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.
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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.
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.
Each link is a Themed series of articles.
ComfortZone
This Caregiver's Watchlist. 'Feel the feels', escape reality or be transported by music. Recommendations TV, Film and Streaming online.
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.
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.”
Long-term, Chronic caregiving.
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.
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.
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 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 🤍