Thursday, April 28, 2011

An Alzheimer's Disease Reading List

I have a stack of books I'm reading at the moment, though it isn't a fun list.  Maybe you have a stack of books you wish you didn't need to read, too.

It started with seeing a book at the health department while waiting for an appointment.  It was Caring For Your Aging Loved One and had some really helpful information in it.  I liked that it listed SEVERAL solutions for common problems that caregivers have while dealing with elderly loved ones, especially those suffering from dementia in some way ... problems I know my parents have had with my grandma, friends have had with their parents, and we are beginning to face with my mother-in-law.

When I went to my library to check out the book, I found several others on the shelf next to it that related more specifically to Alzheimer's.  There were others that I will return to check out, but I started with this stack:

  • Alzheimer's:  Finding the Words - A Communication Guide For Those Who Care by Harriet Hodgson

  • There's Still A Person In There:  The Complete Guide to Treating and Coping with Alzheimer's by Michael Castleman, Dolores Gallagher-Thompson, Ph.D, and Matthew Naythons, M.D.

  • Caring for Your Aging Loved One:  Don't Go It Alone by Sherry B. Peacock

I am gleaning a lot of ideas from these books that will help Steve and I understand his mother's disease, her confusion, and the reasons she acts the way she does.  But it is also just comforting to read of others who have walked this path already.  We see his mother in the stories we read in the books.  We laugh, even while we are saddened.  We can not deny that she has Alzheimer's Disease.  She isn't going to get better.  As we watch her ability to communicate slip away ... more words forgotten, more sentences unfinished, our names occasionally forgotten ... we know that one of these days she will forget more than just our names.

In a perfect world, Steve's Dad would still be alive to care for his mother until she needed a nursing home and its focused nursing care.  In a perfect world, she would be older, we would be older, our kids would be older, and we'd have a room for her to move in with us.  But, she is 69, Steve is 38, she is a widow, we have 8 kids in a 3-bedroom house, and we know she can't continue to live on her own very much longer.

Sometimes we are frustrated with her illogical behavior and her stubbornness.  We are frustrated when she calls us six times in a few hours to express concern over a piece of mail she received, but when we go over to get it, she has lost it.  She gets frustrated at us when we tell her that mail is important and she has decided it's no big deal.  We are frustrated when she won't go to a doctor to check out her hearing loss or the "cold" she's had since last Fall.  She is frustrated that we suggested she see a doctor.  The books are helping us see the reason behind her behavior.

Even though she denies that she has Alzheimer's Disease now, and even though she proclaims that she's doing just fine living on her own, she is afraid.  Her confusion, her inability to remember, her inability to follow conversations in group settings, and her inability to successfully complete tasks she used to do all scare her.  Even if she doesn't admit it, even to herself.

I'm hoping we learn how to better communicate with her and care for her.  I'm hoping these books will help us know when to move her into assisted living, when to take away her driver's license, when to just tell her she's going to the doctor instead of asking.  We want to protect her from harm (or harming others), but we also want to protect her sense of independence and her feelings.

There's Still A Person In There quoted from a book I really must find.  We need to read it.  It's the account of an Alzheimer's patient as he progresses into his illness ... My Journey Into Alzheimer's Disease by Reverand Robert Davis.  I wish Steve's mom had been this open as she realized she had Alzheimer's.  She never wanted to talk about it, and now she denies it.  I hope the book will help us understand her even more, though every person has a unique path into Alzheimer's.

Do you have a stack of difficult, not-fun books that you need to read, as well?

April E.



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