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Shifts, cracks of light and networking empathy together.

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

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

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

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

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

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

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

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

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

Caregiving for someone who has health issues or a disability is different when they’re your parent or older, compared to when it’s your child. I’m not familiar with caregiving for a child, but I’d like to hold more space for those experiences and other types of caregiving.

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

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

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

• ‘Caregiving as a Parent’ will be on the first Friday of every month.

• It’s in the form of a discussion thread for easy reference.

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

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

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

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

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

Holding space.

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

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

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

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

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

“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

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

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

Growing Anthologies of Diverse Experiences

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

Explore the anthology: Eldercare / Caring For Parents.

A few of the articles included in the anthology:

• Priming for an emergency: What You Need to Know Before an Unexpected Hospital Trip includes a free download of checklists. by Victoria

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

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

• 3 Ways Hospice and Palliative Care Are Different When we talk about hospice and palliative care, the two terms often exist within the same breath. (includes information on Community-based palliative care) by

Explore more articles in the anthology.

Other Anthologies updated over the last month:

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

• The Dementia Anthology Articles By Dementia Caregivers and those Diagnosed with Dementia.

• The Bereavement and Grief Anthology

• The Caregiving Hacks and Tips - practical ideas you can adapt into the routine

• Giving and Receiving Care Anthology

ComfortZone article

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

I share some gems I discovered:

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

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

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

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

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

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A small reminder that you can find the latest articles on the website landing page. Alternatively, see a list of the recent articles through my profile page.

There is always something new each week, with over 260 articles on the website. It contains resources, anthologies of diverse experiences, evidence-based insights, and caregiving hacks and tips.

If you’re new to Carer Mentor, I recommend starting with this article: Who Started Carer Mentor and Why?

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This January Round-up Newsletter Contains:

• The Letters from a Caregiver Collaboration

• Curious to thrive series - ‘right-sizing thrive’ for caregivers.

• World Lewy Body Dementia Day and Updates to the Dementia Anthology

• Anthologies that have been updated

• A pivot away from ‘gated’, to an open Community Hub due to time constraints

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

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

2. ‘You Each Deserve Your Own Life’ By Jodi Sh. Doff

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

4. ‘Having Compassion for Your Earlier Self’ By Anna Du Pen

5. “Grasshopper, you are the expert” By Sarah Coomber

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

7. ‘The Light We Carry’ By Victoria

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

9. ‘The Gift Of Self-Compassion For The Caregiver’, by Amy Brown

10. “When the Waves Keep Coming: Trust Yourself” by Anna De La Cruz

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

The last four letters were in January. The next letter will be on February 12th.

Curious to thrive series. Right-sizing ‘thrive’ for caregivers

This is NOT a push towards any kind of toxic positivity or silver lining.

When our world has shrunk, and our choices are more limited, discovering small wins and joys can feel beyond reach. It’s hard to keep ourselves motivated.

The aim of this article series is to curiously explore what ‘thrive’ could be for each of us, and try to prompt ourselves for small wins.

The series started with a question:

“How do we live with uncertainty, angst and fear but not be caged by it when…..”

By brainstorming questions, we can ‘right-size’ and test what works for us.

So, the series offers you curiosities and discoveries that I’ve researched.

This is NOT about telling you what to do, or adding to your plate. Far from it. This offers you ideas you can assess for yourself, potential reframes, and food for thought.

I published these articles this month, so we have a growing ‘toolbox’ for 2026—to help us stay motivated and agile when things feel hard, slow, and uncertain.

Gritting our way through won’t get us very far

The brain depresses our motivation when it estimates that the effort required, exceeds the reward, especially when our predictive brain anticipates failure. We can push the gas pedal all the way to the floor, but the brain’s got its brake on.

For caregivers who repeatedly experience heartbreak and challenges, the habenula is highly active. No wonder it can feel like we’re walking through wet cement.

Three articles are about the habenula, the small brain structure that’s your motivation ‘kill switch’ and handbrake:

1. “Meet Your Habenula: Your Motivation ‘Kill Switch’. The Tiny Brain Circuit With a Big Impact.”

2. “Working With Your Habenula as a Caregiver” includes 30 ideas to try to weave into our day or reframe how we do things.

3. “How to put the habenula learnings into practice.”

New books for new discoveries, ranked by long-term value

Here’s the Top Ten list of books I re-read each year. It’s a list I’ve kept since 2017, to discover new insights and ideas if my lens on the world has shifted, or simply to seek out the comfort of familiar insights.

Three new books have entered the top ten list.

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

When new ideas, evidence and discoveries are too time-consuming and effort-FULL, try mood shifters like Music!

• The eleventh ComfortZone article: #11 This Caregiver’s Music: ‘A backbone of music to stabilise this year.’

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

Throughout the year, I curate other playlists with new discoveries and motivators.

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

Alternatively, distract your brain with TV/film recommendations from The ComfortZone

save this link

The Dementia Anthology. Articles By Dementia Caregivers and those Diagnosed with Dementia.

January 28th was World Lewy Body Dementia Day:

Go to the Lewy Body International Website here

I updated the Reference: Types of Dementia with new evidence from The Lewy Body Society and The National Institute for Health Research.

Pat Snyder (a caregiver whose husband suffered from Lewy Body Dementia) hosted Dr Trey Bateman on her YouTube channel last August. I highly recommend listening to her videos.

Anthologies that have been updated

• The Bereavement and Grief Anthology

• The Caregiving Hacks and Tips

• Giving and Receiving Care Anthology

Carer Mentor’s Community Hub: A dynamic space for Q&A and community networking is no longer gated

Last month, I started a ‘Community Hub’ housed on the Website (Desktop Web version of Carer Mentor).

Please note: I’m removing the paywall and ‘gate’ on this hub, and reducing the planned content, due to more time constraints moving forward. Apologies.

If you wish to cancel your paid upgraded subscription at any time, please read this information.

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This is not an end-of-year review.

I’m not ready or in the frame of mind to do a review of 2025. In fact, I want to stay longer in the liminal space.

I want to make more room for reflection, processing feelings, and generally stay a bit longer under the duvet… not literally; that’s not a carer-possible thing. I just don’t have to let a calendar dictate when and how I move through my feelings.

In my bespoke way of thriving, I’m absolving myself from being all perky and full of light and resolutions. I want to appreciate all the colours and shades of the year that’s past and make space for everything, including the grief for those who are no longer here, the pain and fear. It’s ALL here right now. This is what naturally emerges in December and why I tread the month cautiously. I know the signs.

I try not to struggle or fight these natural tendencies. I respect myself enough these days to approach the calendar change with simple curiosity and an open heart. When grief re-emerges, loving kindness is the gift I can give myself.

So, before this monthly roundup post, I shared this article. I recommend reading this if you’re feeling a little out of synch: ‘Another Year? Not yet, thanks.’ Caregivers, those grieving or anyone not quite ‘there yet’. I see you.

The December Round-up Newsletter Contains:

• The Letters from a Caregiver

• Updates to the Bereavement and Grief Anthology

• Updates to the Caregiving Hacks and Tips Rolling list

• Updates to the Giving and Receiving Care Anthology

• The Community Hub: A dynamic space for Q&A and community networking

• The ComfortZone for music/film/tv recommendations

• My Top Ten Booklist of Annual Re-Reads of 2024, soon to be updated for 2025

‘The Letters from a Caregiver’ Winter Season collaboration continued with the 4th to 7th letters:

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

2. ‘You Each Deserve Your Own Life’ By

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

4. ‘Having Compassion for Your Earlier Self’ By

5. “Grasshopper, you are the expert” By

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

7. ‘The Light We Carry’ By Victoria

The next letter will be on January 8th.

The Bereavement and Grief Anthology has four new articles.

Do’s and Don’ts of supporting someone who’s grieving:

1. Q: What are some last-minute gift ideas for a grieving person (that are meaningful but require very little effort)? ‘Like most, I’m out of time and ideas, but I still want to show up for my grieving friend in a thoughtful way— Late-to-the-game & desperate’ By Dana Frost.

Thanks to Dana, I was inspired to write 10 text messages as a gift for a good friend who had just lost the love of his life. They were much appreciated, and I felt useful. As Dana says,” Grief often steals language. This gives them words when they don’t have any. I recommend reading her article for the details.

Anticipatory Grief:

2. Your Grief Is Real, Even If They’re Still Here By

The following quote from CJ’s article offers a sharp focus on a reality few openly discuss:

“She was dying. She needed money now.

I was surviving. I needed money later.

Her cancer dug a ditch between our now two goals, which were once united.

Anticipatory grief will overwhelm you and your relationships. It will create destructive patterns in your life–when left unchecked. Unacknowledged and ignored.”

I’ve seen this with friends, particularly in the US, given the cost of care and college. Everyone worries about future finances for sustaining quality care, and whatever happens ‘later.’

CJ shares some of his practical tips and thoughts about anticipatory grief to help others through what he navigates, caring for his wife Ariana, who has terminal cancer.

Widow | Widower | Grief of a Partner

3. It is Not About Healing From Your Grief By Mel Schlesinger

In this article, and his publication “Loss to Living”, Mel shares his

“journey with grief after the death of my wife and soulmate of 47 years and 9 months”

“From the very first week, I have taken a very aggressive approach to dealing with my grief. Five days after she died, I forced myself to go to my first bereavement support group. And I mean that I forced myself because my instinct was to stay home and be sad.

I will not bore you with everything I did, but I want to share one thing: I did a lot of research and reading, and I still read a lot about grief. What I learned is that there is no timeline for the grief journey. No roadmap tells you to do this during week one, then during week two, and then these things in week three. While there is no timeline or roadmap, we can still make choices. I chose to take action despite the overwhelming impulse to do nothing.” [Read more about his reflections and explorations here]

Grief of a Child / Adult child

4. A Symphony for One Heart Missing I will keep listening. Keep loving. by . Please read this beautiful article and Kelly’s publication. Here’s a sample of why:

“This Orchestra Hall, a sanctuary for Kevin and I, used to be a place for us to spend countless Mother-Son “date nights”. It was where he and I breathed together in rhythm with the orchestra, our hearts beating in harmony with Mahler, Beethoven, Tchaikovsky, Rachmaninoff... Side by side, rain or shine, year after year, those magical nights through every season and circumstance.

He was a child of music - a pianist, violinist and composer. Each note he played, each line he wrote, carried the rhythm of a soul too vast for his years.”

The Caregiving Hacks and Tips

After my mother fell a few days ago, we refreshed our knowledge and our go-bags.

• At Home Safety - I’ve included videos on how to safely check yourself/your loved one after a fall onto the floor, and how to manoeuvre yourself / gently talk your loved one through getting up safely.

• Priming for Hospital. Everyone needs these insights! I highly recommend priming 2 GO BAGS for hospital emergencies.

  Yesterday, my mother and I unpacked and rechecked her Hospital Go-Bag, my Caregivers Go-Bag and the 1-page summary sheet of her medical history, allergies and medications. Chucked: out-of-date protein bars, Swapped cotton blanket, aka big shawl, Rotated short sleeve T-shirts….and I realised that I can use Mum’s go-bag for myself if I ever need it.

Giving and Receiving Care Anthology

In this anthology, new chapters share lived experiences about accessing care support:

• Navigating access to care support in the UK

• Navigating access/insurance and care support in the US

  • Access to medical treatment/interventions

  • Insurance / access to care support, and navigating life around caregiving.

• Navigating Access to Care Support in Australia.

This is an article about organising care in the US by Anna De La Cruz that she shared via a note saying, “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.”

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

Carer Mentor’s Community Hub: A dynamic space for Q&A, and community networking

This month, I started a ‘Community Hub’ housed on the Website (Desktop Web version of Carer Mentor)

Many caregivers don’t have the time, energy or inclination to scroll through a feed of general notes and articles to find what they’re looking for. This is a place to connect with like-minded souls to exchange ideas and ask questions, without being tied to a specific time, date, or place. Only time will tell if this serves its intended purpose.

The ComfortZone

In case you need some music/film/TV series recommendations, Save this link

My Top Ten Booklist of Annual Re-Reads of 2024, soon to be updated for 2025

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Hello, Dear Readers. A warm ‘Welcome!’ to new readers. If you’re new to Carer Mentor, I recommend starting with this article: Who Started Carer Mentor and Why?

November was a mini-rollercoaster of unpaid carers news that pushed me to wade through several reports. Surely the data speaks for what caregivers know?

At first, I felt disheartened that the ‘Keep Britain Working’ independent UK report (published on November 5th) seemed to skip over why people are leaving work to care for loved ones. Its ‘Terms of Reference’ (this is how the purpose and scope of a UK independent review inquiry is set up) predicated economic inactivity on ill health and disability1.

“Reversing the increase in economic inactivity linked to ill health and disability is a national priority.” - “Keep Britain Working” Terms of Reference

I felt the need to write an article that laid out the data, references and how numbers were calculated.

Thankfully, I also found this review, published on May 5, 2025. Adult Social Care Reform: The Cost of Inaction. Inquiry:2 This is the introduction to the Terms of Reference:

Successive governments have presented reform ideas for adult social care, yet few of these have been implemented. This inquiry seeks to understand what this inaction is costing. We will investigate the cost of inaction to individuals, the NHS, local authorities and also to the wider economy and HM Treasury, focussing not only on the financial cost, but also on the personal costs and on potential benefits that are being missed. The inquiry will consider social care for both older and working age adults.

This report is well worth reading and referencing:

Adult Social Care Reform: the cost of inaction. You can also watch the January-March 2025 meetings, where Oral Evidence is given here.

Three key points from Chapter 2 of the report ‘Unpaid carers: the hidden cost of inaction:

31. The amount of care being delivered by unpaid carers is increasing. The 2021 Census also found that 1.5 million carers in England and Wales now provide over 50 hours of care, an increase of 152,000 over the past decade.3 Carers UK told us:

    “The amount of unpaid care provided is likely to be increasing due to the lack of affordable, reliable and good quality social care available, with families left to plug the gaps in formal provision. This has a significant impact on carers’ ability to participate in paid work and contribute to the wider economy, as well as being able to look after their own health and wellbeing.”4

    The amount of care being provided by unpaid carers can also be illustrated by its economic value. Research by the Centre for Care and Carers UK valued contributions made by unpaid carers in the UK at £184.3 billion a year in 2021–22, an increase of £64.9 billion, or 54%, since 2011, and noted this was “equivalent to a second NHS”. 5

39. Research has attempted to quantify the cost of these challenges to businesses and the economy. In 2012 Age UK estimated that £5.3 billion had been wiped from the economy in lost earnings due to people dropping out of the workforce to take on caring responsibilities.6 Their analysis estimated that this had cost HM Treasury almost £1 billion in forgone taxes. 7 Employers for Carers, an employers’ membership forum supported by Carers UK, set out a range of figures in their business case for supporting working carers. They suggested that the impact of staff turnover, absence and stress due to juggling work and caring could be costing UK businesses over £8.2 billion per year and that businesses could save up to £4.8 billion a year in unplanned absences and £3.4 billion in improved employee retention by better supporting carers.8

40. Centrica, one of the founding members of Employers for Carers,9 has reported estimated yearly savings of £1.8 million through reduced unplanned absences and £1.3 million in retention savings due to its carer policies. These policies included flexible working practices, setting up a carers’ network (which, in 2004, they were one of the first employers to do) and a carers’ leave policy to give employees more paid-for leave without using annual leave allowances, so they can meet their caring responsibilities.10

This is the government’s response: Adult social care reform and the cost of inaction: government response to the Health and Social Care Committee (HSCC) report.

“We welcome the committee’s recommendations directed to the independent commission into adult social care. These recommendations will be a valuable resource for Baroness Casey as she leads this important work. Given the scale and complexity of the challenges facing adult social care, the government has deliberately given the commission a broad mandate.” - from the government response.

My head and heart felt somewhat appeased knowing that the HSCC report and recommendations have been published. But the reality is that this ‘Cost of inaction’ report is being fed into another committee that doesn’t fully readout until 2028. Heart sinking??11

The Good News

On November 25th— a day before the Chancellor’s Budget Announcements— the government responded to the Carers Allowance Overpayments review (read more about the overpayments scandal here). Carers UK, with The Guardian’s Patrick Butler and Josh Halliday, exposed the facts and systemic failures faced by working carers. Carers were being pursued for overpayments of Carers Allowance made by the Department for Work and Pensions due to their clerical errors and delayed notifications to carers. Carers UK Press Release

• Government has said it will reassess cases dating back to 2015.

• Where averaging of earnings payments could have been lower, Government will repay or write off debt, including where money has been repaid in full.

• Carers UK’s evidence and dossier of over 100 carers’ experiences of overpayments feel vindicated

November 26. UK Autumn Budget: a little mayhem, a moot point

The long-awaited Autumn Budget was somewhat obscured by the Office of Budget Responsibility leaking the Chancellor’s Budget analysis 40 minutes before it was presented. Ministers in Parliament didn’t have a copy in their hands, but everyone outside did. A little mayhem and drama.

Rachel Reeves, the Chancellor, is freezing tax thresholds in an attempt to plug the hole in the public accounts. “Freezing tax thresholds results in “fiscal drag” – a phenomenon where people are dragged into higher tax bands when they get pay rises.”. If you’re looking for a good summary of this Autumn budget, Martin Lewis is a reliable reference.

No messages about Social Care reforms, but I suppose that’s because the independent commission inquiry by Baroness Casey is ongoing. Meanwhile, the cost of inaction around Adult Social Care reform will keep growing.

The rollercoaster of news led me to reflect on ‘hope’ and how I could relearn or recapture it.

The ‘Letters from a Caregiver’ Collaboration series continues with a third article. This Winter season’s letters so far: ‘Relearning Hope In A Time Of Darkness’

Perhaps actively seeking hope out can help us recognise more inspiring moments and reasons to be hope-full.

In the US, November was Family Caregivers’ Month. CareFest was 18-20 November

Caring Across Generations is proud to host CareFest 2025 in New York City this November. We are bringing together a dynamic community of care champions and innovators, culture makers, journalists, and leaders to share stories, ideas, and dreams for the future of care in America. Unhindered by today’s news or conventional wisdom, we will explore the care solutions our families and communities yearn for. We will grapple with the trends shaping our reality– from artificial intelligence to the attention economy – and place care at the heart of a more hopeful future.

November 18 Panel featuring Jose Antonio Vargas, Kathleen Chalfant, Patrece Lucas, and Kristin Rowe Finkbeiner. “We encounter care at every stage of life, and we can’t predict when we will need or be called to care. How can intergenerational caregiving help change our culture to both better support young people and embrace aging?”

November 20 Creating With Care “with Cristela Alonzo (Upper Classy), DJ Nash (A Million Little Things), and Liz Sargent (Take Me Home), moderated by Dade Hayes (Deadline Hollywood). Creatives behind breakthrough projects will unpack how stories exploring aging, disability and care themes have resonated with audiences and opened new creative pathways.”

An inspiring project. Heart swelling moments.

November 25. UK charity records original music by people living with dementia The Article about the Mumuration Recording Project By Amelia Hill. It was led by two highly experienced vocal animateurs, Emily Barden and Sam Glazer.

The charity ‘Raise Your Voice’ started this music project for vulnerable people living with dementia and their carers, based in two areas around Lewes, East Sussex and Burgess Hill in West Sussex. It is run by professional musicians, singer Jane Haughton and pianists Nancy Cooley and Jenny Bewick

The Murmuration Recording Project aims to unlock memories and sensations for participants while creating a nine-track CD, recorded at Glyndebourne.

‘It is the first time any of them have written songs – and the process has unlocked sensations and memories everyday life could no longer reach, the music capturing the remaining threads connecting them to the world around them.

Weekly workshops, supported by musicians, artists and trained facilitators, prompt participants to articulate and share their inner worlds as the inspiration for composition.’

Inspiring events and words that can change our perspective

(who writes Thousands of Us) wrote this engaging piece ‘The Aisle Between Us. This is my first time......’ Here’s a comment from

“Haley, what a great post — filled with charming details (love the Cute Guy insertion) wrapped around a serious topic that you handled beautifully, both in the store and in your writing. You have a light touch, meting out just the right amount of information and detail at the time. Can’t wait for more. I’m a fan already!”

(who writes Care is a Strategy), shared this beautiful article about her wedding day. The Dream Wedding On love, caregiving, and learning to choose joy without guilt. I loved reading this article, I think you will too.

“Still, after years of caregiving, centering myself — us — felt radical. In my late 20s and early 30s, I lost myself in the logistics of caring for my mom: moving home, balancing work, trying to be everything for everyone. There was a stretch where I didn’t go on a date for two years because I couldn’t imagine making space for anyone else. Over time, through deep reflection and a lot of growth, I began to rebuild my sense of self and I eventually found love with a wonderful partner.

And yet, for the past decade, one thought lingered in the background: What would my wedding day look like now that my mom has Alzheimer’s?” - Viva Mogi

Madeleine (who writes ) offers us a compassionate reframe via some romcom dialogue, and it resonated for me. Daring to imagine you could live a different life. The radical act of imagination during heartbreak. These words have gone into my journal, thanks, Madeleine:

“I don’t identify with the survivor archetype, the one who transcends pain with tougher skin and relentless perseverance. I feel more like clay: reshaped, remade, softened. It wasn’t a choice, and I was never ready for it, but it happened.”

(who writes Music Therapy / Music Musings) shares moments when he offers music to those in need. I recommend reading his articles to discover precious moments of humanity that can counter the harsh headlines. This is another one I just found today: In These Turbulent Times… Embrace The Melancholy Exploring the melancholy in music and art can be therapeutic. There’s comfort in the melancholy. Raymond says, “Today... here is my creative offering“for me and for you. I just think to myself… What A Wonderful World.”

Continuous Learning about other people’s experiences

The researcher in me is insatiably curious, the carer in me wants to connect with empathy with others navigating human-ing-hard experiences. So this was how I found two writers who share their experiences of Cochlear Implants.

Two articles by (who writes ‘Hearing Pain or Deaf Gain’) opened my heart and mind to her experience: ‘On the decision to accept an implant’ and ‘On Assumptions.’ These articles, in turn led me to (who writes ‘A Healing Odyssey’) His article ‘The Barber. Navigating real life.’ translates his experience with the implant for those of us who take hearing for granted.

When I am not wearing my bionic ears I can hear bits of things: the buzzing of the clippers, low frequency rumblings, muted voices speaking in a language foreign to all of those who can hear and a language that has no translation. It used to bother me, not being able to hear well. Now, as when I am wearing my bionic ears and can hear everything, I simply absorb the sound of nothing. I appreciate the nothingness. - Rob Jenkins

In case you just need some comfort recommendations: The ComfortZone

Save this link for when you need some watch/listen-to recommendations:

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Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

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This poem emerged after conversations with friends and text exchanges with other carers in December 2023.

Empathy and listening are more powerful gifts of support than suggesting solutions- no matter how well-intentioned they may be. Be present alongside us, not a 'hero'.

I've been through the days and years of non-stop hyper-vigilant caring when we were looking after my Dad. So, I empathise and relive all the moments in these lines. Trying to help others understand, or rather, educate why we do something one way, and not another, or why their suggestion, 'better way' will not be tried, - can be a constant battle. These exchanges expend energy we don't have.

I'm blessed that my Mother and I forged our alignment, and boundaries together during our care of Dad. So these days, we band together in what we will and won't do, now that I'm caring for her.

If you're a Carer wrestling with frustration vent it out with other Carers on the Carers UK forum (it's an anonymous online forum). Click here

You can also find other useful links here

If you know a Carer, please ask how you can help or just sit in empathy over a cup of tea and listen. Sitting-in-empathy speaks volumes.

I am deplete.
Whilst knowing I need to do more.
I've drained my store, of laughs and spark,
and I'm left with only the dregs of snark.
I know I'm not alone, in saying
'There's more to me than caring ', and thankfully
I've friends who empathise, don't criticise 
my complex situation. They take a stand, 
alongside me, hand-in-hand.

Whilst everyone else, chooses what they'd like to do
I am constrained, in all I do.
Some may feel they're imprisoned to care
But I have reams of love I wish to share.
But please don't tell or 'care-splain every little thing' I do
You don't understand unless you've been through
the rollercoaster that only a carer can understand
drained of sleep,  muted, invisible  talked-to only on the backhand.

If you're here, ASK what we need or what you can do
Don't assume or make it all about you!
Please absorb yourself into OUR routine
Don't make it martyrdom, applause and want to be hero-seen.
We sense false-heroes, easily these days
and tend to forgive fast, but boundary our extreme.
We don't need to expend the energy that's running on fumes
Our loved ones take priority, not your ego or plumes.

So please excuse me, whilst we now retire
fatigued, exhausted our energy expired.
We've done our best with festive season here
in typical carer-can-do agility, without fear,
to fulfil all that was asked, needed, essential, all done, 
Now to the insomniac's version of sleep, this will be the night-owls version of fun
Hopefully we'll recover, restore, recoup and be still
We don't play hero, this is just the typical 'Unpaid Carer's' life we're in.

Other Carer Mentor poems

When I wrote this poem, the stream of frustrations flowed fast.

Caregiving for me, in 2023, was VERY different from 2019. the year before Dad passed.

From this vantage point, I could survey my experience with grief and trepidation, past and future. My heart ached for other caregivers and what they were enduring today. And so I stood with a mix of impotence, fear, worry and anxiety.

Can we pause, be aware and listen to help each other?

If I could. A Poem by Victoria

If I could 
I’d translate the language of Carers,
take their pain and fear, the needs of their loved ones 
and like a stenographer translating with a machine
metabolise what I hear 
to meaningful support and actions 
Tailored to perfection, like a bespoke Savile Row suit,
chalked to fit, smoothed into the lines of THEIR existing well-worn routine.


If I could,
I’d point and draw a line on the ground 
to create boundaries
to exclude the stresses or strains of people and issues 
that try to punctuate the veil and disrupt the calm. Shield. 
And in this frail cocoon of hope, 
We’d grow our light, warm in empathy despite the surrounding pain
if I could


If I could, there would be no ‘shoulds’, 
‘No!’ to never-ending hats to wear or roles to perform
For everyone except ourselves.
No forms to fill out or societal norms to counter or explain
We’d be the glue for love, not to fill the gaps in productivity systems
Or be the constant communication stream which feeds the health machine


If I could, there’d be a village of raised hands to support 
the needs of the many in mutual appreciation and care, 
Instead of loneliness, isolation, and insomniac non-restorative sleep, 
We’d celebrate the tiny joys and relief

If I could, I’d share a deep sound, a musical resonance of trust and comfort
One chorus to instil confidence, 
Hands to connect and offer home-comfort care  
to reassure or embrace those in pain and need.
Then, listen with open-hearted willingness and time, 
for the support that THEY said they need
To feel wanted and believed, 
An individual unto themselves and seen
not a caregiving go-between-machine.
If I could

Could we?

Reach out to someone you know who’s caring for a family member, send a card to someone exhausted or busy, give someone a generous compliment about what they do, or say, ‘I appreciate you. Thank you for being you.’

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

Other Carer Mentor poems

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

Subscribe now

Welcome to our new Carer Mentor community members, it’s great to have you with us.

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

Summary

This article offers my thoughts and experience of buying a wearable device for my father and then for my mother. We had the first device in 2015 and continued using it after Dad passed away in 2020 until last year. The new device works inside/outside the home and has a monitoring team 24/7 for alerts.

Having experienced several traumatic fall events, this offers us both reassurance, particularly during respite or when I’m not in the house.

Like many situations during caregiving, it’s worthwhile to align on the specific step-wise actions if an emergency happens. Scenario-planning may seem tedious or obvious, but believe me, the devil is in the details!

Table of Contents

In the desktop version, you can use the lines on the left of the screen to jump to different parts of the article.

1. Connecting Articles

2. The first device experience we had

3. The second device experience and the UK and US links

4. Apple Watch can detect falls, an option for you?

5. Some helpful information and tips about falls, including 2 videos

6. Personal thoughts and warnings

I decided to write this now for my friend , who wrote this article Alone and wondering if this is the end. When your body scares you. She asked for reader recommendations/advice about wearable devices.

1. Connecting Articles

• Caregiving Hacks & Tips: A Rolling List of Ideas from my personal experience and recommendations from others

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

• Personal reflection: 'Home-aids & Starting the Care Discussion'. You can’t un-see risks once your lens is turned.

2. The first device experience we had

Reasons for buying:

1. To have an emergency team on hand to pick Dad up after a fall and/or to alert emergency services.

2. To have a 24/7 monitoring service.

Key features:

1. A key safe was a requirement

   1. Fixed to a wall outside

   2. Button press code (not digital)

   3. Key inside

2. The red button small pendant was on a cord that was hung around Dad’s neck

3. The ‘homebase’ system was plugged into the British Telecom analogue telephone hard line, where the master socket entered the house.

   1. This is now outdated in many cities as the lines have become digital in the UK.

   2. The homebase had to have a continuous power supply. It would tell you if the power was switched off.

   3. The service included an annual check: test the homebase, check the pendant battery and the response team’s connection

4. When the button was pressed, a response person would speak through the homebase. If we didn’t manage to get to the homebase and respond, they were instructed to call an emergency contact (me), if I didn’t answer, they would immediately call for an ambulance

Verdict:

• We evolved the instructions over time

• The service providers changed, and it was separated into two pieces - the response team became separate from the device providers. Each piece required a subscription. I think it was around £30 total per month. I don’t know what the starting cost was.

• Ideally, the monitoring response team and device team are the same. Don’t assume, ask how the service is managed and executed!

• I stopped this service before the switchover from analogue to digital.

• Important: Some services in the past have provided a ‘team’ of people who would come to your home in an emergency. If this is an option, I highly recommend asking them for specifics:

  • How would their team identify themselves to you in an emergency at your home

  • What is their medical training or general training in terms of aid support? A very important decision-making point. You may decide not to have a response team if they’re not appropriately trained and regulated. If you or your loved one has medical issues, responders who are not paramedics could exacerbate issues or worse, create injuries.

  • What equipment would they bring with them, and how would it be used? In what circumstances?

  • We had thought that a team of 2 trained people would use an inflatable mat or cushion to help Dad if he’d fallen on the floor. It was clear on a couple of occasions that this was not guaranteed or available. In fact, during one fall when the button was pressed, one person came, but they had no equipment and were unhelpful (understatement).

  • But, the pendant was still very useful as it became the safety net when I wasn’t available. The monitoring call team would call an ambulance when the button was pressed. Once something is ingrained into the care routine and familiar as the go-to action, it’s best not to create friction by changing it if possible.

• (Update confirmed Aug 5 2025) Paid care workers are not allowed to get people up off the floor. They have training to support and assist patients/people in moving around. However, if there is a fall, they can only try to talk through getting up safely, if they think the person can. The carer has to call an ambulance for medical reasons.

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3. The second device experience

Reasons for buying:

1. Fall emergency detection, in and outside the house.

2. Can be used outside the home on trips in the UK, e.g. out for lunch with friends

3. 24/7 available monitoring service (no call-out team)

Key features:

1. Wifi pendant, with a built-in speaker. So, it’s like a mobile phone, but without a keypad or screen, and with only one automatic action.

   IMPORTANT: There needs to be good mobile signal coverage for this to work.

2. No homebase system

3. If the pendant has a hard jolt or bump, or rapid fall (air pressure sharply changes), it emits a few beeps and starts dialling the call centre. The call centre asks questions, and if there’s no response, they call for emergency services and stay online until the services are on site. Meanwhile, I’m also called.

4. There is a geofence system. I can imagine that for caregivers of loved ones with dementia, this offers a lot of reassurance. (But I also know some dementia sufferers don’t like to wear devices - Apple’s Airtags are a good substitute).

5. The pendant has a base charger that can sit on the nightstand to make an overnight charge and be close to the bed.

6. There is an app for the device on my phone. It was quick to set up, but it could be difficult for others. There’s a support team that you can talk to to resolve issues.

7. The pendant is a ‘chunk’ but can hide between a blouse and jumper, or under a coat if people are worried about the aesthetics. There’s less stigma about wearable devices these days, I think, given all our wearable tech!

Verdict:

• We use the SureSafe pendant device. They have a great service team here in the UK. Initially, we tried the bracelet. It’s pretty, but relatively heavy for a slim wrist, plus it tended to get in the way. The service team made it very easy for me to return the bracelet and switch to the pendant.

• The subscription is similar in price to the pendant we had before, but in many ways, this is much better. The setup and call team are good. The pendant is quite sensitive to knocks, which I take as a good sign that it works well!

• I’ve no personal experience of devices and services in the US, but US readers made these two suggestions: Life Alert and Bewell Medical Alert

• There are always discounts and offers, so I highly recommend getting clear on your needs and shopping around.

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This is the video for SureSafe. I don’t receive any commission for sharing this. The GPS and fully mobile features mean it can be worn on walks or trips outside the home.

The SureSafe Go Family monitoring or 24/7 monitoring product.

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4. Apple Watch can detect falls, an option for you?

We decided against this option for my mother because

• the battery life of the pendant is longer

• using a watch and setting up and maintaining a phone, the information etc is a lot to navigate for someone who is less ‘Apple-savvy.’ Feels complicated

• Our SureSafe principal scenario:

  • fall detected in the UK, alarm signalled after jolt and immobility

  • someone monitoring 24/7 calls via the device, dials for emergency services and directs them to the GPS location of the wearer

  • The call operator stays online until services are on site, and calls me as the emergency contact.

  • The SureSafe monitoring team have specific medical data that I’ve provided for them to share with emergency services.

• The Apple Watch can call emergency services, after a countdown. However, I can’t identify the details of the automated message or information shared with emergency services. It seems data is encrypted to Apple first, then sent to emergency services and decrypted as needed.

  Does anyone have experience, outside the US about how emergency services are activated and locate someone via the Apple Watch?

  I’m unsure of what happens if someone cannot respond to the call.

• Apple Watch can use, cellular, WiFi or Satellite to contact emergency services. You or someone near by can talk to the operator.

  The Emergency contact defined in the Health App and Medical ID is always called after the emergency services

• The Apple Watch Falls Detection, emergency SOS calls and crash features are great for me but not comfortable, easy options for either of my parents.

Use Fall Detection with Apple Watch

If Apple Watch SE, Apple Watch Series 4 or later, or Apple Watch Ultra or later detects a hard fall while you’re wearing your watch, it will tap you on the wrist, sound an alarm and display an alert.

If your Apple Watch detects that you’re moving, it will wait for you to respond to the alert and won’t call the emergency services automatically. If your watch detects that you’ve been immobile for about a minute, it will make the call automatically.

If your Apple Watch detects that you're immobile for about a minute, it will start a 30-second countdown, while tapping you on the wrist and sounding an alert. The alert will get louder so that you or someone nearby can hear it. When the countdown ends, your Apple Watch will contact the emergency services automatically.

When the call connects, your Apple Watch will play an audio message informing the emergency services that your Apple Watch has detected a hard fall. It will then share your current location as latitude and longitude coordinates.**

**Only available in the United States and Canada. When you call or text the emergency services, your location and encrypted Medical ID information will be sent to Apple. Your location will be used to determine whether Enhanced Emergency Data service is supported in your area. If it's supported, Apple will forward your information to a partner for delivery to the emergency services.

After the call has ended, your watch will send a message to your emergency contacts with your location, letting them know that your watch has detected a hard fall and dialled the emergency services. Your watch gets your emergency contacts from your Medical ID. You can’t set the emergency services as an emergency contact.

• Manage Fall Detection on Apple Watch

  • With Fall Detection turn on, Apple Watch can help alert emergency services when a hard fall has been detected and notify your emergency contacts. If Apple Watch detects a hard fall and that you have been immobile for about a minute, it taps your wrist, sounds an alarm, and then attempts to call emergency services.

    To call emergency services, your Apple Watch or nearby iPhone needs a cellular connection, or needs to have Wi-Fi calling turned on and Wi-Fi coverage available.

    If cellular and Wi-Fi coverage are not available, and your iPhone 14, iPhone 14 Pro, or later is near your Apple Watch, Fall Detection uses your iPhone to send the notification using Emergency SOS via satellite, where Emergency SOS via satellite is available. See the Apple Support article Use Emergency SOS via satellite on your iPhone.

• Set up your Medical ID in the Health app on your iPhone includes How to edit emergency contacts

• Contact emergency services with Apple Watch. When you start an Emergency SOS call while abroad, your watch connects to local emergency services, but it doesn’t send your location or a text message to your emergency contacts. In some countries and regions, international emergency calling works even if you haven’t set up cellular service on the watch.

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5. Some helpful information and tips about falls

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

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

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

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

Creative Ways to Get Off The Floor!

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

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HOW TO GET UP AFTER A FALL - 3 BEST METHODS

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

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6. Personal thoughts and warnings

My father had several falls. His vascular dementia together with his rheumatoid arthritis made his mobility unsteady, he had little/no muscle and his mental-orientation could be unpredictable. Meaning that sometimes, in his recliner chair he’d wake up and try to get up whilst it was still reclined. This caused two or three falls.

Be careful of recliners that can tip forward or back. When your loved one is disoriented they may think they’re in their bed.

Similarly, in bed, a couple of times Dad rolled too hard and became stuck between the bed and the bedside table/drawers. I know it sounds strange but its scary and difficult to manoeuvre from that position. Even without vascular dementia I highly recommend bedside rails to help anyone who has less upper body strength, or has issues getting up and out of bed. The rails prevented some bedside falls.

Bathmats and rugs need to have rubber underneath to stop them from moving on tiles, but even then they can curl up on tile or carpet and become a hazard. I always helped Dad to wear bedsocks that had rubber on the soles - they kept his feet warm and gave him better footing.

One traumatic fall at the bottom of the stairs where he fell backwards was awful. a bump to the head around 8 or 9 pm and we waited hours for the out of hours doctor to come and check him over. The worst part was Dad shouting and insisting I get him up off the floor.

Please resist trying to pick someone up off the floor yourself. Use the information from the videos and try to calmly walk through the steps to help yourself or your loved on who’s fallen, off the floor.

You can be easily injured if you try lifting them. I recommend watching the videos. Be prepared to employ the recommendations and walk around your home to figure out what you can use.

Emergency services could get the fire brigade who have equipment to get people off the floor, paramedics are also trained for this.

Please ‘❤️’ LIKE the article, to guide others to these hacks and tips.

Over to you:

• Do you or a family member have a wearable device as a falls alert?

• Would you recommend a specific device and service?

• What have you done when you or someone had a fall? Do you have any specific tips?

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

This article is part of the Carer Mentor iCARE Dementia Anthology, which contains Articles By Dementia Caregivers and Those Diagnosed with Dementia.

The Carer Mentor: Empathy and Inspiration website continues to expand its resources for caregivers and anyone experiencing a chronic illness.

I’m curating this GoTo space for you, researching resources and tips, and hopefully saving your precious time and energy.

You’ll find a directory of publications and articles within the Dementia Anthology, and the larger iCARE Stack; a portal of hope reminding you that you’re not alone.

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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Table of Contents by publication date.

The legal and care support advice within the books is country-specific, so I’ve separated the contents.

In the desktop version of this article, you can click the lines on the left of the screen as a hyperlinked index.

UK-Based Authors

1. Caring For Nigel: Diary of a Wife Coping With Her Husband's Dementia By Eileen Murray (Published October 8, 2013)

2. Wendy Mitchell was diagnosed with young-onset Alzheimer's at age fifty-eight. She wrote several bestsellers, a blog and was a strong campaigner for Dementia

3. Somebody I Used to Know: A Memoir By Wendy Mitchell (Published June 5, 2018)

4. What I Wish People Knew About Dementia By Wendy Mitchell (Published June 20, 2022)

5. One Last Thing: How to live with the end in mind By Wendy Mitchell (Published June 22, 2023)

6. "Remember When: My Life with Alzheimer's," By Fiona Phillips and Martin Frizell (Published July 17, 2025)

US-Based Authors

1. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life. By Nancy L. Mace, Peter V. Rabins (Published November 1, 1981. Revised 2006)

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

3. Navigating Dementia Care: A Comprehensive Guide for Caregivers to Understand, Cope, and Build Resilience By Marguerite Wood (Published April 25, 2024)

4. No Way Out of This: Loving a Partner with Alzheimer's By Sue Fagalde Lick (Published June 25, 2024)

Chile-Based Author

I highly recommend reading these books by Sammie. They are beautifully narrated through an extraordinarily loving and compassionate lens. Sammie weaves practical tips and the reality of Alzheimer’s caregiving into his love story with Ximena.

Preventing Her Shutdown From Alzheimer's Series By

1. Preventing Her Shutdown

2. 62 Tips For Caregivers Of Alzheimer's To Delay Shutdown

3. Holding On To Her Identity: Losing My Wife To Alzheimer's

UK-Based Authors

1. Caring For Nigel: Diary of a Wife Coping With Her Husband's Dementia By Eileen Murray (Published October 8, 2013)

Eileen shares all the realities of dementia caregiving. While my father’s vascular dementia was very different to Nigel’s, I sadly recognise and loudly resonate with many of the entries in Eileen’s diary—the frustration, lack of sleep, and repetition each day. There is comfort in resonance, but this may be too difficult to read for some, as Eileen is narrating events in real-time.

At the age of sixty-nine Nigel Murray, a retired university lecturer and former Army officer, was diagnosed with dementia. Doctors suspected he was suffering from a rare and degenerative neurological disorder known as Multiple System Atrophy (MSA). However, Nigel also had many of the symptoms of both Parkinson’s disease and Lewy Body dementia and an official diagnosis was never made.

For four years Nigel's wife, Eileen, kept a diary. This was her "safety valve" - an outlet for the daily stresses of caring for him at home, as his mental and physical health slowly deteriorated. In her diary she gives a frank and detailed account of his challenging and erratic behaviour, his bizarre hallucinations, the relentless struggle with his incontinence and the endless disturbed nights.

Even in her darkest moments, Eileen's dry Scottish humour shines through - you will laugh one moment and be moved the next. You can’t help but smile at Nigel's trousers with the “appetite mechanism” and his special “anti-dandruff comb”.

As the dementia advances, Nigel retreats into a busy world of army and lecturing duties, harking back to his earlier days. Eventually, the burden of running her own “one-woman nursing home” becomes too much for Eileen and her quest to find respite care begins. This presents challenges of its own.

This true and touching account offers a unique insight into the day-to-day experience of caring for someone with dementia or a related illness.

2. Wendy Mitchell was diagnosed with young-onset Alzheimer's at age fifty-eight. She wrote several bestsellers, a blog and was a strong campaigner for Dementia

Wendy Mitchell Obituary. Writer and dementia campaigner who believed that people should have the right to choose their own death. The Guardian By . (Monday, 26 Feb. 2024)

Wendy Patricia Mitchell, writer and campaigner, born 31 January 1956; died 22 February 2024

Wendy’s final Blog Post ‘My final hug in a mug….’ at her website

Each of these three books was a bestseller in the UK. I highly recommend them.

3. Somebody I Used to Know: A Memoir By Wendy Mitchell with Anna Wharton (Published June 5, 2018)

Wendy Mitchell had a busy job with the British National Health Service, raised her two daughters alone, and spent her weekends running and climbing mountains. Then, slowly, a mist settled deep inside the mind she once knew so well, blurring the world around her. She didn't know it then, but dementia was starting to take hold. In 2014, at age fifty-eight, she was diagnosed with young-onset Alzheimer's.

Mitchell shares the heartrending story of her cognitive decline and how she has fought to stave it off. What lay ahead of her after the diagnosis was scary and unknowable, but Mitchell was determined and resourceful, and she vowed to outwit the disease for as long as she could.

As Mitchell learned to embrace her new life, she began to see her condition as a gift, a chance to experience the world with fresh eyes and to find her own way to make a difference. Even now, her sunny outlook persists: She devotes her time to educating doctors, caregivers, and other people living with dementia, helping to reduce the stigma surrounding this insidious disease.

Still living independently, Mitchell now uses Post-it notes and technology to remind her of her routines and has created a "memory room" where she displays photos--with labels--of her daughters, friends, and special places. It is a room where she feels calm and happy, especially on days when the mist descends.

4. What I Wish People Knew About Dementia By Wendy Mitchell with Anna Wharton (Published June 20, 2022)

What can a diseased brain tell us about being human, living our own lives better and helping those with dementia get the best from theirs? When Wendy Mitchell was diagnosed with young-onset dementia at the age of fifty-eight, her brain was overwhelmed with images of the last stages of the disease - those familiar tropes, shortcuts and clichés that we are fed by the media, or even our own health professionals. But her diagnosis far from represented the end of her life. Instead, it was the start of a very different one. Wise, practical and life affirming, What I Wish People Knew About Dementia combines anecdotes, research and Wendy Mitchell's own brilliant wit and wisdom to tell readers exactly what she wishes they knew about dementia.

5. One Last Thing: How to live with the end in mind By Wendy Mitchell (Published June 22, 2023)

Wendy Mitchell doesn't fear anything anymore. After her diagnosis of young-onset dementia in 2014, all of Wendy's old fears - the dark, animals - melted away. What more was there to be afraid of when she faced her worst losing her own mind?

While living with her diagnosis and facing the extreme changes that come along with a progressive terminal illness, Wendy wrote two Sunday Times-bestselling books, went skydiving for the first time and supports multiple dementia advocacy groups in the UK. She is known for talking about living with dementia, but now – while she is still able to – she explores dying with it.

In One Last Thing, Wendy embarks on a journey to explore all angles of how we can prepare for it, how we talk about it with our loved ones and how we can be empowered to make our own choices. With conversations on the topic of assisted dying, from those who are fighting to make it legal to those vehemently opposed to its practice, Wendy reminds us that to get on with the business of living, we need to talk about death.

6. "Remember When: My Life with Alzheimer's," By Fiona Phillips and Martin Frizell (Published July 17, 2025)

US-Based Authors

1. The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias, and Memory Loss in Later Life. By Nancy L. Mace, Peter V. Rabins (Published November 1, 1981. Revised 2006)

Recommended by “Someone gifted it to me when we were at the start of this journey and I’ve done the same for other folks.”

Revised in 2006 for its twenty-fifth anniversary, this best-selling book is the "bible" for families caring for people with Alzheimer disease, offering comfort and support to millions worldwide. In addition to the practical and compassionate guidance that have made The 36-Hour Day invaluable to caregivers, the fourth edition is the only edition currently available that includes new information on medical research and the delivery of care. The new edition - new information on diagnostic evaluation
- resources for families and adult children who care for people with dementia
- updated legal and financial information
- the latest information on nursing homes and other communal living arrangements
- new information on research, medications, and the biological causes and effects of dementia

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

I recommend reading the book and browsing the videos in Pat Snyder’s YouTube Channel. There is a gentle reassurance in the narrative of their journey, and simple, actionable suggestions.

“Your husband has Lewy Body Disease. It has elements of Alzheimer’s and Parkinson’s disease.”
How do you cope when you hear those horrible words? Are there medicines that can help with symptoms? Is there no hope?
If your loved one is in the early stage, there is hope. As a caregiver there are things you can do for a person with degenerative cognitive disease to make your daily lives better. There may even be blessings you never thought could happen to you in this journey.
This book is about that very thing. It is real. It happened. Some of it happened because of the choices made by a caregiver who would not settle for a “gloom and doom life is all over” approach.
It is a first of its kind. There is no other book that addresses the topic of enhancing and extending the early stage of LBD.
If you are an early stage caregiver, this story may help you. It has tips on how to make a difference.

Pat Snyder has a popular YouTube Channel:

Dementia caregiver education, encouragement, and empowerment is my passion. This channel is dedicated to John, my husband, who valiantly endured Lewy Body Dementia. Author, Treasures in the Darkness: Extending the Early Stage of LBD Founder, Wake Forest Dementia Caregiver Class, UNC & LBDA Affiliate Moderator, LBD Caring Spouses online support group 2019 LBDA Volunteer of the Year

2. Navigating Dementia Care: A Comprehensive Guide for Caregivers to Understand, Cope, and Build Resilience By Marguerite Wood (Published April 25, 2024)

This book is packed with a lot of helpful information. While it has a US focus, I’d recommend everyone read this. It’s a strong reference guide.

Are you a caregiver faced with the daunting task of caring for a loved one with dementia? Do you want to gain a deeper understanding of the condition to enable you to provide them with the best possible care while also caring for your own well-being? Or are you a healthcare professional seeking to enhance your caregiving skills so you can properly support individuals under your care?
If you're looking for a guide that will help you navigate the complexities of dementia care, then look no further; this is the book for you! come these hurdles and make a meaningful difference in the lives of those they care for.

Caring for someone with dementia is noble and rewarding but it can be extremely overwhelming. Navigating Dementia Care will equip you with the skills and knowledge you need to empower you to give the best support to those under your care while enhancing their quality of life and yours as well.

3. No Way Out of This: Loving a Partner with Alzheimer's By (Published June 25, 2024)

I haven’t read Sue’s book yet, but it’s on my list. I’ve a lovely connection with Sue on this publishing platform, Substack. I’ve listened to her interview with Jane Leder (see below)

About the Author: Sue Fagalde Lick is a freelance writer/musician. After graduating with a BA in journalism from San Jose State University, she spent many years working for newspapers in California and Oregon before going into full-time freelancing. She has published 12 books, as well as numerous essays and poems. She also sings and plays guitar, mandolin and piano, loves to bake, and hikes the Oregon coast. She earned her MFA in creative nonfiction at Antioch University Los Angeles.

Sue Fagalde Lick’s Website

Listen to her interview with Jane Leder at the Older Women & Friends podcast here.

Chile-Based Author

Preventing Her Shutdown From Alzheimer's Series By Website Publication: Inside the Life of an Alzheimer's Home Caregiver

Preventing Her Shutdown Published June 15, 2022

Intimately raw and deeply moving, "Preventing Her Shutdown" invites you into the heart-wrenching journey of a devoted husband who refuses to let Alzheimer's seize his wife. With tender vulnerability and unwavering love, he courageously navigates the harrowing twists and turns of this relentless affliction. Witness the extraordinary lengths one man will go to preserve the essence of their once vibrant love, leading readers on a poignant exploration of the human spirit and the infinite power of true companionship. Prepare to be captivated by this profound tale that will undoubtedly leave an indelible mark on your soul.

62 Tips For Caregivers Of Alzheimer's To Delay Shutdown: Published May 23, 2023

Discover the power of compassion and knowledge in this insightful guide for caregivers of loved ones with Alzheimer's. With 62 invaluable tips at your fingertips, you'll gain the tools and understanding, to navigate this journey's unique challenges and make a profound difference in your loved one's life. Delve into powerful strategies that will help delay the shutdown and preserve precious moments of connection. This book is your companion - illuminating, empowering, and reminding you that every caregiver can bring light and love to those they hold dear.

Holding On To Her Identity: Losing My Wife To Alzheimer's Published September 29, 2024

One of the greatest fears of Alzheimer’s home caregivers is that their loved one will lose complete recognition of them.

This was the one thing I was so terrified of when my wife was diagnosed with Alzheimer’s. She could forget who she is and lose all sense of self. If that happened, she wouldn’t recognize me, her three kids, or any member of her family anymore. Many of us, without any information, assume this is a common occurrence with Alzheimer’s, and this was my horror. I was scared to death.

Holding on to her identity, protecting it in any way I could, was my obsession. Every minute of every day I was with her, I began tireless interaction with her as her 24/7 home caregiver. I knew she might forget who she was at any time.

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This article is part of the Dementia Book Recommendations list:

Broadcaster Fiona Phillips, was an Alzheimer's Society ambassador, and then received an early-onset Alzheimer's diagnosis in 2022 at the young age of 61. She faced the same heartbreaking diagnosis she had witnessed in her parents.

In her memoir, released July 17 (UK), "Remember When: My Life with Alzheimer's," co-authored with husband Martin Frizell, Phillips describes both the challenges of living with Alzheimer's and how life can still bring joy.

Despite cognitive decline, she and her husband continue to advocate for Alzheimer's awareness. Martin Frizell, former This Morning editor, now serves as her full-time carer and has spoken openly about their journey in recent media appearances.

Young-onset dementia affects over 70,000 people in the UK. Their advocacy efforts emphasise the need for increased awareness, funding, and research support.

'I hope this book can show people a little about what it is like to live with Alzheimer’s. How frightening and confusing it is. But also how much life can still bring joy and be valued.' - Fiona Phillips.

With courage and determination, Fiona set out to chronicle what was happening to her in the hope that her book would help others. From the tiny first warning signs - the inability to concentrate and the ‘brain fog’ she wrote off as the menopause - to the gradual loss of her memories and her growing confusion, she reveals how the disease progresses and how she copes. She also shares her experiences with the NHS and the systems that may seem hard for patients and their families to navigate. - Book summary.

I’m not very familiar with the work of Fiona Phillips or Martin Frizell. The book notification appeared in my inbox, so I sought out more information about the book and the authors.

Below are three videos that I found. In the first (July 11, 2025), Martin Frizell introduces us to the book and Fiona’s battle with Alzheimer’s.

On November 16, 2016, Fiona appeared in a video interview as an ambassador for Alzheimer’s Research UK, advocating for greater awareness and funding, and sharing some of her parents’ journey with the same disease. The media appearance was to promote a Christmas-themed Dementia Awareness campaign.

Lastly, on July 12, 2025, Camilla Tominey conducts an in-depth, hour-long interview with Martin. He offers more of his personal experiences and opinions about Alzheimer’s and caring for Fiona.

A few thoughts I’ll be reflecting on when I read the book.

• Fiona was diagnosed with early-onset dementia at 61, similar to her parents. However, the genetic test showed, as Martin puts it, ‘she doesn’t have the gene for Alzheimer’s, she has a predisposition for it.’ When I read the book, I’ll be interested in understanding more about their medical journey and whether there was more explanation around what ‘predisposition’ means.12

• When they share that the tiny first warning signs were the inability to concentrate and the ‘brain fog’ she wrote off as the menopause, I wonder how many other middle-aged women may be doing the same. This struck a particular chord with me, after flip-flopping about some nebulous abdominal pain symptoms I was suffering from since the end of 2024. I would be interested in knowing how long it took from the onset of symptoms to diagnosis and how it was determined.

• I’ll be interested to read about Fiona’s experience, particularly because she cared for her parents who were diagnosed with Alzheimer’s. While she may not want to dwell on the diagnosis itself, I’m curious to learn about how she’s navigating it all.

• I’m particularly interested in reading Martin’s words. He’s mentioned that once he started writing, the anger pushed him to write more. I think that’s something many caregivers can relate to.

  I hope that he and his family have friends and family who support them, but from the interview, it’s clear that he’s been disappointed by some of his friends. I’m sending out much empathy and best wishes to him and his family. Every situation is unique. I’m grateful they are using their platform to raise awareness of Dementia, the need for funding and especially the need for social care reforms. In particular, following the loss of writer and campaigner Wendy Mitchell last year.

Let me know if you start reading this book.

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1. Fiona Phillips’ Battle With Alzheimer's. An interview with her husband Martin Frizell, on ‘This Morning’ (July 11, 2025)

She was one of the most recognisable faces in breakfast TV. But in 2008 Fiona Phillips stepped away from her dream job at the helm of GMTV to care for her father who had been diagnosed with Alzheimer's, shortly after her mum died of the same disease.

Sadly in early 2022, doctors confirmed her worst fears; her ‘menopause’ symptoms were in fact early-onset Alzheimer's.

Martin shares the realities of Fiona’s condition, the impact it’s had on their family, and the signs and symptoms that, in hindsight, were indications of what was to come.

2. Fiona Phillips Opens Up About Losing Her Parents To Alzheimer's | This Morning (November 16, 2016)

With 61,000 dying of dementia in England and Wales last year alone, Fiona Phillips reveals why this is a cause so close to her heart. She is joined by Joy Watson who, two years ago, at just 55, was diagnosed with early-onset Alzheimer's.

A few key points from the interview

• Both Fiona’s parents had Alzheimer's - her mother started showing signs in her 50s and her father in his early 60s.

• Alzheimer's is not an inevitable part of aging but one of about four diseases that fall under the umbrella of dementia, and it's the most common one.

• Fiona first noticed her mother's condition at Christmas when her mother was unusually cold, was crying frequently, and despite her love of all things Christmas, there was no food in the house.

• Her father's condition was initially overlooked because everyone was focused on her mother; in 2009, he was found driving erratically by police and held in prison without the family being notified.

• The disease impacts the entire family, creating resentment and tensions as caregiving responsibilities are often unequally distributed.

• Fiona advocates for more awareness, noting that Alzheimer's can happen to anyone at relatively young ages. Joy Watson was 55 years old when she was diagnosed with early onset Alzheimers.

• The interview mentions an advertisement featuring Santa with dementia. Whilst it may seem controversial, it’s important to raise awareness of what can happen to loved ones, and to emphasise the message that hope exists IF we can work together through research, to find a cure

This is the Christmas advert they refer to in the interview, introduced by Stephen Fry.

3. Living with Alzheimer’s: Martin Frizell on his wife Fiona Phillips’ Diagnosis (July 12, 2025)

More than 70,000 people in the UK live with young-onset dementia, but what does that journey actually look like?

In this emotional and candid episode of The Daily T, Camilla Tominey is joined by Martin Frizell, former editor of This Morning and husband to broadcaster Fiona Phillips, who was diagnosed with Alzheimer’s at just 61. Martin opens up about life as a full-time carer, the couple’s powerful new memoir "Remember When: My Life with Alzheimer's", and how their family has coped with the disease over the last five years. He also offers a raw and insightful perspective on the current state of dementia research and the urgent need for greater awareness, funding and support.

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It’s challenging to write about caring for equality for carers when there is so much inequality; in particular, the injustice of Carers Allowance Overpayments grinds and burns.

I’ve web-published an article about the ‘Inequalities faced by young carers’ because I think it’s important to recognise that they are young caregivers too. Our instinct may be to change or stop them from having to be caregivers, but as you’ll see from the article, this is one of their biggest fears and challenges.

Accepting carers as they are and ensuring there are consistent, available resources and support for carers of any age is essential. Every situation is unique, and there isn’t a one-size-fits-all solution.

I’ve had a short break over the last few days. The first evening, this is what I saw:

There’s been a lot playing on my mind in the first half of this year, specifically around Cancer. Hence, the Index: Cancer Articles & Resources. Building a community support network and resources.

There are too many familial cases of cancer to be complacent about the potential risks and nagging thoughts. So, in advance of this trip, the number one priority has been having a 360 health check done. It’s a private investment that makes so much sense to me.

Here are a few links to different ones:

• BUPA Health assessments

• Nuffield Health assessments

• Top-to-Toe Health check by Bluecrest

When I was employed, I had a BUPA Health assessment as part of my work benefits. This time, I used Nuffield because the time and location fit with my respite break.

The biggest drivers of doing this are:

• comprehensive tests and checks with immediate results for the majority of them, e.g. bloods, ECG.

• I had a full hour with a GP face-to-face. She went through the pre-filled questionnaire in detail, probing to make a thorough report

• I could request additional tests or scans and develop a referral plan pending the results.

This is not a question of trust or issues with the GP practice I’m registered with. They are very supportive. However, for peace of mind and convenience, this was perfect. Convenience not just because of the appointment timing and location, but because I knew that, unlike the NHS, I could discuss everything with one person, and form a plan of action without weeks of waiting for appointments, tests, results and further action.

There are still some outstanding items, but the same doctor will call me to discuss the results.

I’d recommend this as a yearly event for any caregiver, if possible.

I can readily confess that when I was sitting with the GP, there were a couple of times I was teary. Why? Yes, this highlighted how tired I was. It’s always the same on the first day on my own.

But, sitting there, I realised this is one of the first times the spotlight is 100% on me and my health. People were probing and asking me questions, all about me. (If you start automatically saying the birth date of your parent before your own in these circumstances, you can tell their appointments have conditioned you!!)

One of the unexpected outcomes I’ve had from doing this is gaining some broader clarity. Aided by some lovely in-person quality time with one good friend and a three-hour catch-up call with another.

A mid-year review and re-centring.

I’m recalibrating myself and my time, so there may be some changes in how I do things. The core mission to support you, the caregivers, and those you care for won’t change.

However, as I said in a recent article, I can frustrate myself with big ideas and my unpredictable, limited time.

A few photos for you…

I thought I’d share some beautiful photos of Glasgow Cathedral. The stained glass windows were stunning.

I love St Giles’ Cathedral. The ceiling is magnificent. It was a pleasure to hear the choir and feel the music live during the service. These moments refuel the soul.

Enjoy the last moments of your weekend, dear Readers.

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Another little respite post:

Carer Mentor aims to offer heartfelt empathy to caregivers and those they care for. A hub of practical tools, resources, and insights. A community support network—Human-ing hard. A portal of hope. ❤️

Today is the last day of Dementia Action Week Campaign (19-25 May), led by the Alzheimer’s Society (UK).

The Carer Mentor: Empathy and Inspiration’s contribution to this campaign has been a series of articles exploring how to engage, encourage, and empower loved ones with Dementia.

I discovered the work of many people who are leveraging their skills and knowledge, not just to connect with Dementia sufferers, but to engage, entertain and create something meaningful together—focusing on the person, not the Dementia.

The Dementia Action Week articles.

1. The first article included a checklist of Dementia symptoms and some resources to support conversations with a loved one or friend.

2. "Empowering People Living With Dementia." The Brain Charity.

3. ‘Mindfully Using Music with Dementia, and 'A Playlist for Life.'

Today’s offering showcases the creative power of photography and filmmaking:

• A TED talk by Tony Luciani sharing how he and his mother, Elia created an exhibition about their journey with Dementia. Who’s sparking who here? The Photobomb is a beautiful lightbulb moment—pun intended.

• Creativity and Dementia Intertwined: Filmmaker Michelle Memran discusses the making of her 2018 documentary film "The Rest I Make Up," which follows the groundbreaking playwright, director, and teacher María Irene Fornés through her journey with dementia. A beautiful reciprocity emerged.

A mother and son's photographic journey through dementia (Feb 2019)

Artist Tony Luciani was testing out a new camera when his 91-year-old mother, Elia, snuck into the background of his photos. The spontaneous images that resulted sparked a years-long collaboration, with Luciani documenting his mom's life and spirit as she lived with dementia. In this touching talk, he shares the stories behind some of their favorite shots, capturing the joy and grief of caring for an aging parent. - TED

You can see the photographs on his website

Tony Luciani’s artistic photography gave his mother, Elia a means to express herself. She’s engaged in both the creation and conceptualisation. We can see their mischief-making in some of the photos.

They managed to collaborate and draw us into each photograph, to see beyond the obvious. Each composition has a profound meaning, and we wonder what Elia’s thinking as she models for each photo.

Creativity and Dementia Intertwined: The Story of María Irene Fornés "The Rest I Make Up.”

Can the acts of creativity offer greater reciprocity — A different kind of communication process, allowing the person with Dementia to lead for a change?

Filmmaker Michelle Memran discusses the making of her 2018 documentary film "The Rest I Make Up," which follows María Irene Fornés, the groundbreaking playwright, director and teacher, through her journey with dementia. "The Rest I Make Up" isn’t a traditional story about Alzheimer’s disease: “It’s not a film about dementia, it’s a film about how you live a creative life, no matter what.”

This Dementia Spring video features Michelle Memran discussing her documentary film about María Irene Fornés, a Cuban-American playwright who had dementia.

Timestamp 2min30 Maybe this is The thing. She's writing she's writing into the camera but she's not you know sitting down and writing herself it requires another person to be receiving.

And we use the camera in all sorts of different ways. We used it as a letter writing device. We use it as a device for memory to show her you know what had happened the day before. You know sometimes I'd give her the camera and I'd say, ‘you know tell me what you see.’

It didn't require her to sit down and try to do something that she could no longer do I met her where she was at. Talking was was easy for her so just like let's have a camera there and see what happens.

Michelle spent a decade working with Fornés, using a camera as a creative tool for communication and memory preservation.

They used location visits as memory triggers, helping Fornés recall stories about Cuba and her theatre career.

The relationship evolved from journalist-subject to a deep friendship, with Michelle becoming involved in Fornés' care until her death in 2018.

Timestamp 4min33 The creativity was the way in. The collaboration was the way in but the friendship and her love of me allowed me to be present for all that time. Like we always think of a caregiver as a caregiver we're giving so much, but the reciprocity in that process was… it was integral for me.

I mean people always say, ’oh my God you did so much!’ and I'll be like are you kidding me I mean I got a master class about what it means to be a creative person I wouldn't have been an artist had I not met Maria Irene Fourness.

[Read more or find links to watch the documentary film here: The Rest I Make Up. Screened in 2020.]

Every situation is unique - this is what I reminded myself watching this.

This situation between Michelle and Maria, filming together was a beautiful reciprocal collaboration.

From seeking out Maria to realising the camera could be their tool, the story is full of agency and empowerment..

As Michelle says at the start of this video - ‘The takeaway is not about a film about Dementia, the takeaway is about how do you live a creative life, no matter what.’

Can the acts of creativity offer greater reciprocity, or allow the person with Dementia to lead for a change? I think its unique to each person’s creativity and motivation.

Our context was very different..

I cannot imagine my father would have wanted to participate in any creative act. He had several health issues that took precedence over dementia—mobility/stability, cancer and heart issues stopped us doing many things.

Basic activities and care during the day were enormous feats given his lack of energy.

So perhaps there’s a little envy when I see these talks and acts of creativity —not so much in what was created, but in the collaboration, producing something together—the quality time and complicity.

And yet, Dad and I had our music moments. Being present, together and music.

I used to say that when he slipped into snores I could fully relax and allow myself to feel a little joy of being connected with him, as a daughter again, with our music.

In that moment, at peace, music was our bond made simple— no words required, just Be.

I wonder how dementia suffers could use music, photography and film making as creative tools with family members and friends to engage in something where the Dementia is not centre stage.

Perhaps, given everything we do as caregivers, we can make small actions rather than aiming too big like make a playlist together.

A last PRO tip: try typing in ‘Dementia Playlists’ in the Spotify Search window. Enjoy!

For you, the caregivers or if you are someone experiencing dementia, please know, you are not alone, there is a community support network right here, that cares.

• There are useful links to support organisations in this article.

• If you’re wondering about how to talk with someone with dementia I recommend reading articles: Conversations with Someone Who Has Dementia. An exercise in patience and What Not to Say to Someone With Dementia. Avoid falling into these bad habits. (Give up your need to be right - is easier said than done, but I 100% agree with Kirbie on this point.)

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

This Dementia Action Week Campaign (19-25 May), led by the Alzheimer’s Society (UK), focuses on raising awareness of symptoms and promoting early diagnosis of Dementia.

The "Empowering People Living With Dementia" article introduced The Brain Charity and its ‘Music Makes Us!’ videos, which combine exercise and speech therapy with engaging dance moves and karaoke.

This article continues the theme of Dementia and music, exploring how to engage, encourage, and empower loved ones with Dementia.

I discovered the work of many people who are leveraging their skills and knowledge, not just to connect with Dementia sufferers, but to engage, entertain and create something meaningful together—focusing on the person, not the Dementia.

Today’s offering:

• Engaging with music is a therapeutic and empowering experience. Introduction to : Sage Stream, the Ageing Experience and the Institute for Music and Neurologic Function. I recommend exploring Sage Stream for at-home concerts and an interactive music experience.

• Creating music. Introduction to and his team at the charity T.I.M.E. (Together In Musical Expression). They make music accessible to everyone, ‘breaking down barriers and bringing people of all ages and abilities together to experiment, grow, and have fun through music.’1. The video is one example that showcases how they engaged with a dementia community.

• Creating and re-accessing our most meaningful music memories. Introduction to the charity Playlist for Life, founded by writer and broadcaster Sally Magnusson, in 2013.

• Reframing music as a tool for memories and wellbeing.

Let me know by June 1st. I’d love to include more stories and experiences in the Dementia and Music Anthology. This collaboration is open with no deadline. The first update is scheduled for the second week of June.

Engaging with music is a therapeutic and empowering experience.

Anthony Cirillo: Sage Stream, the Ageing Experience and the Institute for Music and Neurologic Function

I was intrigued and inspired by what I discovered when I connected with Anthony:

Sage Stream (sagestream.live) is a live-stream, real-time, video music network that provides live music concerts for older adults (and their caregivers) in all settings. Music from all genres and time-frames are available from more than 100 artists from around the world. Artists like Ben Mauro, guitarist for Cher and Lionel Richie; Ines Delgado, a violinist with the Royal Philharmonic; and other artists who have supported or been on stage with major superstars. Sage Stream was founded to help relieve social isolation, ease caregiver burden, and provide senior living with an affordable music service. Sage Stream is ideal as a back-pocket solution for senior living should entertainers cancel; during a health or natural incident; for hard-to-fill hours and weekends.

Founder is a health and aging expert and a lifelong musician. While working in hospital marketing and gigging full time at night, he left the nightclub scene and fell into singing for seniors, some 3,000+ performances ago. That changed his hospital career into one focused on aging. Currently, in addition to Sage Stream, Anthony does keynote speaking in the industry; regular TV spots in Charlotte; as well as writing for numerous publications. He also has products for caregivers, all of which can be found at theagingexperience.com.

Anthony is also a board member of the Institute for Music and Neurologic Function as well as a member of the Nationwide Financial / National Council on Aging Health and Wellness Roundtable and the Bank of America Elder Care Policy Roundtable.

From the video (at Timestamp 2.28): Harry Ballan (Chairman of the Board at IMNF) says

“The biggest moments that you create for people—when you say to someone, choose a musical instrument, make music with it, and you have people and they improvise, and they start to interact with each other— it's the first experience of agency, sometimes in months or longer.”

Creating music: breaking down barriers and bringing people of all ages and abilities together to experiment, grow, and have fun through music

I recommend reading ’s article: “At 99, She Wrote Her First Song Making music accessible – at any age, for any ability.”

The article highlights the work of his charity T.I.M.E. (Together In Musical Expression); He and his team engaged with Dementia sufferers at Peaceful Place to create a song, make music, and have fun!

Watch the video ‘Holding Onto Those Memories’ below

Creating and re-accessing our most meaningful music memories

The charity ‘A Playlist for Life’

Playlist for Life: The website and the resources

The resources page is full of free materials to help you at each stage of your playlist journey, whether you’re making a personalised playlist for yourself or helping someone to make theirs.

Watch the 2-minute video below to give you an introduction.

These are freely available resources that anyone can use!

The beautiful story of why Playlist for Life was founded

Playlist for Life is a music and dementia charity. The charity was founded in 2013 by writer and broadcaster Sally Magnusson after the death of her mother, Mamie, who had dementia. Our vision is simple: we want everyone with dementia to have a unique, personalised playlist and everyone who loves or cares for them to know how to use it.

Our vision is simple: we want everyone with dementia to have a unique, personal playlist and everyone who loves or cares for them to know how to use it.

Playlist for Life the YouTube Channel

The charity’s website: A playlist of personally meaningful music can help people living with dementia

September 19, 2025 is National Playlist Day in the UK, led by the charity Playlist for Life.

Reframing music as a tool for memories and wellbeing.

Can we …

• be more mindful about using music to motivate ourselves for specific types of tasks each day?

• enrich dementia care with personalised music for daily activities?

While music is part of my DNA I hadn’t thought deeply about how I could PROactively use playlists, or use them with an intentional purpose.

I have a playlist I switch on when I’m doing boring tasks. It’s an automatic action to make the task more pleasant. In my mind it’s a reflex. I hadn’t thought about using it to motivate me, to trigger an action or to help me switch an emotion by music-memory-association.

Now, I’m thinking more about how I use music as cues for routine tasks. Could this help with my memory and be a cognitive support in the future?!?

Neuro-plasticity is an amazing concept and who knows the potential of what we can do later, if we pre-program our brains with familiar music now!

Can we be more intentional, mindful about how we use music?

The opening bars of Alan Silvestri’s Suite from Forest Gump feels like an unfurling. It’s perfect for my ‘creative’ playlist.

Unlike the days of caring for my father, which were unpredictable and fraught I now have periods of time to read, research and write. The first thing I do is play this piece….take a deep breath, and exhale. Breathing out any tension, to inhale new ideas.

The music and film takes me back to more carefree younger days.

It’s no wonder then, that when I hear this piece randomly, on the radio I can feel myself relax

So now, I’m exploring how I can mindfully use other songs and classical pieces. Music memory associations feels like it could be a powerful and simple tool.

How will you be cultivating your music experiences moving forward?

Let me know in the comments below.

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

I write about my caregiving experiences with a particular focus on cancer, dementia and grief. The idea behind Carer Mentor is to build a care-centred community network, dedicated to sharing empathy, offering personal insights, and recommending helpful resources.

The desktop version of the publication serves as the website—a one-stop hub to visit when you’ve limited time and energy. There are many anthologies, links to resources, and directories to other publications where authors share their experiences—a portal of hope. ❤️

Here is a link to the Dementia Anthology, where authors share their personal experiences.

In the previous Carer Mentor article, I shared the checklist of Dementia symptoms and some resources to support conversations with a loved one or friend. The article leverages the information and knowledge of The Alzheimer’s Society.

Every situation is unique. In 2015, my Dad’s traumatic hospitalisation and subsequent behavioural episodes were a torturous period. It was a watershed moment, a tipping point for all three of us. Before this, his heart failure, rheumatoid arthritis and mobility issues were stable and manageable.

Sometimes, cognitive changes are gradual, making it more challenging to discern the shift in symptoms. Ours was an abrupt change with a broader, more profound impact, due to the destabilisation of Dad’s heart condition.

Dad’s frustration, depression, and impatience with himself were painful to witness. He would look at me and, without words, helplessly communicate ‘He knew, I knew that he knew lots of things were wrong’—I think others know that gaze.

This is why, when friends have asked me for advice, I suggest creating a comfortable space for their parent, friend, or partner to share their worries first, in those early stages.

Asking gentle, open questions with empathy is easier said than done, because the conversation and the questions themselves can evoke a myriad of emotions.

Initially, when I was torn between work and my parents’ needs, I was in ‘project management’ mode, trying to identify ways to eliminate safety risks—installing motion-detecting lights, and changing the bathroom door handles to be openable from both sides.

While there were no more ‘locked in bathroom’ events, I had to reconcile with myself, the hard way, that it’s impossible to prevent every issue. Life happens. We can’t wrap them in bubble wrap and stop them from doing things!

We’re perfectly imperfect humans doing our best. Our loved ones with dementia may not be able to articulate their frustration and other emotions. Simply being present and holding hands, or listening to music together or narrating through ‘remember that time when..’, are powerful loving ways to interact together.

During Dementia Week, 2024, I wrote about ‘Connecting with Dementia Sufferers’, meeting them where they are, not expecting them to meet us where we are. Naomi Feil’s work and Validation Therapy were inspiring discoveries.

This year, I want to look beyond the condition itself and discover how we can engage, encourage, and empower loved ones and friends with Dementia.

I discovered the work of several people who are leveraging their skills and knowledge, not just to connect with Dementia sufferers, but to have fun, make memories, and enjoy the time altogether.

For those who’ve been following Carer Mentor: Empathy and Inspiration for a while, you know how much I value music. It’s part of my DNA. It’s been my therapy and a source of relief. It was also something that Dad and I could enjoy together, with or without words. It’s been amazing to see how music therapy and other creative endeavours are being employed.

Today’s offering:

• Learn about The Brain Charity, which offers easy-access resources to engage with individuals affected by dementia or those living with a neurological condition.

• Link to free YouTube videos designed to promote healthy exercises and speech therapy. These dance moves and songs are suitable for anyone to try.

The Brain Charity

The Brain Charity, a UK-based organisation. Here’s how they describe their work:

Each year, we provide practical help, emotional support, and social activities to thousands of people from all over the UK. We support anyone based in the UK who has a neurological condition, and their family, friends, and carers too.

Click here to find out more about the different services we offer.

Music Makes Us! is The Brain Charity's innovative music-based therapy for people living with dementia.

The online YouTube Playlist of videos:

👋🏻 There are 39 videos!

🎶, Music and karaoke.

🕺🏻 Physiotherapy through dance. These are exercises appropriate for different positions (sitting, supported standing, standing)

💡Clear health and well-being explanations

🗣️ Guided speech and language therapy

Two videos by The Brain Charity ‘Music Makes Us!’

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About the Brain Charity

The information below has been taken from The Brain Charity website

Why we’re needed

Our most precious memories, hidden dreams and the thousands of subtle differences that make us who we are, are all housed in one amazing, unique and fascinating place.

The human brain is the most complex structure in the universe, and the most important part of who we are. It runs our whole world, moves our body, makes our decisions and even tells us when to smile.

For someone newly diagnosed with a neurological condition, life may become very lonely and frightening. People can lose control of their lives and many face unemployment, poverty and social isolation.

At The Brain Charity, we champion neurodiversity and help anyone affected by a neurological condition to rebuild their lives and achieve their potential.

Currently, about 40% of our staff members have a neurological condition or are neurodivergent. It is really important to us that the lived experience of our client group is reflected in our employee team.

What we do

There are more than 600 different conditions affecting the brain, spinal cord or nervous system. These are called neurological conditions.

A neurological condition is any condition that affects the brain, spinal cord or nervous system.

Many are well-known, such as stroke, dementia, cluster headaches and ADHD.

There are also hundreds of conditions that only affect an unlucky few, such as trigeminal neuralgia, Alice in Wonderland syndrome and Huntington’s disease.

Some neurological conditions can begin suddenly, such as brain injury. Some you are born with, such as epilepsy. Others, like multiple sclerosis, can develop over time.

The Brain Charity is the only charity in the UK to be here for every single one of them.

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

I was initially excited to read ‘Contented Dementia’ because it was recommended by a couple of people in different Carer Forums: ‘Contented Dementia1: A Revolutionary New Way of Treating Dementia: 24-hour Wraparound Care for Lifelong Well-being (Published August 6, 2009) by Oliver James

I found myself in a small rabbit hole while reading this book, trying to assess whether its “revolutionary new way”, the proposed SPECAL Method (Specialised Early Care for Alzheimer's), was worth recommending to you.

I was hopeful and primed to like it because of the recommendations, and then something didn’t feel quite right to me…I’ve spent some time researching and trying to understand why it makes me uncomfortable.

At first, I felt that it could enable a stronger, easier connection and make caregiving more manageable. Then I wondered how much time is needed to facilitate this approach.

I became uncomfortable with the burden and expectations this places on caregivers, when ‘care’ is only a fraction of what most caregivers do. So I did a little research.

Several carers have experienced positive improvements in caring for a loved one when using this method. Some of them said this decreased over time, with the disease progression. Others have said it eased communications when the person with Dementia was very agitated.

Caring for anyone with dementia changes over time, and in my experience, it’s highly individualistic; it depends on your relationship with the person you care for, the stage of cognitive decline and the type of dementia they have.

This book is part memoir of Penelope Garner’s experiences. It also advocates for a care approach for Dementia sufferers, based on her experience. It seems like a straightforward approach. (I haven’t been trained on the method, and I don’t know the specifics.) However, from the book, I think it oversimplifies a complex and unpredictable situation that changes over time.

It’s sparked controversy within the dementia care community. The debate centres on striking a balance between ensuring a person's comfort and safety and respecting their autonomy and right to make choices, even if those choices are based on a different reality than the one perceived by others.

The three principles of the SPECAL (Specialised Early Care for Alzheimer's) Method are based upon the assumption that dementia patients can no longer store new information efficiently:

• Don’t ask questions.

• Learn from them as the experts on their disability.

• Always agree with everything they say, never interrupting them.

The method tries to use older memories as reference points,

“If Penny’s techniques are employed, they do not lose track completely of present-day reality as experienced by the rest of us. It is possible to help them to connect their historically based way of perceiving situations with the necessary tasks of everyday living, like eating, going to the loo and sleeping. In a phrase, Penny’s method ‘makes a present of the past’.

Finally, it outlines how these reference points and the method can be used when the person moves to a nursing home “to be with their peers”

At this stage, it is in their best interests to be with their peers, so long as they are assisted by informed carers working on a rota system. Thankfully, it is eminently feasible to transfer the SPECAL package developed at home to the nursing home, making the job of the staff much easier.

I wonder how much time care workers would have to dedicate to each person to implement this Method.

The Alzheimer's Society has expressed concerns about the SPECAL method, particularly regarding its alignment with the Mental Capacity Act 2005 (UK), which emphasises respecting the individual's capacity to make decisions and be involved in their care.

Advocates and comments by Caregivers:

• The Good Care Group

• Comments on The Alzheimer Society Dementia Forum

Contradiction to person-centred care: Critics argue that the SPECAL approach, particularly the suggestion to "always agree with everything they say" and "never ask questions", could be seen as conflicting with the principles of person-centred care, which emphasises recognising and respecting the individual's personhood and unique needs.

But I can imagine situations where the approach could be a welcome relief to both carer and patient. The issue may be that it is not always applicable, which makes it feel reductive. Not for all, not all the time. Great in theory, but time and labour intensive, with variable results? Perhaps it’s too subjective…it depends on when… You can see I’m not convinced.

“Contented Dementia” rests on the premise that every situation can be ‘content’, ignoring the behaviour and personality changes that occur with a deterioration of the pre-frontal cortex, for example, lack of impulse control (a typical Alzheimer’s symptom). In addition, Dementia isn’t one disease; there are subtypes with differing symptoms.

Halfway through the book, I felt it was a rose-tinted, hero-journeying narrative - an ideal or overly optimistic prescribed approach. For any family caregiver who is exhausted, trying to work and care for a loved one with dementia who has behavioural issues, it seems unrealistic.

Every memoir and experience holds valuable reflections and thoughts. However, trying to advocate a one-size-fits-all method seems a stretch.

Perhaps, the most concerning for me was how easily a caregiver could read this, and exacerbate their existing guilt through ‘not effectively’ enabling the ‘contentment.’

Taken from a comment online: The book essentially counsels caregivers to totally subsume their own emotions and needs and immerse themselves in a world of make- believe, devoting all their attention to the patient. One example struck me as particularly absurd - the patient was a woman who was a champion bridge player prior to her illness - and the “solution” to her agitation and anxiety was for her caregivers to to host daily, fake bridge games involving props and multiple people play-acting the roles of bridge players. Seriously? How is that remotely practical for a family member with sole caregiving responsibilities, trying to juggle work and their own family commitments?

The SPECAL method has not been peer reviewed as a clinical approach, and I’ve not seen a meta-analysis. However, it has been recommended in a few carer forums. (Additional reference2)

It would be helpful if there were more evidence of the clinical benefits for the patient and the caregiver. A real-world evidence-based study of caregiver benefits?

I’d be interested to hear your thoughts and opinions if you’re a caregiver who’s read this book.

An alternative perspective.

Is this method trying to perpetuate a delusion that we can enable someone to be content all the time? Like trying to be happy all the time?

In my opinion, it’s futile to expect we can enable loved ones with Dementia to be ‘content’ all the time. I also think that it’s a dangerous expectation to place on a caregiver.

Caregiving is a rollercoaster of seismic peaks and troughs, made even more seismic by Dementia. If you’re on your own, you need all the tips and support you can get to help you navigate forward.

Here are some tips and ideas from numerous experienced caregivers. These feel more aligned with my personal experience: 'How to connect and communicate more effectively.' #1 Connection over correction. Amplifying the work of Dementia Action Alliance, Pat Snyder and Lynette Wilson. After watching their YouTube video, I realised I needed to condense its content for our community. It’s full of practical tips and ideas that can help anyone who interacts with people who have dementia.

This article offers several books to support you and your caregiving:

Nothing is simple, straightforward or clear-cut with Dementia.

We seek helpful information and support wherever we can.

I think my discomfort with the ‘Contented Dementia’ book, is that if I’d known all this information when we were caring for Dad I may have tried the method. I know we were already overwhelmed, AND sometimes we had to counter Dad’s wishes for his safety.

I don’t presume to know your situation, dear reader. Perhaps you’ve discovered great success with this Method. I just want us to be wary of advice/recommendations/methods. What may work for one person may not work for another.

Whether it’s the SPECAL Method or the Dementia Action Alliance advice, I hope something offers you more support.

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Warm wishes to you and your loved ones.

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This map of insights focuses not only on the person diagnosed with cancer but also includes the 360’ perspective and relationships of all involved: caregiver, friends, family, doctors, nurses, and broader care support.

The aim is to provide a big-picture overview leveraging insights from many sources, e.g. my personal experiences, the Cancer Anthology, the Carer Mentor community support network, Macmillan Cancer Support, Carers UK and other experts/organisations.

Premise for this Cancer Project (2025)

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

• April. Introduction to The Cancer Care Journey, an Insights Map of Lived Experiences.

• April. The Cancer Care Journey: The Broader Context

Currently being updated.

Read more

Hello, Dear Readers and new members of the Carer Mentor Community!

This second article is part of The Cancer Care Journey, which is housed in the iCARE Stack of Carer Mentor.

This is about expanding our lens of cancer and treatment to appreciate each patient's broader care context and life.

The first article was an Introduction: The Cancer Care Journey, an Insights Map of Lived Experiences.

Skip to the The Broader Context.

Recap of The Cancer Care Journey Initiative By Carer Mentor

In January, I wrote the premise for a significant amount of my writing work this year: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’

For World Cancer Day (February 4th), I collaborated with other writers/creators to publish iCARE: The Cancer Anthology for and by those with cancer and their caregivers (aka everyone around them).

Today, this empathy and inspiration focused on Cancer continues with ‘The Cancer Care Journey.’ I'm building an evolving reference map of insights¹ and enlisting collaboration support through a new Carer Mentor Kinship initiative2.

The focus is not only on the person diagnosed with cancer but also on the caregiver, friends, family, doctors, nurses, and broader care support.

The aim is to provide a big-picture overview leveraging insights from many sources, e.g. my personal experiences, the iCARE: Cancer Anthology, the Carer Mentor Kinship (support network), Macmillan Cancer Support, Carers UK and other published evidence/peer-reviewed articles and experts.

This is an opportunity to build an anthology of experiences to serve others and amplify the words/work of writers, creators, and organisations.

Carer Mentor is a hub, portal for its community, and networking agent.

It’s about sharing chapters from our experiences to generate more actionable insights, questions, and tips and explore the different facets of the cancer care journey in greater depth.

When those first tests and consultations are performed, many people feel lost and overwhelmed by all the information and booklets they’re given. It can feel isolating.

Using a simple framework of a cancer journey, we can map diverse real-life experiences, compare thoughts/events and connect/support each other more easily.

Each experience is unique because each person’s circumstances are unique.

Offering a spectrum of insights can give readers different snapshots of what fits their situation and what questions or mindsets make sense for it.

The information here is NOT medical advice (always seek advice from your doctor).3

The Cancer Care journey of unique LIVED experiences needs to involve more than ‘just’ the medical treatment/interventions or steps in a path. For example,

• the human experiences of how we navigate Cancer.

• how we, as the patient/caregiver/friend/family, engage with doctors, medical professionals and support organisations, and they with us, to optimise our care, health, and outcomes

• actions we can do or questions we can ask to minimise potential disconnects in information/communication

• building stronger relationships through trust and alignment

• seeing the big picture and details to understand what we need to know to empower, support and advocate for ourselves, our friends, and our family along the Cancer Care Journey.

What considerations/factors influence cancer treatment beyond the medical steps?

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The Cancer Care Journey: The Broader Context

This article highlights the broader Context considerations of a patient’s diagnosis and medical treatment.

How a patient responds to a treatment is influenced by their life. This may seem obvious, but when we consider relationships, lifestyle, support professionally and personally, and finances, we can better imagine the potential impact, stress and anxiety that may surround everyone involved as they navigate cancer.

Some considerations I’ve noted:

• Friends/Family and Caregivers

• Daily life activities and lifestyle

• Mental wellbeing. Neurodivergence. Cognitive disability or neurodegenerative illness.

• Physical well-being. Physical disability or chronic health condition/illness.

• Diet, exercise

• Cancer awareness/knowledge and access to references and resources

• Care support: nurse, nutritionist, occupational therapist, counsellor.

• Work: environment, colleagues, workload flexibility,

• Income and finances

• Life administration: Wills, Powers of Attorney, Executors.

• Medical Information: Emergency Contacts, History, Allergies, Medications, Operations, Doctors’ contact details.

Let’s ensure we see the whole life context of someone with cancer.

What other considerations would you highlight?

The Diagnosis and Treatment Pathway

There are life-context considerations, as I shared above, and then there’s thinking about navigating each step of diagnosis and treatment4. — consulting with a doctor, talking to a support organisation, negotiating about work responsibilities and time off.

I’ve noted various considerations alongside each diagnosis/treatment pathway step—aspects to explore through lived experiences.

At each step in the pathway

• People involved, interactions, and dynamics

• Priorities / main drivers or motivations

• Challenges/barriers and concerns

• Decisions and trade-offs

• Goals, expectations and aims

• Outputs, learnings and resulting actions

Life between the steps /broader journey context

• Communication

• Building support

• Changes to work, relationships, self-identity

• Reevaluating priorities, routine, habits

• Steep learning curve, knowledge building

• A different kind of administration: tracking, organising and monitoring appointments and letters to ensure we’re clear on the purpose of each interaction/medical step or how/where the patient ‘case’ is discussed.

Living with Treatable Cancer

• Monitoring

• Living with uncertainty

• Limbo between scan & results

Palliative / End of Life

• Symptom treatment for comfort

• Pain management

• Needs, wishes

• Unpredictability, e.g. frailty and falls

Before Diagnosis / Survivorship

• Prevention

• Boosting/improving our immune system response

• Family History

This is not a complete or comprehensive list! What would you want to include?

I placed ‘Before diagnosis/Survivorship’ at the end of this list because, having been part of several cancer journeys, I’m sensitised to my cancer risks and the risks of others I love.

I’ve friends and other family members/close family friends who have been diagnosed with cancer: different cancers, stages and ages.

You can see why I want to share what I know and translate the tsunami of information into meaningful insights that others can use. This isn’t just for you, the reader. I’m already tailoring thoughts and tips to other caregivers and friends.

The Even Bigger Picture and the New Innovations.

Every year, there are new advances in immunotherapy, chemotherapy, and how cancer is treated. More people are living with treatable cancer. Medical experts may be comfortable with seeing some cancer types as ‘a chronic illness5’, but the general public and society still need to catch up with this mindset. What does this mean to someone with no medical knowledge?

Fear, stigma, taboos and disconnects persist. We can shift the narrative.

In the early stages of tests and diagnosis, families and friends learn a new vocabulary, shift their mindset, and try to understand ‘how things work’.

All this takes place within the context of our broader lives and relationships. Everyone is affected.

The kaleidoscope of experiences is infinite. Sharing them can help others. This is why I’m building The Cancer Care Journey as an index reference and resource.

Today, more than ever, the most potent kindness can be connecting in empathy with others through our lived experiences.

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A little reminder of an article I wrote in January that’s the premise for a significant amount of my writing work this year: ‘Why iCARE about Cancer. Past and present events that underscore World Cancer Day for me.’

For World Cancer Day (February 4th), I collaborated with other writers/creators to publish iCARE: The Cancer Anthology for and by those with cancer and their caregivers (aka everyone around them).

Today, this empathy and inspiration focused on Cancer continues with ‘The Cancer Care Journey.’ I'm building an evolving reference map of insights1 and enlisting collaboration support through a new Carer Mentor Kinship initiative2.

The focus is not only on the person diagnosed with cancer but also on the caregiver, friends, family, doctors, nurses, and broader care support.

The aim is to provide a big-picture overview leveraging insights from many sources, e.g. my personal experiences, the iCARE: Cancer Anthology, the Carer Mentor Kinship (support network), Macmillan Cancer Support, Carers UK and other published evidence/peer-reviewed articles and experts.

I hope the Carer Mentor Kinship can explore these insights further through collaborations.

This is a big-picture opportunity for us to consolidate our experiences to serve others. This is not about statistics or numbers.

It’s about sharing chapters from our experiences to build more actionable insights, questions, and tips and explore the different facets of the cancer care journey in greater depth.

The information here is NOT medical advice (always seek advice from your doctor).3

The Cancer Care journey is founded on lived experiences. The insights involve more than ‘just’ the medical treatment/interventions. For example, it’s about

• the human experiences of how we navigate Cancer.

• how we, as the patient/caregiver/friend/family, engage with doctors, medical professionals and support organisations, and they with us, to optimise our care, health, and outcomes

• actions we can do or questions we can ask to minimise potential disconnects in information/communication

• building stronger relationships through trust and alignment

• seeing the big picture and details to understand what we need to know to empower, support and advocate for ourselves, our friends, and our family along the Cancer Care Journey.

Why am I building this overarching Cancer Care Journey?

The short answer is, ‘Because it’s personal, and I can. I can envisage it and how it can be used. It’s what I would have wanted a decade ago.

I know that when I’m informed by other people’s personal experiences or find evidence that is meaningful to our situation, I can formulate better questions, discuss and align them with whomever I’m supporting, and engage with doctors or others so that we can better understand/get more comfortable with what’s happening.

The BIGGEST hurdle as a carer since 2015/16 (when Dad was diagnosed with bladder cancer on top of everything else he had) was the tsunami of information.

Even with my science background and rudimentary medical knowledge, it was a challenge. I sifted through booklets, websites, and the ‘just read this-ers’ to decipher how the information applied to us, always double-checking the validity and evidence-based premise for the recommendations.

There could be a disconnect between what a doctor says and someone’s understanding. Or a person’s symptoms could be so overwhelming that they’re unable to process and engage with doctors. Maybe the wife/husband/daughter with them is overwhelmed, too?

The dynamics of an initial consultation can be stressful with doctors. We may be navigating information hurdles AND trying to decipher how ‘good’ the doctor is. The doctor (GP in the UK) is probably trying to tread gently, not alarm us, and identify red flags to action within the shortened time they have these days.

These are just a few of the stress factors and risks at the start of a cancer journey. We’ve experienced many more, and it’s been painful repeating this rollercoaster, not just once but a few times, directly or as a ‘care-giving-support’ for others at a distance.

When we’ve learnt some lessons and have our go-to questions and insights, we become a resource for others! This is why we need to share our lived experiences.

‘The Cancer Care Journey’ is a map of insights, lived experiences, and a reference index.

It’s not just about sharing pragmatic facts and information. It’s an anthology of human experiences: real-deal emotions, personal stories and even humour.

The Diagnosis and Treatment Pathway4

Traditionally, we — I mean, everyone involved in someone’s cancer journey—have been focused on each medical step, event and intervention.

Of course, this is the central axis of action. However, there is now a greater acknowledgement and broader understanding of the needs of cancer patients.

It may be because, like my father, the patient may be diagnosed with other chronic illnesses like congestive heart failure, vascular dementia or other infections/diseases.

However, we need to consider more than a patient's medical profile. The most significant shift is the need to see the whole patient.

As World Cancer Day 2025 highlighted, cancer is not about ‘treating it’ as an isolated ‘thing’ to be solved. It’s about seeing, understanding, and treating the whole person, including, by extension, the relationships with people close to them—the Broader Context and Cancer Care Journey.

Broader Context considerations can include:

• Friends/Family and Caregivers - the relationships, dynamics and role in the cancer journey.

• Daily life activities and lifestyle

• Mental wellbeing,

• Physical well-being, diet, exercise

• Cancer awareness/knowledge and access to references and resources

• Care support: nurse, nutritionist, occupational therapist, counsellor.

• Work, work flexibility, income and finances

• Life administration: Wills, Powers of Attorney, Executors.

• Medical Information: Emergency Contacts, History, Allergies, Medications, Operations, Doctors

Considering this broader context, we can start to appreciate how unique each person’s journey is.

A care journey is not just about the differences between cancer types and how they’re treated. It’s also about the personal context.

It’s also about the patient's environment and location.

Access to interventions/medications, nursing care, and support for basic everyday activities and necessities differ globally. Political, environmental, social, technological, legal, and environmental factors can influence a care journey.

The kaleidoscope of experiences is infinite at every step.

This is why I’m building The Cancer Care Journey as an evolving dynamic reference map of insights.

Right now, I’ll continue to work on building insights from existing published resources (other publications on Substack and experts/organisations).

I’m inviting members of the Carer Mentor community to join the Carer Mentor Kinship so that we can collaborate and explore specific aspects of this Cancer Care Journey together. Stay tuned for more information on Build2Care efforts and the Carer Mentor Kinship.

A Final Word

Today, more than ever, the most potent kindness can be connecting and empathising with others through our lived experiences and inspiring each other.

Click here to go to iCARE: Cancer Care Journey

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Each moment counts. How much alignment and understanding will you and the doctor have in an emergency?

How can we optimise the dynamics and interaction as the patient/caregiver?

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

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

I shared my thoughts on why there can be a patient-doctor disconnect. The article by Katie Strick offered suggestions about advocating for ourselves, identifying actionable phrases to use with medical staff and how to close potential patient-physician disconnects.

We don’t have medical degrees, so being the constant questioner can make us feel like annoying children in a child-parent power dynamic.

Over the last decade of caregiving, I’ve developed a keen radar for those who ‘expect/feel entitled’ to deference at the outset and those who actively listen with empathy.

Today’s post highlights ‘Listening not just hearing’ article, and I share my thoughts about approaches to close disconnects in an emergency.

Listening, not just hearing.

How a graduation speech made me think about listening in healthcare from both sides of the consultation room. By Dr Rachel Molloy.

Rachel is a retired GP and writer. She qualified as a doctor in 1995, spent a few years in hospital medicine, and worked in General Practice for 24 years. Now, she’s a GP appraiser and a mentor.

In this article, she offers meaningful insights about genuinely listening to someone from the dual perspective of being a GP and as a carer to her husband, Den.

Listening in healthcare - the doctor’s perspective (excerpts)

Listening properly has always been my pet subject in my job as a doctor, and particularly when teaching trainees. In a doctor’s consultation, there are so many visual cues as well as the words that are said. A person’s facial expression; their body language; how they point to the site of the pain; how they sit with arms folded in a defensive way when you ask them how many units of alcohol they drink. It’s what we lost for a while in the pandemic, having to do so much of our work remotely.

And listening needs to be active. When watching videos of consultations with trainees - a teaching method we use a lot - early on it is often necessary to point out how the patient is repeating themselves, because they have not felt heard. Actively responding to what is said, summarising the story back to the patient, reassures them that their story has been heard. Even assuming a posture that shows the patient you are ready to hear their story. That’s all we want, as patients, isn’t it : for someone to listen and make sense of our story.

Listening in healthcare - the carer’s perspective (excerpts)

Sharing my husband’s journey through cancer care has taught me a lot about the importance of listening, from the other side. We have seen what it feels like to NOT be listened to. The arrogant consultant who gives a monologue and does not listen to our concerns: a lack of time meaning he just wants to get the job done; or the walls he has built up in order to protect himself from patients’ emotions over the years. Not listening to us was one thing, but not listening to his own words and considering their impact, was another.

You leave a meeting like that feeling angry and unheard. We have struggled with the decisions made in MDT’s ( teams of consultants ) behind closed doors, where the patient's point of view is not heard. In one hospital they left all the direct conversations with patients to the nurse specialist and you never got to speak to the consultants making the decisions

How much richer - and safer - Den’s healthcare journey has felt when people have stopped and truly listened. Healthcare is, by necessity, scientific, and evidence-based. And a resource-strapped, understaffed service can struggle to have enough time to listen. But it is hearing people’s stories that brings the humanity into medicine.

You can read her full article here

A little context

Today, I feel blessed that there is a routine protocol for scans, tests, and consultations for cancer patients. While we’ve learnt to live in limbo between scans, results, and MDTs, we appreciate that changes are seen, caught, and reported early. We have built good relationships with the key specialist doctors and nurses, and I’m very grateful for their empathy and support.

Hospital emergencies and unexpected illnesses are very different.

For most of 2019, the hot-mess mix of Dad’s congestive heart failure, atrial fibrillation, bladder cancer, rheumatoid arthritis and subrenal aortic aneurysm …plus plus plus meant we were on a first-name basis with the paramedic teams. Midnight to 6 am was paramedic prime time and the start of 8-12 hour wait times in Accident and Emergency.

It was a nightmare rollercoaster that I’m very aware is repeating daily for many caregivers and patients. Emergencies need intervention. I know it can feel scary and intimidating, but call the paramedics if you have doubts, see an acute need or fear for a life-threatening situation.

To state the obvious, there is a big difference between the doctor’s pace, allotted time, and goals in routine monitoring consultations compared to emergencies. Consequently, I adapt my demeanour and approach. While I’m not confrontational, I feel much more of a burden to protect, champion, and advocate in emergencies.

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Here are some actions I’ve done in accident and emergency departments (A&Es)

When someone is talking fast or in high-energy mode, I talk more deliberately, slow down, and use shorter sentences.

If someone tries to interrupt or speed me up, I repeat what I said and may speak more softly.

I’ve been that high-energy, extroverted person under pressure. It happens easily. When leading diverse teams, I had to learn to slow down to avoid misinterpretations and be sensitive in cross-cultural teamwork. Speed is counterproductive and can cause issues or miss something important.

Talking faster to me doesn’t mean I will accept something blindly, but it’s easy to feel you need to ‘just’ nod along. There’s that potential patient-doctor disconnect again!

And what if the patient is a non-native speaker? “Sensible,” or is it the French word for sensitive? Doctors can easily forget that medical terminology is like a foreign language!

Sometimes, deliberately, I talk slower and more softly. This negotiation tactic requires the other person to come closer to hear you and listen more attentively. It’s also a humane tactic for both you and the doctor, slowing everything down to align and clarify immediate actions.

In Accident and Emergency departments, there’s always stress, someone shouting, and high energy. I can be the ‘calm, clear, concerned’ one amidst their chaos but also the one that will not be ignored!

When someone uses jargon or acronyms, instead of nodding and accepting, I’ve taught myself to ask, ‘Could you please translate that into simpler words or spell out what exactly’s happening? I’m not familiar with that drug/treatment/acronym.’

I’ve not had to deal with any arrogance recently, but it’s worth noting that lots of jargon/acronyms are usually a sign of trying to elevate a negotiation position over someone else. The strategy of ‘I’m the expert here, and you just need to accept that my way is correct and do as I say.’ We all have rights, including understanding our diagnosis and treatment implications. ‘Never assume’ is my mantra. Things get missed, delayed and misinterpreted.

Even with my 1-pager medical history cheat sheet for doctors (5 copies always ready!), every emergency, I’ve repeated symptoms, allergies, medications, and medical history to at least five people. It’s not something a delirious patient can do either!

I ask the doctor to repeat what actions are being taken and why. I have a science background and am very familiar with drug therapies, medical terminology, and concepts. But I’m not trying to demonstrate what I know or try to elevate myself to meet the doctor’s level of knowledge.

I’m writing down/noting what exactly is happening so that I can double-check actions between each doctor, nurse, and health care assistant (HCA), especially when the shift changes.

I’m not a doctor, but when I know that the senior doctor on call has approved something, I can prompt if the actions have not been completed, check for the results, and ask if we’ll likely go home or be admitted.

Now you know why I pack many things in my caregiver’s Go bag, in addition to my parent’s Go bag. I camped until Dad was admitted to a ward or we returned home. I’m not saying you have to do this, but this is right for me in our situation with our hospital. (If you can, think who/how you can be ready to tag-team with other friends/family members.)

The longest I’ve been in A&E was with Dad for sixteen hours. I cared for Dad by his bed after his second bladder transection for around ten hours, and stayed with Mum overnight in her cubicle (with my own escalating COVID temperature) to be 100% sure there was no overnight discharge.

Two articles I wrote last year explore communication disconnects, personal assumptions/expectations and how we can build bridges of understanding for productive communication. Not everyone has the same cultural reference points and communication style as we do. Never assume is always my mantra.

What’s worked for you? What would you add?

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P.S A special hug and empathy to all the patients/caregivers in the UK who are feeling stressed and worried about the overhaul to the benefits system and changes in how the NHS will be run in England.

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