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Dementia Action Week (UK) 18-24 May

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

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

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

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

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

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

Care to share your Dementia story in the comments?

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

OR

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

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

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

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

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Carer Mentor supports Dementia Action Week

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

Watch or listen to diverse Dementia experiences

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

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

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

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

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

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

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

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

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

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

Find support for you or someone you know

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

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

United Kingdom

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

• mobilise ‘Together we care and thrive’

• Dementia UK

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

• Alzheimer’s Society (UK)

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

• ReMind UK: an independent charity getting ahead of dementia

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

United States

• Alzheimer Foundation of America

• The Association for Frontotemporal Degeneration

• Memory Cafés Support groups.

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

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

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

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

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

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

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

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

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

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

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Thank you!

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Anthology of Dementia Articles | Resources | Organisations.

Carer Mentor Articles:

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

Dementia Chapters of Recommended Reading

1. First-person direct experience with Dementia

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

3. The Caregiver’s Perspective and Experience

4. The Caregiving

5. Caregiving Techniques, tools and ideas including

   1. How to connect and communicate more effectively

6. Emotions in Caregiving: support, connection, disconnection

7. Finances

8. Tough decisions around Assisted Living

9. Dementia Health Care Directives

10. Articles with Recommended Resources

11. Fear of Developing Dementia

12. Helpful links and organisations

13. Books

14. Directory of the Authors | Writers | Publications included

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

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

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

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

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

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

  Judi has a wealth of experience as a counsellor:

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

  • Caregiving: Do you have a caregiver?

  • Caregiver Burnout

  • Crafting your Caregiver companion

2. Reference to the types of dementia and symptoms

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

The Middler

The ABC's of Parkinson's Disease

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

Read more

a year ago · 12 likes · 2 comments · Pam Johnston

3. The Caregiver’s Perspective and Experience

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

• My 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

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4. The Caregiving

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

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

• Dementia Diaries: Understanding how compromised minds work. By

• Sundowning. Dementia Diaries By

• Deciding what to wear. Dementia Diaries By

• Giving up the driver’s seat by

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

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

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

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

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

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

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

  We made mistakes. We learned. We adapted.

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

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

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

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

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

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

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

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

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

5. Caregiving Techniques, tools and ideas

• 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

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6. Emotions in Caregiving: support, connection, disconnection

• When Dementia Disconnects Love by

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

  And that makes me happy.”

• Being Robbed of Mom by

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

• Bridging. On dementia and emotional support by

  I think this hesitation is something we all go through.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

  And I broke.

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

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

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

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7. Finances

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

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

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

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

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

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

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

8. Tough decisions around Assisted Living

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

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

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

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9. 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.

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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. 

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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

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13. Books

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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•

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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.

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Thank you!

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

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

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

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

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

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

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To help you navigate the website:

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

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

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

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

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

If you’ve been caring for someone for a while

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

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

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

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

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

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

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

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

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

1. The Dementia Anthology

2. The Cancer Anthology

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

• An Anthology: Eldercare / Caring For Parents

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

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

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

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

Join in the Community Network discussions

• Eldercare/Caring for Parents Discussion and “Ask Us Anything” happens on the 2nd Friday every month. This is the first discussion on May 8th “Carer’s Recalibrations”

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

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

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

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Share Carer Mentor: Empathy & Inspiration

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.

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

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

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

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

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

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

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

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Table of Contents

1. The Hospital Go-Bag

2. The Caregivers Go-Bag

3. Admission Checklist

4. Medical Information Summary Checklist

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

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

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

The Checklist

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

✅ One change of clothes.

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

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

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

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

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

✅ Small towel & wash bag including

• phone charger.

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

• a small face cloth,

• small travel-size toothpaste and manual toothbrush,

• earplugs (it’s noisy on a ward),

• pens, post-its,

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

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

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

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

✅ A book or a puzzle book like Sudoku.

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

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

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

Think of it as your essentials, utility bag.

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

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

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

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

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

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

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

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

  • UK: Advance Care Planning Link to Macmillan Cancer Support

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

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

• Access to emergency contacts and medical information

• Load your phone with a book and games

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

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

✅ Protein bars and individually wrapped biscuits to avoid hypoglycaemia.

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

✅ Tissues and a small towel or a face cloth.

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

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

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

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

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

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

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

✅ Lip balm, and chewing gum.

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

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

Go-Bag Tips

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

• Put it somewhere anyone can grab it to go

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3. Admission Checklist

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

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

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

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

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

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

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

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

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

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

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

• Medications are usually locked in a drawer

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

• Check what medications are being given today.

✅ Check if your person needs the toilet before leaving

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

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

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

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

✅ Make sure medical staff have your contact details

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

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

Tips for the caregiver:

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

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

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

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

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

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4. Medical Summary Checklist

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

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

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

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

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

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

4. Home address

5. Insurance number and provider if relevant

6. Emergency contact

   • Name and relationship to the person

   • Mobile telephone number

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

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

9. Current medical summary:

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

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

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

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

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

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

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

11. Medication:

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

    • The date it was started

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

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

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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

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

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

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

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

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

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

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

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

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

10. “Leave It in That Room” By

Today’s ‘Letter from a Caregiver’ is by Bud Hager

While our caregiving situations are very different, I always feel a deep resonance with Bud’s articles. Perhaps it’s because his words articulate certain feelings, thoughts or situations I’ve struggled to voice myself. I don’t know if you’ll feel the same way; every caregiving situation is different. I’m just very grateful that you can discover more of his words through his letter today.

I found his writing in 2025 at “Our Little Kartoffel”.** He also writes at The Courageous Parents Network, which is, in his words, “a fantastic resource for exploring the world of raising children with disabilities and rare genetic disorders. Be sure to visit their site for more insights!”

** “I’m a dad to an extraordinary daughter—a little human with a slew of medical diagnoses layered over a child full of quiet wonder. Her primary diagnosis is pachygyria, but her life defies the limits of any medical binder. We call her Kartoffel. Our little potato.” - Bud Hager

Author’s Bio: Bud Hager goes by his second middle name (he has three) because it’s easier to remember and baristas never misspell it. Along with his wife he is a caregiver for their daughter, Emma, who has a rare neurological disorder. He believes in taking an active approach to advocating for his child and others like her. To this end, he sits on various advisory councils at Rady’s Children’s Health (RCH), volunteers on consulting and directing boards for various non-profit centers, and lends his writing skills where he can. He is also a professor of psychology and has a small private psychotherapy practice that is mostly filled by pro bono work for parents of newly diagnosed children.

Stay Hydrated

Dear Me,

You are sitting in a hospital room pretending to understand what the nurse is saying.

You are nodding at phrases like “bolus feed” and “extension set” and “flush before and after medications” while staring at a laminated diagram of a child’s torso with a g-tube in it. The nurse is patient. You hate that. Patience, in moments like this, feels humiliating. You want someone to acknowledge that this is absurd. That your daughter should not require a demonstration and laminated instructions to be fed.

You keep thinking the same stupid thought: We are really doing this. And you mean this literally. You aren’t being dramatic or waxing existential. You are really about to go home with syringes and formula and a backpack full of medical equipment because your child cannot reliably eat by mouth anymore.

You’ve already been doing this parent caregiving bit for years now. You even got yourself a decent little following on social media where people repost your content saying ‘THIS!’, one of your videos even got 3 million views! It’s amazing how all of that will inflate your sense of certainty. You thought you understood caregiving before this.

You did not.

I do not mean that cruelly. You had already learned things most parents never have to learn. You could discuss seizure rescue meds while making coffee. You could read pulse oximeters at three in the morning with one eye open. You had mastered the strange choreography of specialists, insurance appeals, emergency departments, and developmental therapies. You and your wife had become competent in the way people become competent when the alternative is catastrophe. And you took pride in this. Not the suffering. The adaptation.

You believed that if you paid close enough attention, loved hard enough, researched thoroughly enough, stayed humble enough, then maybe you could outwork tragedy. Or at least negotiate with it. The g-tube will feel like the moment that illusion finally tears. Not because it is the worst thing that will happen. Trust me it isn’t and won’t be. I won’t insult you by pretending this is the hard part. There are future nights that will rearrange your understanding of fear so completely that this version of you would not even recognize them as survivable. But this is the moment you finally understand that your daughter’s life is not taking a temporary detour before rejoining the road you imagined. This is the road.

And you are furious about it. Furious for her, mostly. Though not entirely. You are also angry because you can feel your old life collapsing and you resent being the sort of person who notices that while his child is suffering. You are ashamed that part of your grief is selfish. Ashamed that another part is aesthetic. You mourn the ordinary future with the embarrassing sincerity of a man who once thought ballet schedules and spilled juice boxes would be genuine inconveniences.

You are also carrying another shame you haven’t said aloud yet.

You think you should have known sooner.

You replay meals in your head like game film. The coughing. The fatigue. The long stretches at the table. The way feeding became work for everyone involved. You are convinced there was some hidden test of parental attentiveness and you failed it.

There is a scene I remember clearly.

You are standing at the sink rinsing out a syringe. It is late. Hospital late. The flickering midnight where time no longer behaves correctly. You look down at the syringe and think: I cannot believe this is our life.

Then, because you are who you are, you immediately hate yourself for thinking it.

Because she is still here. Because she is laughing sometimes. Because she still reaches for your beard with her tiny hand. Because gratitude and grief have become roommates and you think admitting one betrays the other.

I am writing to you now because eventually you will meet wonderful people who will ask you to write a letter to my younger self. Apparently this is the sort of thing people do when enough time has passed. We imagine ourselves as older and wiser, standing safely on the opposite shore, calling instructions back across the water.

I certainly don’t feel wiser, definitely feel older so I got half the assignment down. Anyway, here is what I would say to you:

“You need to stop trying to force your old vision of parenthood onto your life.

You think your suffering comes from the medical complexity itself, but much of it comes from the constant comparison between the life you expected and the life you have. You suffer more in imagination than in real life and keep measuring your days against that imaginary standard and then wondering why they fail to match.

They never will.

Your daughter is not a corrupted version of the child you imagined. She is not a deviation from the “real” story. There is no hidden, better life running parallel to this one. There is only this particular child with this particular body and this particular laugh and this particular way of leaning her head against your chest when she is tired. Once you stop demanding that your life become something else, you will finally be able to see the life that is actually here.”

That sounds wise, doesn’t it? Clean. Finished. The sort of thing people underline in books.

As I write it I distrust it immediately.

Not because it is false, most if not all of it is true. Rather I distrust it because it suggests wisdom works like information. As though I could simply hand you a sentence sturdy enough to carry you through the next seven years.

I cannot.

You are going to learn almost everything the only way anyone ever truly learns anything: through repetition and embodiment and exhaustion and love.

No one could have explained tube feeding to you in a way that mattered before you stood at the kitchen counter at two in the morning trying to remember whether medications can be mixed into formula. No one could have adequately described the peculiar intimacy of keeping another person alive through routine. No one could have prepared you for how quickly medical equipment becomes ordinary. Or how dangerous that ordinariness sometimes feels.

And if I told you now that there will still be beauty ahead, you would misunderstand me and would imagine redemption.

I do not mean redemption.

I mean beauty in the sense of your daughter sitting in the morning light while formula slowly moves through tubing and the entire room becomes briefly, almost unbearably quiet. I mean learning not to rush these feeds just because you are tired. Learning that efficiency is not always the highest good. Learning that care can become distorted when you try to optimize every moment.

I mean eventually sitting down sometimes instead of treating your own existence like an emergency response. I mean realizing that rituals matter precisely because so much else cannot be controlled.

You will start making coffee less fancifully but drink it more meditatively. You will actually cook more even though you will have less time and more terrible days. You will notice weather again. You will do things like these because you will learn that despair is greedy and you discover you must intentionally leave something outside its reach.

You will also become deeply suspicious of the stories people tell about families like yours. The inspirational, warrior narratives with their neat little moral diagrams where suffering produces wisdom in mathematically satisfying proportions. You will understand why people reach for those stories. Catastrophe frightens us. Randomness frightens us even more. Inspiration, remember though, is in those doing the observing, not those being observed.

But your daughter was never placed on this earth to teach other people gratitude. And you’ll forget this but your life is not admirable because it is difficult, you do not have a monopoly on suffering, and just being the parent of a medically complex, fragile, disabled, dying child does not make you a good person. You have to do the good part.

Most days are not cinematic anyway. They are repetitive and absurd and more than occasionally boring in many ways. You will spend shocking amounts of your existence discussing stool consistency. This, too, is part of love.

I realize as I write this part that I have slowly stopped giving advice. If I am honest, you would not take it anyway.

If I told you that you survive this you would hear survival as victory, it’s not. Some seasons are graceful. Some are ugly. Some you endure badly. There is no final montage where the music swells and you become the person all this was supposedly shaping you to be. You remain unfinished, thank God. I’m not writing to help you prepare or reassure you. You cannot prepare and reassurance has a terribly short shelf life. I am writing because I think the closest thing we have to mentoring our past selves is choosing how we inhabit the present.

The man you needed back then was not someone with answers. You already had experts and pamphlets and discharge instructions and a billion parents on the internet with their version of advice. What you needed was someone who could sit beside you without turning your life into a lesson.

I cannot travel backward and become that person for you but I can try to become him now.

That’s all I have for you.

Best,
Bud

PS - stay hydrated, you’re going to cry, a lot

The Closing Rapid Fire Questions from Victoria:

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

I’m not sure I do. Fear and uncertainty are as much, perhaps more, a part of caregiving as confidence and clarity. Allowing fear and uncertainty to inform and instruct instead of trying to extirpate them has helped me love and care deeper.

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

Of course that someone is Emma: her wondrous talent for making conversation without making it entirely about her trauma, her complete inability to live de mauvaise foi, and her amazing ability for bringing people together.

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

“And in the end, the love you take, is equal to the love you make.”

Prompt for discussion:

Why does society feel the need to turn caregiving, medical complexity, or disability into a “lesson” for others and how does this narrative actually harm parents and caregivers by placing an unfair burden on them to be “good” or “heroic” rather than just human?

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

The Premise: different relational dynamics within caregiving.

At its core, Carer Mentor offers heartfelt empathy for caregivers. The anthologies curated to amplify individual experiences 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, feelings, and vulnerabilities; our humanity.

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

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

The first discussion group, “Caregivers who are parents”, was on April 3rd. A team of 12 caregivers shared reflections and were ready to answer any questions. These discussions continue on the first Friday of each month and are hosted by a different team member. The latest: Holding Both: When More Than One Truth Lives in the Same Body (May), was hosted by Maria Messer

This article starts the second discussion group in the initiative: Eldercare/Caring for parents.

The Eldercare/Caring For Parents Collaboration Team

I’m pleased to introduce you to our 14 team members. Each person has a publication in which they share their thoughts on caregiving for an older family member, friend, or parent(s). Click each name to find out more about them.

1. Adrian Chung

2. Anna De La Cruz

3. Janine De Tillio Cammarata

4. Jodi Sh.Doff

5. Julia Yarbough

6. Kirbie Earley

7. Kirsten Mau

8. Sally Cave

9. Sarah Bain

10. Sarah Coomber

11. Sue Montgomery

12. Tina Matras

13. Viva Mogi

14. Kerri Forrest

Important details

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

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

Today’s discussion

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

2. Ask us anything or share your thoughts on my reflections below.

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

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

Caring About A Carer’s Recalibrations

Dear Friends, this weekend’s discussion falls on the sixth anniversary of Carer Mentor: Empathy and Inspiration and on the sixth birthday of my father, without him.

I launched the first version of this website on my Dad’s birthday because, as a doctor and geriatrician, he had cared for many patients over the years, and it seemed a fitting memorial to his work and our caregiving. I wanted to help others who were on their own rollercoaster, especially those caring for their parents.

At the heart of my mission was a drive to create a dynamic space for carers, not just to offer resources and useful information, but to connect carers with each other and share their experiences. Hence, the anthologies and other collaborations, like the Dementia collaborations.

Sharing ‘how-to ideas’ and thoughts about caregiving with other caregivers is a great way to provide practical support, but often, the focus is on the caregiving first and the caregiver second.

In this discussion, let’s place more attention on ourselves, the carer first!

It’s good to have a space to share our perspectives with people who are caring for their parents/eldercarers - in whatever form that takes. Whether at a distance, coordinating assisted living care, or hands-on in their home, it’s all caregiving in my view.

It’s not selfish or less important to focus on ourselves. We’re a whole person, tango-ing or tangling in this caregiving-and-receiving relational dynamic. Let’s tell others what may not have been told to us before. Yes to talking about real self-care, but there’s so much more than that, too.

We’re the ones creating the stability and predictability, yet beholden to their symptom changes, and the ‘beyond our control’ things, aka most things. Agile pivots require energy. Anticipating needs requires a special kind of vigilance. We’re the buffer, the facilitator, and the interface that calibrates the outside world to our parents' needs and care.

But we’re only human.

When we’re caring for another grown adult(s), simple things can get complicated quickly.

Years of parent-child relationship dynamics have to recalibrate under pressure. Their lifetime of how they like things, how they do things and knowledge is being asked to change, sometimes overnight. Personalities morph due to a health condition or shrink in the face of debilitating symptoms.

Our personal definition and understanding of our parents change over time, or perhaps caregiving brings dynamics into a sharper focus.

New dynamics emerge, whether we - or they- like it or not. And it’s not just with our parents but with everyone involved or on the periphery of the situation.

Responsibilities may be handed over to us, but not easily.

Agility is not just about how we respond to care needs and events. How do we care for those who cared for us?

Your story, your experience, and your voice can help someone else, and we’re here to listen and share with empathy.

Prompt for discussion

Since you started caregiving, big or small, can you share a moment of recalibration that changed how you think about something or how you do things, and why?

We each have our unique care situations. There’s no right or wrong. There aren’t any cookie-cutter solutions, panaceas, or quick-fix ideas. It’s the small moments that can illustrate the biggest learnings.

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

Dear Friends, it’s hard to believe that we’re already in May!

At the end of this week, Carer Mentor: Empathy and Inspiration turns 6 years old. I launched the website on my Dad’s birthday in 2020, the first without him. When I joined this platform, Substack, in October 2023, I felt that I could finally build the community 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. It feels a little weird looking back at previous editions and versions of the website. Figuring out how to build pages was a pain. I’m both relieved and appreciative of this platform’s functionality. It means I can focus on providing content, connecting with you, and building our community space. Of course, it’s also personally rewarding as my passion project and an easy way for me to feel less alone, while caregiving, too!

Thank you for being part of the Carer Mentor Community!

There’s been an annual spring clean of the website and a new collaboration initiative. In April, I launched the “Carer Mentor Community Network”, comprised of monthly discussion groups for carers by carers. I invited several caregiver friends to join me in answering any reader questions and sharing our thoughts.

The first Friday of each month, “Caregivers who are parents” meet, led by a team of 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. The April 3rd discussion was both revealing and deeply moving, thanks to the team members' vulnerable honesty. The next discussion was on May 1st, ‘Holding Both: When More Than One Truth Lives in the Same Body’. It was hosted by Maria Messer through her publication Holding Both. I hope you’ll read Maria’s article, which resonated deeply.

The second Friday of each month, “Eldercare/Caring for parents” will hold a similar discussion. The first will be this Friday, May 8th. Feel free to ask the team of 14 caregivers any question you wish, or reply to my discussion prompt. I’m intrigued to see your responses! Come join in if you can. Once the article is published, it’ll remain open, and we’ll reply. No pressure.

Both of these group discussion threads, like the ‘spring cleaning’ of the website, return to an initial premise for Carer Mentor: Care for the Carer. Often, the focus is on how to do the caregiving first and the caregiver second, because, of course, we’re all concerned about the medical needs, comfort, and care of our loved one. The ethos of my Carer Mentor work is to prioritise the carer, and then the caregiving. Hence, the revised format and structure of the desktop website:

There are several articles and themes that I’ve organised into a toolbox for Carers. Have a look around the “Care for the Carer: A toolbox of learnings”.

There’s also a new anthology, “Eldercare/Caring For Parents”, to tie in with the 6th year birthday.

Yes, it’s been a very busy month, including an intense week where the D-Dimer Test helped us avoid an emergency hospitalisation. Read more about the D-Dimer Test?

It’s no wonder that I was scrolling to distract my brain a little. I wasn’t looking for hopeful inspiration, but it found me. So, I’m passing it along to you. As the TED organisation says, these are “Ideas worth spreading”. ….And perhaps I like to ‘Pay it forward.’ The #13 This Caregiver’s April Watchlist: “Discovering hope within these gems” shared the work of some activists who inspire, build community, and whose generosity is infectious. I loved the talks about infectious generosity and another about acts of kindness becoming a global phenomenon.

AND of course, I can’t leave out the heartfelt letters of compassion that each of these authors shared with their younger selves April “Letters From A Caregiver” Thank you, ladies!

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

• “The Love Test” by Echoes of Memory by Sally Cave

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

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

• “Leave It in That Room” By Khadra Awomer

Two UK Awareness campaigns

Hospice care and Cancer awareness are important advocacy topics for me. Please take a few moments to read and share this information with friends and family. If you can, please support your local hospice. Thank you.

1. May 4 - 10 is “Dying Matters” Awareness Week. This year’s theme is ‘Let’s talk about Death and Dying’. In this discussion, we must discuss Hospice Care and care support in general. Contrary to what many people think, hospice care is 60% funded by charity. Already, hospices can’t pay staff, and beds are left empty

2. Bowel Cancer Awareness Month. (April) It’s a topic that I’m personally invested in, to encourage more people to get tested early. The passing of my close friend and my own scare last year underscores its importance.

Read more below.

If you’d like to support my work, consider using this 60% discount on a subscription forever. Carer Mentor content is an effortful gift that I’m passionate about giving to you freely.

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Hospice UK’s Dying Matters Awareness Week 2026 is 4-10 May. This year’s theme is ‘Let’s talk about Death and Dying’.

Talking about dying is particularly important right now. Hospices in England provide care for 270,000 people each year – sometimes in inpatient units, but more often, in people’s homes. The holistic care they provide includes highly specialist palliative and end of life care. Hospices also support tens of thousands of families and loved ones each year, including with bereavement support.

The majority of this care is funded by charity – marathon runs, gifts in wills, and charity shops. In fact, in England, on average, the NHS only funds around 40% of the care that a hospice provides.

The Problem: Marie Curie, the leading end-of-life charity in the UK, revealed these disturbing statistics from its recent research2

The research funded by Marie Curie goes on to say that almost 1 in 3 people don’t get the palliative and end-of-life care and support they need, with gaps even wider in disadvantaged communities. (How our research exposed the UK’s unmet need for palliative care, 16th February, 2026)

Nearly six in ten hospices have made or are considering cuts to frontline services this year. This means more pressure on an already creaking NHS, it means people dying in corridors, people dying without pain relief or privacy.
This cannot continue. Hospices want to be there for everyone who needs their care and support.

Charlie King, Director of External Affairs at Hospice UK, as part of their said, “We’re calling on the Government to act now by implementing Hospice UK’s four-point plan for fair funding, including fully funding the specialist palliative care we provide. A commitment of £112.5 million in additional recurring revenue funding would be a vital first step, preventing further devastating cuts and enabling hospices to continue delivering the care that patients and families rely on.”

Watch the video and read more via this link

April was Bowel Cancer Awareness Month in the UK.

Key messages I shared to show how easy and painless it is to get checked.

1. Awareness: Know the symptoms of bowel cancer. Don’t doubt yourself. Don’t let poo be a taboo. Check your parents, too. Consult your GP/PCP.

There are bowel cancer screening programs, but don’t wait to get called to get checked if you have nagging symptoms. Track symptoms, report them to your doctor. We need to advocate for ourselves.

The Faecal Immunochemical Test (FIT) test is usually the first step. It’s a home-based screening kit that detects hidden blood in stool, which can indicate early bowel cancer or polyps. I received it by mail, followed the instructions and sent the test kit back. Easy, quick and simple. If positive, you’ll need to inform your GP for the next steps. Find more information at Bowel Cancer UK or Colorectal Cancer Alliance US

2. Awareness to Action: If in doubt, get tested. Don’t deprioritise your needs. You deserve to be sure of your health.

Why I decided to get tested in 2025: I had nebulous, on/off abdominal pains for a couple of months. I had no idea if these were ‘usual perimenopausal’ symptoms or something else. A very close family friend was diagnosed with bowel cancer in mid-2024. She passed New Year’s Eve. She was one of my favourite people. Her passing underscored my own worries. Worries were compounded by my family’s medical history of cancer: colon, bowel, endometrial, ovarian, bladder, lung.

Even when time is limited & it’s hard to plan, get tested. Research shows that more than nine in 10 people survive bowel cancer when it’s diagnosed at the earliest stage.

3. Learn from other people’s experiences: resources, recommendations and articles.

• A colonoscopy is a no-brainer, simple check. I wrote this resource article for anyone new to having a colonoscopy.

• Read more about getting tested and the experiences of six people in this article I wrote last year: Bowel Cancer Anthology

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

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

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

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

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

Other anthologies include the Dementia Anthology or the Cancer Anthology.

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

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

Anthology Table of Contents

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

1. Eldercare / Caring for your parents

2. Attitudes and mindsets of caring for your parents

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

4. “I’m a carer/caregiver!”

5. Initiating discussions about your parents’ care wishes

6. Aligning on priorities together

7. A sudden diagnosis, crisis or emergency

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

9. Be prepared for an emergency or hospital trip

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

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

12. Discussing everyday finances, bills and banking

13. Care support: where parents live.

14. Care support: orchestrating support at home

15. Siblings, family dynamics

16. Long-Term Caregiving

17. Enabling comfort and quality time

18. The giving and receiving of care

19. A crisis or emergency, hospital and discharge

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

21. Palliative, Hospice/End-of-Life

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

23. Caregiving for your other parent

24. Carrying grief as life continues

25. Support organisations and book recommendations

Eldercare / Caring For Parents

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

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

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

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

Table of Contents

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

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

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

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

  

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

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

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

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

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

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

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

Caring for your parent(s) from a young age

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

“I’m a carer/caregiver!”

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

  • Carers UK: Guides and Tools

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

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

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

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

  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

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

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

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

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

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

Table of Contents

Discussing everyday finances, bills and banking

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

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

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

Table of Contents

Care support: where parents live.

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

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

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

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

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

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

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

Table of Contents

Care support: orchestrating support at home

US-focused articles

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

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

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

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

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

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

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

• Caring Bridge “In 1997, our founder, Sona Mehring, had the idea for CaringBridge when she offered to support her good friends, JoAnn Hardegger and Darrin Swanson, keep everyone updated after the premature birth of their daughter, Brighid.

  After making emotionally taxing and time-consuming calls, Sona knew there was a better way. She created a website to keep everyone connected and surround JoAnn and Darrin, with support - and CaringBridge was born.

UK-Focused articles

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

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

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

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

• Carers UK information about Finding Care Agencies and Care Workers

Siblings, family dynamics

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

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

• UK Government

• Citizens Advice

• Marie Curie PDF

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

US information

• US Government

• National Institute of Aging

• AARP

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

Caregiving for your other parent

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

Carrying grief as life continues

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

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

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

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

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

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

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

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

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

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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Dying Matters Awareness Week 2026, a Hospice UK-led campaign, is from 4-10 May.

This year's theme is 'Let’s talk about Death and Dying'. “27% of people find it hard to talk about death with family or friends, and 30% bottle their feelings up. If we don’t talk about death and dying and bereavement, it can be harder to cope when we experience them.” (Polling commissioned by Celebration Day in 2025)

In my mind, I can’t separate this campaign from recent news and events about social care and the Assisted Dying Bill. It’s felt frustrating to me, as an unpaid carer in the UK. This excerpt from the recent press release by Hospice UK on April 24 sums up the situation:

Charities call for palliative care reform as assisted dying Bill falls. Hospice UK, Age UK, Marie Curie, Sue Ryder and Together for Short Lives call for urgent action in an open letter to Wes Streeting, as nearly one in three people die without the care they need:

“Despite months of polarising debates in Parliament about the bill there was one consensus – that palliative and end of life care provision needs to be reformed.

In their open letter to the Health Secretary, Wes Streeting, they remind him that he too has said: “Regardless of where people stood on the debate about assisted dying, the one thing that united everyone across the House was a belief that palliative care needs to be so much better than it is today, and that is what we will work on together”. 

To anyone who isn’t caring for someone in the UK, this all may feel far removed from their everyday life. However, I’d encourage everyone who isn't aware of how to access care in the UK to start exploring what’s available in your local area for you and your loved ones before a crisis occurs. It’s separate from the NHS, not free at the point of need and availability, quality and services vary widely across the UK.

Disclaimer: This information is based on personal experience and from the perspective of a carer, not a care provider or social care expert. Always check with your GP about what’s available.

Where to start. Care Support in the UK

If you need care support in your home, ask your GP for advice about what their practice could offer, along with recommendations and referrals for equipment and care agencies. They may refer you to an occupational therapist or suggest a visit from a district nurse, depending on your needs.

Receiving equipment is one thing. Having hands-on care, support, or monitoring is another.

Anyone with assets over £23,250 must pay for their own care support. Below this threshold, contributions are made by the person needing care and the government on a sliding scale. If the individuals requesting care have long-term complex health needs, the NHS may also contribute to funding.

“Social care is not free at the point of use. It is not part of the NHS. Anyone who requests publicly funded social care must undergo a needs assessment and a means test, and only those with the highest needs and the lowest financial assets are likely to receive support.” (Kings Fund “Social care in a nutshell”)

In essence, anyone needing personal care support who has assets over £23’250 will be searching and coordinating with private companies and charities to find it. As demand grows and service availability is limited, coordinating care is challenging. Regardless of whether the customer is self-funding or the local authority is contracting the care, the providers can be the same for both groups. There are not enough care providers and personnel. The social care vacancy rate in England is falling, but remains higher than the overall unemployment rate (The Kings Fund April 8, 2026). There are more care homes and care providers in the South of England compared to the North. Care support is a postcode lottery.

Social care reform is overdue.

Baroness Casey, who’s leading the new independent commission on adult social care, said that Adult social care in the UK is being forced into a long-overdue “moment of reckoning”. She argues that, unlike the NHS, social care has never had a clear national “creation moment”: no shared agreement on what it is for, what people should expect, or who should pay. (Baroness Casey calls for a ‘moment of reckoning’ on adult social care 5th March, 2026). While Baroness Casey has written to the Secretary of State for Health and Social Care asking for some immediate government action, the commission’s full report will only be delivered to the government in 2028.

Transactional, time-bound care support requires specific directives.

It’s worthwhile detailing the specifics of what care support is needed (use this AGE UK article). Key questions focus on daily tasks, health, safety, and personal goals, enabling tailored care rather than passing a test. These assessments evaluate difficulties in areas like washing, dressing, cooking, and home safety.

Bear in mind that care workers are allocated time to complete specific tasks. They are given a certain number of ‘calls’ in a day. Within that time, they may need to make “call notes” to check-box completed tasks.

Here are some of the questions I asked different service providers after I reviewed the website, testimonials, and CQC reports:

• “What can be offered, at what time of day, with what frequency?”

• Understand whether there is clinical nursing support or not. For example, an agency may not provide wound care and catheter changes because these require clinical training. District nurses can offer some support.

• What are care staff trained and allowed to do and not allowed to do?

• Walk through an emergency scenario - who’s called when and why, and when are emergency services called?

• Ask if it will be a different person each visit? How big is the team?

• Who do you call if someone is late or if you need to change/cancel a visit?

• Who do you call to discuss an issue?

• Ask about insurance, training, and reference checks

When care needs increase

We contacted hospice care several months before my father died. Of course, we didn’t know that then. We only knew things were even more fragile. Paramedic calls had increased. Dad was shouting out for me every night, if not, several times in the night. I had little or no sleep.

The care support from local companies was not enough to meet our needs. In unpredictable circumstances, their services often disrupted the calm we built into the routine more than they helped. We were lucky that the local hospice charity could offer overnight monitoring. I was able to get some sleep, even if it was with one ear and eye open; it made a huge difference. We also found a private, self-employed care aide via a friend’s recommendation.

The reality is that vacancies in private care homes and hospice facilities (if there are any in the local area) have waiting lists. In-home care support depends on the availability and offerings of your local hospice, private agencies or other charities in your area.

Challenges to care support in palliative and end-of-life care

Did you know that UK hospice care is 60% charity-funded?

Hospice in the UK is mainly funded by charities. Money from donations, gifts through wills, and sales of second-hand goods in charity shops funds end-of-life care. In England, on average, the NHS funds only around 40% of the care a hospice provides.

If you don’t live in the UK, you may be surprised to learn how people are accessing/unable to access palliative, hospice/end-of-life care. Charities can’t meet the rapidly growing needs.

On the 24th of April, the House of Lords “ran out of time” debating the assisted dying bill. A frustrating outcome after passing the House of Commons debates, given the importance of the subject, and especially given the current state of adult social care and hospice care in the UK.1

I recommend reading this article by Dr Rachel Clarke 2 “As a palliative care specialist, I’ve witnessed the human tragedy of our end-of-life care crisis. While the government debates assisted dying, palliative care is an afterthought. And many more people face death without the care and support they need.” (Thanks, )

I wondered “How other countries have designed and implemented assisted dying”, I found this report by the Nuffield Trust (9 May 2025). It’s an analysis of assisted dying policies across 15 jurisdictions in 9 countries, highlighting practical and operational differences in implementation and the evolution of these systems.3 For example, MAID in Canada (a defined national process and eligibility route).

A few days before the bill was debated, Marie Curie, the leading end-of-life charity in the UK, revealed these disturbing statistics from its recent research4:

The research funded by Marie Curie goes on to say that almost 1 in 3 people don’t get the palliative and end-of-life care and support they need, with gaps even wider in disadvantaged communities. (How our research exposed the UK’s unmet need for palliative care, 16th February, 2026)

Hospice UK5 a charity representing the hospice sector, which includes Marie Curie, is also warning that hospices are “on the brink”, with many cutting or considering cutting frontline services as costs surge and demand rises.

Hospice staff from across England gathered in Westminster on 15th April (2026) to demand urgent action on funding, as services are cut and pressures reach breaking point. [From the Hospice UK Website, Press Release]

The intervention comes as nearly 60% of hospices in England have already made, or are planning, cuts to frontline services this year. Financial pressures have forced many to make valued staff redundant, while 380 hospice beds lie unused, primarily because hospices cannot afford the staff to run them. At the same time, specialist community visits have fallen by 150,000 in a year, despite rising demand.

At the same time hospice costs are rising steeply. They spent £1.2bn on staff costs in 2024, but will spend over £1.4bn on them in 2026/27.6

Hospices are increasingly being left to plug widening funding gaps through charitable fundraising - an approach that is simply unsustainable. Hospice leaders warn that without urgent support, more services will be lost, and more people will miss out on vital end of life care.

Charlie King, Director of External Affairs at Hospice UK, said: “On 15th April, hospice staff from across the country will come together in Westminster to send a clear message to Government: the current funding model is failing, and patients are paying the price. (April 15 Press Release)

“The Government’s commitment to a Modern Service Framework for palliative and end of life care is welcome, and the sector stands ready to help deliver it. But many hospices cannot wait. They need urgent, sustainable funding now to prevent further cuts.

“We’re calling on the Government to act now by implementing Hospice UK’s four-point plan for fair funding, including fully funding the specialist palliative care we provide. A commitment of £112.5 million in additional recurring revenue funding would be a vital first step, preventing further devastating cuts and enabling hospices to continue delivering the care that patients and families rely on.”

Read the letter delivered to Downing Street, signed by over 25 hospices.

April 27, Hospice UK released this video. Please share this

Nearly six in ten hospices have made or are considering cuts to frontline services this year. This means more pressure on an already creaking NHS, it means people dying in corridors, people dying without pain relief or privacy.
This cannot continue. Hospices want to be there for everyone who needs their care and support. Read more about “Why do we need fair funding for hospices?”

At the end of the day, literally and figuratively, there is an onus on unpaid carers, family and friends.

For palliative and end of life care, this can also mean a relentless coordination at the worst possible time—scrambling for care that is unavailable, delayed, or fragmented across providers. Read the story of Kirsty Parsons and her husband, Jim: ‘My husband finally got full-time care – he died a week later’ 28 April, 2026)

It’s no wonder that the number of unpaid carers is growing.7 The need to care for our loved ones can push more people to leave work. It’s not hard to imagine how the lack of reliable care support can contribute to a negative impact on the economy and declining health of the population, as more of the working population become carers.

In fact The Health Foundation published this report, “Healthy life expectancy trends in the UK: a watershed moment” on 26 April, 2026. [By Andrew Mooney, Anne Alarilla, Francesca Cavallaro.]

You can find more comprehensive resources and information at the Carers UK website: “Arranging Care and Support for Someone”

Question:

Have you organised care support or hospice care for someone in the UK? What did you learn from the experience?

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

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers 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

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

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

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

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

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

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

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

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

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

Today’s ‘Letter from a Caregiver’ is by Khadra Awomer, author of “Dementia Who”

I met Khadra in December 2025. Her mother had passed earlier in the year. I realised she’d been caring for her mother for a long time—a courageous and harsh experience given the cruel realities of Dementia.

Khadra shares her personal experiences of caregiving and dementia research in her publication. Here are a couple of her articles:

• Between Christmas and New Year: Things I’m Leaving Behind

• Caregiving Left Me Broke. Why Does Nobody Talk About This?

Khadra’s letter is not just sharing soulful empathy with her younger self, but also an insightful study of her family dynamics and why she and they behaved as they did.

Thank you, Kat, for voicing what’s hard for some to recognise, let alone articulate. Your compassion and understanding shine, especially in these words —a quote from your letter:

No spoilers, except to say it’s beautiful to hear how you enabled creative, happy times for your Mum; a liberation from those dynamics and that room! Bravo.

Thank you for sharing your letter with us, Kat.

Author’s Bio: Khadra Awomer spent thirteen years caring for her mother through dementia. She writes about her caregiving experience, grief, and the complicated business of rebuilding life after caregiving. She now translates dementia research and news into plain English alongside personal reflections in her Substack ‘DementiaWho’

Leave It in That Room

Dear Kat

I’m writing to you just after the day everyone stood in Mum’s living room and told you not to take her to the memory clinic. You’d spent two years struggling to get her to this point and that day changed the way you cared for mum for a long time after.

You won’t forget this day, the argument, the shock of how quickly support disappeared, and the look on Mum’s face when the word crazy was said out loud.

You’re wondering whether you pushed too hard, whether you should have handled it differently, and whether being right was worth what it cost. You’re replaying it, trying to work out if there was a way to protect her from the fear she felt that day.

I’m not here to correct you or smooth this over. I just want to explain what you didn’t know yet about fear, and cultural expectations and how they shaped your caregiving journey.

At that point, you were living with mum, watching her closely, tracking small changes, noticing the repetition, the slips, the increasing falls, and seeing her trying to hide her confusion. You weren’t certain it was dementia.

You were scared it could be something else, something worse and more immediate. Luckily, mum allowed you to go with her to the doctors, and that gave you a chance to speak to them privately about your concerns.

Back and forth you went, appointment after appointment.

Eventually she agreed to a basic assessment. The doctor believed it was some form of cognitive decline and needed to escalate it to the memory clinic. Mum wasn’t having any of it. She was fine. There was nothing wrong with her memory. You didn’t know at the time how annoyed she was about some of the things she was asked. She thought she was being treated like a baby.

You were lucky the doctor had known you both for years and could see the changes that mum didn’t want to speak about. Then you did what you do best, researching everything about cognitive decline and looking at all the possibilities.

You thought you were doing the right thing by involving the family early. You laid out what you’d noticed. The same things they had seen, but not in the same way, day in day out as you did living with her.

You explained what a memory clinic was and why an assessment mattered. You believed that if they understood the process, they’d support you. When they agreed, you felt relief.

Because everything you had read said the same thing: bring support.

Months in advance of the appointment, you agreed who would go with you, and you started to drop in reminders to mum so she would get used to the idea rather than being surprised by it on the day. She was still able to retain information for a while back then.

What you didn’t understand yet was how much language shapes fear.

In our culture, there isn’t a word for dementia. The word we have doesn’t describe an illness. It labels a person. It turns something medical into something shameful. Something to hide. Families learn early to manage these things quietly, within the home. Back then you didn’t know of other families going through the same thing because nobody talked about it.

The day before the appointment, a family meeting was called. You thought it was to go over a battle plan for the day. Just logistics. Who would drive, what time you’d leave, how you’d manage the forms.

Instead, it became an argument. In front of mum.

You didn’t know yet how easily they would use her fears against you. You knew mum’s fear of scans, and that was pulled into the argument. Someone repeated something mum had said privately to them about the doctor’s questions she’d been asked before, how they felt small and embarrassing. All of this was used as proof that you were pushing her into something she didn’t need.

No one had bothered to learn what an assessment involved.

Then the memory clinic’s location became the focus. They’d moved from the main hospital to the other side of town, to a hospital with its own history. You tried to explain that it didn’t matter that it was in a separate building on the same grounds. You had worked so hard not to use the word everyone else used for that place.

But then someone said it.

“Mum, you’re going to the crazy hospital.”

And that was it.

You didn’t need her to say anything. You could see it. Her face changed. You knew you had lost that moment. Still, you didn’t stop. You said you would take her on your own, hoping she would still come with you.

But what stayed with her wasn’t your reassurance. It was that word. What you learn later about her fear of being left there will stay with you for a long time.

That night, she was frightened. You tried to calm her, but you were shaken too, and lay awake thinking about how easily fear could undo all those years of preparation to get to this point.

You replayed everything. The shouting. The words. You wished you’d pulled back. You worried about how much damage it had done to mum’s trust in you.

That was the moment you realised that family support was conditional. That when it came down to doing the hard stuff, you’d be alone.

What you didn’t understand then was that this was the first time you stepped outside what was expected. Not just within the family, but culturally. You were asking people to face something they had been taught to hide.

You weren’t wrong for insisting. You weren’t cruel for pushing forward. But Mum was hurt in the process, and that’s the part that kills you.

You will replay that day more times than you expect. You will wonder if there was another way to say it, another way to handle it. You will question whether advocating for her came at the cost of her trust, especially when you later learn how deeply she feared being left alone, locked up in that hospital.

That’s not on you. That was them making it all about their fears and using that to try to scare her into not going.

But what you didn’t see then was how much that moment shaped you.

You’ll see this pattern repeat over the years. Them stepping in, showing disapproval, saying outright that something shouldn’t happen when it was about mum’s care.

You didn’t become cautious later by accident. You learned it here. You learned to be careful about what you shared and with whom. You learned that they could step in with strong opinions, blanket judgments, without ever taking on the responsibility themselves.

And for a long time, that made you hesitate, held you back from doing things that were outside our family & cultural norms.

Until it didn’t.

You reached a point where the cost of holding back became too much. You could see what staying within those boundaries was doing, how much it was limiting her world, and yours. And once you saw it clearly, it became harder to keep justifying it.

You didn’t ask for permission. You didn’t tell anyone. You just started to change things, and you did it sneakily, some might say.

You made sure Mum did something outside what was expected every day. You found ways to get her out, to engage her, to give her moments that weren’t defined by fear or decline. Art classes. Singing sessions. Small trips. Places and mixed activities that would have been dismissed, disapproved of as ‘not culturally appropriate’, if you had told them about it. What we did might sound like hardly anything to others, but it was so much more to us.

And those moments mattered more than you realised at the time.

Her laughter. Her concentration. The way she created something from nothing with one hand in art class. The parts of her that were still there, still responding, still present.

None of that came from doing what was expected. It came from choosing her over what other people thought should happen.

You’ve carried that day for a long time. The guilt, the second-guessing, the feeling that you got it wrong for far too long. But you didn’t, you changed things. You were trying to do something that went against fear, to face the truth and move forward while everyone else was against it. That was always going to come at a cost. What matters is that you kept going anyway.

So leave the guilt where it belongs, in that room, on that day.

Because everything that came after shows you were never wrong about what she needed.

Kat 💜

The Closing Rapid Fire Questions from Victoria:

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

Research has been my main tool helping calm my fears by gathering a well-rounded perspective on each situation. I also rely on morning pages, where I pour out everything that’s on my mind, then tear the pages and let them go to reset for the day ahead.

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

There are people in my life whose courage just astounds me. I also admire one relative who is a fantastic peacemaker and has an amazing ability to build bridges. And finally positivity, that infectious optimism that inspires action and makes the hard work worthwhile.

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

Everything will be okay in the end. If it’s not okay, it’s not the end.

Prompt for discussion:

What did caregiving teach you about the people you thought would show up?

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

The Short Back Story! After a career climbing the corporate ladder, I made a head-heart-gut-aligned decision to help my Mum care for my Dad. He had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.

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

Why I’m here:

1. The Premise - my rollercoaster journey

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

3. The Carer Mentor Website Of Empathy and Inspiration.

4. Building A Community Support Network.

5. Resonance with the mission. Recommendations.

1. The Premise

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

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

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

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

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

2. The Mission

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

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

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

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

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

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

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

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

3. The Carer Mentor Website Of Empathy and Inspiration.

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

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

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

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

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

There are several Anthologies. For example:

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

4. Building A Community Support Network.

There’s a very human paradox of caregiving: the individuality of our personal situation and, at the same time, our universal common humanity. On the one hand, our individual circumstances, struggles, cultures, values, and backgrounds make our experiences unique. On the other hand, we’re united by universal life experiences: birth, death, emotions, and vulnerabilities; our humanity.

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

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

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

For example: Caregivers Who Are Parents. This is a monthly discussion where parent caregivers meet online and add comments around a particular prompt or topic.

Starting on May 8th, a new monthly discussion about “Eldercare/Caring for parents”.

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

A small review affirmed the purpose:

138 publications recommend Carer Mentor.

Here are some of the comments:

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

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

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

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

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

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

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

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

You can read more here.

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Dear Friends, I wasn’t looking for hopeful inspiration, but it found me. So, I’m passing it along to you. As the TED organisation says, these are “Ideas worth spreading”.

….And perhaps I like to ‘Pay it forward.’

What I Got Wrong About Changing the World | Malala Yousafzai | TED

Malala Yousafzai has spent her life advocating for girls' education — surviving an assassination attempt at 15, meeting with world leaders and then watching hard-won progress collapse when Afghanistan fell to the Taliban in 2021. That moment of despair forced her to completely rethink what it means to create change, and what she discovered replaced her shattered optimism with something more powerful and more honest. Hear how to keep fighting for the future you want, even when hope feels lost. (Recorded at TED2026 on April 14, 2026)

The last words of her speech have lingered with me these last few days. A recurring theme I’ve encountered this year is around the idea that hope is not wishful thinking or a goal, it’s part of the actions we do, and what we create, together, in the here and now.

The Granny Grommets | Award-Winning Surf Documentary | Finisterre

Summary from YouTube: A group of older surf enthusiasts proves that the ocean is for everyone, regardless of age. Discover the tight-knit community of the Granny Grommets as they share their passion for the waves and the profound support they find in one another through the challenges of life.

“A grommet, in surf lexicon, stands for a surfing newbie, usually a younger person. The Granny Grommets, however, are claiming the term for themselves, ignoring the looming threats of sharks and concerns of their worried offspring to embrace the waves, with bodyboards in tow. The group, based in the coastal town of Albany in Western Australia, was formed in 1999 and has been growing from strength to strength ever since...to date there are nearly 90 members taking to the waves every Friday morning, come rain or shine!” (April 11, 2026)

The only rules they have: be over the age of 50, take the introductory ocean awareness and bodyboarding course and have fun!

They’ve built a beautiful community group of women, who support each other through life challenges. I love that they invented the “Booby Board.”

Radical Neighbouring – The Farm Where Nothing is for Sale By Campfire Stories (June 1, 2025)

Summary from YouTube: What happens when humans stop being consumers? How can communities feed themselves and each other without buying or selling food?
The award winning documentary "Radical Neighbouring" follows Sand River Community Farm in upstate New York, a living experiment in gift economy, sustainable agriculture, and community building. When farmer Adam Wilson was offered $500K from a community member to take this land off the market, the farm became a place where food is freely offered to neighbours and strangers alike. Welcome to the farm where nothing is for sale!
This film explores radical neighbouring, gift economy, community farming, non-commercial food systems, sustainable living, and alternative economies, showing how generosity and shared resources can reshape the way we live.

It's Time for Infectious Generosity. Here's How

By Chris Anderson1 | TED (January 9, 2024)

Summary from YouTube: What would it take to make generosity infectious?

What would happen to humanity if generosity went viral? Sharing transformative stories from around the world, head of TED Chris Anderson outlines why the time has come for the internet to realize its power to supercharge small acts of kindness, changing lives at a scale never experienced before. Learn how to cultivate a generous mindset — with or without giving money — and get inspired with tools to amplify your impact. “Be brave. Give what you can, and then be absolutely amazed at what happens next,” Anderson says.

There are many elements that make this one of my favourite TED Talks: the shoutouts and reference to the work of others, the humanity of it all, the tribute to his mother’s wisdom, the generosity of Chris Anderson to give this talk after the recent passing of his mother, and of course, the beautiful concept of making generosity infectious!

Here are a few quotes I’ve noted in my journal from the talk:

"TED’s mantra: ““Be brave. Give what you can, and then be absolutely amazed at what happens next.”

“...we human beings are wired to respond to generosity with generosity.”

3 drivers of infectiousness:

• unlocking authentic human emotion

• creativity, the wilder the better…spark peoples imagination as well as their hearts

• courage

“If you commit to a journey of generosity, sooner or later, two amazing companions will join you on that journey. Journey mates. Their names are meaning and happiness.”

This reminded me of a film that’s always at the back of my mind…”Pay It Forward.” …and just look at that cast of actors

How acts of kindness sparked a global movement (December 15, 2023)

"We underestimate the power of our own generous actions," says Asha Curran, CEO of the global generosity movement GivingTuesday. Sharing stories of people making a difference through simple acts of kindness, she shows how generosity, even in its simplest forms, can be a transformative force — and explains why we all benefit from a world grounded in giving.

An example of infectious generosity, that’s become global

Asha describes “Radical Generosity” - where radical relates to the root or basic nature of something, such as a radical difference in opinion. So here, ‘radical generosity’ means that Generosity is at the root of our actions and behaviours.

This generosity can make us feel happy. We underestimate just how good these acts of kindness are for our wellbeing.

Small acts of service, radical generosity are not at the top of our social feeds, but they’re everywhere.

“The algorithms just don’t put them at the top of our feeds. But they’re there. And if we pay attention, then they remind us that ordinary acts of giving are actually extraordinary.

They remind us that generosity is not a burden. It’s a gift. And it’s an antidote. It’s an antidote to our fear and our anxiety, to loneliness and isolation, to outrage and indignation. And they remind us that we have this tool accessible to every single one of us every day, which is the power to change someone else’s day, or maybe even life for the better.

And when we use that tool collectively, we can build a more joyful, more equitable and more peaceful future. And that does not seem like too radical a thing to imagine.” - Asha Curran

Lastly, because I love big orchestra pieces:

Raye - Nightingale Lane (February 26, 2026)

Other ComfortZone Watchlists

What could you do to inspire generosity in others, and make it infectious?

How can we spread more hope?

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

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers 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

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

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

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

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

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

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

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

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

Today’s ‘Letter from a Caregiver’ is by Tina Matras

I met Tina last year. She was sharing articles about caring for her Dad. I was particularly drawn to how she made the holiday season and travel possible for both of them.

Her articles offer practical advice, tips and examples of typical caregiving situations. I recommend reading this article, the first of a series where Tina offers new caregivers hard-won wisdom. I’m New to Caregiving. Where Do I Start? Oh, Crap! I’m a Caregiver, Part 1: Practical first steps for caring for an aging parent or elderly loved one when you’re new to caregiving.

Author’s Bio: Tina Matras has been a caregiver for elderly family members for more than 25 years. After 18 years in corporate technical writing and editing, she stepped away to freelance as a ghostwriter and developmental editor—a shift that gave her both the flexibility caregiving demands and the freedom to pursue a longtime passion. She created to help anyone who’s found themselves in the caregiver role—often unexpectedly, just like she did.

But You Will: A Letter to My Younger (Suddenly) Caregiver Self

Dear Tina,

You’ll never be someone who enjoys talking on the phone. While your friends spend hours on the phone, you’ll prefer to talk in person because it makes conversations more real. But your dislike of using the phone will go from a simple preference to a blood-pressure-raising, shoulder-tensing response every time the phone rings.

That’s because two phone calls, years apart, will change your life.

The common thread? They’ll both throw you into unpredictable caregiving situations you never saw coming.

The first call will be a stranger announcing that your parents have just been in a car accident. And even though you helped care for your grandparents, including your grandpa with dementia, that phone call will be the one that truly makes you a caregiver because everything will depend on you from there on out.

Dad will suffer a traumatic brain injury that will leave him with anxiety and an inability to rationalize through tense or unexpected situations. His calm, go-with-the-flow demeanor will fade away, replaced with a man who comes to depend on you like a safety blanket more and more with each passing year.

Mom’s physical injuries will be minor, but her emotional and psychological injuries won’t heal. She’ll become afraid of everything and cling to you like a nervous toddler clings to her mother’s leg.

The second call will come 13 years later, and it will be worse. A doctor will inform you that your mother has stage 4 terminal cancer that has overtaken her body. The announcement will blindside everyone.

She’ll choose treatment, and while you will pray for a miracle, and believe God will do it, you’ll wonder every day if the treatment is worse than the diagnosis, because she will become so incredibly weak and sick.

The Crushing Weight of Caregiving

Once you get over the shock of that first phone call, you’ll think you can handle it. After all, you just spent ten years living and working in the gang-driven neighborhoods of inner-city Chicago. You’re used to middle-of-the-night crisis calls, emergency rooms, and chaos. You handled it with calm and rationality. But not this. This will leave you shaking and sobbing in your car more times than you can count.

Caregiving will consume your thoughts, steal your sleep, and send your hormones so far out of whack that your doctor will say, “I’m not sure how you’re still functioning. I’d expect you to be in the hospital with labs like these.”

But even though it will be the hardest thing you’ve ever faced, by far, you’ll find moments of joy, and you’ll get time for special moments with each of your parents that you wouldn’t trade for anything.

You’ll wake up some mornings one-hundred percent certain that you can’t make it through another day. But you will.

You’ll face decisions and contemplate each one, thinking that it’s the one that’s finally beyond your capability, and that you won’t be able to determine the best course of action. But you will.

You’ll have to learn how to care for a parent medically in ways you never could have imagined, certain that you won’t be able to manage it all. But you will.

You will do all of it, but not because you’re smarter, more capable, a hero, a super daughter, or anyone special. You’ll do it out of love.

You’ll learn most of it through trial and error. You’ll make mistakes. You’ll have victories. You’ll wish it would be over and then cry yourself to sleep for thinking such a thing because if it’s over, it could only mean one thing, right?

But even though you feel crushed beneath the weight that gets heavier with each passing year, you’ll look in the mirror one day and realize you’ve gotten stronger. It won’t look like bigger muscles or a more toned physique. You’ll see it in your eyes and your expressions. There will be a strength and resilience there that can’t be learned. It will be the kind that comes from years of doing hard things. Carrying that weight will build up your strength, not diminish it.

The Curse of Perfection

If there’s ever a time when we should be able to do something perfectly, it’s in parenting and caregiving.

But perfection is a myth this side of heaven.

Hear me when I say: Perfection is not your goal.

Mom was a defeated perfectionist, almost paralyzed by the curse of perfection in her later years. She knew she couldn’t do something perfectly, so she did nothing. And by the time she realized how detrimental that was to her and her loved ones, it was too late.

So she wisely and lovingly taught you not to be like her.

You’ll struggle with that because while you’ll understand that perfection isn’t the goal, you’ll feel like you’re throwing your hands up in defeat every time you accept less.

But you’ll learn to accept “good enough” because survival and your sanity demand it. And live by the mantra, “Just because something isn’t perfect, doesn’t mean it isn’t good.”

Three Words

I want you to learn three things before you’re 35 because they will get you through all that is to come.

1. Learn how to pivot.

“A usually marked change; especially: an adjustment or modification made (as to a product, service, or strategy) in order to adapt or improve.”1

Most of life doesn’t go as planned. Caregiving definitely does not. You’ll plan, research, strategize, and adjust. You’ll think, “Okay, this will work,” only to find that it works for a while or never works at all. You’ll learn to let go of anything that stops working or doesn’t work in the first place. And you’ll pivot.

2. Be flexible.

“Characterized by a ready capability to adapt to new, different, or changing requirements.”

This one’s almost funny. “New, different, or changing requirements.” You may as well get that tattooed somewhere on your body, because it will become such a part of your daily life. Every illness, injury, and diagnosis should come with a label: WARNING: Contents subject to change.

It doesn’t matter why your loved one needs care; whatever the reason, when you become a caregiver, you must be flexible with everything: Routines, abilities, disabilities, symptoms, side effects, safety measures, dietary needs, triggers, etc. It will all change dozens of times. You’ll drown if you’re not flexible.

3. Improvise!

“To make, invent, or arrange offhand; to make or fabricate out of what is conveniently on hand.”

You will plan for every eventuality. You’ll prepare ad nauseam. You’ll have everything under control. You’ll be ready for anything.

And then something will happen that you never saw coming.

Like the time Mom threw up in the car on the way home from her tenth chemo treatment. She’d never thrown up before until several hours later. She’ll be covered in vomit, with the smell making her continue throwing up.

So you’ll improvise.

You’ll see a Walmart just up ahead. You’ll park, run in, grab the first woman’s blouse you see, a bottle of soda, and a package of baby wipes. You’ll pay and be back in the car in ten minutes.

You’ll help Mom get changed, wipe the vomit from her face and hands. You’ll throw all the soiled things into the Walmart bags and toss them in the trash.

You’ll cover Mom with the blankets you always keep in the car, roll down the window, and hand her the 7-Up. Then you’ll continue driving home like nothing unusual just happened.

The ability to improvise allows you to be creative. You’ll learn to use whatever works and find solutions on the fly. You’ll become an expert at improvising.

Never panic. Panic is reactive.

Improvise. It gives you something to do, and taking action will help you manage the situation and your own stability.

And now for the most important thing I want you to know.

But God…

You will learn to walk with Jesus when you’re very young. And God will get you through so many things. But caregiving is where you’ll truly get to know His heart and let Him know yours.

There is a popular saying: God never gives us more than we can handle.

That’s not true. What is true is that He never gives us more than He can handle.

Caregiving is lonely. Caregiving is hard. Caregiving is emotional. Caregiving is exhausting.

But God can help you through all of it.

“Give all your worries and cares to God, because He cares for you.”

1 Peter 5:7 (NLT)

Your faith will become unshakeable as you watch God come through time and again. Not always in the way you ask for or hope for. You’ll beg God to heal Mom miraculously. You’ll be so convinced that He will that when your mom takes her final breath, you’ll sit there for several minutes, waiting for her to breathe again. But she won’t. And it will take you a few days to realize that God did answer your prayer, just not in the way you expected. He answered because Mom is completely healed—not just her body, but her heart and mind. She is at peace.

And you’ll feel God’s arms around you when you cry and rest in the promise that you’ll see her again. You will know that for sure. You will see her again, because you both accepted the promise in Romans 10:9-10.

That’s when it will become you and Dad. You’ll still be a caregiver.

You’ll want to give up. Daily, weekly, monthly, yearly, but God… He’ll pick you up when you don’t have the strength to stand on your own. And you’ll keep going.

You’ll keep loving and caring, and you’ll thank God because now Dad lives with you.

With love,

Your older self

Three Rapid Questions

1. In a couple of sentences, describe one thing you do to move through fear or uncertainty during caregiving. Prayer is my go-to whenever I’m afraid or uncertain about anything. I also find myself saying “okay” under my breath a lot. I think it’s God’s way of prompting me with a reminder that I’m okay, no matter how chaotic and out-of-control life feels.

2. Thinking of someone you admire or respect, name three of their standout qualities. I’ve been blessed with many people in my life who I admire and respect. Three qualities that stand out are their unshakeable faith, their selflessness, and their resilience.

3. What’s one quote, movie, or book that’s inspired you? My favorite quote is “He is no fool who gives what he cannot keep to gain what he cannot lose,” by Jim Elliot. I don’t want to miss what truly matters or waste my time and energy chasing something momentary or futile because my focus was misaligned.

Prompt for discussion:

What is one word or phrase that helps you in your role as a caregiver?

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Disclaimer: This information cannot be considered as medical advice. Please consider seeking help from a doctor, therapist, or support organisation.

Carer Mentor is a dynamic resource of experiences. You’re NOT alone.

This Care for the Carer section of the Carer Mentor Website is why I started this website in 2020.

Over the last decade, since I started caring for my parents, I’ve sought out experts, research, and insights to help me navigate caregiving. The resources and recommendations I found are here for you. This is the reference I would have liked to have from day one of caregiving.

Every set of personal circumstances is unique. I don’t presume to know what you or any carer is going through. There is no judgment or expectations here. This space is for all caregivers.

The information and insights may offer a new perspective or reframing that could help you, or maybe not. What’s helped me could help you. Only you can decide if this information is useful for you.

All the information is publicly available. I’ve taken the time to curate these resources for us.

This section is not about caring for someone; it’s about how we manage and care for ourselves.

Carer Mentor is a hub of resources, recommendations and information. A reliable go-to nexus of insights and comfort for the caregiver. A place where Care for the Carer comes first, and the acts of caregiving come second.

The best way to explore all the resources is via the desktop version of the website:

Please subscribe and ‘❤️’ LIKE the page to guide others to these resources.

If you’d like to support my work, you can use a 60% discount on a subscription forever.

Index of tools

• Carer Mentor Concepts

• Inspired by Books

• Life Transitions, Changes and Narrative Psychology

• Self-compassion, Complete The Stress Cycle

• Emotions and Emotional Agility

• Misconceptions about Emotions

• How Emotions are Made

• A Growth Mindset

• Resilience

• Building your Values Compass

• Walking Your Why

• The Language of Caregivers

Carer Mentor Concepts

1. The Timeline Exercise. The big picture reflections. Putting things into perspective. This is the first exercise I ask all my mentoring clients to do. It’s a simple yet powerful way to facilitate an overview and a deep dive into impactful events

2. ‘Ten Annual Review Questions’ to prompt deeper reflections.

3. ‘5 Sparks to inspire a fresh perspective.’ Rethinking what matters

4. “Are you setting yourself up for success?” 2 Big questions and 1 Simple Exercise with powerful implications.

5. Personal Opinion: ‘A Recalibrated Frame of Reference’ A reframing of life events.

6. Navigating with Emotional Agility: ‘A map, compass and signposts.’ Preparing for the onward journey. How I navigate forward

7. Index: Experts, References, Resources Quoted/Highlighted in Carer Mentor Articles

Main Index

Inspired By Books

1. Carer Mentor’s 2026 Top Ten ‘Annual Re-Reads’ and the current twenty-five books competing for a top-ten spot.

2. Carer Mentor’s Ten Annual Re-Reads

3. The current twenty-five books which are competing for a Top Ten listing

4. Recommendation: Emily Kenway’s ‘Who Cares: The hidden crisis of caregiving and how we solve it.’ One of my Top Ten Annual Re-Reads.

5. Resource: Megan Devine’s ‘How do you help a grieving friend?’ Refuge in Grief Website & Book

   Main Index

Life Transitions, Changes and Narrative Psychology

1. Recommendation: Bruce Feiler’s “Life is in the Transitions. Mastering Change at Any Age.” TEDx Talk and Book

2. Recommendation: Insights: Hidden Brain’s ‘Change Your Story, Change Your Life.’ Summary notes, insights, prompts and creating synergies of articles.

Main Index

Self-compassion, Complete The Stress Cycle

1. Resources: ‘Managing the Mental Load.’ Understanding and enabling yourself.

2. Resources: ‘Moving your inner voices out’ Mental Health Awareness

3. Recommendation: ‘Grief is messy. It’s not a tidy five-stage path.’ Shankar Vedantam interviews Lucy Hone (Public Health Resilience Researcher).

4. Recommendation: ‘Burnout and how to complete the stress cycle. Emily and Amelia Nagoski’

5. Resource: ‘RSA Animation of Brené Brown’s Connecting with Empathy’

6. Resource: Megan Devine’s ‘How do you help a grieving friend?’ Refuge in Grief Website & Book

7. Megan Devine ‘How to handle the Advice you didn’t ask for while grieving’...and for many situations where unsolicited advice is given.

Main Index

Emotions and Emotional Agility

1. Recommendation: Resource: ‘Dr Brené Brown’s TED Talk: Listening to shame’ Empathy is the antidote to shame. We’re only human, perfectly imperfect and we, especially Caregivers, can only do the best we can. I’m right there in the arena with you.

2. Recommendation: ‘Dr. Lucy Hone’s TED Talk ‘The Three Secrets of Resilient People.’ A powerful talk that strikes a chord

3. Recommendation: Dr Susan David’s TED Talk ‘The Gift and Power of Emotional Agility.’ I recommend her talk and book to every carer I meet.

4. Recommendation: An Introduction to ‘Emotional Agility’ Resource: Susan David and Christina Congleton.

5. Recommendation: Dr Susan David's ‘Emotional Agility ’: Train ourselves to live better lives with our emotions. (December 21 2019)

6. Resource: Dr. Susan David’s Concept of ‘Stepping Out’

7. Resource: Dr Susan David ‘Walking Your Why.’ July 18, 2016. Interview with LeadersIn

8. Resource: ‘How do we teach Emotional Agility to Children’ Dr Susan David (December 21 2019) A short 6 minute video-interview.

9. Resource: ‘Wholehearted living: Avoid Toxic Positivity and Rethink our beliefs around Emotions.’ Showing up to our Emotions. Adam Grant & Susan David.

10. Resource: Emotional Agility: ‘Moving on’ with the help of Piggybacking Habits. Values aligned action-habits. Dr Susan David, Charles Duhigg and James Clear.

11. Resource: Nathan Lozeron’s Animated Summary of ‘Emotional Agility.’ Animation published Jan 24, 2019 on YouTube.

12. Resource: ‘Decoding Emotions and Experiences’ Emotional Granularity. Enablers from Dr. Susan David and Dr Brené Brown.

13. Resource: ‘In the moment-Emotional Agility in Action.’ An approach that helps me navigate forward through uncertainty.

14. Recommendation: Emotional Granularity: Why I Recommend ‘Atlas of the Heart.’ Dr Brené Brown’s book. Mapping Meaningful Connection and the Language of Human Experience

Main Index

Misconceptions about Emotions

1. ‘How can I feel happier or more grateful?’ Enemies of gratitude and how to cultivate a habit to feel happier and more grateful.

2. ‘Why does pursuing happiness, make us unhappy?’ Appreciating the messiness of now, reflecting on joy.

3. Part 1: ‘Misconceptions of Emotions. The Myths and Biases.’ Decoding Emotions: insights and resources

4. Part 2 ‘Misconceptions of Emotions: The Happiness Trap and a Paradox. Decoding emotions. Insights and resources

5. ‘Here’s what we get wrong about the 5 Stages of Grief.’

Main Index

How Emotions are Made

1. ‘How are Emotions Made?’ An Introduction to Neuroscientist Professor Lisa Feldmann Barrett.

2. ’How do we construct emotions?’ 3 videos by Professor Lisa Feldman Barrett. (Part 1)

3. ‘Why are Brain predictions important?’ A caregiver’s telepathy and burden—putting predictions into a context. (Part 2)

4. ‘What influences Brain predictions?’ and how can we build better predictions? Solving for unpredictability as a caregiver. (Part 3)

5. ‘An architect of my emotions?’ Agency and curiosity & how we can rewire our brains for better predictions. (Part 4)

6. ‘What is social reality?’ What social constructs frame our lives and influence us? (Part 5)

7. Recommendation: ‘Where do feelings come from’ Shankar Vedantam’s Hidden Brain podcast interview with Lisa Feldman Barrett

Main Index

A Growth Mindset

1. Embracing the power of ‘Not yet’ Professor Carol Dweck: ‘Developing A Growth Mindset’.

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

3. Resource: ‘Wholehearted living: Avoid Toxic Positivity and Rethink our beliefs around Emotions.’ Showing up to our Emotions. Adam Grant & Susan David.

Main Index

Resilience

1. Recommendation: ‘Dr. Lucy Hone’s TED Talk ‘The Three Secrets of Resilient People.’ A powerful talk that strikes a chord

2. Recommendation: ‘Grief is messy. It’s not a tidy five-stage path.’ Shankar Vedantam interviews Lucy Hone (Public Health Resilience Researcher).

Main Index

Building your Values Compass

1. Poem: ‘Mirror Questions. Who defines who?’

2. ‘How can articulating core values help us?’ Part 1: A life compass in uncertainty.

3. ‘How do I articulate my core values?’ Part 2: Finding Your ‘Values’, words and phrases.

4. ‘How to prioritise values to live them’ Part 3: Bringing values to life, through a caregivers lens

5. James Rhee: ‘The value of kindness at work’ (February 13, 2022)

6. James Rhee: ‘red helicopter: a parable for our times: lead change with kindness (plus a little math).’ An example of ‘walking your why.’

Main Index

Walking Your Why

1. Resource: Dr Susan David ‘Walking Your Why.’ July 18, 2016. Interview with LeadersIn

2. ‘Reflections about Walking your Why’ A Caregiver Value Compass in Action.

3. ‘Walking my why’ Advocating for others.

4. ‘Mind the gap. Build a Bridge’ Building Awareness. Mindfully showing up for others.

5. Walking your Why: Mind the Gap recap!’ Checkpoints and a Cool Tool!

6. Brain Rest A short reflection and resources.

7. ‘Walking the Talk.’ October 2023 I wrote this poem ‘One Carer’s Purpose.’

Main Index

The Language of Caregivers

1. ‘The language of being human’ by Poet Ali. Do you speak Caregiving?

2. ‘Are you fluent in ‘Caregiver?’‘ Conversational language tips from people in the know.

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April is Bowel Cancer Awareness Month in the UK

In 2025, I curated an anthology sharing people’s experiences. I also shared how I had a test and a colonoscopy done because I was worried about some abdominal symptoms and my familial history of cancer. Thankfully, I was given the all clear.

The colonoscopy wasn’t painful. I chose not to be sedated, so I was awake the whole time. Drinking the laxative is the difficult part, and even that’s easy if you’re prepared.

If you’re a colonoscopy newbie, this article’s for you

Table of Contents

1. Experiences

2. Pre-Colonoscopy dietary guides and bowel preparation

3. Examples of laxative preparations you may be asked to take

4. VLOG experiences demystifying the “Colon cleanse”; taking the strong laxative to clear the bowel.

5. Quotes I’ve heard from other people’s colonoscopy experiences

6. After the colonoscopy: 2 key essentials

7. What worked for me. Check with your doctor and nurses during your procedure

8. Support Organisations

Disclaimer: Please consult your doctor and nurses about your procedure. This is for awareness and information only. I’m not a doctor or medically trained and cannot advise you on what’s right for you.

Spread the word - if you’re having these symptoms, ask your doctor about a qFIT test or if a colonoscopy is right for you.

1. Articles of personal experiences

• “Listening to your gut could save your life...In this article I talk about inflammatory bowel disease (IBD), colonoscopies and everything in-between.” By

• “Ready to make Katie Couric proud. It’s that time. My First Colonoscopy is next week. by

• ‘Do I have cancer?’ Navigating to Clarity. A summary of my journey and recommendations. By Victoria

• Bowel Cancer Awareness Month (UK). What are the symptoms? How do I get tested? Is there a screening programme? By Liz Arginteanu David Barrow Janine Cutting Kirsten Davidson Mikel K Miller Isabelle Plante and myself.

2. Pre-Colonoscopy dietary guides and bowel preparation

• Shopping list for your colonoscopy prep. “A shopping list for food, drinks, and other items you will need during your colonoscopy prep will help you have a successful prep.” By Colorectal Cancer Alliance

• Sample 6 Day Colonoscopy Prep Guide By Colorectal Cancer Alliance

• 5 days before your colonoscopy. Colonoscopy diet advice and bowel preparation by Guy’s and St. Thomas’ NHS Foundation Trust

  This is a good overview

Table of Contents

3. Examples of laxative preparations you may be asked to take

UK:

• Senna tablets and Picolax or CitraFleet (sodium picosulphate) sachets

• Moviprep

• Plenvu

US

• Miralax

• Standard Golytely Preparation

Table of Contents

4. VLOG experiences demystifying the “Colon cleanse”; taking the strong laxative to clear the bowel.

MY COLONOSCOPY + PREP VLOG EXPERIENCE she’s using Moviprep

Taking Plenvu when your appointment is in the morning by University College London Hospitals NHS Foundation Trust

• There’s a similar vide using Plenvu for an afternoon procedure

• Preparing for your Colonoscopy (US) by Riverside. Videos include instructions around the use of Golytely, or Miralax

• Preparing for your Colonoscopy (US) by Tampa General Hospital

Table of Contents

5. Quotes I’ve heard from other people’s colonoscopy experiences

• “The worst thing about a colonoscopy is the laxative prep solution”

• “Peeing through your bum hole is a whole new experience”

• “I was out for the whole procedure”

• “I was awake the whole time and watched the camera go through each section of my bowel”

• “It was uncomfortable but there was no pain at all when they were using the camera”

• “Even if you have haemorrhoids it’s painless. It’s strange at first but it’s ok”

Table of Contents

6. After the colonoscopy: 2 key essentials

1. Aftercare is important. Be careful about what you eat and drink

In general you can eat and drink normally, but it’s best to start with light, easily digestible foods to ease back into eating. Focus on small, frequent meals for the first 24 hours to reduce bloating.

For the first 24-48 hours, avoid high-fibre, nuts, seeds.

I was really hungry and did the wrong thing of eating a high protein, fibre meal and suffered for 3-5 hours of very painful bloating

Stock up on peppermint tea, this had an almost immediate easing and soothing sensation.

This article resonates with my experience: The Best Foods to Eat After a Colonoscopy (and Which to Avoid) by Written by Ronald W. Dworkin, MD, PhD | Reviewed by Patricia Pinto-Garcia, MD, MPH

2. Don’t plan anything strenuous or stressful for 24 hours. Let your body rehydrate and normalise post-procedure.

This is a hard one if you’re caring for someone who has unpredictable needs or appointments. I get it.

I had no anaesthesia, because I wanted to watch the screen during the procedure. So I could drive myself home, and thought I’d be fine. In reality, the meal I had for lunch forced me to lie down for 2-4 hours because the gut spasms were so bad. The procedure wasn’t the problem, it was my choice of meal. Don’t let hunger push you to eat high fibre. Your gut needs to restart slowly.

I needed 48-72 hours for my gut to normalise. Peppermint tea relaxed the muscle spasms.

Table of Contents

7. What worked for me. Check with your doctor and nurses during your procedure

• A morning appointment was easier to manage, to ‘clear out the bowel’ and be sleeping through possible hangry hours.

• I had a ‘white diet’ with no fibre for 1 week before the procedure which was tough because I love grains, seeds and fibre, but it made the whole experience much easier.

• No beetroot, or anything with colouring. That means no Ribena Blackcurrant juice.

• Peppermint tea before and after will be my future goto drink.

• The Moviprep solution tastes awful, the citrus flavour is disgusting. So I alternated between drinking the laxative and having sips of an ‘alternating drink’:

  • herbal tea with some honey/sugar

  • chicken stock cube dissolved in hot water; clear broth

• I avoided carbonated drinks despite the instructions recommending lucozade, gatorade or another energy drink. I didn’t want to be gassy or risk any painful bloating

• The laxative instructions are very clear. I had bottles of water and a glass jug and big spoon. I had my ‘alternating drink’ ready. I focused on the timing of drinking the first load. So I had my little prep-area, and I was near a toilet. I distracted myself a little with a film/book.

• When I was on the last jug of laxative it was hard to keep drinking. I knew that when I was already ‘peeing’ fluid from my anus that there were no solids and my bowel was clear. (TMI, sorry but this is the reality!)

• Remember that the amount of laxative is an instruction for everyone. I already knew from my mother’s experience (a small person) that she simply couldn’t drink any more when she reached the last half of the jug.

• Make a judgment call, when it’s hard to drink more. I did. I just made sure that I was only passing liquids because I really didn’t want the colonoscopy to fail. Failure would be when the camera can’t see the bowel and colon walls easily.

• Small but important details:

  • I took a small rucksack to put my clothes in.

  • In the UK you undress. I was given paper shorts with a paper back opening and a hospital robe to wear with the ties behind me that the nurse tied the top.

  • I didn’t take slippers. I wore hands-free, slip-on/off shoes

  • I tied my long hair up in a topknot so it wouldn’t catch in ties or annoy me.

  • I carried my rucksack of clothes into the treatment room. Then I lay on my side on the hospital bed.

  • A nurse sat near me for reassurance.

  • Afterwards, I was wheeled on the bed into a recovery room. The nurses offered me a hot drink, cheese and crackers or biscuits.

• I’d researched ‘normal’ colon videos and watched my procedure on the screen.

• I bought some Buscopan (hyoscine butylbromide) just in case I might need it.

• I’ll definitely be having a colonoscopy regularly because it was much easier than I thought and it was very reassuring to know that I’ve a healthy bowel. I literally saw it for myself.

Table of Contents

8. Two support organisations

• Click here to go to Bowel Cancer UK’s website. “We’re the UK’s leading bowel cancer charity. We’re determined to save lives and improve the quality of life of everyone affected by bowel cancer. Our vision is a future where nobody dies of the disease.”

• Click here to go to the US Colorectal Cancer organisation website. ‘The Colorectal Cancer Alliance is the nation's leading nonprofit dedicated to colorectal cancer. Together with a nation of passionate allies, we advocate for prevention, magnify support, and accelerate research to end this disease.’

Table of Contents

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

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers 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

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

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

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

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

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

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

7. “The Love Test” by

Today’s ‘Letter from a Caregiver’ is by

I met Brittany last year, when she started writing on this platform. I felt a resonance with the big pivot she’s made to care for her father. She’s also educated me about ‘land loss’. I recommend learning more about Brittany and her family through these two articles:

1. My Career Trained Me for Global Crisis. Then My World Collapsed at Home. This is the first post from Life Bee Lifin’—a space I never thought I’d have to create. But life flipped, and here I am, telling the story I needed but couldn’t find.

2. My Father Got Sick and History Got Loud. Caregiving collapses time. My father’s health made land loss urgent.

Many thanks to Brittany for writing this letter. I think it’s clear from the tempo of the letter how tough it’s been, and how much resilience, compassion and courage she’s instilling in her younger self.

Brittany Carroll, Washington, D.C., April 2026, to my younger self in 2024.

Author’s Bio: Brittany A. Carroll is a management professional and writer based in the Washington, D.C. area. A former U.S. diplomat, she now navigates the role of caregiver to her father following a life-altering health crisis—and writes about what that journey has taught her about responsibility, identity, faith, and the systems we rely on in moments of need. Through her Substack, Life Bee Lifin’, she explores the intersection of caregiving, legacy, and the unspoken realities of stepping into roles we never feel fully prepared for.

Dear Brittany,

He will say it as a joke, softly under his breath while heading out the front door with that witty smirk. Yet this time, his eyes will not squint—and you will know he means it. The weight of his words will be too heavy to hold.

It will be almost two years since you moved into your house—the one you bought after returning from your tour in Iraq. And you will call the first man who ever loved you through his actions to help you make it feel like home. For months, he will do everything—install the blinds, mount the TVs, hang the curtains, install the shower rods, assemble the furniture.

Before your bedframe even arrives, he will be your very first guest. The two of you will sleep, squished together, on that green couch in the living room—the same couch where he will one day spend most of his days after his rehab discharges.

You will be so full of ideas and initiatives—not just for your nuclear family, but for your extended family too. The ambition that carries you through some of the biggest operations in the world will spill over into your personal life.

But I need you to brace yourself.

Because you will need that experience and that expertise for the greatest grief you will ever feel. You will not think about what he uttered under his breath at that door until one year from now.

Your strong, capable father—the one who drops you off at every sports practice, every viola lesson, the one who picked you up from your international trips around the world—your executor of dreams, Mr. Fix-It, jack-of-all-trades—will need you the most a year from now. And you will see another side of him that you are not prepared for. One that will shatter the images and memories you’ve always held.

I need you to know that you will be forced to take on a title you thought would first begin with your brother.

But it will begin with Daddy.

Caretaker.

I need you to know that your training will serve you well with the administrative aspects. It will not prepare you for the grief you will feel watching your dad almost leave this earth.

Remember the relief you felt getting on that last helicopter out of Iraq to return home?

This experience will make you want to go back.

Yes—you would actually rather return to Iraq.

You will lose count of the days you’ve cried. You will pray and sob yourself to sleep. You will start off strong—organized, persistent—but at some point, you will reach an exhaustion that no amount of sleep can fix.

The Type A in you will clutch her pearls if she sees your office.

It will be a complete mess.

You will not put your Christmas décor up until April.

You will stick to a diet—and then find yourself in a Wendy’s drive-thru or grabbing ice cream just to cope.

I need you to know:

It does not have to be perfect.

It is okay for it all to fall apart.

Ask for help immediately.

Do not feel bad for saying you are drowning.

And understand this—resilience may look like doing absolutely nothing.

You will be thrust into this caregiver role so abruptly, but you have the experience and training to execute, advocate, and protect the only man in this world who has loved you with everything he has.

He will need you a year from now.

You have always had that fight in you. Be mindful of your tone—but fight.

It will serve both you and him well.

You will not think about what he said again until his first week in the ICU.

“Who knows… I may not be here.”

I need you to understand that God makes no mistakes—and nothing you experience in life will be a coincidence.

There will be a reason you feel compelled to come home and take a D.C. job after Iraq.

There will be a reason you leave that first job after six months and take another that allows you to travel the world for two years.

It will not be a coincidence that on nearly every work trip, you reconnect with someone from your past.

That will be your farewell tour.

It will not be a coincidence that you return home just in time from a two-week trip to Korea to witness your daddy’s health decline.

It will be the Holy Spirit that tells you to go see him a day earlier.

It will be that same Spirit that has always guided you—to leave early, to apply, to pivot, to trust the unknown.

And that quiet tug you have been feeling—to leave the Foreign Service—will come to fruition.

You will resign with your dignity intact.

You will step into a new role in the nation’s capital so you can support the family that supported your dreams.

It will not be easy.

It will be filled with difficult conversations.

But it will teach you grace, mercy, and favor.

You will know God in a way you have never known Him before.

And the people you least expect will show up for you—and carry you through one of the hardest storms of your life.

You thought China during COVID was a storm.

This will rock you to your core.

I need you to be okay with not accomplishing all ten things on your to-do list.

One thing is enough.

I need you to be okay with holding your boundaries even when they are misunderstood.

They will protect your peace.

You will not have a manual for this.

You will feel unprepared.

But you are ready.

You have the experience and resilience to weather turbulent storms.

Take care of yourself.

You will need that discipline when this storm arrives—because the stress will settle in your body.

Keep going to therapy.

Go to the chiropractor.

Watch what you eat.

Keep your body moving.

You will find love before this storm.

And you will have to let it go in the middle of it.

You deserve a partnership that understands the weight of your calling—one that helps carry it.

But alignment matters.

Without it, your cry for help will be misunderstood as a complaint.

Let it go.

Your discernment will sharpen.

And in caring for your father, you will finally understand what love truly looks like.

It will change everything.

You will no longer crave perfectly curated photos or timelines.

You will crave a man who prays for you in the middle of the night when your back is against the wall.

A man who sees you and knows when to step in.

A man who asks, “What can I take off your plate?”

You will no longer chase timing.

Because alignment is better than the cost of choosing wrong.

You will be encouraged to stay silent about the hard, messy parts of life.

I am encouraging you to be brave.

Speak truth.

Even when it is uncomfortable.

You will not be emotionally prepared for any of this.

But you will be mentally and physically equipped.

And that is enough.

As the saying goes—

“Life Be Lifin.’

And still—you will show up.

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

I always pray when I’m uncertain. Caregiving is no different. Then I take a step back to fully understand the situation, problem, or conflict in its entirety. It’s easy to react, but I’ve learned it’s better to move strategically, even when it comes to matters of the heart.

2. Thinking of someone you admire or respect, name three of their standout qualities.

There are honestly too many to name, but I’ve been incredibly blessed with a circle of friends who have known me for a long time. When I ask for help, they don’t ask questions, they ask for the deadline. That kind of support comes from cultivating deep, long term relationships. If I had to name three qualities, they are observant, willing to help, and action oriented instead of reactive or complaint driven.

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

I recently read The Heaven & Earth Grocery Store by James McBride, and it’s been a long time since a book made me get out of bed in the middle of the night just to keep reading. The storytelling is layered, rich, and deeply compelling. As I step into the literary world to write my first book, it has inspired me to sharpen my craft and write something just as hard to put down.

Prompt for discussion:

What’s a role or responsibility you stepped into before you felt ready—and how did it change you?

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I’m Victoria, and 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.

Dear Friends,

Last week, Monday to Friday, was an intense 5 days, but we avoided a crisis hospitalisation. So I’m feeling deep gratitude for our doctors, relief and very tired.

Know when to ask whether a D-Dimer test is appropriate for you and your loved one.

Background

I first discovered the D-Dimer test when my mother was hospitalised with COVID and pneumonia in 20242. There is evidence of a higher risk of blood clots and pulmonary embolism for immunocompromised patients with COVID.

I advocated for a D-Dimer test because there were no beds in the hospital respiratory ward, and there was a push to activate the ‘Virtual Ward’ system, aka I’d care for my mother at home, whilst providing the nurse team with observation readings of temperature, oxygen, BP and general health three times a day.

Virtual wards place the burden of observation and the responsibility of flagging issues on the carer’s shoulders. The time to medical intervention for an issue would be longer than in the hospital.

Imagine the emotional angst and stress on carers and mix in being informally recruited to meet the reporting needs of a nurse team, and their schedule.

So, at the time, (whilst suffering COVID and pneumonia myself camped out in the hospital), I insisted on the D-Dimer test to ensure my mother had no risk of DVTs or PEs at home.

A new equation I’ve learnt this week:

One very big swollen leg, that becomes worse over 2 days, requires urgent investigation and treatment for possible Deep vein thrombosis (DVT).

There are several high-risk factors when that leg belongs to an 80+year-old with less mobility, who’s receiving hormone drug therapy for one of her cancers and a drug treatment that affects epithelial cells for another cancer.

[Please consult your doctor if you have a swollen leg, suspect a DVT or dial emergency services if you also have chest pains or breathlessness. This article is for awareness purposes only. I’m not a doctor and cannot offer medical advice.]

I’m very grateful

• to our oncologist, who received my email with photos for our usual consultation and immediately elevated the urgency about a possible DVT. Either he could ask for an ultrasound-Doppler scan, or I could alert our GP. We decided on the latter.

• to our GP practice for their triage system, and rapid response that activated the blood test and ultrasound scan

• I’m glad I knew to ask if a D-Dimer test could be done, so the GP and I could agree on a plan of action together if it were positive.

Our plan of action and goals with the GP practice

• Get blood taken as soon as possible, for the test to be done, and if positive, the GP would make a prescription for an anticoagulant. The goal was to have the blood thinner prescription before the weekend, if required.

• An urgent request for an ultrasound Doppler scan was made at the same time, to confirm the diagnosis, but it could take 2-3 days. This is why the GP used the D-Dimer test as the trigger for the prescription, not the ultrasound diagnostic test.

Communication: I made sure to highlight the timeline of symptom worsening, current drug treatment, the cancer, the last consultation, and the oncologist’s recommendation for action.

This Carer’s accounting of actions (over 5 days). ‘Red flag’ actions on top of ‘usual’ medical appointments

I’ve counted all the actions, tests, appointments, and telephone calls over the last 5 days, in addition to the already scheduled medical appointments.

• 2 sets of blood were taken (Monday and Thursday morning), the second was for an urgent D-Dimer test.

• 3 hospital appointments: 2 pre-scheduled. We were called on Friday, late morning, for the ultrasound scan at 4.30 pm. We’re SO grateful to be squeezed in.

• 4 Dr telephone consultations: 1 scheduled. 3 responding to the issue: 1 to discuss and make an action plan, and 2 about test results and next steps.

• 2 updates to our 2 sets of oncologists

• 1 rapid prescription picked up.

• Confirmed the anticoagulant medication instructions for use and made sure my mother and I are clear about its administration.

• I re-primed us for an emergency: 1-pager Medical summary was updated with results, and Hospital GoBags double-checked.

I don’t usually do this kind of summary or dwell on these numbers, especially because they blur into what I consider my agility as a carer.

Rumination is not helpful, so I’m not laying out the detailed sequence of events. It also wouldn’t add any value to you, as these circumstances are unique to us.

I did this “accounting of actions’ on Friday as part of my journaling because I wondered why I was pushed to my absolute limit on Thursday. It felt uncharacteristically extra tough.

What pushed me wasn’t the caregiving events, but the additional ‘official’ meetings I’d scheduled for my business. Twice during the day, my flashlight of attention had to be shifted away from my caregiving priority. The constant switching of attention can easily amplify stress and strain.

Engaging in scheduled business meetings that required more administrative work and responses between medical actions was frustrating. But that’s what happens when things collide.

My adrenaline was higher than usual while monitoring for worsening symptoms and being primed for an emergency. You may know what happens if a blood clot travels to different parts of the body. My father had a couple of mini strokes/ transient ischaemic attacks (TIAs) because of blood clots. I was worried about a pulmonary embolism for my mother.

Bottom line, the blood thinner treatment has started, and I’m SO relieved we’re not in limbo over the weekend. We’re having a quiet weekend now.

Caregiving gears are ratcheting down. Completing the ‘stress cycle’ is important - so I journaled, texted friends, and walked 4km

This article is part of my re-centring because I need to know more people are aware of the D-Dimer test, especially as we’re approaching high-COVID season.

I hope this helps you.

Take care of yourself and each other. xo

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

Letters from a Caregiver.

“Letters from a Caregiver” is a weekly article where a caregiver offers 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

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

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

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

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

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

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

Today’s ‘Letter from a Caregiver’ is by Sally Cave

I connected with Sally in late 2025. She was writing Substack notes about caring for her father, who had Alzheimer’s, here in the UK. In early January, when circumstances seemed particularly difficult, I reached out to see if I could offer some comfort or practical insights through a call.

My heart went out to her and her family, because I know first-hand how fraught hospitalisations can be, especially when your parent can’t advocate for themselves. Unpaid carers (the label we’re afforded in the UK) are not naturally included in discussions about the “pathways of care”1

My heartfelt condolences and warm wishes go out to Sally and her family for the recent loss of her father.

Thank you, Sally, for choosing to write this letter and agreeing to publish it.

Author’s Bio: Sally Cave was born and raised in the UK but has spent most of her adult life in Mexico. She lives with her family and divides her time between both countries. She developed her passion for writing when she first moved to Mexico. You can follow her on Substack where she writes about everything from caregiving to faith, the supernatural and a whole lot more. Coming soon, her debut novel: Change of Heart.

The Love Test

Dear Sally,

There are so many things I want to tell you. There are so many things I want to say, but for this letter, I will focus on one. During this chapter of your life, the most important thing you must learn is to extend yourself grace. You are too hard on yourself. You expect too much of yourself. You judge yourself too harshly. Be kind. Let me say that again. Be kind.

You may not see it right now. In fact, I know you don’t. It’s not even on your radar. There will come a time when you stand up for Dad in ways you never imagined. You will be there for Dad in ways you never thought possible. You will become his hands and feet. You will become his memory bank. You will become his cook and his cleaner.

He will cheer you on from his ‘perch,’ while you run the duster over the coffee table in the lounge. As you hoover the carpet around his feet, he will offer a thoughtful, ‘Well done.’ He will lift his feet and offer his help. He will try to be useful even though he no longer remembers how.

You will dress him. You will bathe him. You will wash him and clean him up. You will shave him and trim his eyebrows. In between these caregiving moments, you will share a laugh, give him a hug and a kiss, and tell him you love him. You will watch as he forgets how to hold a fork. You will watch as he ignores his knife. You will stand by as he forgets how to drink from a glass. It will get to a point when you cut up his food and feed him.

You will explain to him things about the world as if he were a newborn, without that sparkle of newborn wonder in his eyes. You will calm him down when anxiety threatens. When crisis strikes, you will have the words that bring him peace. You will tuck him into bed at night. You will tell him it’s daytime when he believes it is night. You will guide him back to bed when he thinks it is daytime. When infection hits, you will guide him up off the floor. You will show him how to get on his feet again. Sometimes it will take him an hour. Sometimes you will find him on the floor at 3 am. You will beat yourself up because you didn’t hear him fall.

Don’t do that. Remember who you are. You are his daughter. You are the apple of his eye, and you are trying your best. Remember that, Sally.

You will watch him unravel and will mourn the passing of each layer. You will remain strong for both of you until he goes…and then you will break.

Then you will wonder what happens next. The focus on his needs, wants to go somewhere. It needs to go somewhere, but where does it go? Who should it go to?

You will feel tired, so tired that you go beyond tiredness. You will feel like you have aged 10 years in 21 months. But as you age on the outside, your heart and your soul will mature like fine wine. You will learn lessons about love and sacrifice because you embody it. You become grateful for it. You even enjoy it.

The sacrifice, the tiredness, the worry, the anguish, the grief are all worth it, because you loved him with your whole heart. You served him and honoured him. You were a gift to him. And this was his gift to you.

It’s hard to imagine, I know.

We’ve all heard it said a thousand times: “Live your best life.” We are encouraged to go out there and seize life by the horns. Mum and Dad certainly did that with you, Sally. They never held you back. Every time you grabbed your backpack and disappeared into the unknown halfway across the world, they remained at home, waiting, trusting you would be OK. There were no mobile phones, only faxes, and those would only be sent once in a blue moon. How exciting it was sitting in a makeshift shack in Guatemala with 5 phone cabins and a fax machine whirring away, until a long-handwritten letter spewed out, sent from Mum and Dad’s own machine. Those were your ‘Indiana’ days, where you roamed and explored quite unconcerned about your own safety.

They never held you back.

When you moved to Mexico, they were sad, but they never stopped you. When you remained in Mexico, they were sad, but they never stopped you. They encouraged you to go out there and live. And live you did!

Strangely enough, there are no sayings about walking away from your life to make another person’s life comfortable. No one talks about the joy of caregiving, the privilege that it is. No one talks about the gift of sacrifice.

Dad always told you not to return to the UK because of him, but how could you leave him rattling around in the house on his own? You couldn’t. You didn’t. And I am grateful you didn’t. I am proud of you, Sally. I’m proud of who you have become through this. You won’t become a great historical figure known for your contribution to mankind, but you will become great in your Father’s eyes for your contribution to one man.

And that is all that counts. Nothing else matters.

How we love is all that matters. It’s easy to love those who love us. It’s easy to love others when our lifestyle isn’t challenged, but what happens when we are faced with difficult decisions?

• Do we love selflessly?

• Or do we love conditionally?

Do we love like Him? Do we love sacrificially with a love that only comes from Heaven, pouring down from wounds on hands and feet into open hearts?

• Or do we love for personal gain?

• Do we only love when it’s easy?

The love test takes place at 3 am. It takes place when someone’s life depends on yours. It takes place when you have to be there, no matter what. It takes place when you cancel your plans over and over again. It takes place when your life is placed on hold. That is when your love is truly tried and tested.

Will it pass the test? I’m here to tell you that it will. I’m here to tell you that it did.

So next time your mind floods with accusations and doubts over the level of care you gave him, remember this: it’s not about whether your care met professional standards, it’s not about having the right qualifications or training, it’s about whether your heart passed the love test.

There was a moment when you doubted yourself. There was a moment when the system questioned your integrity. ‘Safeguarding,’ they called it. You, like a newborn to the NHS system of frailty care, had no idea that you would come under scrutiny, that they would ‘investigate’ you. It wasn’t until a lady from Adult Social Care stopped you in the hospital corridor that she mentioned a case had been opened.

‘Nasty bedsore,’ she said. ‘Possible neglect,’ she said.

Almost in the same breath, she said, ‘Don’t worry. The case has been closed. We realised you were out of your depth.’

Her words will pierce. Just like that, she will qualify you as unfit. Just like that, they will oblige you to put him into a home. No one from the outside came and encouraged you in the months prior. The system did not reach out and offer help. That help is only offered if it is paid for. You realised quickly that the system left carers alone until they came under scrutiny. And while you will feel relieved that the system reviewed the records and saw how many times you called the GP, those words will continue to sting. They will make you feel you failed him somehow.

Know this. You didn’t fail him. You loved him. By the end, you were all he knew. And he was safe with you.

And now you find yourself in this strange place. You can go out and live your life, but you are just not ready. Take it slow. Take time to heal. Rest, recover, recuperate. And when the time comes, go out there and love again.

Love is the only qualification that counts.

Love always,

Sally

1. Moving through fear or uncertainty

Prayer never fails. I often focus on and personalise a key scripture to settle my mind. 2 Timothy 1:7 is ideal for when uncertainty bites: For God did not give me a spirit of fear, but of power, love and soundness of mind. I also sing my heart out. Songs like ‘All Authority’ by Tasha Cobbs chase darkness and fear away.

2. Three qualities I admire

I tend to admire people with the following standout qualities: the ability to remain calm in a crisis; the ability not to take offence, and the ability to stand one’s ground lovingly. The first quality forms the foundation for the other two. If a person is able to remain calm, then offence doesn’t come so easily, and being influenced by others’ opinions is less likely. I admire people who can steer through crises and tense situations while remaining true to themselves and their convictions.

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

This is a really tough one, principally because I have many books that have inspired me. Even though the list is long, I always come back to The Catcher in the Rye. Why? I am not entirely sure. There is something about experiencing Holden’s mental health crisis firsthand that I find so jarring and yet so relatable. I believe we all have an element of Holden inside of us. We either accept him or we struggle with him. Whatever it is, I think Salinger does a fine job of tapping into an element of the human condition through his main character.

Prompt for discussion:

Describe a time in your life when you experienced a love test. In other words, when have you had to show someone the type of love as described in this post?

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

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

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 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”:

1. Victoria’s question to everyone:

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

2. Share and reply to each other’s comments/questions

3. 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.

Leave a comment

Explore the other “Caregiving as a Parent” discussions:

1. Holding Both: When More Than One Truth Lives in the Same Body (May)

Read more about the Team

As the first discussion, I’m pleased to introduce you to our 12 team members. Enjoy reading more about the team.

1. Chris B

2. Amy J Brown

3. Sara Clime

4. Anna De La Cruz

5. Donna Giles

6. Haley Haddow

7. Bud Hager

8. Cooky Howitt

9. Mary Beth Kaplan

10. Serena Menken

11. Maria Messer

12. Denise Servais

1 & Bray Bray - United States

Hi, I’m Chris B., and I care for my son Bray Bray. We live in Long Island, NY, along with my wife Melanie. Bray Bray was born with a rare genetic disorder called GNAI1, which has caused many development and medical issues — global delays, legal blindness, hypotonic cerebral palsy, obstructive sleep apnea, and seizures. Bray Bray cannot talk and cannot walk, but his smile lights up the world and we strive to give him all of life’s adventures, even if it’s in his wheelchair.

My Substack publication is Chris B. Writes. I write a mix of poems and posts about caregiving for Bray Bray as I share my raw and honest perspective as his dad and witness to his warrior journey. I tend to say more with less, and poetry is my usual outlet during my most vulnerable, emotionally charged moments.

When I am not writing or engaging with my fellow Substackers, I work in public relations and content writing/editing. I also love playing pickleball and beach volleyball, and am blessed enough to be able to do so as a physical outlet and form of exercise.

Key Takeaway: I’ve always prided myself on hustling and putting in the effort. What Bray Bray has instilled in me goes even one step further. It’s not just about the grind; it’s about not letting those hardest moments change the core of who you are.

Read some of Chris’s work:

The Hours, A Caregiver’s Poem & Song…

Sleep…

2 - United States

Hi, I’m Amy J Brown. I’m a writer, mentor, and spiritual director living in Michigan. I’ve spent over 33 years as a mom of six, 25 of those parenting children with invisible disabilities. Three of my kids are adopted, and I know firsthand how lonely, exhausting, and overwhelming it can be to love a child through trauma, mental health struggles, and attachment issues. I’ve lived it. I’m still living it.

As a spiritual director with an MA in Spiritual Formation and Leadership, and author of The Other Side of Special: Navigating the Messy, Emotional, and Joy-Filled Life of a Special Needs Mom, I believe that caregivers need more than advice — you need a safe, shame-free space to be truly heard. Whether you’re parenting a child with special needs, caring for aging parents, or simply running on empty, you belong here. You can find me at; More than a Caregiver: where I write about life giving practices for the overwhelmed caregiver.

I believe your story matters. When we share honestly, we learn from each other, gather strength, and remember we are not alone. My greatest privilege is sitting with women in the hard places and reminding them there is still peace and hope to be found.

You don’t have to keep doing this alone. I’m so glad you’re here. If you are new to my work, start with these two essays. Building a Ramp: Parenting Kids with Invisible Disabilities and It’s Not Supposed to be This Way: Learning to Stand in the Space of What is and What We Want it to Be.

3 - United States

I’m Sara Clime. I’m based in a small Midwestern US city. No, there’s not much here. Yes, I’ve made peace with that.

I’m a caregiver, systems nerd, and a firm believer that a good organizational system can genuinely change your life. I write Sanity & Systems because caregiving is too heavy to carry alone, and we all need people who know exactly how chaotic, beautiful, and absolutely unhinged this life can be. The systems keep me sane. Ish.

My life took a major turn in 2012, when my youngest son, TJ, was diagnosed at the age of 8 with Duchenne muscular dystrophy (DMD). DMD is a progressive, degenerative, and terminal condition. Overnight, I became a disability parent, medical director, advocate, and protector, all while still trying to remain myself. What I learned, often the hard way, is that a diagnosis can change everything without erasing who you are. But it will demand more from you than most people ever see.

So, I built systems, binders, spreadsheets, and tracking sheets, not because I had it together, but because I absolutely did not. Those systems became the Care Support System™, which I now share with other caregivers. Sanity & Systems is the human side of all of that. Real talk, practical tools, and the steady reminder that you are still a whole person, not just a caregiver.

Beyond caregiving, I’m a virtual assistant and consultant, a co-author of The Other Side of Special, a former podcast co-host, and a public speaker. I’ve been married to my husband Craig for 28+ years. Together, we’ve raised two amazing young men.

Something I need you to hear: You’re allowed to hold grief and gratitude at the same time. The jealousy, the anger, the days you resent the life you didn’t choose: those don’t make you a bad caregiver. They make you human. You’re not behind. You’re not broken. You’re not failing.

If you’re new to my writing, start with these two essays. They’ll give you a great sense of what Sanity & Systems is about: How I Learned to Build Systems When Life Fell Apart, and It’s Okay To Be Okay.

4 - United States

Anna De La Cruz is a mom of three, daughter to parents with dementia, and sister and guardian to a brother with Down Syndrome. She has spent her career working in philanthropy, social impact and gender equity worldwide, with a focus on Latin America. Her personal experiences with caregiving over the last decade have fueled her passion to build community and awareness around the needs of caregivers, and shed light on solutions to the care crisis in the US and globally. Anna’s publication is “Gen Xandwich”

Read more about Anna and her brother Leif here:

The Limits of Being Seen. What my brother with Down syndrome taught me about true representation

When the Waves Keep Coming: Trust yourself

5 - United Kingdom

I’m Donna, I am a mother and a wife, a daughter, a sister and a friend. I write “Life and Other Stories”

I was born with a complex congenital cardiac condition – tricuspid atresia, pulmonary atresia, TGA and ASD. This means I have a right-sided single ventricle condition. I have had open heart surgery on 2 occasions, and several scary moments…. but I’m still here… at 58 I am grateful for that fact.

My son, Nathan, and my daughter, Cerys, both have Cerebral Palsy and are full-time wheelchair users. Nathan has a degree in politics and sociology and is currently working with local colleges and universities to train social workers. Cerys is currently at college and is creative, running her own little business selling cards to friends and family. We are incredibly lucky to have a team of PAs and Carers to assist them in living well the way they want.

This creates a very busy household, especially if my husband is also home. At times, there can be the 4 of us, plus a PA for Nathan, and 2 carers for Cerys.

Read some of Donna and her family: A Day in MY Life, otherwise known as “Welcome to Chaos!”

6 - United Kingdom

Hi I’m Haley based in London, UK and I’m a mother of two. My youngest son Max (not his real name) is autistic and non-verbal.
In my early twenties, I followed my passion for adventure and travel by living as an expat in the United Arab Emirates. Later, returning married and expecting my first child, I established a glass art studio. I then relocated back to the UK when Max was diagnosed with autism and am now his full-time carer, putting my career as a glass artist on hold.

Since his diagnosis at the age of three, advocacy has become a defining part of my life.
Special Educational Needs (SEN) parents are often thrust into situations and circumstances that are beyond their control. The early years can feel isolating and overwhelming, but they can also be a catalyst for growth, resilience, and connection. My lived experience allows me to understand this deeply. While people often see strength in caregivers, they rarely see the interior world. Through my publication “Thousands of Us” I share my own and others’ stories to illuminate what so often goes unseen.

Read more about Haley and Max:

• “The Other Side of Caring “You failed him. And you’ve failed us.

• “The Sunflower Lanyard Max had been seen. He had been capable. He had been useful and ...just simply included.”

7 - United States

I go by my second middle name (I have three), Bud, because it’s easier to remember and baristas never misspell it. Deciding that I wasn’t a fan of having money or a solid sense of self, I became an academic, eventually earning a graduate degree in clinical psychology and a licensure as a psychotherapist. After working with people deemed incompetent to stand trial by reason of insanity, typically of a violent psychotic nature, managing a community mental health clinic and training new therapists, I felt ready to become a father. I was woefully unprepared and remain a poor judge of my abilities.

Along with my wife, I am a caregiver for our daughter, Emma, who has pachygyria, a rare neurological disorder. I believe in taking an active approach to advocating for my child and others like her. To this end, I sit on various advisory councils at Rady’s Children’s Health (RCH), volunteer on consulting and directing boards for various non-profit centers, and lend my writing skills where I can. Experiencing a lack of support for parents of medically complex children, I founded a support group through RCH focusing on parent-to-parent interaction.
In addition to being the primary caregiver for my daughter, I am a psychology professor, have a small private psychotherapy practice (that is mostly filled by pro bono work for parents of newly diagnosed children), I advocate endlessly for my daughter, and am hopelessly devoted to my wife, both of whom I believe quite definitely hold the secrets to the universe.
Sometimes I write things at Our Little Kartoffel.

Read more here:

Our Little Kartoffel Words about fatherhood, grief, wonder, and the work of paying attention.

Rare Disease Day

8 - United Kingdom

Hello to you all! Delighted to be here. My name is Cooky Howitt, I Iive in Devon, UK with my husband and two young adult children. Our youngest, Olivia (not her real name) is 19 and has Down’s Syndrome, ASD with a PDA profile, and ADHD. She also has some accompanying physical disabilities. She is officially SLD (severely learning disabled), non-verbal, still in nappies, and needs 1:1 support 24/7. Looking after her is pretty full-on but very rewarding: she’s a huge personality and full of silliness.

I don’t think that my family is particularly special or different, and it certainly never occurred to me write about us in any way. But then, for several months encompassing the whole of 2025, Olivia developed a severe but mysterious gynae-related condition, which quite simply made our lives a living hell. She changed personality, becoming violent for 3 weeks out of every month, and almost totally stopped sleeping. We called 999 5 times, 3 of those involving the police, we rang 111 23 times, and I made well over 150 phone calls in total to health professionals during the year.

Desperate for an outlet, and already an avid Substack reader, I started writing Extreme Parenting. I couldn’t believe what was happening to us, and why nothing was really being done to help. I’m a compulsive communicator and it all just came pouring out. Eventually, due to us constantly agitating on her behalf, Olivia was admitted to hospital, scanned and they discovered that she needed immediate emergency surgery. She has now made an almost full recovery, although it was not straightforward. But here I am still writing! Not as much as I did, for sure, but it’s so cathartic.

Advice for other carers? Difficult as we all have to find our own coping mechanisms. Two things are probably universal though:
1. Community: my kickass SEND mum friends in particular, alongside close friends and family who really get it. They all felt helpless when things were bad, but they kept checking in which helped counter the isolation that extreme caring brings.
2. Fun: both with your child and without them. The beach and stories with Olivia. And without her, disco dancing and cocktails have definitely got me through the last 20 years with a smile on my face.
But you do you!

When I’m not a carer, I’m a careers coach, a true vocation which I absolutely love. I had to put my new company on hold for most of 2025 because of Olivia’s health, but am back into it now which is a wonderful feeling.

Caring is actually the last thing I want to read a book about - I have quite enough of it every day! Having said that, I do enjoy articles, especially other carers’ Substacks. I am a huge fan of Katy Styles’ organisation We Care, which has done so much for us all as a family. She sends out an excellent weekly newsletter round-up which is a life-saver, and here’s the instagram.

It was two guests on that podcast that inspired me to start Extreme Parenting, and Katy then read out my first ever Substack post at the Lib Dem conference last year, which was such an honour.

Olivia watches Finding Nemo at least once every day, so I’m going to leave you with Dory’s wise advice: “Just keep swimming”. It’s all we can do.

Read more here

Highly extreme parenting PDA and Norovirus: a delightful partnership

9 - United States

I’m Mary Beth, a mama to my three beautiful kids, and wife to my best friend. Poet-in-progress, writer, yoga teacher-in-training and forever student of life. I live in Northern Indiana in the U.S.

Mantras and Coffee, my publication on Substack, began as a seed of an idea a few years ago. As I sat in my morning meditation…mind wandering… I knew I needed to share my findings, in the hopes of creating an easier path for others to get to that sweet muted place. That tender heart space I came to rely upon so often, as well as, to solidify what I learn, too, for a deeper, more connected understanding. A place to stop by when things seem overwhelming and chaotic. A place to take a moment for the self, to take a breath, a pause, and to remember what it’s like to be alive. Perhaps it may even act as a reminder that we all actually do have souls dwelling deep within all of us. We all need to catch our breaths and reset, from time to time. My hope is you feel better, calmer, more centered and more in rhythm with your real self after visiting.

For me, guiding, helping and loving my family is my top priority. The last few years have been especially challenging in that we have had to traverse up the mountain of childhood cancer.

Our eldest son, Jonah, was diagnosed in August of 2022 with HR B-Cell Acute Lymphoblastic Leukemia. He is now fully recovered. It was a very intensive, full-time job. I was tethered to my boy and ready for anything throughout the entire process of his active treatment.

Writing has become a close friend, and a healing way for me to release all the things, over these last few years.

The written word, mantras, along with prayer, and poetry were key in helping me deal with the extreme emotional ups and downs of our son’s recovery from cancer. Even now, in post treatment life. These modalities have helped to keep me steady during some of the roughest periods. The best gift in finding these coping methods, has been the healing part. The second best, has been being able to do it, from anywhere, while being the caretaker, my son (and his siblings) deserve and need daily. I’m beyond grateful. Even in all life’s glory and in the most tragic moments, we always learn something. Day after day, constantly being inundated with EVERYTHING, we all need a little help sometimes. We are all in this together. Even caregivers need caregivers.

Something to begin with, if you are new to my work…

With One Palm Open, And One To Your Heart : how the written word, mantras, prayer, and poetry helped me deal with the extreme emotional ups and downs of my son’s recovery from cancer

10 - United States

Hi, I’m Serena Menken. I’m a writer, non-profit leader, and mentor. My husband and I live in the Midwest with our three teenagers and a rambunctious dog. Five years ago, our world was turned upside down when our oldest daughter, Ellie, hit a crisis point with her mental health. Somehow our beautiful, talented, creative daughter was so depressed that she wanted to end her life. Her anxiety kept her paralyzed. Her eating disorder led to deception and self-destruction. Even when we got her into treatment, she spiraled into deeper darkness. It was an excruciating year of rushing to find the right support while waiting in despair.

Five years later, our daughter has made a solid recovery and she’s thriving in college. Over the past five years, we’ve also learned that our daughter is on the autism spectrum; both our daughters have ADHD. Now my mission is to support parents who feel as exhausted, lonely and hopeless as we did. In my Substack, called Evidence of Grace, I write about parenting teens with mental health struggles and/or neurodiversity from the lens of faith, authenticity and hope. Whoever you are and whatever your kid is facing, you belong here. I’ll share my stories and I’d love to hear yours.

When I’m not writing, I love an extended bike ride through a forest preserve, a leisurely cup of tea with a friend, or a quiet moment to journal and pray.

If you’re new to my work, start with these essays: The Grief No One Tells You About and Hidden Strength.

11 – United States

I’m the writer behind Holding Both, a space for the tender mess and quiet magic of living a life that didn’t unfold the way you planned. Through deeply personal essays, I explore what it means to hold grief and joy at the same time, to parent in complexity, and to lead with humanity inside uncertainty.

I’m a mother through adoption to children whose needs have reshaped everything, and a Special Education leader who understands disability from both sides—professionally and painfully personally. My life sits at the intersection of caregiving, systems, mental health, and fierce, complicated love.

I write Holding Both because there aren’t enough places that tell the truth without trying to fix it. This work is about making meaning, finding steadiness, and reminding others they are not alone—even when the path is unclear.

If you’re new to my work, here are a few pieces that reflect this journey:
The Passenger Seat - A moment that changed everything, and the quiet, terrifying realization that I was no longer in control of where our life was headed. This essay explores what it means to keep showing up when you’re no longer the one driving.

He Came Through the Doors - The day my son entered residential care—holding both the heartbreak of separation and the unexpected relief of safety. A story about love, survival, and the impossible truths caregivers carry at the same time.

Before There Was Language - A reflection on the earliest days of my son’s medical and developmental journey—before diagnoses, before language, before understanding. This essay traces the moment everything began to shift, and the one thing that never did: love.

12 - United States

Hi, I’m Denise Servais from St. Paul, Minnesota. I write Ground Level on Substack, where I share about resilience, caregiving, grief, and love. This space is for anyone learning to live inside a life they didn’t plan for.

I’m a mom to three daughters, including my 21-year-old daughter, Maya, who has Prader-Willi Syndrome. My husband, Jeff, and I have been married for 30 years.

My writing lives in the space most people don’t talk about honestly—the mental load, the constant recalculating, the quiet grief, the unexpected humor, and the kind of love that doesn’t fit neatly into milestones or progress charts. I write essays in the hope that other caregivers feel a little less alone, and a little more understood.

Outside of caregiving, I’m a speech-language pathologist working in schools with students from elementary through high school. I’ve spent over 25 years in this field, but the most meaningful lessons about communication didn’t come from textbooks, they came from living it at home.

One thing I’d share with another caregiver: it’s easy to measure yourself against the wrong things. The world will hand you a checklist, but you get to decide what actually counts.

If you’re new to my work, these two pieces give a good sense of what I write about:
The System Is Working, Just Not For Us
The Compliment I Don’t Correct

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“Ask The Team Anything”

1. Read a profile, ask a question

2. Share and reply to each other’s comments/questions

3. Feel free to explore ways to share, connect, and collaborate together.

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

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

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

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

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

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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