Monday, July 13, 2009

Talking to Alzheimer's

The other day I was on one of my routine bookstore trips to check out the Alzheimer's section. I've read a few books thus far, some great, some so so. I'm one of those book junkies who every time I have a life event, I have to buy a bunch of books about that particular topic and drown myself in knowledge. It's just the way I work. So right now I am quickly adding a new Alzheimer's section to my bookshelf.

Thus far I would say the best book I've read is "The 36-Hour Day". That was recommended to me by a friend of my aunt's, who was caregiver to her husband. But it is one of those books you have to take in little doses, because the reality of everything is RIGHT THERE, smacking you on the face, kicking you in the gut on every page and you are constantly thinking "How in the hell am I going to be able to do this? And how in the hell is my DAD going to do this." So I've had to take the book in small doses. That way I just get smacked and kicked only once or twice a day rather than all the time.

On this particular trip I found a small, handy little book that was quite different than all the other books. The book is called "Talking to Alzheimer's - Simple Ways to Connect When You Visit with a Family Member or Friend", by Claudia Strauss. The book was short and immensely digestible.

My Aunt Judy had already given me the simple, but best "in a nutshell" advice when communicating with someone with Alzheimer's. In her words, " What ever they do or say, just agree with 'em." That is really what this book is all about. When a loved one has a lapse of memory, or tries to argue, we are to agree with them, sympathize with them, compliment them, demonstrate to them that they still have value. This will put them in the happiest place, which is where we want them to be.

If you want my take on it, you could summarize a lot of the recommendations as "Be Phony", which really isn't fair to say. But I am the type of person who likes to argue a point, prove I'm right (I am my father's daughter after all), and pretty much say how I feel. And I am supposed to calmly tell Mom "Gee, that's an interesting story! I can't believe you never told me that" when she repeats the same damn story for the 1,435,573rd time in one day? OOOHHHH BOY. This is going to definitely be one of those "reread and refer to often" books.

We are not supposed to lie, however. But we have to convey to Mom "emotional truths". So while I know that Mom has told me the story 1,435,573 times, I need to focus on the fact that she wants to feel like she's contributing to the conversation and that she's worth something to me. If I tell her she's told me the story before over and over, and act annoyed, this hurts her, which I really don't want to do. The book says that we should convey in our interactions with them "all the things you would want for yourself", like love, sincerity, truth, respect, genuine interest, enjoyment in their company. So saying "Gee, what a great story" is not lying, and builds her up much, much more than saying "Come on, Mom, you keep repeating that story over and over." The "emotional truth" here is that I love Mom, and I want her to feel that love in my words and actions.

What was discouraging was that I learning in the book that many of the ways we have been reacting to her lapses in memory are dead WRONG, and have likely been beating her down and making her feel worthless. This in turn makes her more difficult and unpleasant to be around. Thinking back to that "Key Lime Pie" episode makes me cringe. We've all got to get it in our heads that people with Alzheimer's may have trouble with mental processes, finding the right words to express the meaning in the heads, but their feelings are still intact. They feel pain, embarrassment, joy, humor, other people's interest in them, companionship, loneliness, and boredom. They can feel useFUL, and they can fell useLESS.

Yeah, that's all easy to preach about, but putting it into practice is REALLY going to take some time, especially for someone like me who is easily annoyed, lacking in patience, and just overall not that touchy feely. Yet another self-improvement project for me to work on. They say God gives us these experiences in our lives to help us grow and improve. THIS student is going to be QUITE a challenge to teach.

Anyway, it's a good book. Now it's time for me to go learn how to talk "fluff".

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