Saturday, July 28, 2012

Still Alice by Lisa Genova






36. Still Alice
by Lisa Genova
fiction, 2007
finished 6/29/12



I'm quite sure it was Marcia who first brought this book to my attention. And then I read reviews from Les and Kay. I knew I wanted to read it but didn't pick it up until this summer.

Tom's father has Alzheimer's. For a while it was quite slow in manifesting itself, but lately the changes are coming quicker and stronger. The other day Tom was to bring his father for a haircut at 9 am. When Tom arrived to pick him up, he wasn't dressed. His landlord said that the previous evening he came down his outside stairs, all dressed and ready for his haircut. The solution that day was to make a later appointment, but we know that there are going to be events and situations for which there are no solutions.

At present he lives alone but in a house owned by a wonderful man who keeps track of him. He still recognizes everyone. He still goes down the hill to his part-time job as a proofreader at the weekly hometown newspaper. Don't ask. We can't imagine how he does it, but they may just keep him on because everyone there is so fond of him. Yet, this very job has created a couple disturbing Alzheimer's situations. One evening he went down at 8 o'clock, thinking it was the morning. Another time he called here just before midnight all upset because he had to get the paper ready for publication the next day. Tom talked him out of this, saying it wasn't his job; that someone else would be doing that work and he could go to sleep.

The difficulty dealing with a person who has mental issues, whether Alzheimer's or anything else, is when they look you in the eye and speak rationally. We all tend to take people at face value. If someone says they're out of orange juice, the listener assumes it is true. But we are fast learning it isn't necessarily true. Tom has jumped into the car to go buy medicine his father said he was out of, only to bring it to the apartment and see bottles of it sitting on the shelf. For a while we thought it would be good for Tom to call each morning just to check in, but even if he does so, whatever his father says at 9 am may be entirely different at 9.05. That's just how this disease works. There are no rules. There is no map. Every sufferer is both the same and different, one from another.

But there is a guidepost. Still Alice is a most helpful way to get inside the head of one with this disease. The reader meets Alice, a woman who has it all - a family and a very successful career as a Harvard professor. Both husband and wife are acclaimed in their fields and spend much time working. The children are grown and living their own lives. She begins to quietly, slowly feel a little odd. The book in fact begins with her husband John racing around looking for his keys, a typical situation in their household. It is a moment of levity; a moment of familiarity for the reader because this is something we all know. If not ourselves, then our partners or children cannot find things that are right in plain sight. The sense I got was that this is a problem John has, but not Alice, at least not until recently. She hasn't told John about the little episodes of forgetting she has experienced, like not being able to find the charger for her BlackBerry, and after a search bought a new one only to find the original plugged in next to her bed, 'where she should have known to look.' The book is fiction but reads as if it were really happening. Sometimes it felt like a thriller in the way it built up. What now? we wonder. After that beginning, the narrative slips into a regular tale of life with concerns about a daughter and annoyance that her husband is away so much. And isn't this like all mystery/thriller books? Normalcy with a little something strange, and then the strange begins ever so slowly to take over the normal. It is a very gripping story which I read at two sittings. The characters and the situations have stayed with me. When things come up with Tom's father, I am reminded of an event in the book. I've told Tom how very, very helpful Still Alice is in understanding how the disease can work. Sometimes Alice seems almost 'normal' and then does something so unexpected that I was stunned and shaken. Later in the book, as her Alzheimer's has gotten worse, but she is still functioning, she attends a seminar. After someone gives a presentation, Alice makes a comment which is received with respect until … she says the whole thing over again though in fewer words. What a mysterious disease that causes someone a few moments of brilliance which she can't recall saying but can repeat.

The confusing thing for those of us on the outside is that sometimes the person with Alzheimer's does indeed seem so normal. Tom will say something to his father and it seems as if he understands. And he well might for that instant, but then it is lost. This has been the hardest thing for Tom to grasp so far. Tom says he has to stop looking at his father's words in a 'logical' manner.

Still Alice is simply brilliant in the way it shows Alice's state of mind. A morning is described when she and her husband are going to go for a run. She felt the cool air and went inside for another layer of clothing. After searching through several drawers, she found a lightweight fleece and put it on. She noticed a book she'd been reading on her nightstand. She grabbed it and walked down the stairs and into the kitchen. She poured herself a glass of iced tea and walked out to the back porch. She settles down to read. Goes and gets a blanket. John finds her and asks, "What are you doing, aren't we going for a run?"

And there is a terrible incident when she can't find the bathroom in her own house.

Every character in this book is well-written, and real. Her husband does not come off as a knight in shining armor, but his actions do seem possible in light of who he is. And really, how do any of us know how we would react if the person we know so well is no longer that person. It's hard enough if the couple is in their 80s, but being thirty years younger creates particular strains on the relationship. We see the impatience of her children, and the great kindness of those same children. They react, when what they are reacting to can change in an instant. Alice remembers the word 'condiments' but can't name that
... tub of white butter. But it wasn't called white butter. What was it called? Not mayonnaise. No, it was too thick, like butter. What was its name?
Some people say that they would rather have cancer because it may be able to be cured, while Alzheimer's at this point in time is unstoppable. Even Alice feels this way.
She'd trade Alzheimer's for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted herself the fantasy anyway. With cancer, she'd have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she'd be able to look them knowingly in the eye and say good-bye before she left.
I understand this view, but it is not my view. Probably it comes from watching two parents die of cancer. I would hate to know I had cancer. I would hate that 'good-bye.' Whereas, if I had Alzheimer's I wouldn't know, at least at some later stage. You know the Alzheimer's joke? The doctor says to the patient. 'I have two bits of news. You have cancer and you have Alzheimer's.' And the patient replies, 'well at least I don't have cancer.' This may seem irreverent and impossible, but it happened to Tom's father. He has had lymphoma for a couple years but it is very slow moving, and the doctor has said outright that this is not what will kill him. When Tom and his father were at a new doctor's office one day, there was a mention of chemotherapy. Tom told the doctor his father hadn't had chemo for his cancer. And Tom's father piped up, 'I have cancer?' So there you are. I would be happy with an illness that let me forget I had cancer. Yes, there are horrific things about it, but if I had my choice of the two that's what I would choose.

One day Tom had to interrupt class because he had to call his father. He asked this group of about 18 junior high kids if they knew anyone with Alzheimer's. Five hands went up, and they proceeded to tell Tom their own personal Alzheimer's stories. This disease is a plague, and is only going to get worse as we baby boomers get older and older. Doing crosswords, using stainless steel cooking pots, running every day - they aren't going to prevent it. The early onset seems to have a genetic component, but most people get it when they are older. The statistics from the Alzheimer's Association are chilling:
One in eight older Americans has Alzheimer’s disease.
Alzheimer’s disease is the sixth-leading cause of death in the United States.
Over 15 million Americans provide unpaid care for a person with Alzheimer’s or other dementias.
Payments for care are estimated to be $200 billion in 2012.
I am someone who believes in the gifts, even the strengths, that can accompany a dysfunction in the brain, and Still Alice illustrates my belief. Alice's daughter is an actress, and though Alice doesn't 'get' what is going on in a play, she does understand the essence, the truth of a character and what the actress is trying to portray in that character. In a very touching scene near the end, Alice doesn't remember her daughter Lydia's name or that this young woman is even her daughter but when Lydia asks
"Hey, Mom, will you listen to me do this monologue I'm working on for class and tell me what you think it's about? Not the story, it's kind of long. You don't have to remember the words, just tell me what you think it's about emotionally. When I'm done, tell me how I made you feel, okay?"
Alice nodded, and the actress began. Alice watched and listened and focused beyond the words the actress spoke. She saw her eyes become desperate, searching, pleading for truth. She saw them land softly and gratefully on it. Her voice felt at first tentative and scared. Slowly, and without getting louder, it grew more confident and then joyful, playing sometimes like a song. Her eyebrows and shoulders and hands softened and opened, asking for acceptance and offering forgiveness. Her voice and body created an energy that filled Alice and moved her to tears. …
The actress stopped and came back into herself. She looked at Alice and waited.
"Okay, what do you feel?"
"I feel love. It's about love."
The actress squealed, rushed over to Alice, kissed her on the cheek, and smiled, every crease of her face delighted.
"Did I get it right?" asked Alice.
"You did, Mom. You got it exactly right."
And Lisa Genova 'got it exactly right.' This is a perfect book. It is real but not completely discouraging. Facts are faced and not faced. People respond well and don't respond well. It is the truest fiction I've ever read. The author has given a great gift to the world.

40 comments:

  1. Nan, such a beautiful, heart wrenching post. My dear friend, I'm so sorry about Tom's father. I'd give anything if no one ever had to deal with Alzheimer's ever again. But, it's survivable, at least for the families. And there is (my favorite little homily about this disease) "joy in the most unexpected places". There is laughter and precious moments and memories to tuck away. My love to you guys. You know you have my support in any way that I can help.

    STILL ALICE is a marvel, isn't it? I've recommended it to so many people. It's not a book without hope.

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  2. Nan, this is a truly beautiful post. I can't imagine how it must be for Tom and your family. In many ways, I have always thought that Alzheimer's must be so much more terrible for the family than for the sufferer, but it seems like Still Alice is written in a way that shows just how painful it can be for the sufferer as well.

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    1. Thanks so much. I think you're right. Tom's father often laughs off his 'forgetfulness.' But the book does offer the horrors faced by the sufferer. I expect it is vastly worse to have it at 50 than 84.

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  3. Thank you, Nan, for sharing your experiences and views, of which I hold too, and for this heartfelt review. I will look for Still Alice.

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    1. I'm sure you will think it wonderful.

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  4. I'm so sorry about your connection with Alzheimer's disease.

    Alice will always have a special place in my heart. I loved this book.

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    1. Thank you. She does seem like a real person to me.

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  5. Nan, this is a remarkable post and sensitive post and I'm so sorry about Tom's father. I will look for Still Alice. I know what you mean about preferring to have cancer than Alzheimer's because, my mother-in-law had dementia (similar in its effects to Alzheimer's) and although there were time when she knew she couldn't remember things and she got confused she lived very much in the moment and for a good length of time she was happy and content. But it's hard for the family.

    I was very much taken with two other books about Alzheimer's - David Shenk’s 'The Forgetting: understanding Alzheimer’s: the biography of a disease' and 'Iris' by David Bayley, which is his portrait of Iris Murdoch and their experience of the disease.

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    1. Thank you so much.
      I have read Iris, and seen the movie, and found both of them so very moving. The scene in the flim of her dancing on the beach has stayed with me.

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  6. Nan, one of my closest friends developed Alzheimer's (probably some years earlier than we all knew). She was a nurse, and in her later carer worked for a group of three residential homes for the elderly.... where she could see this disease every day. She was always an eccentric lady, forgetful, charming, good company, and it was a long time before the eccentricities were seen as "not the norm". The saddest thing of all about the damned thing is that once it has run its course, the sufferer doesn't know you - but you will always know them, and that, of course, brings its own kind of heartbreak. Thank you for recommending the book, I do hope that it continues to reach a wider audience.

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    1. I wonder how many 'eccentricities' over the years may have been Alzheimer's. Your friend sounds really wonderful. I love people like that. Is she still living? So very sad for you to watch.

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    2. No, Nan, she died about five years ago. Her daughter is one of my closest friends, although not geographically as she lives in Nova Scotia, and I in the UK. I do so hope that it never hits her, a lady as eccentric,funny, and charming as her mother was.

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    3. Thank you for coming back. In the book, it sounded like the early onset is the kind that is genetic.
      I love to think of mothers and daughters being alike like that.

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  7. What a heartfelt post. I loved this book -- very moving.

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    1. Thank you. And yes it was moving - good word.

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  8. Thank you so much for this post. A very close friend of mine has Alzheimer's, she was terrified as she felt herself slipping out of herself, her old, capable self. Now she is unable to communicate much at all but I will recommend this book to her husband who, expecting a happy retirement, has found himself in a very different world.
    I am so sorry this has visited your family, so very hard but your compassion and understanding shines through every word you have written.
    Carole

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    1. How very, very sad for this man. Did you see Margaret's recommendation of Iris above? I'm sure you've read it, but it may have more meaning for your friend's husband than Still Alice, though both are excellent. The husband in Still Alice doesn't come off too well. Perhaps human, but not so kindly.

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  9. It can be so difficult when you can't see any logic to behaviour, can't it? Any book which offers an insight into dealing with someone with Alzheimer's must be a good thing.

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    1. It certainly shows the way a sufferer's mind can change from day to day, even minute to minute. Quite a brilliant book I think.

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  10. My father and his sister both had Alzheimer's. With that experience I can say that it is the worst disease you can get, both for the victim and for the family. The most important thing for my father was his dignity which is of course exactly what he lost entirely. I don't know of anything more difficult for those who love Alzheimer's victims. Now that I have cancer, I agree that I would much prefer having this disease, if I must have anything, because I can take action against it.

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    1. I can see how you feel that way Barbara.

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  11. Hello, I am an American living in Zurich and I enjoy reading your blog very much. My parents live in Alaska, where I was born and raised. My mother has Alzheimers (she began to decline around 2003) and my father (age 87) is devoted to her, visiting daily at the skilled nursing home where she resides. He cared for her at home until last year.

    I'm grateful that I am able to travel home twice, or sometimes 3 times per year. It has been, as Nancy Reagan said, "a long goodbye". My Mom - a wonderful, vivacious, capable,creative, and funny lady - is no longer with us. In her place is a sweet little girl (perhaps age 1 or 2?) who can't really speak, but loves to see smiling faces, is delighted by singing, and smiles and laughs with her caregivers, who are so very kind and genuine with her.

    I say a hearty amen to your review - I loved "Still Alice" and as soon as I finished it gave my copy to my brother. Or else I would be re-reading it, as this post has reminded me of what a great book it is. Thank you, and God bless you and your husband as you care for and relate to your father-in-law.

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    1. Thank you for coming by and leaving such a nice note. Your description of your mother illustrates how it isn't all bad for the sufferer. Singing and laughing as a child sounds better than many other old-age diseases, at least to me. I own another book about it, a nonfiction one which I hope to read soon, and write about here. Music is part of it, I think.

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  12. Nan, thanks for sharing your family story of Alzheimers and then relating it to the book. It really helped to make thinking of reading this book not such a frightening experience - because I was afraid to read it, I dread this disease so much. I'm sorry for you and Tom and I hope - well, you know, that there is as much love as possible for you and yours with this disease in your father-in-law.

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    1. Thank you. It is really such a wonderful book.

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  13. I'm beyond words that will adequately let you know how much I loved reading your post. My heart goes out to Tom and that every day he loses a bit of his father. My mom went through this with her own father and it broke my heart. I remember the last time I visited my Grandpa. I gently put my hands on each side of his face and looked him in the eyes so that he could see how much I loved him. After I told him that he was the best grandfather any child could have he said to me, "Sis, I don't know who you are, but I do KNOW that I love you."

    This book broke my heart and I agree with you about the author giving us a gift.

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    1. Your story about you and your grandfather is just what Lisa Genova was saying in this book, in the 'actress' passage - that Alzheimer's sufferers can feel deeply.

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  14. Quite a moving account about a difficult disease, and I am in awe of how many books you read!! You will be my 'go to list' when I'm looking for suggestions. How do you do it! What is your secret?

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    1. Oh, not so many when I see readers with over a hundred books a year! I spend some of my possible book-reading time reading blogs, websites about books, etc. :<)

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  15. This sounds like an incredible book. I'll definitely be getting it through interlibrary loan. Nan, you've become my go-to person for books, movies, and series. Thanks so much!

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    1. 'Incredible' is just right. And I thank you for your words.

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  16. I agree with our dear friend. This is such an amazing post. It's as personal and real as Lisa's novel (which reads very much like a memoir, in my opinion). My heart breaks for you and Tom and his father... and for all who suffer from this awful, awful disease.

    Still Alice remains on my Lifetime Top Ten list. It's truly a remarkable work and one I will read again and again. And as you know, I loved her second novel (Left Neglected) just as much. I hope you get a chance to read it, as well.

    Love to you, my dear friend.

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    1. I have ordered Left Neglected, and also look forward to the new one. She is an exceptional writer.
      Thanks so much for your kind thoughts.

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  17. A beautiful review. Thank you, Nan.

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  18. I'm adding this to my to-read list. One of my grandpas when he passed away in 2005 had Alzheimer's (what he died of ultimately was a hospital infection, but his Alzheimer's was quite advanced at that point). I'm interested in how the book would unfold with someone at the center whose mind is slowly coming apart.

    Thank you also for sharing the story of Alzheimer's in your own family. Your review is beautifully written.

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    1. Thank you so much for your words.
      I think you will really like the book. She is a really good writer, and the story is so well done.

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Now that I am a grandmother, it seems that I am often late in replying to your most-appreciated comments. But I read them as soon as they come in, and I will write as soon as I can. Please do come back and check. I love these blogging conversations. A little addendum - I've just spent quite a long time catching up with dear notes you left me months ago!! I do hope you can get back to read them. And I'm trying to be much more prompt now!

Also, you may comment on any post, no matter how old, and I will see it.