caregivers who are parents.

At its core, Carer Mentor offers heartfelt empathy for Caregivers. The anthologies help us recognise the 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 is 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 introducing a new Carer Mentor collaboration project to facilitate more community connections and discussion.

Meet 12 caregivers who share how they’re caring for a child with special needs, a disability, a rare disease, autism, cancer or another health condition.

‘Caregiving As A Parent’ discussions will be on the first Friday of every month.
It’s in the form of a discussion thread for easy reference.

In the comments discussion “Ask The Team Anything”:

Victoria’s question to everyone:
“What do people get wrong about your caregiving as a parent?”
Share and reply to each other’s comments/questions
Feel free to explore ways to share, connect, and collaborate together.

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

The next ‘Caregiving As A Parent’ discussion will be on Friday, May 1st.

It will be hosted by Maria Messer at her “Holding Both” publication.

"My caregiving journey is a family healing journey" By Viva Mogi

Victoria — Thu, 02 Apr 2026 07:57:32 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here.

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 of Twenty-One Letters.

This Spring Season so far

Today’s ‘Letter from a Caregiver’ is by

I found this article by Viva last year and was inspired:

The Dream Wedding. On love, caregiving, and learning to choose joy without guilt.

“Our parents were loving and understanding when we told them we wanted to elope. That subtle distinction — making it about us, not all of us — meant everything. After years of caregiving for my mom, my dad told me, simply, to do what makes me happy. His blessing held a thousand unspoken lessons: he wanted us to live freely, joyfully, and without guilt. That’s also how I’ve learned to approach caregiving and it was time for me to live that way for myself.”

Viva has a beautiful way of articulating complex concepts about culture and caregiving, making them feel more accessible and relatable. While my view through the kaleidoscope of culture may not be exactly the same, the colours are very familiar.

Thank you for sharing your family’s story with us, Viva.

Author’s Bio: Viva Mogi is a policy strategist and community organizer based in California. Raised by Japanese immigrants, she is a caregiver to her mother living with Alzheimer’s — and writes about what that journey has taught her about culture, identity, and the systems we navigate along the way. She believes that better policy starts with stories like hers, and that the more honestly we share them, the more human our systems can become on her Substack, Care is a Strategy.

My caregiving journey is a family healing journey

Dear Viva,

It’s been a few years since Mom was diagnosed with Alzheimer’s. You’re still figuring things out — living away from home but spending more and more time thinking about coming back. About what it would mean. What it would cost. What it might give you.

There is a moment that will make the weight of that choice land differently. Mom gets shingles, and her case is so severe — sores in her mouth, close to her eyes — that she has to be hospitalized. Then placed in a short-term nursing facility until she’s strong enough to come home. So you take a week off work. Because just days in the hospital, she can no longer walk on her own. If she can walk, she can go home. But the staff here speak only English, and she refuses to engage with the physical therapist. So you show up every single day for five days. You bring food she likes. You sit with her. You encourage her, gently, firmly, patiently. And slowly, she makes progress.

She gets so weak so quickly now, and it is heartbreaking. Dad is exhausted — rightfully so — but no one else is there for any real stretch of time. An hour here and there. Not enough. You feel it leaving every time, that pull in your chest. Even when you go back home, there is no rest — just the heaviness of distance. You are beginning to understand what it means to care from afar, and the choice of whether to move back is pressing on you in a way that no longer feels abstract.

That moment — those five days — is the one where you will see it clearly: this is what she needs. And this might be what you’re stepping into.

You and Mom have always had something rare. A closeness that doesn’t come easily — especially between an Asian American daughter and an immigrant mother carrying the weight of an entire culture’s expectations on her shoulders. And yours. You know what’s expected of a good Asian daughter. You’ve always known. The success, the marriage, the children. The caregiving, when that time comes. You are not the exception to any of it.

“Isn’t it so wonderful you had at least one daughter?”

You will hear this from parents’ friends — said casually, warmly even — throughout the caregiving years. And you will understand, in a way you never quite had words for before, that this was never just an obligation or an expectation. For some, it is the reason you were born. Hold that. Sit with it. Let yourself feel whatever it makes you feel.

Right now, you’re in your early thirties and trying to figure out how to date — in this impossible era of apps and algorithms — while knowing you might want to move home to care for mom. How do you explain that on a third date? You’ve started wondering if it’s even worth trying. The cultural and biological clock is still ticking, and unlike the men you meet, you feel every second of it.

I want you to know: those feelings are real. The exhaustion of carrying cultural expectation and grief and logistical complexity all at once — that is real. But there’s something you can’t see yet that I want to tell you.

You are about to learn things about yourself, your family, and your culture that you could never have learned any other way.

Caregiving in America means talking about money. It means sitting across from your parents — people who hid the will like a family secret — and asking them to be your teammates instead of just your parents. It means your father will say, “Just deal with it when I’m gone.” He will say this more than once. And it will frustrate you deeply, because you will know what “just deal with it” actually costs. Everything takes six months. The government systems take six months. Convincing your parents to share information takes six months. Plan for that. Give yourself grace inside that timeline.

With a family like ours, where money is never discussed, you will often feel like a bank account. It will weigh on you. It will make you deeply sad — that all the work you did to build financial freedom pulls you back into something familiar and painful. Two hardworking immigrant parents who had some retirement, but not enough for what caregiving truly asks. You will carry that too.

Respecting elders and setting boundaries are not opposites. You are about to live the proof of that.

Boundaries with Asian parents — yes, it will absolutely be a thing. Hard-won and worth every uncomfortable conversation. You will learn to hold both love and firmness in the same hands. Your relationship with your parents will become one of the most important and complex of your life. It will ask everything of you. It will also give back in ways you didn’t know you needed.

You are not alone in this. Many cultures carry this quietly. And there will be something unexpected in hiring Japanese-speaking caregivers — in surrounding your mother with familiar language and familiar things. It will bring you back to your own childhood. Saturday Japanese school. The strict rules and gruelling hours you resented then. But here, in these caregiving years, those lessons resurface as gifts. You will speak the language with her. You will feel the thread of responsibility that was placed on you even as a child — and you will begin to see it differently. Not as a burden you were handed, but as something that shaped you into the person who shows up. Who doesn’t run. Who stays.

Is it unfair? Yes. Did you ever run away? No. That is all you. Rather than flattening your experience into “caregiving is hard,” you’ll learn the full complexity of your story. And that story has a lot of value — for you, and for others who need to hear it.

The caregiving journey will crack open old wounds — generational ones, not just your own. You will find yourself in the middle of something bigger than you planned for. Trauma surfaces in unexpected moments. But each difficult incident will be a small act of healing, for your family line and for yourself.

There will be moments you want to walk away from all of it. And there will be moments when a friend says, "I could never do what you do," and instead of feeling seen, you feel the full weight of what you're carrying. It's a lot. It is a lot. But rather than disappearing into that weight or feeling sorry for yourself — and you could, and no one would blame you — you found something that helped you keep going. A network. People who understood. That's what sustains us. Not toughness. Not obligation alone. Community.

Keep the therapist — and you do. Keep going to the support groups. Keep sharing your story. That is how caregiving becomes something we can hold with care, rather than something that breaks us. Breaking cycles isn’t what you signed up for. But it will heal you.

My caregiving journey is a family healing journey.

And about the life you want — the partner, the family, the career — all of it: it doesn’t disappear. It doesn’t get canceled by caregiving. It happens alongside it, slowly and in pieces, shaped differently than you imagined.

Everything you are doing, you are doing amazingly. Be so proud of yourself. Give yourself so much love — because anxiety will take over, and love is how you ease its grip on the uncertainty. The only thing I wish I could reach back and say, the one real thing:

“Move home as soon as you can. Not because it will be easy. But because the life you want is already taking shape there, quietly, without your knowing.”

He is there. Minutes from mom and dad’s house. He will love you fully — all of you, including the parts that are tired and conflicted and fiercely, stubbornly devoted to your family. He will not see the caregiving as a complication. He will see you.

Life will not go as planned. It never does. But it will happen — the partner, the family, the work that matters — slowly enough that you can carry it all.

In the end, I just wanted to see you happier sooner. But it’s okay. The love and happiness that come will be cherished all the more for arriving when they did. More to be grateful for. It was all meant to be this way.

Thank you for showing up. For not hiding from what was expected — for embracing it, in your own way, in your own style. With commitment, love, and so much thought. You are still you through all of it. Through the chaos, the grief, the hard conversations, the long drives home.

You're not strong because you're a good Asian daughter. You're not strong because culture wrote that role for you before you could choose it. Every step you've taken, every hard thing you've walked through — that's the muscle you built. Slowly, without always knowing it. Not because you were born into a script, but because every day you decided to show up.

Care isn’t something we simply have. It’s something we build — quietly, daily, imperfectly. That is what caregiving taught you. And that belongs to you.

I am proud of you. Be proud of yourself.

With so much love and hard-earned patience,

Viva

1. Moving through fear or uncertainty

I remind myself that 80% of caregiving is unknown. We can’t truly predict what comes next — and even when we’ve done everything we can to prepare, it still might not be enough. So I take a breath. Literally. I believe deeply in calming the nervous system before engaging with the fear, and it starts there — with a deep breath. And more often than not, I come right back to that same truth: I’ve done what I can. That has to be enough for today.

2. Three qualities I admire

Listening — really listening, not just waiting to respond. Being kind to yourself and to others, in equal measure. And starting the day by telling yourself, and the people around you, that today is going to be a good day. It sounds simple. It isn’t.

3. Quote / book / film that’s inspired you

Trevor Noah’s Born a Crime. It’s genuinely funny — and underneath the humor is something that stays with you. He wasn’t born a criminal. He was told he was, by communities and systems designed to make him smaller. That distinction matters. When you can see how stories get assigned to people rather than chosen by them, it changes how you move through the world. It makes you more human to others — and, I think, to yourself. Perhaps then, we can truly see people shine the way they were always meant to.

Prompt for discussion:

“What’s one thing caregiving has taught you about yourself that you couldn’t have learned any other way? Share in the comments — I’d love to hear your story.”

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March Roundup: "Shifts, cracks of light and networking empathy together."

Victoria — Thu, 26 Mar 2026 09:31:11 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here! You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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.

Subscribe now

Shifts, cracks of light and networking empathy together.

For the last couple of years, maybe three, December to February first, has always felt like a denser cocoon. Steeped in memories, losses, grief, and that frustrated feeling of knowing you chose one path but still envy others on the other. Heavy and melancholic, the seed husk is hard to crack from the inside.

Yet, from February into March, something shifts. Not one big thing. But a tiny speck. Like a dust mote dancing to catch my attention. So I pause. My perspective changes. From the dark mote to the surrounding light, I can relax into a broader frame.

Lighter notes have found a way in. So there must’ve been some melancholic relief along the way. Because here we are near the end of March, and things feel clearer and brighter.

Shifts and movement signal that new growth or change is afoot. The lumens of light are amped up, and you can almost hear nature’s cheer! There are small spurts of ideas. The potential to build and network more empathy, together.

I’ve curated a new anthology, ‘Eldercare/Caring for Parents’—a deeper dive into this type of caregiving.

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. Phew! For those of us who are single and childless, I recommend reading ’s article, “Who will look after me when I’m older?” Her last words keep lingering in my mind:

The question isn’t: “Who will look after me when I’m older?” anymore. It’s “How do we look after each other?”

How do we look after each other, at any age?

As I connect with various caregivers, I’m exploring how we can delve deeper into the different types of caregiving to better understand specific experiences.

Caregiving for someone who has health issues or a disability is 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 and other types of caregiving.

So, I’m introducing a new Carer Mentor collaboration project to facilitate more community connections and discussion. The Carer Mentor Community Hub will host a discussion thread:

“Caregiving as a parent” on Friday, April 3rd.

Meet eleven caregivers who are part of this collaboration. Join in the “Ask us anything” about caring for a child with special needs, a disability, rare disease, autism, cancer or another health condition.

‘Caregiving as a Parent’ will be on the first Friday of every month.
It’s in the form of a discussion thread for easy reference.

I’ll start other collaborations for other types of caregiving soon-ish. Curiously exploring, sharing and networking empathy together.

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Whether things feel heavy or light for you right now, I hope something in the ComfortZone section of Carer Mentor gives you some mental respite and soulful resonance.

Don’t forget that UK clocks move forward this coming Sunday, 29 March 2026. At 01:00 GMT, the clocks will move to 02:00 British Summer Time (BST).

An appropriate period to pause, recalibrate and exhale into a broader frame of reference, together.

A short poem of pause: Holding space to hear the music

Text within this block will maintain its original spacing when published

Holding space.

The rests between 
....the notes of doing
holding breath and mind
pause. Uncertainty may tip to angst
But still.

I hold space gently
without expectation or fear.
Letting go.

Heal the space... 
...   exhale the moment

Move through... the phrase
to hear the music.

‘The Letters from a Caregiver’ Spring Season collaboration continues.

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

Apologies, there was no letter on Thursday, 19th March or today, 26th March. Life happens. The next letter will be published on April 2nd.

Growing Anthologies of Diverse Experiences

I’ve built a new anthology focusing on caring for your parents, or older family or friends who have chronic health issues or an increased need for care support due to declining health, mental capacity, or physical frailty.

Explore the anthology: Eldercare / Caring For Parents.

A few of the articles included in the anthology:

Priming for an emergency: What You Need to Know Before an Unexpected Hospital Trip includes a free download of checklists. by Victoria
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 I highly recommend watching the videos. Put yourself in the shoes of the 80-year-old lady.
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 Adrian Chung
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

Explore more articles in the anthology.

Other Anthologies updated over the last month:

ComfortZone article

#12, This Caregiver’s March Watchlist: “Connections, grief and love”

I share some gems I discovered:

March 20th, I found “The Curiosity Shop”, a new podcast with Brené Brown and Adam Grant

“In the inaugural episode, Brené and Adam discuss how a public disagreement about authenticity almost ended their relationship before it began.”

March 22nd, I found the new episode of ‘All There Is’ where Sara Bareilles debuts ‘Home,’ a new song about grief inspired by Anderson Cooper and Stephen Colbert. This episode aired March 20, 2026. Tissues required.

I recommend exploring “All There Is” with Anderson Cooper, “Talking Grief. Building Community” on YouTube, and the other recommendations in the March ComfortZone watchlist.

Don’t forget to join the discussion thread: “Caregiving as a parent” on Friday, April 3rd.

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Three Seasons of 'Letters from a Caregiver'

Victoria — Tue, 24 Mar 2026 08:40:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why

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 21 letters.

The Autumn 2025 Letters from a Caregiver Series:

The Winter Season 2025/6

The Winter Season of ‘Letters from a Caregiver.’ Life’s Tapestry: the nuances, choices, and caregiving despite the fear. By Victoria
‘You Each Deserve Your Own Life’ By
‘Relearning Hope In A Time Of Darkeness’ By Victoria
‘Having Compassion for Your Earlier Self’ By
“Grasshopper, you are the expert” By
‘You Published Your Book! And Now What?’ By
‘The Light We Carry’ By Victoria
‘It’s Not Her, It’s The Disease’ By
‘The Gift Of Self-Compassion For The Caregiver’, By
“When the Waves Keep Coming: Trust Yourself” By
“The Hardest Decision You Ever Made Was the Right One” By

The Spring Season 2026

This Spring Season so far

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

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

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

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An Anthology: Eldercare / Caring For Parents

Victoria — Sat, 21 Mar 2026 18:15:00 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here! You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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

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.

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
Table of Contents

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
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

Table of Contents

Aligning on priorities together

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

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.”

Table of Contents

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

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

Table of Contents

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.

Table of Contents

Care support: orchestrating support at home

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.
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’.
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

Table of Contents

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

Table of Contents

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

Table of Contents

After your parent, family member, or friend has passed

UK information

US information

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.

Table of Contents

Support organisations and book recommendations

This book list includes dementia and caregiving books

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

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#12 This Caregiver's March Watchlist: "Connections, grief and love"

Sat, 21 Mar 2026 12:50:13 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here! You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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 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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Dear Friends, these are the recent gems I’ve found that felt satisfying. When you’ve limited watch time, you want to know you’ve solid go-tos. Enjoy!

The Curiosity Shop. March 19 2026.

“Welcome to The Curiosity Shop! In the inaugural episode, Brené and Adam discuss how a public disagreement about authenticity almost ended their relationship before it began. For the first time, they discuss where they went wrong, why they changed their minds about each other, and what they learned about repair and trust. They also explore what healthy authenticity looks like, and dive into the many things they may still never fully see eye to eye on – from email vs. texting to remote work to faith.”

At 53min36

“Adam Grant: I love the way you just reframe that as as complex simplicity. That’s a great paradox.
Brené Brown: But complex simplicity is why metaphor and story and analogy to say take something complex and then put it in a dimension that people understand.
Adam: Poetry too. And this is why we’re doing this show. Like the the curiosity shop is all about trying to reach complex simplicity in a world that wants easy answers and quick fixes and consumes way too much snake oil.”

At 39:12 Brené: I’m just blown away by the application of your rigor, the same application of your rigor around organizational and behavioral science to becoming a better person.

The episodes Brené mentions in The Curiosity Shop

“Apologising and repairing what was off” Apologise and Repair.

Brené Brown Unlocking Us Podcast. May 8, 2020.

This is the first episode of two-part special based on a course that Dr. Harriet Lerner and I did together on her groundbreaking book Why Won’t You Apologize?: Healing Big Betrayals and Everyday Hurts. It’s an authentic, hard conversation about making mistakes, healing hurts, and being brave. Harriet is a friend, mentor, and teacher. Her work has shaped my career and made my life better. During a time of deep uncertainty and anxiety — when many of us have struggled to be our best selves all of the time — apologizing has never been more important.

“All There Is” with Anderson Cooper.

“Talking Grief. Building Community” Watch on the CNN website or on YouTube.

I recommend exploring the episodes on YouTube and reading the comments

“Grief can feel so lonely but talking about it and listening to others share their experiences helps. In all new episodes of this award-winning podcast, Anderson Cooper continues his deeply personal exploration of grief in all its complexities. In moving and honest discussions, he learns from others who have faced life-altering losses. Join the community to share your story and watch Anderson's weekly streaming show All There Is Live at cnn.com/allthereis” - as seen on YouTube

Sara Bareilles debuts ‘Home,’ a new song about grief inspired by Anderson Cooper and Stephen Colbert. March 20, 2026

“In a new song "Home" that Sara wrote after listening to Anderson’s talk with Stephen Colbert, she sings, "What is broken cannot heal 'till it's known and loved by name." In this moving conversation she shares "Home" for the first time and talks with Anderson about the "medicinal" nature of sharing one's grief with others.”

They also talk about the song Sara did with Brandi Carlile for the film “Come see me in the good light”, called “Salt Then Sour Then Sweet”

Andrea Gibson + Megan Falley. It's Ok to Ask Questions (S3:E1) June 1 2025

“Matthew Rodrigues interviews non-binary spoken word poet Andrea Gibson and their wife, writer Megan Falley, about how Andrea’s terminal cancer diagnosis has transformed their love and life. The couple speaks candidly about how facing mortality has deepened their connection, stripped away the unnecessary, and brought a new clarity to what truly matters. With tenderness and honesty, they reflect on the beauty, grief, and presence that now shape their relationship and creative work.”

I highly recommend watching “Come see me in the good light” on AppleTV.

Emma Thompson Breaks Down Her Most Iconic Characters (9 December 2025)

“We served Olivia Colman & Benedict Cumberbatch a FEAST! “The Dish Podcast.

Interviews over food and drink! Beware you will get hungry. Watch the ones with Tom Holland, Keira Knightly and Jennifer Garner - the Yorkshire Pudding blew her mind!

These videos are a little addictive because they’re funny and less formal compared to other podcasts.

Calling all food lovers! Join Nick Grimshaw and Michelin star chef Angela Hartnett for weekly servings of hilarious, unfiltered chat with celebrity guests, and a feast of foodie tips. New full-length video episodes every Wednesday! Listen wherever you get your podcasts. Brought to you by Waitrose & Partners and Cold Glass Productions.

The Skin Deep

I recently discovered The Skin Deep.

“The Skin Deep is your source for the best relationship card games in the world. The only Emmy-award winning relationship card game company and creators of {THE AND}, Kidulting, and Honest X conversation card games. Explore your relationships including friendship, dating, marriage, intimacy, work and human connection.

Our videos illuminate human relationships - couples, family, friends, coworkers, strangers and more. We celebrate and amplify real connections in increasingly disconnected world by capturing genuine, heartfelt conversations between two people.”

Buy Our Card Games
Subscribe to get your regular does of humanity

This was so touching.

Mar 1, 2026 Gonzalo (he/him) & Berlin (she/her) play {THE AND} Family Edition and reflect on what it means to grow up together as father and daughter. In this heartfelt conversation, they talk about becoming a parent, learning through mistakes, letting go of control, and finding balance between protection and independence. Together, they explore identity, trust, vulnerability, and how their biggest lessons came from each other.

A couple that has each other’s back

Keisha (she/her) & Andrew (he/him) return for their 8th {THE AND} conversation, playing the Couples Edition once again. As longtime community favorites, we’ve followed their relationship across more than a decade of conversations, witnessing how their partnership continues to evolve through love, loss, creativity, and now parenthood.

In this episode, they reflect on navigating conflict without disconnection, balancing time and emotional energy as parents of two, and how humor helps them stay close when things feel heavy. Together, they share what it means to grow side by side, honor their different upbringings, and keep choosing each other through a season that asks more from both of them.

For Giggles

Carisa Hendrix & Lucy Darling

Well if the shoe fits - Lucy Darling the persona and performer in action
The Behind the Scenes - Carisa Hendrix the person and backstory
The Origins of Lucy - Carisa talks through the evolution of the persona. How she trained her voice was intriguing.

ComfortZone #11 This Caregiver’s Music is updated

I just added a new playlist to this ComfortZone article, called “Small Wins Confident.” If you haven’t heard the two big songs from KPop Demon Hunters I recommend going over to listen to the first two songs on the playlist.

Have a great day!

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"Grace, belatedly..…Becoming the daughter she needed" By Sarah Bain

Victoria — Thu, 12 Mar 2026 09:58:19 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

I’m Victoria. 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. ❤️

You can read about why I started Carer Mentor: Empathy and Inspiration here.

Two new essential articles:

I recommend using the quick-start navigation guide to explore the website.
Downloadable essentials, a FREE 🎁 for you, What You Need to Know Before an Unexpected Hospital Trip. So you can benefit from my numerous ER trips.

You’re not alone

Letters from a Caregiver.

There are two previous seasons of Twenty-One Letters.

This Spring Season so far

“Misunderstood, and everyone has an opinion,” By Victoria
“What It Takes To Embrace the Life He Has “ By
“The Long Road Home for a Different Kind of Future” By Haley Haddow

Today’s ‘Letter from a Caregiver’ is by Sarah Bain

Thank you, Sarah, for sharing your reflections so openly with us.

As Sarah and I prepared this piece for publication, we exchanged thoughts on how writing to our younger selves enables us to dig deeper into the motivations behind what drives/drove our caregiving. When we’re in the swirl of unpredictable caregiving, we can’t always see how past threads have been woven together to influence our choices.

“Writing this letter was more cathartic than I expected, and I really felt as if I tapped into a part of myself that still needed to be heard. I needed to offer myself more grace and be less hard on myself, and I think this letter has helped me do that.” - Sarah Bain

I recommend reading these other articles by Sarah:

Author’s Bio: Sarah Bain is a writer and thanatology student living in Spokane, Washington with her dog, two cats, and husband. She walks four to seven miles a day, loves a good nap, and thinks often about normalizing conversations around death, dying, and grief. She is both an orphan and a mother of four — one who left too soon, and three who still walk this planet. You can follow her on Substack at A Container For My Thoughts and on Instagram, where she's still figuring out what she's actually writing about.

Grace, Belatedly…Becoming the daughter she needed

Dear past Sarah,

I remember the day and month so well. On January 7, 2024, the call came after 10:30 pm from your mother’s cell phone. Only it wasn’t your mother who was calling. It was her friend, and as soon as you heard her voice you knew right away that something was wrong. You’ve felt that before in the way that a person responds on the other end of the phone when you say hello—the way that the inflection of her voice makes you slide down against the wall and fall to the floor because something is so very wrong.

Sarah, it’s Pat. And it’s not good.

That time and space between the 10:30 p.m. call and 10:30 a.m. the next morning when you walked into the hospital room, 1,200 miles from where you live, are blurry. But look at the strength you had in making the phone calls to your brothers in the middle of the night, packing your clothes and your work laptop, buying the one-way plane ticket and flying from Washington state to Southern California. Saying goodbye to your husband, and your fourth child, the only one left at home still who was a senior in high school. You didn’t know on that January day that you’d miss so much of his senior year, and it’s probably better that you didn’t know.

Twelve hours between departure and arrival. So much can change in twelve hours. So much can change with a moment’s notice. But you already know all this. That’s why you are so good with how quickly things can change. Because they can change, and they do change.

I still see that version of you in 2024. I want you to know that I see you, and I see the exhaustion, the fear, the worry, and the inability to self-regulate. I want to tell you that no matter how overwhelmed you are, everything you are doing makes a difference. No matter how complicated the relationship is with your mother, no matter how fraught it is with angst and worry, you will do and have done everything in your power to make her final months on this earth as beautiful as possible.

When you repeated the phrase to yourself over and over again silently in your head, I heard you.

Even though my mother could not be the kind of mother I needed her to be, I can be the kind of daughter she needs me to be right now.

I know that you repeated that phrase on a daily basis, like a mantra, to remind you to stay present, to keep showing up, to be there for her no matter how terrified she was of the journey.

Sarah, I wish I could tell you to believe in yourself in the way that others who love you believe in you. Because you hold a kind of strength and resilience that many others don’t have. This period of eight months of caring for your mother will be some of the most exhausting months of your life. You will lose so much of yourself in the process, but I promise that you will eventually return to yourself again.

Flying back and forth from Washington to California on a monthly basis while still working remotely and trying to be present for your son’s senior year of high school is incredibly challenging. Still, you will continue to do it.

It will not be lost on you that somehow your mother’s diagnosis of pancreatic cancer will be a gift of sorts because as soon as the doctor tells your family she has six to twelve months, the first thing you think is: Thank god that I will be able to say goodbye. You will remember that you didn’t get to say goodbye to your father or your daughter when they died—your father when you were five years old and your daughter at birth. That feeling is something that will stay with you for the rest of your life. So being able to say goodbye to your mother does feel like some kind of gift even if the cost of it is a kind of caregiver’s exhaustion that is impossible to describe. Only your bones can understand.

I want to tell you that the exhaustion you feel will eventually go away. It will take time, a lot of time to rest and recover, and you will lose things you didn’t expect to lose along the way: your uterus, your job, your dog, for starters. You will find yourself changed in ways that you can’t even really describe to anyone let alone to yourself. The you that loved to go out with friends and to show up at parties will disappear—and I don’t know if she’ll return or not, but that’s okay. I think that version of you was actually someone just trying so often to be the kind of person you thought your mother wanted you to be. You don’t have to be anyone you don’t want to be anymore.

I remember this period of time for you because I am your future memory of things you are already starting to forget in your past. Except that I don’t really want you to forget some of the things you’d rather not remember. When we forget the past, we forget the resilience and strength we have grown over time. And you have grown.

Here is the thing about those eight months: despite the difficulty of all of the roles you had to take on, you did it because you knew the alternative was worse. You’ve lived the experience of being unable to say goodbye—to your father when you were five, to your daughter at birth. You know what it is to lose someone without ever getting to say I’m sorry I couldn’t save you, because you know as a mother that saving your child is the thing you would do above all else.

You will say goodbye to your mother—you will crawl into bed with her and hold her as she dies. You will tell her that you love her. And you will continue to love others without ever knowing who will die next.

And that’s okay. Because despite the uncertainty, despite the fact that someone you love will die, and despite the fact that it hurts more than anything when they go, you will rise up again in the morning to learn how to love over and over again for the rest of your life.

Until your time has come.

By Sarah Bain

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
Caregiving is exhausting and all-consuming, so during times of uncertainty, I find myself closing my eyes and breathing deeply. Three breaths — inhaling, holding, releasing. And reminding myself that this, too, is temporary. Everything is. When I open my eyes again, I look for the beauty and the light, because it's always there, especially in the darkness.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
I admire so many different people that it’s hard to imagine just one person, but the things I admire the most in someone are generally things that I am striving to be better at or have more of. So, I love incredibly patient people because I can be known to be very impatient. I always wish for more patience. I also love people who are humble. Humble curiosity is something I strive for each day in everything I do. Finally, I love really smart people who teach me something about the world. I surround myself with persons smarter than me so I can continue to learn. I’m so lucky to be able to have these people in my life.
What’s one quote/movie/book that’s inspired you?
I recently read Raising Hare, by Chloe Dalton and it’s one of the most beautiful meditations on life that I have read in a really long time. I have bought loaned out my book multiple times to whoever will read it.
“She has taught me patience. And as someone who has made their living through words, she has made me consider the dignity and persuasiveness of silence.”
― Chloe Dalton, from Raising Hare: A Memoir

Prompt for discussion:

Writing this letter was more cathartic than I expected, and I really felt as if I tapped into a part of myself that still needed to be heard. I needed to offer myself more grace and be less hard on myself, and I think this letter has helped me do that. So I’ll ask you the same: What do you need to forgive yourself for?

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What You Need to Know Before an Unexpected Hospital Trip

Victoria — Sat, 07 Mar 2026 11:19:26 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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

You’ll find this article and growing ‘navigation’ articles in the Community Hub:

What You Need to Know Before an Unexpected Hospital Trip

Have you called for paramedics before? What happened the first time you dialled for emergency services when there was a crisis concerning the person you care for? What did you grab? Did you go in the ambulance? How long were you in the emergency department/accident and emergency department?

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.

If you’ve cared for someone with congestive heart failure and compounding health issues, you’ll know how tricky things can be. We had to figure out what to do with what circumstances, what worked for Dad, and how to recognise when things were escalating.

This untrained, non-medical carer took the lead in emergencies time and again through trial and error. An emergency doesn’t start when you pick up the phone; it starts when you sense, very literally, that something is wrong. Do you, don’t you call for paramedics? A loud crash and thump is a faster 0 to 100% adrenaline and call compared to trying to decipher a nuanced change when they’re already very weak.

The hardest, most heartbreaking moments were having to argue with Dad about calling for the paramedics. He didn’t want to go to the hospital, and we didn’t want him admitted to that hospital either, but some events require hospital intervention.1

I’m sure there are people curiously wondering, ‘Why can’t you just pick up the phone and get the ambulance?’ The shortest answer is that nothing is that simple, cut and dry, explicit or easy to decipher. Will the symptoms subside and calm after…how many minutes, a few, an hour? When do you counter someone’s wishes? Having vascular dementia doesn’t automatically switch off their mental capacity, nor would I want it to! So, here in the UK, as attorneys of Dad’s Health and Welfare, we always acted per his wishes (the Lasting Powers of Attorney (LPA) for Health and Welfare). So, how do you decide whether to call the paramedics at 1 am, when someone can still express their wishes and has mental capacity? I can only recommend starting to discuss ‘wishes’ now, getting the paperwork done, and seeking advice from a doctor/expert. There is no cookie-cutter answer. Sorry! For example:

UK - When to call 999 and what happens in the call.
US - The American Heart Association - when to call 911
Canada - Heart and Stroke Foundation of Canada When to call 911 Emergency signs

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.

The shortest wait time in the emergency department was 6-8 hours with a subsequent discharge home. The longest was from 3 am to my Dad’s admission to a ward around 4 pm. And that was only the start of that hospitalisation journey.

Contrary to popular belief, a carer’s work doesn’t end at the door of a hospital. When the comfortable care routine is lost to a crisis, we suddenly have to dial UP our roles as the shield, the buffer, the translator, and the advocate for our loved one, their needs, their rights, AND our own!

Reclaiming some control in an emergency: 2 Go-Bags and a To-Do list once admitted

Having been in many emergency situations, we’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.

The aim: to keep us comfortable for 8-12 hours, or longer if absolutely needed; to be ready for admission.

The benefit: I know the bags are always ready, primed for grab-and-go. A piece of control and calm amidst the escalating crisis. Something I can literally cling to when I’m having PTSD flashbacks of every previous ambulance trip, and walking that same hospital corridor.

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Click here to sign up to receive “Go-Bag and Admission Checklists.” This contains 3 checklists that you can download for free using this link

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.

I recommend reading each checklist in detail to see how they link together.

Next steps

After reading the checklists, please comment below. What are your learnings from an emergency situation? What questions do you have?
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Dad was palliative but not labelled with ‘end-of-life’, meaning all medical treatment was aimed at making him comfortable and stable. Aligning on which actions will be taken in specific circumstances, with your doctor's support, can relieve a lot of the angst and stress. For the majority of paramedic calls, Dad had to be admitted to the hospital (2015 - 2019). However, in the second half of 2019, we discussed how and when paramedics might stabilise his heart, then check with the on-call doctor, and support our collective decision for Dad to remain at home. Ask the questions and walk through the ‘what happens when’ step-by-step actions so you can communicate effectively with the paramedics/doctors and advocate for your loved one’s wishes, under pressure.

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

Victoria — Thu, 05 Mar 2026 08:53:44 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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

Every caregiver’s experience is given space to breathe and gently connect. Empathy and inspiration unfold, offered and shared. No one stands alone here.

Letters from a Caregiver.

There are two previous seasons of Twenty-Two Letters.

This Spring Season so far

“Misunderstood, and everyone has an opinion,” By Victoria
“What It Takes To Embrace the Life He Has “ By

Today’s letter is by Haley Haddow

I met Haley around November, 2025 and was drawn to her writing. She manages to capture the deeper essence of a moment, the flow of actions, and shifting emotions. Perhaps the patience and creativity she used as an award-winning glass artist have allowed her to bottle her magic onto the page.

It’s why I love the words she’s used in her own author’s bio: “she shares her own and others’ stories to illuminate what so often goes unseen.”

While our rollercoasters are different, I feel a deep resonance with the last paragraphs of her letter. Some decisions are made, not because of choosing between options, but because of a “fierce clarity.”

Thank you, Haley, for sharing your ‘path of becoming’.

I recommend reading these other articles by Haley:

“My Fairy Godmother Called Today. So here I am, and here I start”
“The Other Side of Caring “You failed him. And you’ve failed us.””
And one of my favourites is “The Sunflower Lanyard Max had been seen. He had been capable. He had been useful and ...just simply included.” because she’s shared such a great moment, I guffawed, and like Haley, I had brain-whiplash, mentally checking “what just happened!?!”

Author’s Bio: In her early twenties, Haley followed her passion for adventure and travel by living as an expat in the United Arab Emirates. Later, returning married and expecting her first child, she established a glass art studio. She relocated to the UK when her second child was diagnosed with autism and is now his full-time carer, placing her career as a glass artist on hold. She has come to understand that while people often see strength in caregivers, they rarely see the interior world. Through “Thousands of Us”, she shares her own and others’ stories to illuminate what so often goes unseen.

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

Dear Haley of January 2013

Its thirteen years in the future, and I want you to know.

You did it. All by yourself.

And despite everything, and there’s been a lot.. you were right.

Your intuition spoke and you listened. It was the right choice. It was the only choice.

Thirteen years ago, your seven-year-old baby girl was sitting in the backseat of your cream SUV, the engine humming softly, idling under the carport. Waiting.

You remember it like it was yesterday as it resides quietly in the folds of your memories.

Her little face was so pale, eyes wide with confusion. Despite your best efforts to explain, an aura of bewilderment clung to her. Too young to fully absorb events, but old enough to know the only life she’d ever lived was over. Her childhood of playing in perfectly manicured hotel gardens and poolside parties was no more.

You knew her heart was broken leaving her best friend, Jaimie, only three days younger. She broke yours telling you, “she’s my bestest best friend, Mummy.”

And Max, sat next to his sister, his huge brown eyes gazing innocently out of the window, unaware of his disability and its impact on the family.

You think of the preceding year, the truths that arrived quietly, settling in your bones with a quiet knowing. They sat beside you at the edge of the bed at 3 am, or while brushing your teeth, until that morning when you looked in the mirror and were finally brave enough to say them out loud:

Something is wrong.

My child needs more. Much more.

The delay in speech, the behaviour, the meltdowns.

You breathed out. You processed. You took control.

Bravely.

And so it began.

There were countless hours lost in research online, sitting at the dining room table in search of a solution to something you barely grasped. Aware you were in uncharted territory, unaware that the journey was less about finding an answer and more about learning to navigate the unknown.

Then, there was a breakthrough.

A specialist center in the city.

You signed up to a six-month waiting list. When you got the call, you drove the three-hour round trip alone, across a stretch of endless thin grey ribbon of road through the desert, your eyes fixed ahead on the broken white lines. Occasionally you’d glance in the rearview mirror at your little man, so cute, so vulnerable, sitting in his car seat, his innocent face perfectly framed.

Week after week after week.

Your life became awash with reams of paperwork, a battery of questions on developmental history and behavioural observation tests.

And then.

You did not expect the word that followed to rearrange the architecture of your life.

Autism.

It did not arrive gently. It did not arrive as a whisper. It arrived in full detail within a forty-page final diagnosis report. Clinical, bound, definitive, and yet somehow still unable to capture the little boy you know, who is beautiful, sunshine, cheekiness and noise.

New terminology is introduced to you that in future will become your second language:

Challenging behaviour, significant problems with social interactions and communication, speech, language and occupational therapy.

You met with a friend over coffee. She looked at you and said, “I think you have to go home.”

The weight of her words echoed a truth you had already known.

You nodded with a quiet calm, and just like that, the decision was sealed.

You had to leave. There was no other way.

Three suitcases in the boot. Two children in the back. That was it. An expat life of eight years, three months, two days reduced to weight limits and zipped compartments.

In the distance, the prayer call rose across the morning air. After months of organizing, planning, justifying, and explaining, you finally let yourself feel it..the first pang of sadness. Yes, this is real.

You remember the leaving party clearly. Outside on the marina, everyone had lit Chinese lanterns, each making a wish for your son, holding light in their hands for his path, for your strength, for the unknown future. They fluttered and climbed into the darkest blue night sky above the Indian Ocean until they became small little beacons of light.. of hope.

What a journey.

But listen carefully, because you need to know what you couldn’t know then.

Do not allow doubt. Sadness, of course.. but there is a difference. Learn that difference. It will save you later.

Back home in the UK, the first months will be brutal. Like really.

You’ve done your research, gathered your paperwork, and been warned by friends to be battle-ready.

You hit the ground running…hard.

It will be a brutal reckoning. You have returned to a special education needs system that is overwhelmed, underfunded and understaffed. 4,000 miles away in the UAE your son was treated like an anomaly, a quirk, a freak, a deviation from the “norm”. Back home he is one of many.. the enormity of the irony will not escape you.

But listen, you are not weak for the times you cry in the shower, at the traffic lights, in the park, or at the kitchen sink. You are not failing when you are tired of being strong. And I know you are so tired.

After four months, you secure a school placement, a hard-won victory. You shake your head in disbelief when told how fast that is. They did not see the sleepless nights, the letters, the emails, the calls, the tenacity to never give up, even through hell. It feels less like a process and more like a siege. When you come up for air, you will be exhausted… and this is just the beginning.

But.

Kindness will find you, and not always where you expect it. You will learn that systems are frustrating, bureaucratic, and flawed…. but people, people can be extraordinary.

And you.

Yes, you will make mistakes. Some you will replay at night like courtroom evidence against yourself. Forgive yourself faster. Remember that you are the woman who stayed in the arena. No kidding Brene!

You will learn to advocate like you breathe and discover in yourself a relentless mode of resilience. You have already done so much with so little that one day you will realise you can do anything with nothing. Let that sink in.

You are not behind. You move forward every day even if you cannot see it. Have faith.

You cannot re-write your story, but you can honour it and tell it. One day someone else will stand where you are standing, and they will need proof that choosing the hard road, is still choosing well. The cost will be high. Higher than you could have ever imagined… but it is worth it.

In the early years, there will be days you grieve the life you had, the sacrifices you’ve had to make. Let yourself. There’s no timeline on your grief, you don’t have to be over this loss by now, or indeed the ones that follow.

Leaving was the right decision because it aligned with the truth and you could never have lived with yourself if you had stayed. You chose your son’s needs over your comfort, your plans, your imagined future. That is not failure. That is fierce clarity.

This was not just a move. This was a choosing, and ultimately a becoming. You are on the path to a version of yourself that is stronger and braver than you could ever realise. I am proud of what you have, and will continue to walk through.

Speak to yourself kindly. Be gentler with yourself than you think you deserve.

Keep going.

There are many more challenges ahead, and some you think…. might break you.

I am living proof that you will… and they didn’t.

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
When fear rises, I pause and take a breath. I break the immediate problem into small, manageable steps and focus only on what I can control. I remind myself how far I’ve already come, how many hurdles once felt insurmountable but weren’t. I try to actively anchor myself in the “what is” rather than spiralling into the “what if.” The present may be hard, but it is almost always more survivable than the imagined future, although it is hard to practice this “in the moment”.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
A former colleague comes to mind, someone who has been steadfast in their support of me over several years.
First, loyalty. Consistent and simply remaining “present.”
Second, empathy. Their own life looks very different from mine, yet they have always made space to understand my reality.
And third, generosity of spirit. They have shown interest in my wellbeing and my children’s on a level far beyond my expectation, exceeding familial bonds. My gratitude for their presence is immense. They have taught me that support does not have to be loud to be life-changing.
What’s one quote/movie/book that’s inspired you?
Nothing on the outside is more powerful than you.

Prompt for discussion:

Your child is now a young adult, vulnerable, requiring a high level of support, and likely to do so for the rest of their life. Statistically, it is highly likely they will outlive you. It is a truth that no one will ever care in quite the way you do, yet you must prepare to loosen your grip responsibly, lovingly, with a view to a long-term solution.
How do you navigate the fear of supported government care, the unpredictability, the lottery of “good” versus merely adequate (at best) or negligent, fuelled by horror stories in the news, while also recognising that you are human, ageing, and entitled to a life beyond constant caregiving?
How do you sit with that knowledge without being consumed by it?
I would love to hear how others are holding (handling?) the paradox… between protection and preparation.

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The Dementia Anthology

Victoria — Wed, 04 Mar 2026 18:00:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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 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.
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.
Let’s not forget that 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.’

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…

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 Dream Comes True Helping Alzheimer's Home Caregivers Of Loved Ones 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

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

The 3 AM Field Guide to Dementia Aggression Your parent is screaming. You’re alone. Here’s what actually works when redirection fails. by Vance Frost
“Nobody prepares you for this after the diagnosis. The neurologist names it, maybe prints a handout. The handout says “redirect.” It does not say what to do when redirection stops working at 2 AM and your mother is swinging at you because she thinks you’re a stranger who broke into her house. She’s not angry. She’s terrified. And she’s defending herself from someone she doesn’t recognize in a place she doesn’t remember.
If this is happening right now, start below. If it’s morning and you’re trying to understand what happened, skip to “What just happened.” If you’re planning ahead, start at “Before 3 AM comes again.”
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

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.

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

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

9. Dementia-Specific Health Care Directives

Anna has created a website specifically designed to support caregivers, family, and friends of someone suffering from Alzheimer’s or another Dementia. She offers free downloadable tools and opportunities to seek her advice (Free 30-minute consultation then $80/hr).
- Here is her website
- Here is the article: Tools: Online Class on Dementia-Specific Health Care Directives. Everything Important to Know
Anna trained as an oncology nurse practitioner and spent much of her 35 year career specializing in palliative care which was not much help when she became the primary caregiver for the love of her life who developed, persevered, and died from Alzheimer’s Disease. She writes about the unspeakable pain of ambiguous loss in general, and the struggle to honor her duty to act as durable power of attorney for health care while desperately not wanting to lose her soulmate, complicated by the multiple failures of the health care system (during COVID) to provide a compassionate end of life experience for her husband.

10. 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.

11. Fear of Developing Dementia

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

12. 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

13. Books

14 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•

Caregiver peer mentoring: Let’s share and support each other by leveraging our personal experiences.

For example, questions about a type of Dementia, stage of caregiving, an issue.

Do you have a question about caring for someone with Dementia?

Do you have an article that you could share to help answer someone else’s question?

This page and discussion will remain open indefinitely to help each other.

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

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

Please Remember to ‘❤️’ LIKE the article to guide others to these resources

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Thank you!

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Dementia Caregivers: 'How to connect and communicate effectively. What to do when there's aggressive behaviour.'

Victoria — Tue, 03 Mar 2026 18:15:00 GMT

Hello, Dear Readers! A warm ‘Welcome!’ to our new Carer Mentor community members! It’s great to have you with us.

Read about why I created Carer Mentor here: Who Started Carer Mentor and Why?

One of the main aims of Carer Mentor is to bring together key insights, tips and experiences for the benefit of our community who have limited time and energy, and don’t know what they don’t know. I focus on evidence-based research from trained experts and the real-life experiences of caregivers.

This article resides in the Dementia Anthology, on the Carer Mentor Website.

This summary repurposes and amplifies the content, insights and tips from the YouTube video "Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023) and draws on the expertise of

the Dementia Action Alliance, and their Pathways to Well-being with Dementia—a manual of help, hope and inspiration 1. [Click the link to access the manual]
Melanie Bunn RN, MS, GNP2 (Dementia Alliance of North Carolina dementia educator),
Teepa Snow (International dementia educator)3,
“A Caregiver's Guide to Lewy Body Dementia” By Helen Buell Whitworth & James Whitworth 4

The teachers in the video are Lynette Wilson5 and Pat Snyder.6 I found this video thanks to ’s7 essay: ‘This is the kiss test. Plus: Caregiver coach Pat Snyder on being proactive and positive,’ that introduced me to Pat Snyder’s work:

As John’s disease progressed, Pat developed a strategy that she now advises all her caregivers to try. She calls it “personifying the disease.” You separate the disease from your loved one, give it a name (Lewy is good) and treat it as your adversary, one that can be outsmarted and outmaneuvered.

"Communicate Better with Person with Dementia Basics 4 2023" (April 22, 2023)

When you're communicating with the person who is living with dementia, do you want to correct or do you want to connect?

The core message of the video revolves around prioritising connection over correction when communicating with individuals living with dementia, aiming to preserve personhood and create a gentle journey for all involved.

Click the image to access the manual. I’d recommend giving them a donation if you use the manual. It’s a comprehensive resource!

Dementia Action Alliance

1. Fundamental Principles of Communication

Connect, Don't Correct: The overarching goal is to connect with the individual, not to correct their perceptions or statements. This fosters a more positive and gentle experience.
Preserve Personhood: Recognise and uphold their needs, wants, emotions, personality, relationships, and life story. As Melanie Bunn states, "communication is the glue when other things start to fail."
Create a Gentle Journey: Aim for a calmer, less stressful experience for both the individual with dementia and their caregivers and family. While the disease itself cannot be changed, the experience of it can be significantly influenced by communication strategies.

2. Understanding the Perspective of Someone with Dementia

Individuals living with dementia often retain a sense of self and deserve respect, despite cognitive changes. The video voices the experiences of dementia sufferers from their perspective:

Self-Perception: "I'm still me. I have the same likes. I have the same personality... I'm forgetful, I'm slower, but I can still do things. I'm rational. I'm an adult. I deserve respect."
Communication Challenges: Difficulty finding words, vocabulary loss, mind blanks, derailed sentences, difficulty projecting voice, stuttering, losing train of thought.
- Inability to keep up with fast speech; needing "more time and less distraction."
- Reduced word processing: "even in the early stage I might not hear one out of every four words that you say to me... in the moderate stage I might lose my consonants so that I only hear vowels."
Emotional & Sensory Experience: "I am absorbed in my own stuff, my view, my feelings, my needs and I also add your feelings to mine and I can combine them into one big muddled patch of feelings."
Body language and facial expressions often matter more than words.
Acting out (aggressive/agitated) can stem from physical or emotional pain, even if the pain isn't consciously felt but registered by the brain.
Living in the past: "If I'm back in time when I ask about my mother, my thoughts are about her... Can you just reassure me about that in some way I don't need to hear that she's dead all over again."

3. Dementia's Impact on Communication

Cognitive changes, particularly in the frontal lobe (which controls impulse, reasoning, and filtering), lead to specific communication patterns:

Inappropriate Behaviour/Language: Preserved brain areas may retain "racial slurs, curse words and sex talk."
Word Salad: Using real words jumbled into meaningless sentences (e.g., "he uses the Kumbaya stick and the dues that go with the donks").
Word Substitutions: Using words close to what they mean but not quite accurate (e.g., "mister" instead of "professor," "newspaper" for "book").
Repetition and Memory Gaps: Repeating themselves or forgetting instructions.
Distorted Reality: Denying what is true, or stating something as true that is false.
Appearing Irritated, Scared, or Too Personal with someone: Due to compromised impulse control and filter.
Thinking Errors: Believing "the first information they receive because they cannot evaluate it and make decisions about it."
Language Regression: If English is a secondary language, they may revert to their primary language.
Fluctuating Abilities: Communication abilities "fluctuate from day to day and from hour to hour" due to shrinking brain tissue and decreased neuro-chemicals. This means what works one time may not work another.
Increased Difficulty When Unwell: Communication decreases if the person is sick, on certain medications, or as dementia progresses.

4. Strategies for Effective Communication

Poor communication, even minor instances, can have significant consequences, ranging from "getting no response from the person living with dementia to a behavioural meltdown."

Effective communication is about making a connection, not necessarily about factual accuracy.

Environmental Factors:
- You may need to create a "quiet and calm" environment (e.g., turn off TV, limit people).
- Ensure "good lighting" to avoid misinterpreting shadows as holes or objects.
Approach and Connection:
- Observe First: "Stop and observe the person closely" for recognition, facial expressions, discomfort, and mood.
- Announce Presence: Speak from about six feet away ("knock knock” and “Hi").
- Identify and Name: If recognised, use their usual name ("Hi Daddy, hi Mother, hi sweetheart"). If not, try their first name (often remembered earlier in life). Always identify yourself ("Hi Jimmy, it's Mary").
- Slow and Frontal Approach: "Always approach the person slowly and from the front if possible."
- Be at Eye Level: "Try to sit at their level as you talk with them and maintain eye contact."
Appropriate Physical Contact: Touch "conveys interest and can provide reassurance," but assess if it's appropriate for that individual at that time.
Non-Verbal Communication is Key:
- Only about 7% of communication is verbal. "About 55% of what we're trying to say is communicated through our body language... and about 38% of what we communicate is through our tone of voice."
- If verbal and non-verbal communication contradict, non-verbal will be believed.
Body Language: Stay "calm, open, look interested," use appropriate hand gestures.
Tone of Voice: Be "friendly, not bossy or critical, not condescending." Use a "deeper" pitch and avoid talking louder, as hearing is often not the primary issue.
Speed of Speech: Be "slow and easy, not pressured and not too fast."
Facial Expressions: Humans read facial expressions in as little as 17 milliseconds. Maintain positive, interested expressions.
Staying Present: "You can't be perceptive if you aren't in the moment... we miss out on 50 percent... of our Lives by not being present."
Giving Instructions/Requests:
- Short, Direct Messages: "Let's go to the bathroom," "Put on this shirt."
- Simple Choices: Offer "either or" choices ("red shirt or blue shirt").
- Visual Cues: Hold up items (e.g., shirts) while speaking.
Involve Them: Ask them to "do something to help you" (e.g., folding laundry).
One Step at a Time: Break tasks into single steps, writing them down if helpful.
Avoid "Are you ready?": The answer is almost always "no." Be creative in your approach if the answer is negative.
Responding to Distress/Frustration/Anger:
- Identify Needs: Determine if needs are physical (tired, pain, hunger, discomfort) or emotional (afraid, lonely, bored, angry, excited).
- Empathy, Not Forced Reality: "Sounds like you're really tired," "It looks like you're angry," or "It seems like ..whatever."
- "I'm sorry you're upset," NOT "There's no reason for you to be this upset."
- Simple Sentences: "Are you cold? Are you tired? Ready for bed?"
- Redirect Attention: Once they are listening, redirect to a preferred activity, music, or treat.
Maintaining Positive Interactions:
- Stay Positive and Friendly: Praise efforts, offer thanks and appreciation.
- Laugh With Them: Appreciate their humour.
- Go Slow and Go with the Flow: Be an "improv actor" – respond in a way that aligns with their current reality.
Acknowledge Emotions: "It seems like..." or "I can see you are..."
Familiar Words/Cues: Use words and pictures they are familiar with to avoid miscommunication (e.g., "take a leak" example).
Be Prepared for Repetition: Having the same conversation over and over.
No Arguing: They are concrete thinkers and "believe what they believe."
Expect Outbursts if the conversation moves to something they don't want to do.
"They are doing the best they can."

5. Specific Challenges and Techniques

Capgras Syndrome: An irrational belief that a familiar person (usually the closest caregiver) has been replaced by an imposter.
- Strategy: Use your voice to compensate. Talk to them before they see you. Creative solutions like calling on the phone and walking into the room while still talking can help recognition.
Therapeutic Fibs: When direct truth is distressing or unnecessary.
- Strategy: Avoid re-traumatising by stating painful facts (e.g., telling them a deceased parent is dead again). Instead, give gentle, non-committal responses that don't contradict their reality (e.g., "No, haven't talked to her today" or "They were doing fine the last time I saw them").

6. Teepa Snow's Five Ways to Say "I'm Sorry"

These phrases are powerful tools for de-escalation and connection, focusing on the individual's emotional state, regardless of fault:

"I'm sorry I was trying to help."
"I'm sorry that I made you feel angry or irritated or frustrated or sad or isolated." (Focuses on their feeling, not the facts.)
"I'm sorry I made you feel like a child / stupid / like an idiot."
"I'm sorry that happened." (From their perspective, acknowledging their experience.)
"I'm sorry this is hard. I hate this for you." (Acknowledges the difficulty for both parties.)

7. Proactive Caregiving

Identify Triggers and Stressors: Reflect on what causes negative reactions in the individual with dementia.
Proactive Avoidance: Once identified, "make every effort to avoid those."
"Outsmart Lewy/Louie": Proactively anticipate challenges and have techniques in mind. [Pat Snyder sustained her husband’s personhood by separating him from his diagnosis of Lewy Body Dementia. She calls the disease ‘Louie”. Giving the disease a separate persona to blame deescalates frustrations]
Adapt and Stop: If a strategy isn't working, "stop, stop it, don't keep repeating it." Step back, re-evaluate, and try a different approach.

8 Aggressive behaviour and behavioural changes

The 3 AM Field Guide to Dementia Aggression Your parent is screaming. You’re alone. Here’s what actually works when redirection fails. by
“Nobody prepares you for this after the diagnosis. The neurologist names it, maybe prints a handout. The handout says “redirect.” It does not say what to do when redirection stops working at 2 AM and your mother is swinging at you because she thinks you’re a stranger who broke into her house. She’s not angry. She’s terrified. And she’s defending herself from someone she doesn’t recognize in a place she doesn’t remember.
If this is happening right now, start below. If it’s morning and you’re trying to understand what happened, skip to “What just happened.” If you’re planning ahead, start at “Before 3 AM comes again.”
Behavioral Changes Associated with Dementia - Part 1. How do things change and why? By
Behavioral Changes Associated with Dementia - Part 2 - For Caregivers! How to manage the overwhelming changes of dementia by
Behavior - AGITATION. Good Ways to Avoid Confrontation By Lydia Fluitt

9. Other communication / connection articles by authors in the Carer Mentor community network:

Inside the Life of an Alzheimer’s Home Caregiver By Sammie Marsalli

How To Connect
How I Learned To Be A Caregiver For My Wife With Alzheimer's. Sharing Experiences To Help Alzheimer's Home Caregivers Of Loved Ones.

The Dementia Chronicles By

Conversations with Someone Who Has Dementia: An exercise in patience

Searching for Words by Patricia Paddey

Why "Searching for the Words"?

Only The Jodi By

"I'll be Right Back" Means I Love You. Her smile breaks me, then it heals me.

Contemplations By

Over to you…

Do you have a strategy or tip you can share that helps you connect with your loved one who has dementia?

Please remember to ‘❤️’ LIKE the article to guide others to these resources.

Subscribe now

Beth Baker, Writer/Editor Karen Love And by 48 Contributors Who Are Living with Dementia, Care Partners, and Leading Dementia Specialists. the Manual Steering Committee members who helped guide and shape the development of the manual: Sherrie All, PhD; Jan Bays, PT; Jennifer Carson, PhD; Cyndy Luzinski, MS, RN; LeeAnn Mandarino, MA; Jim Mann; Daniel C. Potts, MD, FAAN; and Julia Wood, OTR/L.

A Caregiver's Guide to Lewy Body Dementia By Helen Buell Whitworth (author) & James Whitworth (author). The Amazon Authors Biography

When James (Jim) Whitworth's first wife was diagnosed with Alzheimer's, he researched it on the internet and found that her symptoms fit Lewy body dementia "to a T." Excited, he shared his research with her doctors who said, "Never heard of it," and continued to treat her for Alzheimer's, which Jim now believes decreased the quality and length of her life. After her death in 2003, he made it his mission to increase awareness of this little known but all to common type of dementia. He and four other caregivers started the Lewy Body Dementia Association (lbda.org), now recognized as the premier caregiver organization specializing in LBD.
Helen Buell Whitworth is a retired nurse, educator and writer. She has acted as caregiver for several family members, including a sister with Parkinson's, a disease closely related to LBD.

Radically Transforming the Experience of Dementia

From Teepa Snow’s Website : Teepa's Snow Approach™ methods, a series of simple techniques, are based on understanding the areas of the brain that are no longer working and making use of the parts of the brain that are still active, so you can:
Protect and Grow Your Relationship
Experience Less Resistance
Experience Less Stress

A Caregiver's Guide to Lewy Body Dementia By Helen Buell Whitworth & James Whitworth

When James (Jim) Whitworth's first wife was diagnosed with Alzheimer's, he researched it on the internet and found that her symptoms fit Lewy body dementia "to a T." Excited, he shared his research with her doctors who said, "Never heard of it," and continued to treat her for Alzheimer's, which Jim now believes decreased the quality and length of her life. After her death in 2003, he made it his mission to increase awareness of this little known but all to common type of dementia. He and four other caregivers started the Lewy Body Dementia Association (lbda.org), now recognized as the premier caregiver organization specializing in LBD.
Helen Buell Whitworth is a retired nurse, educator and writer. She has acted as caregiver for several family members, including a sister with Parkinson's, a disease closely related to LBD.

Lynette Wilson is a retired nurse practitioner whose husband suffered from Dementia

From the Amazon Author Biography

Pat Snyder was primary caregiver of her husband, John, who was diagnosed with Lewy Body Disease in 2007. Five years after John’s diagnosis, he was still in early stage LBD.
Pat teaches a UNC and LBDA affiliated class for dementia caregivers in Wake Forest, NC, moderates an online support group, and administrates the LBDNC Facebook page. She continues to work with Dr. Daniel Kaufer, Director of UNC Memory Disorders Clinic, in linking LBD resources in and around North Carolina.

Treasures in the Darkness: Extending the Early Stage of Lewy Body Dementia, Alzheimer's, and Parkinson's Disease By Pat Snyder (Published April 6, 2012)

Pat Snyder’s YouTube Channel contains numerous videos about Dementia.

I highly recommend reading Aaron Barnhart’s Podcast and Publication ‘The Diane Project’

[From his ‘About’ page] In 2020 my wife Diane — the woman to whom I owe everything — was diagnosed with Lewy body disease.
In our hypercognitive society there may be no greater terror than loss of brain function. I created The Diane Project because I thought people might want to hear from one of the 11 million unpaid caregivers whose loved ones have cognitive disease. My hope is that readers become less fearful and more proactive about dementia and caregiving.

Dementia, Music and Creativity Anthology

Victoria — Tue, 03 Mar 2026 10:00:00 GMT

A collaboration anthology focusing on Dementia, Music and Creativity

Do you orchestrate activities to include people with dementia and their loved ones? Or do you and your loved one have a playlist you co-create to support your daily care routine?

Whether it’s a nostalgia trip down memory lane or a local concert, I’d love to read/hear about it and add it to this anthology.

Summary of the resources, creators and organisations identified during Dementia Action Week 2025.

This anthology continues to expand with the discovery of new resources, initiatives and growing evidence that music and creativity have on our health and wellbeing

Subscribe now

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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

Amidst the fragile, unstable whirlwind, there were brief, calm periods in the day when I could breathe more easily, watching over Dad—we always played some classical music.

In these moments, he could catch his breath and rest, and I made mental snapshots, using all my senses. I needed these small, precious memory moments to be the antidote to the other painful crappy times.

Thank you for taking the time to be part of this community network.

This is the second dementia anthology I’m curating with our Carer Mentor community network. The first Dementia Anthology shares our personal experiences and thoughts.

Why Dementia, Music and Creativity?

In 2024, several writers and I demonstrated the power of music and its importance in our relationships. Naomi Feil's Dementia Care and her ‘Validation Theory’ to connect with Dementia Sufferers is inspiring:

'Music Memory is more powerful than words.' Empathy and human connection via music can overcome the Dementia Disconnect.
Connecting with Dementia Sufferers. Empathy, 'Validation Method' as published by Naomi Feil and Music.

The Premise: I’ve read several articles that have made me more curious about the connection between music and Dementia care, not just to connect but also to engage in activities together.

The Question: How can we engage, encourage, and empower loved ones and friends with Dementia? I focused on music first, but this could involve any creative activity.

This may not resonate with your caregiving situation, so please don’t think I’m pushing anyone to ‘do more’ or create activities for their loved one with dementia.

I want to share the experiences I’ve read that've inspired me through creativity, music, and social engagement—the uplifting ‘humaning’ stories.

My curiosity led me to discover the work of several individuals and charities who leverage their skills and knowledge to connect with Dementia sufferers. They develop accessible opportunities for fun and enjoyment, and create quality moments with friends and families—for Example, Tony Luciani and Michelle Memran, Marc Barnacle and Anthony Cirillo.

This Anthology is an open collaboration with Carer Mentor subscribers.

This Anthology Directory:

Anna Du Pen at Betwixt and Between Proxy
Marc Barnacle at Marc Barnacle Guitar
Anthony Cirillo at The Ageing Experience
Amy Standridge at Grace Notes Community Singers
Raymond Leone at Music Therapy/Music Musings
Michael Cirigliano II at Shades of Blue
Institute for Music and Neurologic Function
Playlist for Life
The Brain Charity
Alzheimer’s & Dementia Resource Center and its Director of Arts and Wellness Ashely Gravatte.
Music for Health and Wellbeing Initiative By the Global Wellness Institute
Useful links to organisations and Symptoms Checklist

The Articles

"Empowering People Living With Dementia" - The Brain Charity. Dementia Action Week (UK) 2025 By Victoria
Mindfully Using Music with Dementia, and 'A Playlist for Life.' Dementia Action Week (UK) 2025. Engaging, Creating and Empowering with Music, an evidence-based tool in Dementia. By Victoria
Dementia and Photography: Photobombs and Communicating through Creativity. Tony Luciani and his mother Elia create photos to depict living with Dementia. Michelle Menran discusses the making of her 2018 documentary film "The Rest I Make Up," which follows María Irene Fornés, the groundbreaking playwright, director and teacher, through her journey with dementia.
Grief to Gratitude Finding your life soundtrack by . Anna has shared how music has woven through her life’s love story. This is a beautiful testament to how music serves as a powerful conduit to our most heartfelt memories and life events.
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.”
“Live” Stream Music Concerts for older adults, caregivers and senior living by “Real-time, interactive. Artists take requests and shout-out viewers! Affordable and easy to use, music concerts support social, emotional and cognitive wellness.”
Experience Joy and Hope Together Grace Notes Community Singers weekly newsletter. By . I found this article by Amy and was impressed to read that in October, 2023 the Grace Notes Community Singers received an invitation to perform at the Alzheimer’s Association International Conference at the San Antonio Riverwalk. I recommend exploring Amy’s articles.
Thriving Care Partners: A Journey of Hope and Connection
As we walk alongside our loved ones through the journey of dementia, it's a common misconception that this path is only about illness and decline. However, with the right support and activities, many individuals with dementia can continue to experience moments of joy, connection, and even growth. At Grace Notes Community Singers, families living with dementia rediscover joy through uplifting music experiences.
Spotlight Article: Meet Ashley Gravatte.
When she was a girl, Ashley Gravatte treasured the moments spent on her grandfather’s lap, playing the organ. When she was 10, he bought her a piano and a year’s worth of lessons, a gift that influenced her entire life’s trajectory. She’s since made a career braiding music, art and healing work.
Now, as the Alzheimer’s & Dementia Resource Center’s Director of Arts and Wellness, Gravatte’s passion has earned her recognition as an Orlando Business Journal 40 Under 40 honoree.
ADRC Music Box Initiative hits a high note for people with dementia By
ADRC
Ashley Gravatte has been very busy.
The Alzheimer’s & Dementia Resource Center’s Director of Arts and Wellness created the Music Box Initiative — a program that offers people navigating dementia-related brain changes the opportunity to receive instruments, custom playlists and engagement ideas.
In The Hospital Music Belongs... Music Therapy Belongs by . I’d heard about music therapy before, but not like this. Raymond enables us to sit alongside him as he offers music to patients and their loved ones. Music connects, enables communication and emotional release, I highly recommend reading Raymond’s articles.
“From the outside, it may have looked as if something in this scenario did not belong. Or, it may have looked ‘nice’ to have someone ‘performing’ some music for the patient. However, on the inside, it (the music) made a difference for all involved. On the inside, the music was presented with intention, clinically, and working towards achieving a goal—to help reduce anxiety. On the inside, music therapy was an integral part of the medical treatment plan - A non-pharmacological intervention based on scientific evidence and research.”
Why I’m devoting this newsletter to melancholy classical music. What is life, if not a symphony of sorrowful songs? by . Music therapy is not just about nostalgia, memories and good times. This is why I appreciate Michael’s publication.
“No matter my mood (but especially when I was feeling a blistering sense of ennui and melancholy, as was often the case for Gen Xers in the '90s), I could come to this music to confront my emotional depths, soar through my emotional highs, and find a profound sense of communion with composers who experienced challenges in their lives similar to those I faced. And I could do that whenever I wanted.”
Music for Health and Wellbeing Initiative By the Global Wellness Institute. An article outlining five 2025 trends showing how music is increasingly used to support health and wellbeing, spanning research validation, musicians’ mental health, creativity for mental wellness, tech-enabled interventions for individuals, and the rise of mindful listening spaces (spotlighting London).

If you have an article you’d like to share, let me know in the comments.

Thank you for taking the time to be part of this community network.

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Your support is greatly appreciated. Thank you!

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Start Here. Hello and Welcome!!

Victoria — Sun, 01 Mar 2026 13:08:26 GMT

Hello! If you’re new to Carer Mentor, welcome! Thank you for being here!

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’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 ❤️

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The website is intensely packed with information. This article can help you navigate the wealth of resources and articles.

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

Carer Mentor amplifies the voices of Carers/Caregivers—to see the person beyond the caregiving and to learn about diverse caregiving experiences. Topics include bereavement & grief, chronic health conditions, like cancer, autoimmune disease, heart failure, and dementia.

I connect people, lead collaborations, and curate anthologies to build a community support network that raises awareness about caregiving, carers, and the need for collective action and change. This is a space where carers can receive heartfelt empathy and inspiration from others who ‘get it.’

The Carer Mentor community focuses on carers/caregivers but embraces everyone who is giving or receiving care for a chronic illness, disability, or health condition.

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

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

If you’ve been caring for someone for a while

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

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.
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.

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 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.

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!

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Share Carer Mentor: Empathy & Inspiration

"What It Takes To Embrace the Life He Has " By Chris B

Victoria — Thu, 26 Feb 2026 09:40:42 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria.

If you’re new here, you can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

I’m on a mission to raise awareness of the struggles caregivers face today and the hidden crisis of caregiving. These days, caregiving is not confined to the emotional turmoil of hands-on care. Carers are the glue and communication bridge in fragmented healthcare systems. We’re a buffer and the translator of needs.

It's 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.

Equally essential to its mission, the Carer Mentor website publication offers heartfelt empathy for caregivers and serves as a hub for practical tools, resources, and expert insights. I seek out community, build collaborations, and curate anthologies so that we can network and offer mutual support.

Explore the anthologies, and you’ll find others. You’re not alone. The website is a portal to others and aims to build hope.

Letters from a Caregiver.

There are two previous seasons of Twenty-Two Letters.

This Spring Season so far

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

Today’s letter is by Chris B

I met Chris in October 2025. I recommend reading his poems, e.g. Happy Hands, A Caregiver’s Poem and See, A Caregiver’s Poem…

Chris has a gift for communicating his experiences, his love for Bray Bray, and his wife, Melanie, through his poetry. It’s beautiful to see and read about his family, and his pickleball wins!

Chris builds community and easily engages with those he meets, whether it’s around caregiving or his gift for poetry, or both!

No caregiving experience is easy. Even when you see the big, beautiful smiles of Chris, Melanie and Bray Bray, I know the sleepless nights they have when Bray Bray’s been ill, or the struggle they’ve had getting the CPAP machine.

Thanks to Chris for sharing this letter to his younger self with us. He’s gifting us the magic that is Bray Bray, the vulnerable yet powerful mindset shift that he underwent and insights into how he approaches life today. (No spoilers here!)

Author’s Bio: Chris B. is an award-winning published poet, caregiver, and Dad to his son Brayden (Bray Bray). When he’s not writing, caregiving, or working, you can find Chris on the pickleball and beach volleyball courts of Long Island, NY, where he resides with his wife Melanie and Bray Bray. Chris is very active on Substack and invites you to follow along as he shares his life adventures as the working parent of a child with many needs, whose enduring smile lights up the world:

Bray Bray and Chris B.

What It Takes To Embrace the Life He Has

Dear Chris,

You keep replaying her words over and over again in your head. Partially because she had terrible bedside manner, but also because you just weren’t ready to hear it. I mean, how could you be?

Don’t get me wrong. You are very grateful that the neurologist correctly identified Bray Bray’s head motions as a baby form of epilepsy called Infantile Spasms. And of course, after those seven heartbreaking days in the hospital when he was just 5 and a half months old, you were so happy to have him home as the seizures lessened in frequency and then disappeared like magic.

Of course, like all magic, it’s tricky. And when it comes to how a doctor can essentially save his life so eloquently and then talk to you so flippantly, well, it’s complicated.

As you read this, Bray Bray is 9 months old and declared seizure-free from the Infantile Spasms. Following the hospital visit, you and Melanie have spent every day and night for the past 3 months on pins and needles while injecting Bray Bray with actual needles of ACTH— the powerful hormone medication that stopped the seizures in its tracks.

Your relationship with ACTH is tricky to say the least— mixing the ingredients like you are a chemist who never took chemistry, loading it up into the syringe, and administering to your 6, 7, 8-month-old Brave Angel while praying that the medication you inject into his legs continues to allow his brain to heal.

Bray Bray in 2015

The good news is that the neurologist is happy with the latest EEG results, and it looks like Bray Bray is seizure-free. Spoiler alert: He will remain that way for the next nine years. When they do come back at 10 and a half years old, that will be my burden to bear, not yours.

For now, you can resume the developmental therapies you originally were planning to start before the Infantile Spasms took hold. You saw the early signs of milestones not being met, but little did you know that there were these underlying factors until the seizures waved their big red flags, one involuntary head motion at a time.

The bad news is that you just had a conversation that will shape the next few years of your life and nearly destroy your mental well-being. The neurologist just couldn’t let us have the win—she had to add the most heart-wrenching caveat of caveats.

“Your son will never be normal,” is the gist of what she said, as she went into statistics and jargon, delivering the prognosis so cold, so calculating, so… permanent.

As I mentioned, you were not ready to hear it. And honestly, I applaud you for how you managed to hold back your fury in that moment. You didn’t lash out at her or unleash a tirade on her. Instead, you do what you’ve always done, what the underdog always does – take the punch, then come back with all the well-meaning defiance you have in your heart. You leave the doctor’s office, carrying Brayden to the car, along with this impossible burden you now have on your shoulders, to prove her wrong.

For the next few months, you will barely sleep because of this conversation. You do your research, you line up all the therapists to come to the house for early intervention services—21 sessions per week across 6 days per week, to be exact. Physical therapy, Speech therapy, Occupational therapy, early Special Education services, Vision therapy, Music therapy. You also take him to Swim class on his one day off from therapy.

You and Melanie do it all, and document it all: the progress, the therapists’ notes, the suggestions for sensory toys and standers and gait trainers. You turn your house into a sensory gym with everything any therapist needs to help Bray Bray along the way.

And deep down, you know you want to prove her wrong. You are thinking about the video you’ll show the neurologist when Brayden talks for the first time and says, “Daddy,” delayed as it may be. You can’t wait to show her the video of him taking his first steps, as he looks up at you, smiles, and reaches for your outstretched arms.

You will fight and scratch and claw.

And honestly, you will do everything right for him.

And then, it will happen.

Not another conversation with her, but instead, the conversation you need to have with yourself.

This conversation is long overdue. You’ve been working so hard and stretching yourself so thin while taking care of Bray Bray, you’ve forgotten to take care of yourself.

You never let yourself process everything that happened, not to him, but to you.

You never envisioned that this is what parenting would look like for you, I mean, how could you?

But now, it’s time.

It’s time for you to do something that I will forever be grateful for.

You need to come to grips with the reality of the situation.

You need to get over how she delivered that news to you so terribly at the absolute worst time— and forgive her.

You need to grieve the life Bray Bray might have had… and embrace the life he does have.

Chris, I promise you. Once you do this, once you fully accept that his path doesn’t have to hit every milestone to still be fulfilling, you will be able to let it all go— all the pain you never fully addressed, all the questions about faith, all the somber undertones you’ve been feeling.

You, Melanie, and Bray Bray will live an adventurous life, even if it’s in his wheelchair. And one day, you’ll see, his transcendent smile will change the world. Like I said, magic is tricky.

For now, you will be defiant because you just left the doctor’s office and heard what you might have already suspected but didn’t know how to process. You aren’t ready yet.

But when you are, I’ll be here on the other side, and I wrote this poem for you. Don’t open it until you are truly ready. You’ll know when.

You Thought Strength Was Defiance

You thought strength was defiance.
You thought love meant holding the flood back
with your bare hands.

But one day, a boy named Brayden—
you will call him Bray Bray—
will change everything.

He will not speak in words,
but in smiles that disarm
every wall you’ve built.

He will teach you this hard truth quietly:
strength is not in the holding—
it’s in the letting go.

You will sit in hospital rooms
that evoke fear but reveal hope.
Monitors will hum lullabies of uncertainty.

You’ll learn new languages:
Infantile Spasms. ACTH. EEG.
Eventually, GNAI1.

Each one a storm forecast.
Each one a reminder
that your compass must now follow his light.

And through it all—he will smile.
A smile that dares the darkness to stay.
A smile that says, “I am here, and that is enough.”

You’ll remember the film Winter’s Tale
and how it whispered,
“Some souls are born to save others.”

You won’t understand it then.
But later, holding your son’s fragile, fighting frame,
you’ll know this:
He was born to be your miracle.

There will be days when missed milestones
feel like relentless hammers to the head—
first words that never come,
first steps that never fall forward,
a future you can’t quite picture.

And you will hurt like hell.

But listen closely—
because in that ache,
you’ll hear something sacred:
your own awakening.

You’ll learn that love is not a checklist.
It is breath shared in silence.
It is laughter on hard days.
It is the music he makes—
drumming along to the beat on good days.
And there will be hundreds of good days.

It is the moment you realize
that while you’re holding his hand,
he’s been holding yours all along,
guiding you home to yourself.

Know this, Chris:
he will call you Dad in his own way,
even if he never speaks the word aloud.

And that will be enough.

Ten years from now, I will thank you—
for being self-aware enough to tremble,
for choosing presence over perfection,
for allowing the breaking
to become your rebirth.

You thought you were strong.
And you were.

But strength, you’ll learn,
isn’t made of steel.

It’s made of surrender.

It’s made of softness.

It’s made of his pure, persistent smile,
which keeps saving us,
through time and space,
over and over again.

I’ll see you on the other side of the storm,
Chris

Bray Bray in 2026

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
I pause long enough to remember how blessed I am that Bray Bray is still with us, letting gratitude interrupt the spiral. I then to my favorite music playlists, which always helps me change the rhythm of these moments and reset my nervous system.
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
Someone I truly admire is Bray Bray’s music therapist Alisha. She is a huge part of our lives and the way that Bray Bray responds to her is unlike anything else. The three qualities about Alisha that I admire most are:
- Her passion for helping others.
- Her presence, even when times are hard.
- Her thoughtful, selfless nature.
What’s one quote/movie/book that’s inspired you?
By far, the movie that has inspired me the most is Winter’s Tale, which I referenced in the poem I wrote to my younger self as part of the above letter. The overall theme of the movie is that some people were born to be other people’s miracles, and it isn’t always who you think it is. I say this all the time: Bray Bray was born to be our miracle. Even though he can’t talk, his smile lights up every room he’s in. His presence simply makes everyone around him better, and you can just feel his positive energy when you are around him

Prompt for discussion:

What does it mean to you to truly let go and be present, to live in the moment without the baggage of the past, or the worries of the future?

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The Spring Season of Letters From A Caregiver: “Misunderstood, and everyone has an opinion,” By Victoria

Victoria — Thu, 19 Feb 2026 10:40:03 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why? Carer Mentor is designed to offer:

Heartfelt empathy for Caregivers. A dynamic hub of resources and insights. A portal of hope and a community network. 'Human-ing' with a lot of ❤️

The Carer Mentor website is a wealth of evidence-based resources and curated anthologies (iCARE Stack). It’s also a community network of caregivers and writers who share diverse personal experiences, about Giving and Receiving Care, Bereavement and Grief, Dementia, and Cancer.

With your limited time and energy, you can use Carer Mentor as your go-to source for articles and anthologies that can spark ideas or signpost you to other publications and writers—a portal to others, who are human-ing hard too!

One of the most popular articles is "Caregiving Hacks and Tips ”, containing practical ideas for hands-on caregiving. Maybe something will fit your situation.

The Spring Season of “Letters from a Caregiver” starts today

I started this ‘Letters from a Caregiver’ Collaboration because I believe that this approach offers us, as authors, the opportunity to give ourselves more self-compassion. As readers, we can discover wisdom we may not know we need.

Author’s Bio: I’m Victoria, based in the UK. I resigned from a global corporate job in Belgium to help my Mum care for Dad until his passing in 2020. Now, I’m caring for my mother. My mentoring business and this Carer Mentor mission both flex around my main priority: caregiving. I’m living my bespoke version of thriving. ❤️

Previous letters to my younger self:

“Changes beyond my control but agility beyond my imagination.” links to how caregiving started for me in 2015 and bridges to younger me at the end of May 2016
‘Relearning Hope In A Time Of Darkness’ is a letter to myself at the end of 2019

The image below is a timeline: a line graph with a y-axis ranging from -5 to 5 and an x-axis representing time in years, with 0 on the y-axis.

You can see the destination point for each letter on this timeline. Every year, I did this timeline exercise, allocating a relative score to each major event.

2015 was one of the worst years I’ve experienced—a perfect storm of events, a test of love, and it was torture; ‘A Prelude to Caregiving: Love and Torture.’ And yet, this prelude wasn’t everything. Interwoven were chosen-family events that held me together, with quality moments and memories: Brussels: ‘The Sixth and Sixteenth Relocation’ 2015 and 1999 were two significant milestone years. Hence, the seismic activity, the sharp amplitudes of life you see above.

“Misunderstood, and everyone has an opinion”

Hello, 2017-me, I’m back with another letter.

It’s February 2026 here, you, me - we’re well, looking after Mum and living big in the small heartbeats of now. Sigh, I know that’ll be hard for you to comprehend from where you are, but it’s true.

Today, despite the constant background noise of uncertainty and random reminders of how fragile our bubble is, there’s a beautiful calm.

Before this calm, there’s been a long, twisted rollercoaster, with many emergencies. I’m sorry, hon. I think you already have an inkling of how Dad’s health is deteriorating. The plateaus will become shorter, the step-downs steeper, and his decline accelerates. [In 2017, I had no idea Mum would be diagnosed with cancer.]

So keep making the most of your time in Brussels before you move back to the UK. It’s becoming too exhausting, expensive and gut-wrenching to be a flight away from your parents when things are becoming more fraught.

Just don’t beat yourself up about creating a little space to figure out the what, where and how of it all. Because everyone seems to have an opinion, and you need to be able to hear your own inner voice.

You’re trying to recalibrate, but everything feels messy and up in the air.

You took the full year, the maximum medical leave you were allowed to help Mum and Dad (thank you, Belgian policies!). And then, from October 2016, you’ve just spent six months trying to be productive back at work. You tried to convince yourself and the company that you could take on a new role. Flip-flopping thoughts with increasing dissonance.

Choosing to resign was the best decision, and the only decision that felt right. Phew! Bravo! I’m so proud of you!

It’s a big relief. You feel more in sync with yourself, but you’re not able to articulate that yet. You will, by December 2017, though. Here’s the poem-proof: Head-Heart-Gut-Aligned:

Text within this block will maintain its original spacing when published

When the world comes knocking on your door, cracking you to attention
Avoid the paranoid thoughts, fears linked to past-contexts, expectations and perceptions 
Open that door with excited anticipation...comforted by all you’ve learnt, & what's emerging 
You’re Liberated of career chains, and life’s conditioned state
you're already armed, primed for this - 
so 'GO On, escape!' 

Today, you’re focused, ..evolving, and.. carving a new way forward;  
Discovering a path, with no stations or exact destination 
So maybe for once you can savour this journey: be curious, awake, adapt & lean in... 
stay open to even more changes, as the uncertainties begin 
This time it's not the results that's going to define this ride 
Nor a bonus, a salary or inflated pride 
Because now, you've chosen to prioritise CARE,  
For your parents, for yourself and the select few, you love & embrace like life-giving air

So when you hear that knock, it’s just a clear reminder that today 
It's one of many opportunities you can hear clearly, now that you're out of the fray 
emerging from the whirlwind your senses are more alive  
You are out of the trancelike state of sleep-walking through your own life

Relish the uncertainty, embrace the new connections,
And above all else, be brave beyond your previous comprehension.
Because after what was some awesome career progression,  
you now realise, what makes you feel alive 
You’ve reprioritised, refocused and now you’re on this path 
Exactly where you should be, to be yourself and thrive 

Even if it means journeying through pain, it’s feeling and THAT, is life 
So, now that you feel fulfilled, grown-up & evolved from that past, 
Be here, ...Be present  
Because NOW, you can Stand-up straight 
……...At Last!

YAY!

And still, in September, there’s a nagging voice in your head.

“What will people think?”

Even if you’re becoming clearer, 100% aligned about your choice to care for your parents, you’re already battling the assumptions, biases and imagined motives others are imposing on you.

The career-focused ‘friend’: Why would you leave a global VP position to be a carer? Can’t you get someone to help your parents? Why don’t you try …?

The UK taxi driver: “Aww, that’s nice. That’s the good thing about your culture, eh, you look after your parents.” I’m Chinese

You don’t know the term ‘filial piety’ yet. Soon you’ll realise it’s how some may interpret your actions and motives. Filial piety is defined as respect and duty toward parents/elders and refers to honouring, caring for, or obeying family members, often in a Confucian context.

I appreciate that may fit some, but we know it doesn’t fit our ‘Why’. Independence, agency, and choice underpin our decisions - probably because we’re born in the UK, but more likely because Dad drilled into us from a very young age, the need to be financially independent and not to rely on anyone but ourselves!

We don’t kowtow1 or feel obligated to be a caregiver. Being perceived as a dutiful daughter or ‘obeying’ makes me cringe.

Dad wanted to make sure I wouldn’t be dependent on anyone - including them. He wanted me to be ‘able to stand on my own two feet.’ It’s no wonder that I’m strongly independent!

The decision to resign and care for Mum and Dad is all about Love—not just for them, but also about what I need. What I need to feel whole and aligned with my values. If people are misunderstanding your motives or can’t get their heads around that, that’s okay.

You know. Mum and Dad know.

Right now, you’re cautious about telling anyone that you’re caring for your parents. You're wondering how much time you’ll have to ~~use~~ waste defending your decision and if it’s worth it. You’re recognising the ones who want to outshine or out-career you in conversations, or worse, patronise or pity you!

Let’s face it, though, in 2017, you’re suddenly conscious of your own internalised misperceptions, the social conditioning about what ‘being a caregiver’ means. You’re shifting your lens and curiously recalibrating your identity.

You know how hard the last couple of years have been; those are the realities of caregiving that others may not get, that you didn’t know before! This is where you start advocating for others; why we’re doing what we’re doing today.

You’re more guarded and jaded about the world, where you were used to first introductions being premised on titles, trips, accolades, and ambition.

Since 2017, there’s been a natural attrition among colleagues and friends. Some intentional choices. Other connections simply wither off the vine, untended and without sunlight. The silence between texts and calls grows larger. Reducing the rollercoaster of our caregiving life and emotions to a journey from point A, ‘the last time we talked’, to point B, ‘ now’, feels both insurmountable and reductive at the same time.

So, now you’re more discerning.

In 2017, you’re trying to find your path in life beyond professional work. Placing less emphasis on what others are thinking and focusing more on what matters most to you.

You’re setting boundaries, not just about who to connect with, but also how you spend your precious time and energy. Time is our most expensive asset. (I’m so relieved we found the Monash mindfulness course.)

Where you are right now, you’re navigating assumptions, and you’re constantly upgrading your bullshit radar.

I’m sorry to say you’re going to feel conflicted about the well-intentioned people who miss the mark in their efforts to be helpful or supportive. You get showered with ‘sorries’, sympathies and pity, and some big disappointments. There’s a lot of unsolicited advice. Those pedestals were way too high, anyway.

You reach your limit when visitors need to be comforted by Dad because they’re feeling bad about him being ill! Then they lecture you on what you need to do for him!

Caresplainers throw advice from the stands whilst you’re in the arena. It’s worse than the mansplaining we’ve experienced. You’ll see it, run that gauntlet, and share this new term, ’caresplaining’ with your friends in the Carer forums.

And there’s the blessed, saving grace.

You find Carers UK and other caregivers—finally, people who get it. All of it!

We connect with other caregivers who understand that we’re more than our caregiving role, more than what we do for others, even when the ‘doing’ consumes all our time and energy.

So, keep doing exactly what you’ve planned. Ask yourself the questions, stay curious. Trust yourself. You’re unlearning internalised perceptions and socially conditioned beliefs. When you understand your value, other opinions won’t matter—regardless of who says it, or how entitled they think they are, to give it.

The people who really matter are still on the journey with you. Be true to yourself, be clear about your purpose, and how you want to show up for others, and you’ll manage to get through the next tough years. Be you.

BIG love and hugs, Hon.

Three Rapid Questions

Describe one thing you do to move through fear or uncertainty during caregiving.
Above all, music- to shift my thoughts or my mood: #11 This Caregiver’s Music: ‘A backbone of music to stabilise this year.’
Thinking of someone you admire/respect, name three of their standout qualities/characteristics
One of my first mentors: her ability to see the big picture as well as the details, and to translate both perspectives to others: curiosity and connection.
What’s one quote/movie/book that’s inspired you?
Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom.
Viktor E. Frankl ‘Man’s Search For Meaning’

Prompt for discussion:

Have you been through a time when your life choice was misunderstood?

Tell us about a time when you realised you’d internalised a socially conditioned expectation.

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

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Kowtow is a Chinese term referring to the traditional act of deep respect or submission, performed by kneeling and bowing low enough to touch one’s forehead to the ground. Derived from koutou (”knock the head”), it signifies extreme reverence or submissiveness. Figuratively, it means acting in a fawning manner or excessively obeying authority.

Index: Cancer Articles & Resources

Victoria — Tue, 10 Feb 2026 09:00:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

This Website Publication offers

Heartfelt empathy for Caregivers. A dynamic hub of resources and insights. A portal of hope and a community network. 'Human-ing' with a lot of ❤️.

This Index is part of iCARE Stack— Building a community support network.

The iCARE Stack Vision

A reliable Go-To Hub based on lived experiences, from the perspective of caregivers and those receiving care. A portal to other authors/writers/creators’ publications who share their experiences. I curate the indexes and anthologies, so you don’t have to spend time and energy scrolling or searching.

I curate the information through the lens of my personal caregiving experience and curiosity to learn more about other people’s experiences—A portal of hope and community networking support!

The Cancer Anthology

Building a Synthesis of Insights

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Carer Mentor’s Directories

Carer Mentor Articles

2025 Articles: From grief to advocacy and my own health scare.

January

The premise: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’ January 28.

February.

For World Cancer Day, I collaborated with other writers/creators to publish iCARE: The Cancer Anthology for, and by those with cancer and their caregivers (aka everyone around them). February 4th.
The Cancer Journey. Moving Forward After A Diagnosis. Sharing some helpful resources and insights. February 11.

April.

Introduction to The Cancer Care Journey, an Insights Map of Lived Experiences. April 7.
The Cancer Care Journey: The Broader Context. What considerations/factors influence cancer treatment beyond the medical steps? Seeing and caring about the whole person and their life beyond the medicine/treatment journey. April 14.
Bowel Cancer Awareness Month (UK). What are the symptoms? How do I get tested? Is there a screening programme? April 21

July

‘Do I have cancer?’ Navigating to Clarity: A summary of my journey and recommendations.
When you have a nagging feeling at the back of your mind that something isn’t right, how long do you wait before consulting a doctor? What do you say to the doctor? What will you do when that nagging feeling doesn’t go away?

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Please remember to ‘❤️’ LIKE the article to guide others to this community support.

Please share this Index to reach others seeking Cancer support and insights.

Giving and Receiving Care Anthology

Victoria — Sun, 08 Feb 2026 12:00:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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

Four anthologies comprise Carer Mentor articles and articles from MANY other writers/curators. You can read the Introduction to the iCARE Stack here.

This Anthology is dedicated to sharing the challenges surrounding the actions of giving or receiving care. It 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 an article by sharing its URL in the comments. Thank you!

Anthology Table of Contents

First Aid Advice
Caregiving Hacks / Tips, including home aids and safety alert devices
Hospitals, Admissions and Experiences. Sharing the realities of hospitalisation. Actionable insights, ideas and tips.
1. UK including my mantra and how I advocate for my loved one and myself
2. USA
Medications (UK, USA, Canada, Australia and New Zealand)
Organising, Monitoring, Tracking
On the cusp of Caregiving
Starting the discussions (eldercare, partner/spouse)
The realities of giving and receiving care,
1. Poems I’ve written about caregiving
2. Realities of caregiving and receiving care
3. Asking for help and support, including a literal example
Communication challenges
1. Communicating with Family and Friends
2. Consultations with medics, and closing potential patient-doctor disconnects
Navigating access to care support in the UK
Navigating access/insurance and care support in the US
1. Access to medical treatment/interventions
2. Insurance / access to care support, and navigating life around caregiving.
Navigating Access to Care Support in Australia.
Dispelling myths, Challenging Societal ‘Norms’, Prejudice.
Dissonance in value: care, productivity and emotions
Tough decisions and essential documents
Support Organisations

Directory of the Authors | Writers | Publications included.

St. Johns Ambulance. First Aid
British Red Cross
Chris B at Chris B Writes
Patty Bee at Second Drafts
Denise Brown at Caregiving Reflections
Siobhan Calthrop at A Sandwiched Life
Donna Chandler at If I Get Dementia: Empowering You As A Caregiver
Sarah Coomber at Sandwich Season
Allison David at The Weight of Caregiving
Anna De La Cruz at GenXandwich
Janine De Tillio Cammarata at the Pause Place
Anna Du Pen at
Sue Fagalde Lick at Can I Do It Alone?
Wendy Frew at Care-Full
Karen Hargrave and Emma Gore-Lloyd at #ThereForME
Lauren Klinger at Learn From My Mistakes
Kelly at The Disabled Ginger
Kerri at
Tina at Dad Lives With Me
Cindy Martindale at Smarter Caring, Smarter Living
Dr Rachel Molloy at
Mel Schlessinger at Loss To Living
Karen Lutfey Spencer, PhD at I’m Not Gaslighting You
Kira Stoops
Janice Walton at

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1. First Aid Advice

St. Johns Ambulance. First Aid
British Red Cross. Learn first aid. Learn the key first aid skills to use in an emergency
A minute can make a difference. Only 4 in 10 people in the UK would feel confident helping someone in a first aid emergency - Opinium, July 2023, nationally representative 2,000 UK adults.
First aid videos: learn five skills in five minutes
Take five minutes to learn five basic skills with our first aid videos

2. Caregiving Hacks / Tips

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3. Hospitals, Admissions and Experiences

UNITED KINGDOM

Sharing the realities of hospitalisation. Actionable insights, ideas and tips.
The first questions about hospitals. ‘When the going gets tough, you’re not alone.’ By Victoria, Carer Mentor.
You’re not alone, you have rights to Access social care. I highlight a charity that works with anyone in the UK who needs legal support. You don’t know what you don’t know—call or use the AccessAva app. 'We're only human. Legal support to help enforce your rights under The Care Act.'

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UNITED STATES

Thank you, . I really feel for you, and I’m also impressed by how you’ve shared your experience so clearly, without raging. For Readers: these are harrowing but very real accounts of hospitalisation and post-hospital rehab.
This resonates: ‘I learned the yin and yang of asking questions in a hospital like this: push too hard and risk being branded a problem, stay quiet and risk missing something vital or life-threatening.’
It’s a high-wire act of stress and hypervigilance when you’re advocating for and caring for someone in an ER, hospital, or care facility.
I was relieved to read in the article’s comments that Patty’s family have experienced good, caring facilities and hospitals as well as these terrible situations.
- 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
- Where the Caring Ends The first 24 hours in a ritzy New York suburb’s House of Horrors nursing and rehab home
Tips for Surviving a Hospital Trip When Chronically Ill. When you're disabled - the decision of whether or not to go to the hospital is incredibly complex. When you have no choice but to go - there are ways to make it easier. By
How to Stay Covid Safe When in Hospital. A guide to navigating the risk of hospital acquired Covid - as well as how to manage overall risk of nosocomial infections and hospital derived complications. By
How to be an Effective Advocate for a Disabled Patient. Disabled patients are rightfully terrified of being hospitalized. We are stripped of our agency and control in a hospital environment. Having an effective advocate can vastly improve the experience. By
Who can you call from the hospital at midnight? Finding the elusive emergency contact. By
You're not as alone as you think you are. Post about emergency contacts yields results. By
When the Healthcare System Hands the Burden to Caregivers by Allison
“When I explained that I wasn’t a nurse, and that I didn’t feel comfortable taking her home when she was so fragile, they nodded sympathetically—and discharged her anyway.
I was livid.” - Allison

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4. Medications - getting the names and what they’re used for.

Carers UK Highlights this website: “If you want to know more about a particular medication and its side effects, it's best to avoid doing a random search online which may throw up inaccurate, out-of-date, disturbing or misleading guidance. The NHS site has an A-Z directory where you can look up a particular medication and find out reliable information about its side effects: A-Z of medicines.

Online directories of medications

Electronic Medicines Compendium (UK and EU). 'The electronic medicines compendium (emc) contains up to date, easily accessible information about medicines licensed for use in the UK. emc has more than 14,000 documents, all of which have been checked and approved by either the UK or European government agencies which license medicines. These agencies are the UK Medicines and Healthcare Products Regulatory Agency (MHRA) and the European Medicines Agency (EMA).'

Drug Product Database online query(By Health Canada). Search the Drug Product Database (DPD) to find drugs authorized for sale by Health Canada.

US Food and Drug Administration Drugs@FDA: FDA-Approved Drugs. Drugs@FDA includes information about drugs, including biological products, approvedfor human use in the United States (see FAQ), but does notinclude information about FDA-approved products regulated by the Center for Biologics Evaluation and Research(for example, vaccines, allergenic products, blood and blood products, plasma derivatives, cellular and gene therapy products).FDA Vaccines, Blood and Biologics

Drugs.com(US). You can search for a drug, a condition. There's a useful 'Pill identifier', Drug interactions checker and Drug side effects search option.

Australian Register of Therapeutic Goods(By the Australian Government. Ministry of Health and Aged Care. Therapeutic Goods Administration (TGA)). Search the ARTG by name, ID or sponsor. Search results include product name and formulation details, sponsor (company) and manufacturer details, Consumer Medicines Information (CMI) and Product Information (PI). Not all CMI and PI documents are available.

New Zealand Universal list of medicines(By the New Zealand Ministry of Health) 'The New Zealand Universal List of Medicines is the standard source of commonly-used information about medicines in New Zealand. It is the primary naming and coding database for medicines in the NZ health sector, and is used in most medical and pharmacy software.'

Back to Table of Contents

5. Organising, Monitoring, Tracking

A Caregiver Organiser in How to Reduce Stress During Caregiving. Journaling to Track and Organize by Janine De Tillio Cammarata.
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’
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.

Back to Table of Contents

6. On the Cusp of Caregiving

Checkpoint: 'Are you a Carer?' Many people don't consider themselves to be a Carer until a Crisis happens. Here are some useful UK definitions, facts, figures, and signposting to support you. November 11 2023.
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: A guide for LGBTQ+ carers
Taking on a caring role:

US Specific:

Caregiving 101. It Helps To Be Prepared. By . Publication: Ageing Well

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7. Starting the discussions and to manage someone else’s affairs

Eldercare

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
The Eldercare Discussion. Connection and Conversation. Questions and Resources By
Having “The Talk” Without Blowing It Up (What Actually Works) How to begin conversations about help, change, or decline By . 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
Caring for Parents: Being One Step Ahead. Thoughts and tips on practical ways to be prepared for parental decline By I really appreciate the way Siobhan compassionately lays out potential scenarios and empathetically shares her ideas, insights and words of wisdom.
My firsthand experience using ‘5 Wishes’ to talk about end of life Complete with how-to screenshots of 2 online tools By A personal experience of how one family used the ‘5 wishes’. A useful walkthrough with links and screenshots.

Starting to manage someone else’s affairs

This is a UK focused video by Carers UK

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8. The realities of giving and receiving care

a. Carer Mentor Poems

In many situations, I’ve found it easier to express thoughts and feelings via poems.

‘Poem: ‘Head-Heart-Gut Aligned’. Then the decision clicks, and your ‘Why’ makes sense.
Poem: ‘The Eldercare Rollercoaster’ The unpredictable emotional ride-along when your loved one’s health has an Increased accelerated decline.
Poem: ‘Cut through and torn’
Poem: ‘If I could.’ A poem about translating Carer needs
Poem: ‘Friends, I see you!’ I wish you restorative sleep, moments of joy and peaceful calm.
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.
Poem: ‘The ‘We’ of Cancer What I do to navigate both of us through anxiety and uncertainty.

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b. The realities of caregiving

Less Than, A Caregiver’s Poem… And Why Assessments Piss Me Off By . Chris, Melanie and Bray Bray share their beautiful energy and light via Chris’ poems, interviews and articles. Everyday realities with a glass half full spirit (no toxic positivity). This article sheds light on assessments for Bray Bray’s care.
Essentially, I need to evaluate Bray Bray’s cognitive, communicative, and social abilities on a scale of 0 (never), 1 (sometimes), and 2 (always).
And listen, I get it. But that doesn’t mean that every 0 I checked off didn’t feel like another gut punch to my core.
Never Off Duty: The Caregiver’s Struggle with Hypervigilance by
“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
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.
Dad Doesn’t Want to Move, But I Can’t Keep Up Category: Living Situation by
“Caregiving for your elderly loved one long distance was fine until it wasn’t. Maybe Dad lives five miles away or 5,000, but you managed. It wasn’t always easy or convenient. Sometimes you felt guilty for not doing more. Maybe you had help, but that help is no longer available. Or maybe your responsibilities at home have increased, and you’re no longer as available to go to Dad as you once were.” - Tina
Thank you , for your advocacy of ME/CFS. This post was heart wrenching and illuminating (please forgive that pun). There is SO much more we all need to learn about ME and that includes how to be better advocates/allies. As a caregiver, it was especially hard to read how Galen could not talk to James, and that this, in itself was an act of love. The Dark and Silent Abyss.How do you care for someone when light and sound cause pain?

This week’s post comes from Galen Warden, whose adult son, James, has Very Severe ME. Like many with ME, he suffers from hypersensitivity to light and sound, adding to the challenges he and his mother face navigating his care.

Lessons from a Fall. What I learnt about caring for my mother after her fall By . “Those of you reading this who have parents that you care for, either now or in the future, will very likely have to deal with a fall at some point. The more prepared, the better.”

c. Asking for help and support

Learning to ask for help Our “awkward, brave & kind” email and the response we received By I love this article from Sarah because she shares the email she sent out to friends asking for help and how they used a Google schedule to coordinate. Practical, word-for-word advice. Thanks, Sarah!!
How to Shatter Barriers Blocking Caregivers From Getting Help. And five ways to begin.. By . (US focus) Cindy shares some practical tips for caregivers, useful reframes to rethink asking for help and list of resources.

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9. Communication challenges

Communicating with Family and Friends

This offers some essential advice about setting the right tone and communicating with family members. Unlocking Support: Effective Ways to Approach Family Members About Your Parent's Care. Getting everyone on the same page is an important first step in eldercare by

Consultations with doctors

How to close patient-doctor disconnects by (UK)
- Specific language, advocating for ourselves/loved ones with health concerns
- Beyond the right words, how we (doctors and patients) can listen, not just hear, and closing disconnects in emergency situations.
In this article, (UK) offers her insights from the perspective of both a doctor and a carer. An insightful dual perspective and meaningful learnings for us all. Listening, not just hearing. How a graduation speech made me think about listening in healthcare, from both sides of the consultation room.
Making the most of attending a doctor’s appointment Tips for going along to appointments without taking over. By This resonated loudly, thanks, Lauren:
“They were often less fun, with me trying to control the situation, to get us there on time, to get the doctor to answer his questions, to get my dad to answer the doctor’s questions honestly. If I interjected and corrected an answer (“You haven’t walked to the pool in months, dad;” “You do still sometimes drink Scotch, right?”), he would scowl at me. But if I managed to remember something important, like the name of his cardiologist or the date of his last urology appointment, he’d smile and tell me he was so glad I was there. I never knew exactly what response I was going to get, and it was maddening.”
(US) has written three articles with actionable insights and scripts to support your consultations. Great advice! Thanks Kira!
Don't go to the doctor without this trick (Tip #1)
Appointments that used to stab my hope balloons now add extra helium. My doctors listen, we work together on forward strategies LIKE GROWN-UPS, and we make the most of whatever time we get.
I don’t roll out feeling like I might be cured. That’s overselling it. But I do leave feeling like there are options, ideas, and especially: empathy.
Don't go to the doctor without this trick (Tip #2)
In fact, good doctors encourage your input. Great ones trust your instincts (and gently challenge them). These are the ones we want to support and stay in business. With them, it’s easy: just say no. And done. This post isn’t for working with docs who get it.
This post is for when you have to find a way to say no to not-so-great doctors (rife in small towns and underserved markets) without damaging consequences. This requires subtlety, diplomacy, and truth-slanting, none of which come remotely naturally to me.
Don't go to the doctor without this trick (Tip #3)
offers some great tips on where and how to find great doctors. It’s great to read ME/CFS-focused support AND it’s also easy to see how to extrapolate her insights to other chronic health conditions and illnesses. I check in with my online carer groups for ideas too.
It’s likely you’ll feel frustrated when you read this article, but it is an important read to prime yourself for any interaction with medics. Thanks for sharing this, Kerri. Doctor as ally or adversary? Lessons learned about how to communicate with your elderly parent's medical care team by (US).

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10. Navigating access to care support in the UK

Here in the UK, I think there’s a mainstream assumption that, with the NHS (free at the point of clinical need), care is readily available and accessible for everyone. It’s not.

The tip I give to carers in the UK - the best recommendations for quality care homes, palliative/end of life care are Hospice UK, local Maggies 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 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

11. Navigating Access to care support in the US.

Access to medical treatment

I recommend reading this article by sharing rage and frustration about trying to obtain the right medical drug care for her very young patient How To Save A Life. hint: it's NOT by following the rules. Dr Zed Zha helps us understand ‘Prior Authorisation’—how the process of access to drugs is regulated and implemented in the USA.
Pharmaceutical companies develop and produce therapies, ‘managed care and insurance companies’ regulate access to those therapies. It’s complex, convoluted and a confounding part of the USA Health system

Insurance / access to care support, Medical bills advice, enablers and navigating life around caregiving.

as part of her Caregiving Years Training Academy shares her thoughts via a video, about Navigating The 19 Caregiving Systems. Once you see and hear this, many things click into place. Caregivers are the buffer, translator, communicator, explainer, and so much more. They are the go-between, advocate, champion, and protector of our loved ones. The systems are different but mirrored here in the UK.
: Respite Resources 1.28.25. Care Policy, Resources, and Fun Distractions
The Staggering Costs of Elder Care in America. My Experience with Medicaid, and Threats our Safety Net faces By shares her Medicaid insights and tips.
A Business Insider article by 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.
What costs $209.50 per day and also is terrible? The answer is: coinsurance for skilled nursing when you have Medicare. By . Lauren breaks down the numbers and the real deal about navigating Medicaid and Medicare. Thanks Lauren
The long term care insurance puzzle And how to identify the pitfalls before you buy by
How I Save Money On Medical Bills Life is more expensive for everyone, and getting worse - here’s what I do. By
Your Health Insurance 101 Resource Guide Terminology we should have been taught in high school. By
So for the folks who are a bit unclear, here is a basic explainer of American Health Insurance terms. Open enrollment is coming soon and it’s important to understand how it all works to make the best decision for your life.
What senior health benefits / medical insurance would an insurance agent choose in the US? Here’s one expert’s decisions and insights. Thank you, Mel! Read This Before Open Enrollment 2025. Critical Information for Every Medicare Beneficiary By (a guest article on a publication by )
Until this open enrollment, I was an insurance agent specializing in Medicare and senior health benefits. I have 40 years of experience dealing with health insurance products (including Medicare) and was the 2011–2012 president of the National Association of Insurance and Benefit Professionals (formerly National Association of Health Underwriters).
As we approached this year’s open enrollment, I decided to retire from my career. I ended my career primarily because my wife has terminal cancer and recently entered hospice. That, combined with the many changes to Medicare Advantage Plans, made providing the level of service that I felt my clients deserved impossible.
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12 Navigating Access to care support in Australia.

(who writes Care-Full) is based in Australia and has written several very informative articles about finding an aged care home for her mum. I kind of wish Wendy could decipher the UK system in the same way she’s written these articles!
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13. Dispelling myths, Challenging Societal ‘Norms’, Prejudice.

Thank you for Standing the Ground, making others aware and advocating for our needs. ‘A Plea to Maskless Healthcare Workers from Vulnerable Patients. If you see a mask - wear a mask.
Better yet - wear a mask all the time and show us you understand that we're still IN a pandemic. We are depending on you to keep us safe - please don't betray that.’
Madelleine Müller Thank you for this article. It’s an essential testimony to the impact of ‘Toxic Positivity’ in Western culture, the negation of suffering as part of the Human experience (whether we like it or not!) and the prejudices that persist in our ableist society. An important read! Challenging wellness culture’s stigma towards chronic illness .
Wellness culture teaches us that being sick means we are not taking well enough care of ourselves. This thought perpetuates stigma about chronic illness and it causes internalised shame.

14. Dissonance in value: care, productivity and emotions

Maybe I should just leave care and become a bike courier instead is what my salary said to me the other day By ‘Unconscionable but true, Rebecca compares her wage versus a ‘bike courier’, and exposes the emotional labour she endures.
Tuesday 28th October, this was in the news: UK turns to helper robots as social care crisis deepens An article in The Business Standard and reported by the BBC News. Choosing not to spend my energy commenting on this right now!

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15. Tough decisions and essential documents

In this article, highlights the tragic situation of not having an advocate for you and your wishes, when you are mentally incapacitated. An important read and reminder to prepare ourselves and our loved ones. Cases in the Betwixt: No Family. What Becomes of Them?
This is a useful article for anyone in the US, defining key documents and offering succinct advice Donna has put together a great summary. A Legal Roadmap for Dementia Families The Documents We All Wish We’d Signed Sooner by
Thanks to and her Dad, Jim Coomber for this article. Hanging up the car keys: A Dad/daughter conversation. There is a lot of grace in these lines! Respect.
Sometimes, we must make hard decisions for the safety and benefit of our loved ones, whether we like it or not. has shared her heart-wrenching experience: The Toughest Decision I've Ever Made.
Dementia-Specific Health Care Directives
- has created a website specifically designed to support caregivers, family, and friends of someone suffering from Alzheimer’s or another Dementia. She offers free downloadable tools and opportunities to seek her advice (Free 30-minute consultation then $80/hr).
  - Here is her website
  - Here is the article: Tools: Online Class on Dementia-Specific Health Care Directives. Everything Important to Know
Anna trained as an oncology nurse practitioner and spent much of her 35 year career specializing in palliative care which was not much help when she became the primary caregiver for the love of her life who developed, persevered, and died from Alzheimer’s Disease. She writes about the unspeakable pain of ambiguous loss in general, and the struggle to honor her duty to act as durable power of attorney for health care while desperately not wanting to lose her soulmate, complicated by the multiple failures of the health care system (during COVID) to provide a compassionate end of life experience for her husband.

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16. Support Organisations

Useful links for advice, info and ideas. Carers organisation, discussion forums, news, everyday support

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Return to Index Giving Receiving Care

A Caregiver's Poem: "The 'We' of Cancer"

Victoria — Sat, 07 Feb 2026 17:42:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members! I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

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Dear Friends,

The poem below is about caregiving for an older loved one or a parent through cancer treatment and monitoring.

Click here to read Why iCARE about Cancer. Past and present events, first published January 2025.

This second rollercoaster is built on a previous nightmare. We’re blessed and very lucky for what we have. Everything is relative!

If you’re a caregiver for someone with cancer, please know you’re not alone.

If you’re comfortable sharing, introduce yourself in the comments below. If you’ve written about your experience, feel free to share the URL and title of your piece.

There are many resources and information aimed at supporting the family and friends of those diagnosed with cancer. Click here for links to support organisations.

You may be interested in reading one of the articles in this Cancer Anthology.

Text within this block will maintain its original spacing when published

"The 'We' of Cancer" by Victoria @Carer Mentor

In murky water, we try to move through
currents of uncertainty, trying not to stew. 
Until the 'Scanxiety' challenges us to a fight,
we keep hope for calm waters and ripples of light.
Thirsty for news but with quiet dread.
Fishing for hope, despite chatter in our heads.

Our world is smaller— Immuno-compromised, 
shielding, masked, invisible,                          and slightly fried.
Quality moments stuffed into seconds,    hearts remain tied. 
Together, we "should focus on the now!",   yet we're primed 
blind to the twists, the gaps          and that sudden tired fall!
Vigilant. To. It. All.

Guiding gently, talks of wishes, risks and needs. 
Listening intently for buzzing worry-bees 
Comforting, reassuring as I steer us through the weeds.
Are we caught in a swirl? Is it an issue? Or can we plan like we're free?
It's hard to just BE, constantly
swept along in more currents, nowhere to flee.

I choose to keep evolving and finding a 'me'
That fits to float our fragile bubble of 'We.'
Because one thing
Cancer can't override
Is all the love we have together
while I'm by her side.

I hope something in this poem resonated with you.

I realise not everyone can be a full-time carer, and many people do not have the support (people or finances) they need to care for their loved one. Some may have a difficult relationship with the person they’re trying to support.

My heartfelt empathy to anyone who is struggling. I see you.

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

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iCARE: The Cancer Anthology

Victoria — Wed, 04 Feb 2026 09:00:00 GMT

Hello, Dear Reader! Welcome to our new Carer Mentor community members!

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

World Cancer Day, February 4th

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

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

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

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

Anthology of Cancer Experiences

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

Anthology of Cancer Experiences

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

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

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

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

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

Back to Table of Contents

1. Adult cancer experiences

Breast Cancer

Emma Vivian writes Attempts at Optimism by Emma Vivian.

‘I survived aggressive breast cancer at age 29. My childhood best friend, diagnosed the same year, did not. In this piece, I reflect on how writing helped me overcome survivor’s guilt. ‘Welcome to ‘Attempts at Optimism’
Five years after losing my breasts at age 30, I reflect on how the loss shaped me and changed the way I view my body. Five Years Ago, I Lost My Breasts’

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

How It Began. This story is the origins of my Substack publication and tells the story of the first moment when we learned of my husband’s breast cancer diagnosis.
That Ribbon. This chapter delves into my emotional response regarding the gendered stereotype of breast cancer and who it leaves out of the narrative.

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

So in Meet my Brussels Sprout I share the details of my diagnosis just weeks before Christmas – a tumour in my lymph node the size of a very un-festive Brussels Sprout – and explore how daunted I feel about what lies ahead but also my consultant’s advice to embrace the treatment and keep on running…
And a month later, in So What’s Chemo Really Like? I explain why chemo isn’t like the movies – and why that’s seriously good news! It’s more boring and less disruptive than I expected. I reflect on how the stories we tell shape how we feel about challenges in life - and share the tips and little luxuries that make my weekly infusions more tolerable.
I don’t yet know what the ending will look like – I’m angling for a happy one – but I promise to give you all the twists in my real-life drama.

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

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

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

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

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

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

“In my writing about living and finding meaning after a devastating diagnosis (in my case, stage 4 breast cancer), my readers often comment with, “You’re such a positive person.”
I’m not actually a positive person. Let me rephrase that — my goal is not to be a positive person.
My goal is to be a mentally healthy person.
Although it sounds great on the surface, “positivity” can easily cross a line into toxicity.”

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

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

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

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

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

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

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

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

Back to Table of Contents

Cervical Cancer

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

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

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

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

No Regrets Staring at Death Helped Me See Life Instead

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

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

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

nonHodgkin’s lymphoma

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

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

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

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

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Lung Cancer

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

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

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

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Ovarian Cancer

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

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

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

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

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Colorectal Cancer

Janine Cutting writes about life beyond her colorectal cancer.

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

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

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

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

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

“Why am I sharing my personal experience with colorectal cancer? Because I hope nobody in my family or among my friends experiences what I have. The same hope extends to people I don’t know.
I hope you will get screened for colorectal cancer regularly if you are over 45 EVEN IF YOU HAVE NO FAMILY HISTORY OF CANCER AND NO SYMPTOMS. And continue screening even after age 75.
You don’t want to experience advanced-stage colorectal cancer. Trust me.”

Colorectal/Bowel Cancer Awareness month is in April:

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Prostate Cancer

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

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

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

writes about Prostate Cancer and the bits they leave out.

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

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

writes Guy with Cancer

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

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

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

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

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

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

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

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

1. Into the Wild The Journey Begins

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

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

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

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

writes Hans Casteels’s Nutmeg’s Substack

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

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

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

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

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

Back to Table of Contents

Squamous Cell Carcinoma

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

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

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

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

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

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

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

My husband has cancer. The father of my toddler. My best friend since high school.
I’ve read the stories before — young person, rare cancer, blindsided. I always thought that won’t be us. We’re healthy. Informed. Supported. But it was us.
Two weeks ago, we were living a normal life. Toddler chaos. Work deadlines. Groceries. Date nights. Then came a dull pain under his ribs. Maybe gallbladder? Something antibiotics could fix, we thought. But instead, we got tumors — multiple, grapefruit-sized.

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

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

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2. Child/childhood cancer experiences

Osteogenic Sarcoma

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

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

Leukemia

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

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

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

Rare form of paediatric cancer

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

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

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

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

“One of the most wonderful and amazing attributes of the human soul is the near impossibility of crushing all hope. This is a gift. I don’t know if it’s God, or nature, or evolution, nor do I care — it is a beautiful and vital part of what makes us human.
We have actual published data that people (patients and parents alike) can (and want to) hear frank, stark information about their prognosis, are able to internalize the fact that they are going to die of their disease, and yet still simultaneously maintain some sort of hope.
This often befuddles clinicians, and I am often called to help because a parent or a child doesn’t “get it.” I find myself in those situations explaining to my colleagues that the ability to simultaneously grasp one’s own mortality while still hoping for something is one of the beautiful paradoxes that makes us human and that allows us to function.” — Dr. Elisha Waldman

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

Neuroblastoma

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

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

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

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

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

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Our recommended organisations (UK, USA and Canada).

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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For the care of children

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

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

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

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

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

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

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

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

Other organisations

Macmillan Cancer Support Website. Cancer statistics in the UK

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

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Our Book Recommendations

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

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

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

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

Do you have an article or podcast episode you’d like to share? Let me know in the comments.

Thank you for being here. Help me network ‘empathy and inspiration’ by subscribing to Carer Mentor.

Please Remember to ‘❤️’ LIKE the article to guide others to this community support.

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World Cancer Day, February 4th: "Care to share your story?"

Victoria — Wed, 04 Feb 2026 08:00:00 GMT

Click here to read Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me, written in January last year.

World Cancer Day February 4th

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

The day is led by the Union for International Cancer Control  (UICC) and was established in 2000.

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

Every story counts

“Cancer is more than just a medical diagnosis – it’s a deeply personal matter. Behind every diagnosis lies a unique human story – stories of grief, pain, healing, resilience, love and more. That’s why a people-centred approach to cancer care that fully integrates each individual’s unique needs, with compassion and empathy, leads to the best health outcomes.”
Get involved in any way you can. Because together, we can create change.
Together, we are #UnitedByUnique

Join us and take action

Every experience with cancer is unique and it will take all of us, united, to create a world where we look beyond the disease and see the person before the patient. This World Cancer Day, let’s come together to rewrite the future of cancer care - one where the needs of people and communities come first.

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

Carer Mentor Resources and support

1. This is the iCARE Cancer Anthology, a collaboration with several writers:

2. A publications directory so new readers are signposted to other publications: iCARE: Cancer Publications Directory. Building a Community Network of Cancer Support

3. Articles, signposting to support organisations and an overarching index. Index: Cancer Articles & Resources. Building a community support network and resources

I’m continuing to update these resources.

If you’d like to share an article to help others, in the comments below please provide:

A short introduction about yourself
Article title and the URL link to your post

A special shout out to our community network who have written about their experiences. Care to share a new article?

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Resources to spread the word

Here’s where you can find Materials for World Cancer Day

Please remember to ‘❤️’ LIKE the article to guide others to this community support.

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Carer Mentor: Empathy & Inspiration

💬 Caregivers Who Are Parents: "Ask Us Anything"

Caregivers who are parents.

In the comments discussion “Ask The Team Anything”:

“What do people get wrong about your caregiving as a parent?”

The next ‘Caregiving As A Parent’ discussion will be on Friday, May 1st.

It will be hosted by Maria Messer at her “Holding Both” publication.

Read more about the Team

1 & Bray Bray - United States

2 - United States

3 - United States

4 - United States

5 - United Kingdom

6 - United Kingdom

7 - United States

8 - United Kingdom

9 - United States

10 - United States

11 – United States

12 - United States

“Ask The Team Anything”

"My caregiving journey is a family healing journey" By Viva Mogi

Letters from a Caregiver.

Today’s ‘Letter from a Caregiver’ is by

My caregiving journey is a family healing journey

Prompt for discussion:

March Roundup: "Shifts, cracks of light and networking empathy together."

Shifts, cracks of light and networking empathy together.

How do we look after each other, at any age?

“Caregiving as a parent” on Friday, April 3rd.

Don’t forget that UK clocks move forward this coming Sunday, 29 March 2026. At 01:00 GMT, the clocks will move to 02:00 British Summer Time (BST).

‘The Letters from a Caregiver’ Spring Season collaboration continues.

Growing Anthologies of Diverse Experiences

Other Anthologies updated over the last month:

ComfortZone article

Don’t forget to join the discussion thread: “Caregiving as a parent” on Friday, April 3rd.

Three Seasons of 'Letters from a Caregiver'

The Autumn 2025 Letters from a Caregiver Series:

The Winter Season 2025/6

The Spring Season 2026

An Anthology: Eldercare / Caring For Parents

Anthology Table of Contents

Eldercare / Caring For Parents

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

Caring for your parent(s) from a young age

Initiating discussions about your parents’ care wishes

Aligning on priorities together

A sudden diagnosis, crisis or emergency

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

Be prepared for an emergency or hospital trip

When does a parent decide to give up driving?

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

Discussing everyday finances, bills and banking

Care support: where parents live.

Care support: orchestrating support at home

Siblings, family dynamics

Long-Term Caregiving

Enabling comfort and quality time

The giving and receiving of care

A crisis or emergency, hospital and discharge

Downsizing, sorting through belongings before they pass or afterwards

Palliative, Hospice/End-of-Life

US-based definitions and experiences

UK-based information

After your parent, family member, or friend has passed

UK information

US information

Caregiving for your other parent

Carrying grief as life continues

Support organisations and book recommendations

#12 This Caregiver's March Watchlist: "Connections, grief and love"

The Curiosity Shop. March 19 2026.

The episodes Brené mentions in The Curiosity Shop

“All There Is” with Anderson Cooper.

Sara Bareilles debuts ‘Home,’ a new song about grief inspired by Anderson Cooper and Stephen Colbert. March 20, 2026

Andrea Gibson + Megan Falley. It's Ok to Ask Questions (S3:E1) June 1 2025

Emma Thompson Breaks Down Her Most Iconic Characters (9 December 2025)

“We served Olivia Colman & Benedict Cumberbatch a FEAST! “The Dish Podcast.

The Skin Deep

This was so touching.