Five books offer insight into living the best life with dementia. While there are many kinds of dementia, most have in common that a person continues to lose bits of themselves as time passes. It’s a sad and scary diagnosis, and people respond to it in different ways. Here are five stories that may offer some practical ideas for finding hope and meaning in these trying circumstances.
Free DIRECT download: 5 stories share how to live the best life with dementia (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Outline:
- Somebody I Used to Know.
- Cotton Wool in My Head: A First-Person Account of Alzheimer’s.
- Memory’s Last Breath: Field Notes on My Dementia.
- We Danced: Our Story of Love and Dementia.
- An Unintended Journey: A Caregiver’s Guide to Dementia.
- What other first-hand accounts would you recommend?
- Related Eat, Speak, & Think posts.
Somebody I Used To Know
Wendy Mitchell was 58 years old when she was diagnosed with early-onset Alzheimer’s. She has written a powerful memoir* sharing her experiences learning to live with her new reality, as well as her efforts to stave off the decline.
As an example, she has created a “Memory Room”, which she likes to visit on “foggy” days. Here she looks at labeled photos displayed throughout the room, which makes her feel calm and happy.
She has a blog called “Which me am I today“. In a recent post, she wrote about how she no longer feels thirsty and her need to come up with a system to remember to drink.
The book is available in hardcopy, audiobook, and e-book.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.
Cotton Wool in My Head: A First Person Account of Alzheimer’s
After being told that there was a strong possibility that he would develop Alzheimer’s, Jacques Boersma became a columnist and wrote openly about dementia and his experiences.
Boersma’s memoir* is interesting and easy-to-read. He shares stories from his experiences being diagnosed and learning to live with the diagnosis of probable Alzheimer’s. His book also includes poetry and artwork.
One bit of advice he shared that struck me is to avoid placating statements when someone expresses concern about their memory. He said that when he shared his concerns about his memory lapses in the early stages, well-meaning family and friends tried to brush it off as being part of normal aging. But he could tell there was something different going on, and those statements made him feel irritated, frightened, nervous, and, eventually, angry.
At the time of this writing, the book has 1 rating on Amazon. The reviewer gave the book 3 stars because she “found it rather different from my own experience with my husband.” She was hoping to read something written by someone further along in the disease, which is, unfortunately, not likely.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.
Memory’s Last Breath: Field Notes on My Dementia
Gerda Saunders was 61 and the Associate Director of Gender Studies at the University of Utah when she was diagnosed with cerebral microvascular disease, a precursor of dementia. She has since retired and has been writing about her experiences as the days pass and she loses abilities she had before.
She wrote a memoir, Memory’s Last Breath: Field Notes on My Dementia*, which shares intimate stories of how dementia has affected her.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.
You can find more of her stories on her blog “Living with My Dementia“, as well as this interview on Being Patient.
We Danced: Our Story of Love and Dementia
Scott M. Rose wrote this beautiful memoir about his beloved wife who passed away in October 2019 from Frontotemporal Dementia (FTD).
Scott shares stories from her life before diagnosis and their life together. He shares his experiences of living as a care partner to her for nearly four years with FTD, which first affects her language skills, then her emotions and behaviors.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.
An Unintended Journey: A Caregiver’s Guide to Dementia
Janet Yagoda Shagam wrote “An Unintended Journey: A Caregiver’s Guide to Dementia*” to help caregivers cope with the changes in their loved ones. She is a science writer and a former caregiver to a parent.
She covers the basics of dementia, how it’s diagnosed and staged, family dynamics, incontinence, finances, and many other topics.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.
What other first-hand accounts would you recommend?
I’m sure there are many other people living with dementia who are writing and speaking about their experiences. What other accounts would you recommend?
Related Eat, Speak, & Think posts
- Communicate better in dementia with MESSAGE.
- Communicate better in Lewy body dementia.
- 3 easy ways to sabotage your conversations.
Featured image by Marcus Aurelius from Pexels.
Free DIRECT download: 5 stories share how to live the best life with dementia (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
Still Alice is another powerful first-person account of young-onset Alzheimer’s.
*This is an Amazon affiliate link. As an Amazon associate, I may earn a small commission on qualifying purchases. There is no extra charge to you, and it will help keep Eat, Speak, & Think sustainable.