October 16, 2009

Know someone with Alzheimer's? Read this book.


(I don't know that I'll make a habit of talking about books that I'm reading, but this one really struck me, so I hope you'll indulge me...)

I read a fair number of novels, and lately I've been on a light chick-lit kick. Shopaholic, Queen of Babble, etc. Very enjoyable, even well-written, but not something that hits hard and will stay with you for a long time. Sometimes you just need mental...candy, you know?

But after awhile, in the same way you can't actually LIVE off of candy, I need something more substantial, more mentally...nutritious. (OK, I promise to stop with this metaphor now.)

I read a blurb about Still Alice in a little free, monthly newsletter my library keeps by all the checkout desks. It sounded interesting, so I stuck it on my to-read list and picked it up at our library, along with several other books, without giving it a lot of thought. At that point, I could only vaguely recall what the book was about, and I put off reading it, actually, until I'd read all the other books I'd checked out.

Friends, I am so glad I read this book.

From the time I was very little, my mother worked as an RN in nursing/retirement homes. I'd often accompany her there for short periods of time, and I got to know a number of her patients, many of whom had Alzheimer's or experienced some form of dementia. It was heartbreaking to hear 80-year-old women crying for their mothers, as though they were small children themselves, or to see a 75-year-old man become angry at his grandchildren because he had no idea who they were.

But there were also moments when those patients were sweet and loving, if still not entirely lucid. Many of them were kind and sweet to my five-year-old self, enjoying (for some reason) my incessant singing or inane little-girl babbling. And I enjoyed them, too, although I'm sure I didn't realize why they usually didn't recognize me, or sometimes would cry or get angry with the staff.

This book is an amazing portrait of someone with early-onset Alzheimer's ("Alice" is only 50), and it chronicles her entire decline into dementia. It begins with typical forgetfulness, which Alice attributes (as most of us would) to getting older, being too busy, feeling stressed or, in her case, starting menopause. But after she forgets how to get home one day (on a route she runs almost every day), she knows something much bigger is going on.

The author has a Ph.D. in neuroscience, and I'm sure it would've been easy for her to make this a clinical, medicalese-filled account of Alzheimer's that would be informative but leave the reader feeling cheated of any kind of connection to her main character. But Lisa Genova does a wonderful job of blending the science with the pathos.

And telling the story from the point of view of the patient descending into dementia (rather than from the caregiver's point of view, watching their loved one slip away) was, I think, absolutely inspired -- and the key to why this novel had such an impact on me. You're with Alice the entire time, as her symptoms get worse, her control weakens and her life as she knew it completely slips away. You feel her frustration, fear, anger and false hope. You want the diagnosis to be wrong, even though you know the premise of the book from the outset.

My own grandmother was in the early stages of Alzheimer's when she passed away several years ago. Her symptoms hadn't progressed to the point where Still Alice leaves off (one of the tragedies of early-onset Alzheimer's is that the patient can live for 20 years or more with full-on dementia), although she had started to forget things and become easily confused. But she still recognized us, and I'm so thankful we (particularly my mother) didn't have to deal with the pain of seeing a blank stare from someone who had been such a vibrant, happy presence in our lives.

The biggest tragedy for those who suffer from Alzheimer's, I think, is that they're at times written off by their family members. Because they're no longer able to care for themselves, they're taken to nursing homes, and because they often can't recognize their loved ones, some family members seldom visit them at all, figuring, "What's the point?" Or, simply, "I can't bear to see him/her like this."

This book completely altered my view of the Alzheimer's patient. It was heartbreaking, depressing at times, and ultimately frustrating to experience this process with "Alice." But it was also fascinating, inspiring and amazing.

If you know anyone with Alzheimer's, particularly a family member, I strongly, strongly encourage you to read this book. If you do, please tell me what you think -- I'm very curious to hear others' thoughts.

6 backtalk:

Mickey Dee said...

Having a Grandpa who had Alzheimer's and a Grandma who is currently experiencing a form of dementia, this would be a book that I think my family should read - if they can get through it that is. Thanks for bringing it to my attention.

One thing I do disagree with you on is what you said about nursing homes. My Grandpa was in a home and my Grandma is in the process of going into one, not because my family doesn't want to deal with her, but because they physically cannot. It's exhausting and causes a whole heap of stress on everyone.

My grandma currently lives next door to my aunt and uncle and there's only so much they can do to keep her safe. She has had spells of leaving in the middle of the night and tries to walk into other people's homes, which isn't safe for her for the other people. My Grandma is in no way being written off. She needs to be in a place where she is secure 24 hours a day. I understand that this may not be the case with everyone, but trust me, this has been a major struggle within in my family. No one wants to see her in a home, but it's taken a lot of courage and strength and unselfishness for my Mom and her siblings to admit that they cannot do it all. Sometimes extra help is necessary. They have not given up on her, they just realized that it's time she receive ultimate, round-the-clock care that they can't provide. Nursing homes aren't always dumping grounds, they do have a purpose for a lot of people.

Alzheimer's is a frightening thing. It's true when they say it's much harder on the family than it is on the patient.

But again, thank you for discussing this book. I'm sure it wasn't an easy read, and someday I just may have to pick it up and deal with its sad reality.

Written Permission said...

Hi Mickey -- I'm so sorry to hear about your grandparents, and I really apologize if it came across as though I was anti-nursing home (and if I implied that all families neglect their family members). I certainly didn't mean for it to come out that way! I absolutely know that many nursing homes are lovely places with loving, caring staff (as I mentioned, my mother has worked in them most of her career), and many families use them the way they're intended: to provide the best level of care for their loved ones.

I know that, for many families, the decision to have a loved one in a home is a really tough one. Trying to care for a parent or grandparent yourself, especially if that person suffers from dementia, has to be both frustrating and heartbreaking. And you're absolutely right -- for many families, the decision to go with nursing home care is a really tough one; even though the extra help is an absolute necessity, and you're making the decision for the patient's and the caregivers' well-being, it's a hard decision to have to make.

I apologize if I made it sound as though I believe otherwise. There certainly ARE families who write off their family members once they're placed in a home, but of course that thankfully isn't always the case, and I shouldn't have made that such a sweeping statement.

little bird said...

I also went to a nursing home as a young child with my Grandmother who was caring for her mother. I was always very comfortable in that setting.
When I was 18 I was asked for the first time what I wanted to do with my life. The first thing that came to mind was work at a nursing home. My grandmother said I would not like that and described CNA work to me. I agreed that this was not what I had in mind. I just wanted to spend time with them.
Later when I got married and later moved with my husband to New Mexico, one of the first things I said was "I hope there's a nursing home near by." Well there was and that is how I started my career in the Activities Dept. I loved it!!! We have moved around a few times and my second facility as assistant was in an Alz. unit. I loved it, I loved them
Right now I am living in a small community where the nursing home already has an Act. Director, so I am volunteering and writing a blog that other Act. Dir. can use. I want to read this book as soon as I can an post on my blog what I thought about it. Thanks
dymphna

Lisa Genova said...

Hi,

Thanks for reading Still Alice and for taking the time to write such a generous and thoughtful review on your blog! I'm so glad the story touched you.

Best wishes,
Lisa Genova

Mickey Dee said...

Wow, a comment from the author! That's awesome!

I knew that you weren't implying that all nursing homes and families of those in nursing homes are bad news. (And unfortunately, I think you are right that SOME families do see nursing homes as an easy way out.) I think the situation may have just struck a nerve with me because it's something my family is going through right this minute. Quite honestly, my comment was me releasing my feelings about the situation and it felt damn good. So, thank you for letting me get my feelings out!

I do appreciate you mentioning this book though, it's definitely not an easy subject to discuss.

Written Permission said...

Thanks, Mickey -- I was excited to see that the author responded, too! :)

I'm glad you were able to get your feelings out, and I'm so sorry your family is going through such a tough time right now. I will keep you guys in my thoughts, for sure...

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