Friday, December 17, 2010

Good Reads on the Tough Topic of Dementia

Denial appears to be very functional, particularly for persons with dementia. I know. I live with one (mom's caregiving company "fired us" this last Friday; and I appear to be the only one preoccupied with this. She seems to be unconcerned). Family members heap on an added layer of indifference, to wit: my family asked me, "What's your Plan B?" Notice the possessive pronoun in that question.

It's rough. But, bring in the following excellent books to the rescue.

I've recommended Still Alice by Lisa Genova to many, but what I find missing in that book is an illustration of the behavioral component of dementia, which in my opinion is much worse than the memory loss. What may make that book less helpful to families is that it is fiction that reads like great non-fiction (but it's truly not and therefore misses the mark on truthfulness). It is written by a PhD Neuroscientist about a woman with Early Onset AD, which is an unusual form of AD, and spares familys, comparatively, with its fast decline.

I said comparatively.

I just finished reading, Keeper by Andrea Gillies, that fills that gap in the literature. It is more of a biography of the author's elderly mother-in-law and her life with Alzheimer's Disease (late mid-stage and late-stage I would say) which not only includes all of the emotional and behavioral complications involved, it, by necessity, highlights them. The book is about the disease of a family, as AD or dementia in general, impacts everyone in the family it touches. The family's decline, particularly the author's is as marked as that of the sufferer, "Nancy," her mother-in-law. And because it is true and written by an excellent writer, it is wincingly exposing. I can see myself in every mean thought, every instinct to run away, every instinct to feel self pity, and particularly in what is now my paranoia in my dealings with the geriatric professionals, clinical and social worky, from agencies brought into help. I'm not a good self censurer, and have said way too much to the caregiving agency about my state and my mother's situation. If I had read this book first, I would have been more guarded.

Live and Learn.

Both books are beautifully written. Both include helpful information about AD, and its stages and types.

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