Index: For The Caregiver.
REFERENCE: Essential Reads, Self-Help Toolbox and Navigating Rollercoasters.
Hello, Dear Reader! Welcome to our new Carer Mentor community members!
I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?
‘Heartfelt empathy for Caregivers. A hub of practical tools, resources, and expert insights. A portal of hope.’
This Index reference is part of the new iCARE Stack and The November 2024 series ‘For the Caregiver’ Viewing the index is best on a desktop version.
This is the reference I would have liked to have from day one of caregiving.
iCARE Stack, is growing to include a dynamic resource of experiences. You’re NOT alone.
This Index for Caregivers, is not about the acts of caregiving but about how we navigate ourselves and our loved ones on the caregiving journey.
Click on this link for another separate Index focusing on the acts of Giving or Receiving CARE. REFERENCE: Tips, Hacks, Resources and Insights.
Please subscribe and ‘❤️’ LIKE the page to guide others to these resources.
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.
Chapters
Other chapters are coming soon…
Essential Reads
MIND Crisis and Listening services ‘If you need to talk right now, there are many helplines staffed by trained people ready to listen. They won't judge you, and could help you make sense of what you're feeling.
Many listening services let you talk for as long as you need. This page lists some options to try.’
Carers UK Helpline and Support ‘Every day we hear from people who need help with looking after a friend or family member.’
Cruse. Grief can be overwhelming. You don't have to do it alone
Building a Self-Help Toolbox.
Articles sharing personal experiences and experts’ insights/research.
The Crisis/Emergency that started it all/The Tipping Point
'A Prelude to Caregiving: Love and Torture.' A 2015 hospitalisation was only the beginning. This is probably the most painful article I’ve written to date. A grief hangover ensued. Trigger warning for anyone in emotional turmoil over caregiving or at the start of their care journey: this may be too tough to read.
What we’d like others to understand. The Do’s and Don’ts.
5 Statements that are Decidedly Not Helpful. Even though we both wish they were. . .By
In this short article, Anne generously helps guide readers on what’s acceptable.Thanks to
for writing this article, which provides gifting guidance that resonates with grieving people and anyone giving or receiving care: A Grief Gift Guide. Beyond Flowers: 12 Things to Give People Who are Suffering. I recommend reading Christine’s advice. In the comments, I highlighted how parcels, especially those with food, flowers, or something expensive, can cause immense issues—tracking, mistakes with delivery, stolen or damaged goods. If in doubt, send vouchers via email!🎁
Sandwiched Caregiving
Wiping Butts. Living Life in the Sandwich Generation by
This quote grabbed me “So there I was wiping everyone’s butts and being too busy to feel any feelings. But now she’s gone and all that time I spent caregiving, or organizing other people to provide care, coordinating doctors visits, the hospice nurses, et cetera is open to do…what exactly?”- “When I learned of the term “sandwich generation” and began to read about others’ experiences juggling care for children and elder family members, I started to feel slightly less alone in this struggle, like there is a community out there (often silently) treading water to stay afloat, just like me.”
In my ‘day job’ as a social impact consultant, I’ve been increasingly involved and interested in the global care economy, an area that itself has really only begun to gain traction and attention post Covid-19. Figuring out how to improve how we care for children, elders and families with unpaid caregiving responsibilities is not only critical for the increasing number of Gen X and Millennials in a caregiving sandwich like mine, but it’s critical for advancing gender equity. The vast majority of unpaid caregivers are women, and the fact that both paid and unpaid caregiving is extremely undervalued is not a coincidence.
Care Math: Girl Math has Nothing on these Stats. No one can make it make sense. By
“Being thrown into sandwich caregiving has been a bootcamp in a layer of financial responsibility that before my late 30s, I had hardly given much thought to.”Learning to ask for help. Our "awkward, brave & kind" email and the response we received. By
“It was a challenging subject: asking for help. This topic comes up so often in my conversations with people experiencing a Sandwich Season or other challenging times—a death, an illness, the loss of a marriage or a job, a child pushing boundaries or fill in the blank with your own current challenge. These are difficult experiences, even more so if you try to go through them alone.”- . Sarah’s actions and insights felt very familiar in terms of the laundry list of To-Dos and BIG stuff we have to handle as caregivers. “Meanwhile, I keep learning the truth behind the quote on my mom’s bookmark: Why must we do the thing we think we cannot do? Because it is only by doing the hard thing that we learn we can do more and bear more than we ever imagined.”
- at . Courtney shares her transition to cohousing intergenerationally, moving to a house where her parents (her father with advanced dementia and her mother with chronic illness, having cared for her father for over a decade) live with her and her family. Her brother lives closeby. I highly recommend reading her articles.
Long-term, Chronic caregiving.
- shares the very real emotional turmoil that caregivers go through. Imagine this day in and day out for a very long time. Imagine if someone comes in with clichés or ‘advice’ (even if it is well-meaning). Imagine the impact on a caregiver’s mental health over time. THIS is why we need community support.
A Day in MY Life otherwise known as "Welcome to Chaos!" by
I was born with a complex congenital cardiac condition – tricuspid atresia, pulmonary atresia, TGA and ASD. This means I have a right sided single ventricle condition. I have had open heart surgery on 2 occasions, and several scary moments…. but I’m still here… at 56 I am grateful for that fact.
My son, Nathan, and my daughter, Cerys, both have Cerebral Palsy and are full time wheelchair users.
These two articles by
gave me pause. The elephant in the room, the cause of the burden on caregivers, is not being resolved. Real solutions are needed within the systems themselves.Fix the Systems ‘Start-ups believe the problem lies in our house. Problems are embedded in the systems.’
The Weariness of the Systems. The systems suck the life out of us.
I Wasn't Raised to Let You Die Alone by
is a beautiful testimony to why she does what she does. While she and many of us appreciate the big picture reasons and our motivations, the irony is that the details of caregiving minute-by-minute can change. The same day, just after publishing the article Jodi shared this:Mom, comfortably sleeping on the floor while we wait for paramedics to help lift her up. I’m grateful I’d vacuumed yesterday.
Note: She slept through three paramedics lifting her into bed. I wish I could sleep like that.
Around the holiday season. Thanksgiving, Christmas and Birthdays
- offers excellent advice for any time of the year here: A Grief Gift Guide: Beyond Flowers: 12 Things to Give People Who are Suffering.
I’ve given advice before on how to be with someone in their suffering. I’ve shared about what to say and what not to say. I always emphasize being over doing, when it comes to support. But sometimes, people want to do something impactful. We want to offer support in a tactile way.
Thanksgiving with a Spouse Who Is Disabled: Gratitude, Adaptation, and Love by
“Thanksgiving could deepen the bond between us, fostering resilience and redefining what it meant to be thankful.”A caregiver birthday Figuring out how to celebrate in this new world By
Sometimes it’s OK for me to let him know about these things but most of the time it makes him sad because he realizes he didn’t remember and didn’t get me a gift.
Each time that this topic comes up, I let him know that his company is my present. That cheers him up. 🥰
Defining the respite that feels right for you.
APRIL 2, 2025: BBC News article highlights CAREFREE a charity that connects unpaid carers with hotels that have spare capacity so that they can take a respite break in the UK (carefreespace.org)
Personally, I know two friends in the UK who have benefitted from Carefree’s work - each had a much-needed break. Thanks, Carefree!
Carers have described a charity that offers them a night or two of respite care as an "absolute lifeline". by Victoria Hollins BBC London (News link below)
Carefree is currently working with 14 hotel groups, including Axiom Hospitality which has 25 hotels in the programme - including 13 in central London.
Anael Peu from Axiom said the scheme benefits the community as well as the carers.
"Hotels don't sell all the rooms every single night.
"The fact that we can give these unsold rooms to people for a better use was a no brainer - when they come they don't just come to stay the night.
"They have a packed agenda. They go and see shows, art exhibitions and so on."
Carefree chief executive Charlotte Newman said they use "technology-led solutions" to provide respite care without a cost to the cash-strapped social care sector.
"Carers are very much an invisible part of our society when it comes to who is providing the backbone of our health and social care system.
"So the fact that they are identified, they're recognised, they're congratulated and supported to continue their caring role and also it's something that makes a genuine and positive difference to their life."
The Impact of Carefree direct quote from the website (April 2):
'A little respite: reminders, revelry and love?' A short post of a little paradox by
HOME ALONE with THE CAREGIVER By
I recommend reading this caregiver’s dilemma about having time alone. I think we all know how this feels. This is what I wrote in my comment“Sometimes, I get disappointed about how things turn out; sometimes, I berate myself for 'not making better use of my time'. BUT the one common denominator through all these is how I LOVE not watching the clock, 'time-bound-less' I am.
So I've negotiated an agreement with myself- NOT to criticise myself as long as I focus on NOT focusing on time..it works quite well if I've a few days...mainly because I watch movies/tv until the early hours of the morning and need sleep ;-)”
‘What happens if?’/Voicing Fears and Putting Actions around our fears.
Thankfully, there are people like
. She tells it straight and voices what I’ve been toying with over the last few months: what happens if we’re doing such a good job that we ‘go’/die/pass away/have a fatal accident/get hit by a bus first? There’s one part about keeping ourselves healthy, and then another is that we cannot control random life things (even when we don’t get out much!). I’ll share my thoughts soon. Thanks to Jodi for these articles.
The Death and After-Math of Everything on the To-Do List.
The Ending. Or...The Beginning by
“I was flooded with emotions. Heartbreak. Grief. Gratitude. Relief. It was the end of her life. And the beginning of a new chapter. Hannah Eller-Isaacs: Orphan Child. A chapter in the book of life I never wanted to read let alone have to write for myself. The center of gravity for my life would have to shift.”When dying happens...Friday, August 2, 2024 By
“When my mom was dying, it was everything I expected, and everything I didn’t. With pancreatic cancer, we’d been told it would change quickly, suddenly, unexpectedly, and so I found myself holding my breath for the seven and a half months it took to course through her body, and still it took me by surprise with its ending.”
Several posts by
share the aftermath. I recommend reading her posts. For example: “My bones ache. The deep grief of the final week of sorting, sifting, deciding, leaving behind things in my mom’s home of 51 years is settling in.I wake up each morning with an albatross around my neck and drag myself through each room again. Culling, looking, deciding, stepping away, and again and again.”
- OMG this essay: the relationships with your parents, grief, sandwich generation, caregiving at a distance… I’m awed, impressed, and my heart hurts for you. Thank you for writing this piece. You’re Human-ing inspires me. I encourage readers to read this: In the Face of Loss. What we hold onto and what we release is everything
“The thing about grief is that it does you in, even as life around you continues. Lunches still need to be packed. If you’re me, yoga classes still need to be filmed. Your dog still needs to be walked. Your teenagers still need your support, even if they don’t always want it. I’d experienced my first panic attack twelve hours after my mother died. Most days I was just keeping my head above water, and that’s with yoga and meditation and breathing exercises and every other tool in my toolbox. I’d heard the term Sandwich Generation, but as with most things that don’t directly impact you, I hadn’t really paused to consider what that was. You can’t really know what it is until you’re eating it, anyway. Zero stars, do not recommend. And yet, you’ll probably end up eating some version of it.”
Directory of Caregiver Publications
I’ve highlighted many writers/authors/poets and creatives in The Dementia Anthology, the Giving or Receiving Care Anthology and The Bereavement and Grief Anthology.
These Authors’ publications focus on the Caregiver Perspective.
Please recommend other publications which focus on supporting and sharing reflections of the person behind the role of ‘caregiver’.
A few of my recent discoveries are Bold Highlighted
- writes The Future Widow
writes A Container for My Thoughts
- writes Living in 3D: Divorce, Dementia and Destiny
- is the author of several publications about being a Caregiver. One is Caregiving Reflections
- writes Sandwich Season
- writes GenXandwich
- write The Long Goodbye: Dementia Caregiving
- writes Betwixt and Between Proxy
writes Grace Infused Messy Life
- writes Dementia, Vascular
writes Letters from the Sandwich Generation
- writes Life and Other Stories
writes Come As You Are
Kerri writes ‘The Other Parenthood’
writes Sammie’s Substack
- writes The Caregiver’s Life
- writes The Examined Family
writes Dementia’s Daughter
- writes She’s The Caregiver
- writes Alzheimer’s Caregiver
- writes Contemplations (includes Dementia Diaries section)
writes A Caregiver’s Conscience.
- writes An Alzheimer’s Awakening.
- writes Journeying Alongside
Madeline Wahl writes Millennial Caregivers
- writes Ageing Well
- writes Forgetting the Self
New chapters will be added, e.g. different phases of the caregiver’s journey. It’s not a linear path; no two journeys are the same. However, some periods become familiar over time.
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Thanks so much for including my essay here, Victoria 🤍