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Book review and request for titles
McCott
Posted: Tuesday, August 20, 2019 1:41 PM
Joined: 8/22/2017
Posts: 363


Here is the review of a new memoir of ALZ

https://www.nytimes.com/2019/08/17/books/nicci-gerrard-last-ocean-dementia-interview.html

Also, can anyone recommend books on late stage ALZ?  My husband seems to have gone almost overnight into stage 6 -- so much more confused, delusional and incoherent than the day before, and suddenly with hand tremors that just weren't there earlier.

I read a few 'early stage ALZ books' which were very upbeat and therefore annoying.  I also have read (more or less) <The 36 Hour Day>  which I found thin and basically useless.  It seemed to be saying over and over:  'Deal with it, suck it up, get over yourself.'  The section on cleaning up after double incontinence was for me an epic passage ('some people have a negative response to human waste' or words to that effect).


Michael Ellenbogen
Posted: Tuesday, August 20, 2019 1:55 PM
Joined: 11/30/2011
Posts: 2415


https://alzauthors.com/

 


Rescue mom
Posted: Tuesday, August 20, 2019 2:39 PM
Joined: 10/12/2018
Posts: 912


TY. I thought I must be the only person in the world who did not get much help from that 36-hour day book. I guess it’s good for telling about the disease per se (if that makes any sense),  but I found very little there that helped me as the caregiver.

Late stage specific, I don’t know. There is a piece online, free, about 25-30 pages, titled something like “understanding the dementia experience” by a woman with a hyphenated last name I can never recall. It was more helpful to me, although some family found it hard to read.

Also better was a book called “My Two Elaines” by a man whose wife is now in end stages. I first thought it would be another cheesy love story about them and how to love this “journey we are sharing hallelujah and pass the diaper“ but there’s more to it than that.

I could use a big dose of positive, and I’m working on that, , but many of these personal experience books seem so determined to be “positive” they sound like unicorns and rainbow fairy tales to me. I’m trying to learn acceptance and being more grateful for what I have, but when people start writing about the joy of cleaning poop, I wonder.....I have thought that telling the truth about later stages must be so depressing publishers thought it would not sell enough.

I’ve gotten more practical help and advice from this board than any book I’ve found.


Victoria2020
Posted: Tuesday, August 20, 2019 2:44 PM
Joined: 9/21/2017
Posts: 864


Quote from review:

But I’ve[book author] seen people with it [dementia]who live with a sense of spiritual adventure, who refuse to be ashamed, who manage to hold on to themselves and live with endurance and lack of self-pity and go bravely into the night.

 

 That's a neat trick, "hold on to themselves."  Kind of the Golden Ticket for Alzheimers research.  They found a cure, but what didn't remember it?

How's the spiritual adventure Mom?   Aww she peed in the kitchen again.

And I think they call "go bravely into the night" wandering .......

 Thanks McCott, I needed a good laugh today.


jfkoc
Posted: Tuesday, August 20, 2019 3:14 PM
Joined: 12/4/2011
Posts: 17194


I'm Still Here: A New Philosophy of Alzheimer's Care


Rescue mom
Posted: Tuesday, August 20, 2019 3:17 PM
Joined: 10/12/2018
Posts: 912


Me too! Thanks Victoria.
Keep It 100
Posted: Tuesday, August 20, 2019 3:20 PM
Joined: 2/26/2017
Posts: 387


Victoria2020 wrote:

And I think they call "go bravely into the night" wandering .......

 

Ok, that made me laugh. 

I will add though, that I think that perfectly sums up my husband, who is going bravely into the night. He and I have been very public and very open about everything, and he just accepts his fate, and knows that he is getting the best care he possibly can, given the fact that medically there is nothing we can do. 

One early book we read was "On Pluto" by Greg O'Brien. He is a Cape Cod journalist with alz and he wrote this after his diagnosis, detailing his journey. 


McCott
Posted: Tuesday, August 20, 2019 4:27 PM
Joined: 8/22/2017
Posts: 363


Rescue mom wrote:

I could use a big dose of positive, and I’m working on that, , but many of these personal experience books seem so determined to be “positive” they sound like unicorns and rainbow fairy tales to me. I’m trying to learn acceptance and being more grateful for what I have, but when people start writing about the joy of cleaning poop, I wonder.....

*************************************************************

I hear you, Rescue Mom -- dealing with a very upbeat sibling who finds my depressive leanings basically unacceptable, I came across the concept of "Toxic Positivity" which I find to be a useful category.  We hardly communicate any more  as I cannot think of things to say that would pass muster with her.  I agree that the ALZ books I've seen are trying as hard as possible to squeeze some rays of light out of a dark subterranean tunnel.


jfkoc
Posted: Tuesday, August 20, 2019 5:03 PM
Joined: 12/4/2011
Posts: 17194


Please take into account your recent trip which could have very well precipitated a decline which may not be permanent. See if things do not improve in the next month or so. 

I think the validation work of Naomi Feil  works beautifully at all stages. Info on her is online and her books are readily available.


lizziepooh
Posted: Tuesday, August 20, 2019 6:26 PM
Joined: 5/2/2019
Posts: 128


Rescue mom wrote:

how to love this “journey we are sharing hallelujah and pass the diaper“ 

Hallelujah and Pass the diaper...hahahaha! This made me laugh really loud. Loved it.

Rick4407
Posted: Tuesday, August 20, 2019 6:33 PM
Joined: 4/4/2018
Posts: 103


I have come to a very philosophical observation over the past few months as I read this forum more regularly.  The posters above are all familiar "persons" to me I've read and appreciated their experiences, knowledge, and tribulations.  
My observation is that this disease is harder on women caretakers than on men caretakers.  In principle I would have assumed that women - being the more nurturing gender would be better at surviving it.  But after several months of reading here as well as my own experiences I think the caretaker role is easier for men.  It's maybe that our culture tends to give men more "challenges" as providers.   Maybe that nurturing women expect improvement to show from their efforts.  I have no idea.

Anyway, just my informal opinion, with that and $5 you can get a cup of coffee - maybe. 

Rick


Doityourselfer
Posted: Tuesday, August 20, 2019 6:46 PM
Joined: 9/5/2017
Posts: 326


I found that doing a search on this website about Stage 6 and Stage 7 has helped me more than trying to read Alzheimer's books.  There's a lot of good advice that has been posted over the past several years.
Sally1953
Posted: Tuesday, August 20, 2019 8:02 PM
Joined: 6/18/2019
Posts: 20


“Still Alice” by Lisa Genova is a fiction novel about a woman suffering from early onset Alzheimer’s. It’s very well written. I read it on the recommendation of the neuro psychologist who was the first to say she suspected my husband had ‘a form of dementia.’
Carolyn613
Posted: Tuesday, August 20, 2019 8:44 PM
Joined: 7/15/2016
Posts: 1063


Sally1953 wrote:
“Still Alice” by Lisa Genova is a fiction novel about a woman suffering from early onset Alzheimer’s. It’s very well written. I read it on the recommendation of the neuro psychologist who was the first to say she suspected my husband had ‘a form of dementia.’

A friend suggested I read that book. I never got around to it. Thank you for the reminder. I'll try to get a copy of it and read it.

My friend still has her husband, and neither has dementia. My husband was the youngest of all our one circle of friends. I am the second youngest.


Michael Ellenbogen
Posted: Wednesday, August 21, 2019 6:30 AM
Joined: 11/30/2011
Posts: 2415


I loved the movie “Still Alice”


ElaineD
Posted: Wednesday, August 21, 2019 9:08 AM
Joined: 4/12/2019
Posts: 142


I read "Still Alice" and I have to say 'Alice' was the happiest, calmest PWD I've ever heard of.  Happy with balloons and ice-cream.  No mention of rage, asking for dead relatives, or incontinence of either kind.  Seriously?

Same thing in "Away from Her", the worst thing the husband experiences about his wife with AD is that she 'falls in love' with another man in her MC unit.  Really?

I love the concept of 'toxic positivity'.  It is so real and often enrages me.

Best wishes, ElaineD


LizzieC
Posted: Wednesday, August 21, 2019 10:16 AM
Joined: 3/28/2018
Posts: 221


Yes I agree about the "toxic positivity."..read a good article about it awhile back.  My sister is "guilty" of that even though I know she means well.  Right after my DH was diagnosed last year, I read "Mike and Me", the true story of a wife as the caregiver for her husband through Stage 8.  I will probably be considered an heretic since the book received so many positive reviews, but when I finished reading it, I was already feeling "guilty" that I wouldn't be able to live up to what the author accomplished.
Rescue mom
Posted: Wednesday, August 21, 2019 11:52 AM
Joined: 10/12/2018
Posts: 912


Wow, I’d not heard of “toxic positivity” so I googled it. Yes, it exists, and the phrase is perfect. Some people think they always have to be “positive” about any/every thing to the point, IMO, of dishonesty. Now I know there’s a term, and recognition, of it.

In terms of PWD, it often minimizes and feels dismissive of what many caregivers actually go through. I want honest straightforward answers, not pretty pictures that leave out full reality.

Also worth remembering that  so many accounts of Alzheimer’s and dementia (like Still Alice, IIRC) are about the earlier stages. The incontinence, asking for home or dead parents, wandering, etc. —the more unpleasant parts—often dont come until later. Harder to find books about that.


Agent 99
Posted: Wednesday, August 21, 2019 12:25 PM
Joined: 6/7/2013
Posts: 2165


The Selfish Pig’s Guide to Caring written by a Brit taking care of his wife with Huntington’s Disease.  I found out about the book late in our journey and didn’t read more than a few pages but those who have read it rave about it. 

It’s available on Amazon.

 

HEre’s a review of the book not from an e-seller site:

The Selfish Pig - Review

 


Victoria2020
Posted: Wednesday, August 21, 2019 2:13 PM
Joined: 9/21/2017
Posts: 864


Agent 99 wrote:

The Selfish Pig’s Guide to Caring

It’s available on Amazon.

 

From the Amazon review:
 
" The book airs such topics as sex, thoughts of murder, and dealing with the responses of friends and officials who fail to understand."
 
"Thoughts of murder", remember Jessica Fletcher  Murder she wrote, what she could have found in a Nursing Home.......
 
Oh she got close:  https://www.imdb.com/title/tt0653523/