The Dementia Anthology
Through A Caregiver's Lens.
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?
September 21st was World Alzheimer’s Day.
‘Time to act on Dementia, Time to act on Alzheimer’s.
My Father had a litany of health issues that were destabilised by a major hospitalisation in 2015: congestive heart failure and rheumatoid arthritis were compounded with a diagnosis of vascular dementia and then bladder cancer.
It was heartbreaking to see the proud, gregarious, highly intelligent man who knew numerous languages lose his ability to reason from A to B to C, lose his sense of time and space, and shrink inward. We were able to care for him at home until he passed in 2020. It was a rollercoaster with accelerated declines, yet we still had small, precious moments together—bittersweet joy.
This Anthology is the first of many to leverage our community’s diverse experience to support each other and new readers. Empathy and Inspiration.
Ask a question, share an article or offer a personal insight to help someone else.
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Anthology of Dementia Articles | Resources | Organisations.
Carer Mentor Articles:
These include insights, resources, videos and ideas to support your journey.
Directory of the Authors | Writers | Publications included.
Recent additions are bold italic highlighted
Amy Brown at Living in 3D: Divorce, Dementia, and Destiny
Anne at The Future Widow
Sarah Coomber at Sandwich Season
Debbie at Behind Shoji Doors
Anna De La Cruz at GenXandwich
Jodi Sh. Doff at The Long Goodbye
Anna Du Pen at Betwixt and Between Proxy
Kevin Ferguson at The Centenarian Playbook.
Lydia Fluitt at Dementia, Vascular
Lindsay Johnstone at
Kerri at the Publication ‘The Other Parenthood’
Alice Kuipers at Confessions and Coffee
Sammie Marsalli at
Sasha Neal at
Tanya Reynolds at Alzheimer’s Caregiver
Tahia Sherebanou Fakhri at Contemplations (includes Dementia Diaries section)
Jessica Smith at Alzheimer’s Awakening.
Janice Walton at Ageing Well
Janine Campbell at
Dementia Chapters of Recommended Reading
2. A Caregiver’s Journey of Dementia
First symptoms, feeling alone, and finally redemption. Let's just start at the beginning. By
.'Mom, I think you need a neurologist' and other things I never thought I'd say. By
How It Started and How It's Going: Our Journey By
First, There Were Bandaids. I stayed in denial about Mom's "condition" as long as I could. By
'The Long Goodbye. Navigating my parent's dementia, and my brain's attempt to let it consume me'. By Anna De La Cruz
‘A Little Life List: When You're In The S***. Grace, Solace, and the Uncharted Mystery of Alzheimer's’. By Alice Kuipers.
How We Craft Stories That Make Sense of the World. Or Not. Memory Loss: a dramatic shift and the scraps we reach for. By Alice Kuipers
The Toughest Decision I've Ever Made. A Personal Journey. By
‘Dan was becoming more hostile and challenging to manage as his dementia increased. I’d reached the end of what I could do - maybe a home like that was the solution.’The Family Caregiver Has Needs Too. But They Are Often Overlooked. By
. Defining and communicating your needs as the caregiver is important.-
Looking good, is not only to feel good, of course. But to mask (pun intended) any bad feelings going on under our Charlotte Tillbury Flawless Foundation and Pat Mc Grath Divine Rose Cream Blush. As a CranioSacral and Somato Emotional Release Therapist with a 22 year working experience, I can vouch that almost always, the better my patients looked, the worse they felt.
My Dream Comes True Helping Alzheimer's Home Caregivers Of Loved Ones Thank you for sharing this
. I dare folks not to cry at this beautifully poignant essay by Sammie.
3. The Caregiving
I recommend reading this article by Jodi. It may feel uncomfortable and bittersweet. However, she has eloquently and clearly articulated diverse facets of caregiving and the effects of Dementia itself. Thank you Jodi! ‘Caregiving Dementia: A Moving Target.’ By
It's Mum's birthday. Thank you for this article . I know several caregivers whose loved ones are in a care home, trying to navigate regular updates, fraught visits and liaising with staff. My heartfelt condolences for the loss of your mother. Your writing continues to help others.
Dementia Diaries Understanding how compromised minds work. By
Sundowning. Dementia Diaries By
Deciding what to wear. Dementia Diaries By
Giving up the driver’s seat by
Conditions such as Alzheimer’s and dementia put the caretakers of the elderly in a very difficult position. First, the caretakers have to battle the resistance that comes from giving up driving. Secondly, they have to battle the fact that the patient forgets that their abilities are now compromised. Finally they have to battle the denial of resistance and the caretakers have to become the “bad guys” and forcefully enforce the “new rules”.
An important message from
about our caregiving mindset. I'm sorry! Life got in the way. (by life, I mean perfectionism.)How to treat the dementia patient. And unexpected affirmations on the parenting front. By
Let them eat cake! Removing control and keeping the "care" in "caring" By
Denial Is In My DNA. Helping Alzheimer's Home Caregivers Of Loved Ones by
.Obviously, this progress and her ability to recover against many odds gives me hope every morning when I wake up. It may be a false one, but it is all I have, and I am going to hold on to it as long as possible because it has become my motivation for living. Besides, I could see in her silence, she was trying to live. I will fight with her for that. Hope, as illegitimate as it may be, and denial are my best defense mechanisms against deep depression, not always effective, but certainly most of the time. I just try not to think of anything else to avoid that pitfall.
As there are no two Alzheimer's victims alike, there are no two caregivers alike. We are all different in the way we react. That is why there isn't a “supposed to-do list” to follow. Our patience levels vary, as do the personal tools we apply because we are all dealing with very different behavior changes.
A Metaphor for Dementia Caregiving Wrestling Over the Wheel. By
Safety for Dementia Patients while Toileting. Yes. We have to talk about this. By
Behavior - AGITATION. Good Ways to Avoid Confrontation By
4. Finances
Thanks to Kevin for sharing his key learnings and insights. Dementia's Financial Warning Signs. Dementia takes a financial toll long before diagnosis, study finds. By Kevin Ferguson. I recommend reading this to learn what to expect and to try to pre-empt financial issues.
5. Dementia-Specific Health Care Directives
Anna has created a website specifically designed to support caregivers, family, and friends of someone suffering from Alzheimer’s or another Dementia. She offers free downloadable tools and opportunities to seek her advice (Free 30-minute consultation then $80/hr).
Here is the article: Tools: Online Class on Dementia-Specific Health Care Directives. Everything Important to Know
Anna trained as an oncology nurse practitioner and spent much of her 35 year career specializing in palliative care which was not much help when she became the primary caregiver for the love of her life who developed, persevered, and died from Alzheimer’s Disease. She writes about the unspeakable pain of ambiguous loss in general, and the struggle to honor her duty to act as durable power of attorney for health care while desperately not wanting to lose her soulmate, complicated by the multiple failures of the health care system (during COVID) to provide a compassionate end of life experience for her husband.
6. Articles with resources
(USA) It Takes A Village - updated 12.19.24 We can't do this alone. Additional reading, resources, services, podcasts & media Thanks what a fantastic gift of resources.
(UK) Talking care and creativity. A conversation with Lindsay Johnstone by
andSarah shares some resources to help you know 'You are not alone' Finding company on the dementia journey. By Sarah Coomber
'A Q&A with advocate and activist Ai-jen Poo on how to break the isolation of caregiving'. By Amy Brown
'In Caring for aging parents, can we see assisted living as assisted loving?'. By Amy Brown
Amy Brown shares her experience and other resources in her article. ‘Caring for my mother with dementia is an act of love that nearly broke me.’
Need help with your caregiver toolbox? Call a Senior Care Specialist. Save your self some time and a lot of stress. By Kerri
Tools: Dr. Farber's Five Questions. Palliative Care as Narrative Medicine. By
. These questions are useful prompts. I also wanted to highlight Anna’s publication for this reason: ‘I have discovered that I have one copy of the Alzheimer’s gene—APOE4 and I am writing about being a dementia caregiver to both my mother and my husband, so it is at the front of my mind that it could happen to me.’Resources BOOKS, WEB SITES, ARTICLES, MOVIES, PODCASTS By
This resource has been written by a friend I met at the Carers UK online forum:
Dementia Guidance: For people with dementia, Their friends and family. By Derek contact@dementiaguidance.co.uk
Dementia Guidance provides a guide to free services available throughout the UK to people with dementia and their families.
My wife was diagnosed with dementia in early 2018 and since then I have come across benefits and services that are available without any cost being involved.
Even though you are faced with the life changing diagnosis of dementia, there is no method of automatically telling you about these services.
In our own case we have found them out merely by chance.
I have included one or two suggestions that involve some cost but I would strongly advise you consider them.
7. Fear of Developing Dementia
8. Helpful Links and Organisations.
United Kingdom
Dementia UK Specialist Nurse support: What is an Admiral Nurse, and how can they help?
Alzheimer’s Society (UK)
Alzheimer’s Society Caregiver Guide Caring for someone with dementia Click here
Memory Cafés. Support groups
United States
Memory Cafés Support groups.
Kerri at the Publication ‘The Other Parenthood’ used the helpline and personally recommended their support.
Canada
Alzheimer’s Association Canada Alzheimer’s and Dementia Resources
Alzheimer Society of Canada. There are local affiliates in different provinces. You can find yours here.
The Association of Frontotemporal Degeneration. Resources in Canada
9. Books
Clicking on the image will take you to the Carer Mentor Affiliate Bookshop, where I receive a small commission if you purchase the book.
Recommended by friends in Carers UK Forum:
Other Books about Caregiving and Self-Development.
Caregiver peer mentoring: Let’s share and support each other by leveraging our personal experiences.
For example, questions about a type of Dementia, stage of caregiving, an issue.
Do you have a question about caring for someone with Dementia?
Do you have an article that you could share to help answer someone else’s question?
This page and discussion will remain open indefinitely to help each other.
Thank you for being here, reading Carer Mentor: Empathy and Inspiration and being part of this community network.
If you found something that resonated, helpful information, or a new connection and would like to show your support, please consider becoming a subscriber for £6 a month or £50 a year.
Please Remember to ‘❤️’ LIKE the article to guide others to these resources
Your support is greatly appreciated and helps validate my time and effort.
Thank you!
Hi Victoria, what a great open supportive space this will be. My father is currently end of life care with a dual diagnosis of Alzheimer’s and fronto-temporal dementia. It’s so hard to watch. What helps me in my “living grief” is writing poetry. Just yesterday I have set up my Amazon KDP account to self publish my poems in grief in the hope to raise funds for research. I’ve taken part in remote research for the last year. Every little helps.
Here is one poem to help any readers in grief today -
Ebbs and
Flows: grief comes and
Goes. See, you’re here, yet gone.
Fragile, yet funny; frail, yet strong:
Your smile.
Thank you for the endorsement and support🙏