Wednesday, April 27, 2011

PostHeaderIcon Cara: While it's still in my head....

I usually wait until after book club to talk about the book. This time I can't wait. I just finished it a few days ago, since I like to read the book closer to book club day so it's fresh in my mind. I like to write my posts while the thoughts are still floating in my head, unless I write my thoughts down to leave clues to myself to remember what I wanted to say. Alice did that.

Just finished reading Still Alice by Lisa Genova. It's the story of Alice a celebrated Harvard professor of psychology's descent into dementia after being diagnosed with early onset Alzheimer's disease. It really brought you into the mind of someone young, (she was only 50) losing her ability to remember who she is, or who her family is. I really found it heartbreaking and a little unnerving.

She wrote herself notes to remember things then can't remember why she wrote a certain thing on that list. I do that. She forgot people's names that she has known. I do that. She gets lost walking home, even though she had walked that way for years and years...OK I haven't done that. Yet.

What was truly heartbreaking, was she knew it was happening. She knew she was slipping away. That is so scary to me. My husbands grandmother who has since passed, was bed-ridden for 10 years. But she had "her head" for most of those 10 years. I remember thinking when I get old I just want to be loopy and not know what I am doing, instead of just being physically out of it, but aware of what's around me. After reading this, maybe not.

As I was reading it this past week, I had been spending time with family. Particularly my husbands other grandmother. She is going to be 90. While she never suffered from any early onset of dementia, at 90 I think it's safe to say she has started to lose some pieces of herself, who she is, her life. She can still laugh at herself when she forgets my husband's name. She remembers mine (he's the grandson) and we laugh when I remind her of his name. "No pay attention to me I am Shtoopeedo!" She knows she is forgetting things and most times can be reminded of what she forgot. But as I read this book I looked up and saw her sitting on her chair. I wondered is she confused? Does she really not know who that is talking to her and is just making believe? Is she struggling in her head to put a name to this face that she somewhat recognizes? I don't know. But I can tell you I never thought about it before I read this book.

There was so much going on in Alice's head. Things she thought but could not get her mouth to say. Moments when wanted desperately to remember who this woman was sitting in front her, she knew she must have loved her because of how she made her feel. It was her daughter. 

"You're so beautiful," said Alice. "I'm afraid of looking at you and not knowing who you are." "I think that even if you don't know who I am someday, you'll still know that I love you."
"What if I see you, and I don't know that you're my daughter, and I don't know that you love me?"
"Then, I'll tell you that I do, and you'll believe me."

A time when she looked in the mirror and cognitively knew that it was her reflection, but she didn't recognize herself.

I think the fact that she was whirling through life...being a revered sought after professor, traveling, running through her days, critical of her child's chosen path because it was not what she would have chosen for her, living "next to" instead of "with" her husband who she truly loved. She didn't realize she was living her life this way until her brain decided to shut her down...and she clung desperately on to her "here and now" as it slipped away day by day. It pained her to watch her family watch her slip away. Think about a time when you were upset but turned your head from your child so they wouldn't see your pain and be afraid. Imagine that you were causing their pain and there wasn't a thing you could do about it...but watch from somewhere inside your head.

Alice did an interesting thing. When she still had her mind she wrote herself a letter on her computer with clues how to find it, to read someday if she was spiraling down and didn't remember who Alice was. Without giving too much away she described herself, who she was, who she loved, what she her current "self" would know. I wonder if that's a tool that can help us even if we aren't suffering from dementia.

Maybe on a really good day we should sit down and write ourselves a letter reminding us of how great we are, what we do well...things like that. And put that letter in an envelope seal it and put it away. Then the day that you second guess yourself or beat yourself up, you could take that letter out and read it. Maybe then we can convince ourselves we are pretty dam good? Maybe.

Still Alice was a great read. If you know someone with Alzheimer's or you are a caregiver, you should read this. It has made me look at things differently.

It has made me (for this week at least since I was getting a little R&R) stop and listen in the morning to the sounds....because I still know what they are and why I like to hear them. Like the sound of birds waking up and starting to sing before the sun's come up. Or the local train whistling faintly in the background as it rumbles through Mayberry...that sounds like home.

Or to stop and turn and look at my 8 yr old's face as he is talking to me about God knows what.....but knowing that little freckled face will be looking down at me someday with whiskers on it's chin. I want to remember every freckle and every silly thing he said. Until tomorrow morning when we are running for the bus and he can't find his shoe and I want to drop kick him out the door (keepin' it real, keepin' it real)

Jenn's two cents:  This book broke my heart.  If you want a real tear jerker - this is it.  It also made me put a lot of things into perspective.   It scared me a bit too. I too forget where my keys are and panic when I can't find them.  I have torn my office apart looking for this or that.  I have walked into a room and forgotten why.  I always hope these are just signs of a overwhelming to do list that I can't always keep track of in my head.  Still Alice brings us smack into a reality of what it is to have Alzheimers and focus' our attention on the people living with it.  It makes me look at people a little differently now, my elderly parents, my mother-in-law and myself as well.  A good read but be prepared for a slap-in-the-face-awakening.


Anonymous said...

Every human being can relate. Added to my book list.

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