Last week I got another book on Alzheimer's that I've been wanting. I'd read it from the library, then added it to my Paperbackswap wish list. It finally came through for me last week. When it arrived, I told Steve that this one deals more with how to continue to care for your loved one in your home, so I wasn't totally sure why I requested it.
We've known for a year that bringing Steve's Mom into our home wouldn't work after all. We knew it wasn't fair to move the boys to the living room so she could have their room. We knew our house was too noisy with ten people, and that Alzheimer's patients don't deal well with a noisy environment. We also had come to realize that if she lived with us, we'd either have to take her everywhere or stay home. She wouldn't want to go with us everytime we needed to leave, but we couldn't leave her home alone, especially as the disease progressed. We'd be making big changes, and it would limit our children's ability to participate in church, 4H, and homeschool events.
But even though I knew Steve's Mom wasn't coming here, I kept reading about the disease. I wanted to understand its progression, the many different effects it has on people, and how to communicate with her better. And, I think deep down, I wanted to be prepared in case Steve develops Alzheimer's later on.
Although they always try to encourage people by saying it's usually not genetic and even if your parents have it, you probably won't get it ... in Steve's family it definitely has a genetic component. Steve's Great-Grandma had it, his Grandma had it, his Mom has it, and her only living sister has it. Maybe it only affects the females in the family ... but we don't know for sure. We're hoping this disease stops right here, with his Mom, instead of spreading to her children and grandchildren or her sisters' children and grandchildren.
We're reading about how to cope with the disease, how to facilitate better living for those affected by it, and also what we can do to prevent it in our own lives. How can we delay its effect if we are going to get it? And in the meantime, I keep reading more books, watching more documentaries, and adding more items to our home shelves. We do not want to go unprepared into the battle with this disease.
Some of my favorite resources:
~ Alzheimers: Finding the Words by Harriet Hodgson
~ Learning to Speak Alzheimers by Joanne Koenig Coste
~ There's Still A Person In There: The Complete Guide to Treating and Coping with Alzheimers by Castleman, Gallagher-Thompson, and Naythons
~ The Alzheimer's Prevention Program by Gary Small and Gigi Vorgan
~ Loving Someone Who Has Dementia: How to Find Hope while Coping with Stress and Grief by Pauline Boss
~ The 36-Hour Day by Nancy Mace and Peter Rabins
~ The Alzheimer's Project DVD set by HBO
~ The Forgetting: A Portrait of Alzheimer's DVD by PBS
Resources I want to read or watch:
~ Independent Lens: You're Looking At Me Like I Live Here And I Don't DVD by PBS
I'm sure I"ll find new ones ...
Still learning,
April E.
