Books about Alzheimer's Disease

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"Nothing to Fear: Demystifying Death to Live More Fully" by Julie McFadden, RN (aka Hospice Nurse Julie on YouTube and TikTok) 2024. Explains what hospice is and how it works. Also explains what to expect in the final weeks of life and addresses grieving.

"It's OK that You're NOT OK: Meeting Grief and Loss in a Culture that Doesn't Understand" by Megan Devine (2017). Part I goes into western society's disconnect from death and grief. I found this section a little too academic and boring. Part II discusses living with grief and provides chapters about the physical side effects of grief and how to deal with them and was very valuable to me. Parts III & IV address how to deal with well-meaning people who get it all wrong and how to help a grieving friend in truly meaningful ways.

dancsfo

5 Books to Make Caregiving a Little More Manageable
Health care professionals and other experts shared recommendations for anyone providing and receiving care.

An article from the New York Times, via a gifted 30-day link; some overlap with what's discussed in this thread, but good to read their review.

https://www.nytimes.com/2024/08/19/well/family/books-caregivers.html?unlocked_article_code=1.J04.9W63.paSJtR6GvlkH&smid=url-share

Smile SB

The Dementia Caregivers Bible: Ultimate Strategies, Stories, & Scriptures to Improve Communication, Manage Behavior, & Avoid Burnout, Lessening the Rigorous Impact of the Journey by Kata Kent

mommyandme (m&m)

Fifteen Minutes of Fame

by Tryn Rose Seley

I wish I would have read this while trying to be the activities director for my mom. It’s a quick read and I think quite practical and easy to try.

mlrjl

https://alzconnected.org/discussion/comment/174350#Comment_174350

Thank you. I was looking for this book.

GothicGremlin

I finally read On Pluto by Greg O'Brien.

I thought it was good, although not super practical for caregiving on a day to day basis. What I liked is that as a former journalist, he's quite articulate, and can well describe what he's feeling, how it is to live with Alzheimer's, his coping mechanisms, etc.

Two things that resonated with me:

— He describes being "on Pluto" as being in a place where no one can see you, or hear what is being said. He describes it this way because it feels like total isolation. I'm thinking that this is his way of describing that Alzheimer's haze/fog where you lose your sense of self, and how to function in the world. Peggy used to say that "sometimes I can't do anything." In his terms, she was probably on Pluto during those times.

He says that In Alzheimer's you drift, but on Pluto your mind and body can be at peace. Pluto has a gravitational pull, and it's soothing and you want to let go. I'm pretty sure that Peggy fought that feeling, just from the things she said to me.

— He says that in Alzheimer's it's exhausting and grueling to hold it all together. Peggy always said "I'm trying", and just the way she said it, and the context in which she said that, makes me think that "I'm trying" meant she was trying to hold it all together.

There are probably other anecdotes in the book that will resonate with differently with each of you.

I recommend reading it because I think it will give you insights about your PWD, but know that a lot of it is like reading a memoir. It's an insightful memoir, but it's not an urgent read.