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100 Books in a Year: Still Alice by Lisa Genova

By Nicole | Posted Under Book Reviews | Comments (28)



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My aunt, who passed away a few years ago from cancer, once looked at me during one of her chemo treatments and said, “Alzheimer’s is the cruelest disease. There’s no way to fight it.” I was a little stunned that someone as sick as she was could be thinking of someone else, but that was just her. I should have paid attention at the time.

Alice Howland is a well-respected professor of psychology at Harvard University who begins to notice that she’s forgetting things. She chalks this up to her busy schedule as a teacher and world-wide lecturer, the stress of her career and empty-nest syndrome, and what she assumes to be the approach of menopause — she is 50, after all, and these things happen. Then one day, taking her daily run, she becomes lost a few blocks from home. She knows that the buildings are familiar and that she’s supposed to know where she is, but her mind is blank. She is dazed and terrified, and when she comes back to herself a few minutes later, she tries to brush it off but can’t.

After a visit to her primary and then another with a neurologist at Mass General, Alice is diagnosed with early-onset Alzheimer’s. Genova, who has a Ph.D. in neuroscience from Harvard herself, does a masterful job of portraying the devastation, despair, and loss that Alice begins to experience from the moment of diagnosis. While focusing on Alice and charting her steady, heartbreaking decline month by month, Genova also explores how this changes the dynamics of every relationship in Alice’s life — with her husband John, a fellow professor; with her three grown children; with her colleagues; most importantly, with herself. Alice knows that there is going to come a time when everything that she has worked and fought toward is going to be washed away, like a sandcastle on a beach, and as a professor who wrote groundbreaking papers and conducted milestone research in the area of psychology and linguistics, the idea of losing the ability to communicate is shattering.

One of the best things about this book is that Genova chose to write it in the third person but it comes across as a first person voice. It’s almost an eerie sense of Alice’s story, told by Alice as an onlooker. The eloquence of the first half of the novel begins to fade into a more simplistic fashion as the disease marches on. One plot point that jabbed at my heart, again and again, was this: Alice, who has come to rely entirely on her BlackBerry for tying her to who she is, sets an alarm to ask her five questions every day. If the day should come when she cannot answer the questions, she instructs herself to go to her computer and open a certain file and follow the instructions. It just made my heart ache that she knew she was going to reach a certain point and wanted to leave an escape hatch. As the story progressed, and she could answer the questions with less and less certainty, I found myself crying. I tried to tell myself that it was only a story, but by the end I couldn’t pretend anymore. It’s not just a story. It’s the story of every person with this horrible illness and no cure in sight. It’s my grandmother’s story.

My grandmother was diagnosed with Alzheimer’s over 10 years ago. Since then, I watched her slip away, bit by bit, until she wasn’t my Nanny anymore. Now she lives in a nursing home, and I never go to visit her. I’m a terrible person, and there’s most likely a spot reserved for me in hell, but I just can’t do it. My Nan was fierce; you didn’t cross her and you didn’t question her no-nonsense Pennsylvania German ways. She raised eight kids as a working mother, tag-teaming with my grandfather (he was on days while she did nights) and had the unwavering respect and love of her clan. She beat my ass on more than one occasion, and I deserved it. She helped my mother raise me and my sister when my father took off when we were babies, and when she and my grandfather moved to Idaho in the eighties for their health I missed them like crazy; I was thrilled when they moved back in 1996 and we didn’t have to wait months between visits anymore. This is the woman who taught me how to scrub a floor on my hands and knees, make a bed (with hospital corners), and cook a roast. Her recipe for hobo bread is legendary. She used to pass steaming baked potatoes out with her bare hands and wash dishes in scalding water without gloves. She called me “Lady Jane” when I was in trouble, and “honey” when I wasn’t. We spent a Christmas together in Aruba. She would tell me not to sit on her davenport in my dirty dungarees. She wore starched blouses and slacks in the winter, and pressed t-shirts and khaki shorts in the summer, with her hair always combed, lipstick fresh, and jewelry well-placed. She passed her middle name to me. She’s been gone for a long, long time. In her place is a stranger who doesn’t know me, or anyone for that matter. She can’t speak. She wears a diaper. She’s fed by an aide. The staff at the nursing home is wonderful, and they take extremely good care of her, but she’s really just an elderly infant in a wheelchair, and I’m a useless excuse for a granddaughter. My Aunt Judy was right; it is the cruelest disease.

This review is part of the Cannonball Read series. Details are here and the growing number of participants and their blogs are here. And check here for more of Nicole’s reviews.









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Comments

"until she wasn’t my Nanny anymore"
---
Oh Jesus, Nicole, as if your story wasn't heartrending enough, that's what I called one of my grandmothers, so you nailed me right there.

My Nanny was still in relatively good mind when she passed away, but my OTHER grandmother went years in the condition you describe. Fortunately for her, I suppose, my mom and my aunt took turns keeping her at their homes, so she never went into a nursing home.

Unfortunately for my mom and aunt, who had to endure living with someone who gibbered nonsense all the time and had no idea who or where she was.

I don't mean to sound mean here, but for all the wonders of modern medical science (and I've benefited from several of them), it is responsible for many cruelties too, and one of them is allowing far too many people to outlive their ... gotta be careful here, "usefulness" is not a word I like to use in such cases but it's what I mean, and I think you get the drift. I mean, what's the good of curing cancer if it just means thousands/millions more people will eventually get to experience Alzheimer's?

Our average lifespans now probably exceed the natural time limit on our minds. People weren't designed to live this long. I'm surely not suggesting we start euthanizing the elderly. Just saying there was a time that when people couldn't function nature would take care of that for us. Now we've loaded up hospitals and nursing homes with people who would literally be better off dead, at an enormous emotional and financial burden to family and society.

Thanks, medical science. "First, do no harm."

Posted by: , (the commenter formerly known as bucdaddy) at April 6, 2009 9:50 AM

I love you, Julie.

Posted by: jamiepants at April 6, 2009 9:52 AM

FUUUUUCK. As I was sending that, I noticed immediately and I actually started clicking frantically at the screen yelling STOP STOP STOP!

That just totally took all of the sentimentality out of my love, didn't it?

I'm a horrible person. I'm gonna go send you some facebook love now, NICOLE.

Posted by: jamiepants at April 6, 2009 9:54 AM

Nice review, Nicole. I don't think I could ever read this book: my grandad had alzheimers and died of it when I was thirteen. I never really knew him properly, because he got sick when I was about two. During the time when he was well enough to live at home with my Nanna, I remember him being gruff and a bit scary. When he deteriorated and was put in a nursing home, I used to HATE visiting him - he didn't remember me and I was scared of him - to the point of faking being sick etc. All throughout his awful, awful illness, my Nanna loved him with every fibre of her being, even though the illness sometimes made him violent (he pushed her down some stairs once. He would have never done that (so I am told) if he had been well).

Sometimes the things that he did were both hilarious and sad and I am awful for finding them funny. Eg, my Nanna was an artist, and she once sculpted a male head. My grandad got really jealous of the clay head, becasue he thought it was a real person and she was in love with him. So he broke off its ear.

I had to skip over the episodes of West Wing with CJ's dad, I was devastated when I saw The Notebook, and Iris was nearly too much for me.

In my family we have a history of diabetes, cancer, heart disease, bowel disease etc, but it is Alzheimers that scares the shit out of me. And because I am the most academic/intellectually-inclined/verbal/lingual of my family, I have always half suspected that it will be me who gets it next. You know, just cos thats how the universe works.

Anyway, nice review. And if you're going to hell for not visiting your nanna, then I'll see you there.

Posted by: JJ McClay at April 6, 2009 9:58 AM

An excellent review and two heart-rending stories. I can appreciate why you do not go and see your grandmother. Mine was diagnosed far to late with schleroderma, (a calcification of the internal connective tissues of the body). I went to see her in the hospital once to say goodbye. I wanted to remember her as the shit-kicker she was, Not the shell of herself she eventually devolved into. I think she would've appreciated that.

Posted by: admin at April 6, 2009 10:06 AM

That was lovely Nicole. What a terrifying disease.

Jamie-hee!

Posted by: Julie at April 6, 2009 10:17 AM

Is it possible that anyone who has witnessed late-stage Alzheimer's could be against a humane version of euthanasia?

Posted by: PaddyDog at April 6, 2009 10:26 AM

I'm there with you on the horror stories and guilt... I had one great grandmother and my mother go through the dementia and my poor husband is now going through it with his father and grandfather at the same time. It's hard to feel like you're loving someone enough when no one is home. I didn't see my mom for the last three years since the moved her to a home too far away for me to visit and since she went bat-shit crazy before they moved her I've continued to feel awful for how relieved I was when they moved her since I saw her twice a week before that...She was beginning to pack up and move out mentally even then. It's tough and what I try to do now is be as empathetic as possible to anyone else that mentions going through it because for the most part in your 20-30's you feel like no one get's it at all.

Posted by: slave of at April 6, 2009 10:37 AM

There's a wonderful article on CNN.com about this writer and this book today (6-Apr-2009). It's all about how she couldn't get the book published because "nobody wants to read about Alzheimers." She ended up doing the self publish online thing, and it became a best seller and then got picked up by a big publishing company.

Posted by: BWeaves at April 6, 2009 10:53 AM

Is it possible that anyone who has witnessed late-stage Alzheimer's could be against a humane version of euthanasia?

Posted by: PaddyDog at April 6, 2009 10:26 AM
--
Of course. Hard-core Catholics and other religious types would still be set in their dogma. Exhibit A: Terri Schiavo case (I know, I know, it wasn't Alzheimer's, but it was actually worse -- there was literally nobody home, not even a disfunctional mind there).

I'm Catholic but I put my view this way:

If you put a suffering animal out of its misery, that's called being humane; if you put a suffering human out of his/her misery, that's called being an animal.

The irony amazes me. You'd think we'd have more sympathy/empathy for our fellow human beings than we do for horses and dogs. But many of us don't.

I know people are scared to go there, I know it opens a huge can of ethical and moral worms. I know miracles happen.

OK, I get it. So ... let's make a deal: You show me someone who magically or medically recovered from Alzheimer's and went on to many useful years of life, and I'll join the pro-life side there.

*Waiting ...*

Posted by: , (the commenter formerly known as bucdaddy) at April 6, 2009 11:07 AM

I'm kind of worried about my mom heading down this path sometime soon. She always used to be kind of absent-minded, but now every time I see her she is repeating stories to me and swears she never told me before. She'll forget what she's talking about in mid-sentence and not pick it back up for a few minutes. She hasn't forgotten who or where she is, yet, but I'm afraid it's only a matter of time, and it really worries me. She just turned 57 last month.

Her father had the disease, and lived for years in an assisted living center, slowly fading away. I don't really like my mom that much (to be brutally honest), but I wouldn't wish that on anyone.

Posted by: Snath at April 6, 2009 11:31 AM

Nicole, everytime I read one of your reviews, I always find something to personally relate to. My great-grandmother, a school teacher for 60 years until forced into retirement and the first person to graduate from college in my family (and the only until I did), died from Alzheimer's 13 years ago. I was 5 when she first started showing symptoms, like not remembering the names of the hall of ancestors that she had in her house. She was a brilliant, fierce, and funny woman who could kick your ass when you needed it.

Watching my great-grandmother die from Alzheimer's is the thing that is driving me to work in research labs against this evil, horrific disease. I have it very explicitly laid out with my closest family that should I ever, EVER start showing symptoms of Alzheimer's, I do not want to be kept alive artificially. If they try it, I've told them I will haunt them until the end of time. Losing one's mind is absolutely cruelest irony anyone can imagine.

Beautiful review, Nicole. I doubt that you will be in hell for not wanting to see someone you loved who is no longer there.

Posted by: Melody at April 6, 2009 11:35 AM

The spectacularly crap thing about Alzheimer's is that the diagnosis is one of exclusion. They rule out everything else, except for a dementia-related disorder, then confirm the diagnosis postmortem. That's the other thing, you can't even truly identify it until it's too late.

Posted by: Melody at April 6, 2009 11:37 AM

Oh Nicole, you're not a bad person! Your Nanny sounds like she was quite the spitfire and probably wouldn't want you to visit the shell that she's become.

"She would tell me not to sit on her davenport in my dirty dungarees"
This made me smile. It's exactly the same wording my grandma used to use!

Melody that is fantastic that you're working in the field to get rid of this horrible, horrible disease. I hope it's something I get to see a cure for (or at the very least, a treatment for) in my lifetime.

Posted by: Lainey at April 6, 2009 12:15 PM

I've never had a book review make me cry before and i certainly wasn't expecting it today... This is my grampa's story too. *hug* And i'm a terrible grandchild, too.

Posted by: LyL at April 6, 2009 12:42 PM

As an SNA (student nursing aide) at a nursing home, I know exactly what you're talking about, and I'm so sorry for you. I feed, change, and bathe these adults who have completely lost the essence of who they are. The ones who are still coherant, but have lost the ability to eat by themselves and in some cases, even sit up, are in my opinion the worst off, becase they're fully aware of how far they've deteriorated and how little control they have over the bodies which have served some of them for eighty, ninety years. It's hard for family to see what their relatives have turned in to- I've wondered many times how I would feel if it was my mother, or grandfather in that wheelchair. And it's unbearable. Luckily, I haven't had that tragedy in my family yet, but it's only a matter of time.

Posted by: Jaci at April 6, 2009 1:07 PM

Nicole, I don't think you're wrong not to visit. Why confuse an elderly child by having the same strangers visit and talk about things they don't remember? Your review has me wanting to read that book, and very glad Alzheimers has avoided my family. That said, on Friday I go visit my grandmother who just got diagnosed with leukemia (at least it waited till she was 95) - that makes 3 grandparents and 1 uncle brought down by cancer. While sad to lose them, at least they were fully themselves right up to the end. I can't imagine dealing with someone having their memories, identity, and personality drained from them. My sympathies to you, and thanks for the book recommendation.

Posted by: lordhelmet at April 6, 2009 2:00 PM

BucDaddy:

Surprisingly, my mother is a hard-core Catholic (completely opposed to abortion and stem cell research), but on the issue of a humane death when a person has clearly "had enough with no dignity" as she puts it, she abandons doctrine and is fully in favour of euthanasia (if the person has expressed those wishes in advance). She has told me several times that she wants to be euthanized in the event of late-stage Alzheimers and its comparables. Of course my response is always "will tomorrow work for you?"

Posted by: PaddyDog at April 6, 2009 3:28 PM

What a wonderful review. I am so sorry about everyone who had to deal with that sort of loss.
I have to agree with whoever said that the other tragedy can lie with the body failing while the mind is still strong (sort of the reverse of the Alzheimer's dilema)... my grandfather died because his body gave out, not because there was anything wrong with his brain. At 93, after enduring Nazi torture during WWII, six heart attacks, and a whole lot of LIVING, his body couldn't take it anymore. He lived independently until 6 months before he died, when he finally realized he needed help with the cooking and cleaning.
And still, two days before he died, he was translating his favorite poem from the Latin for me (taking a detour in one or two other languages), he feebly sang the Russion dirge he wanted played at his funeral, and we later found scraps of paper near his bed where he'd worked out mathematical calculations for what day he thought he would die on. He figured he'd die on the following Wed.
As it turned out, he was right.

Posted by: Stella at April 6, 2009 5:17 PM

all of which made me forget that the whole point of the comment was that I watched him take his last breath, and I swear I think he knew it was his last.

Posted by: Stella at April 6, 2009 5:20 PM

I'm in the 'shitty Granddaughter' club. My grandma died about 6 years ago, and I stopped visiting years before that. I couldn't handle it when she forgot who I was. When I found out she forgot who my MUM was, I started hoping she'd die soon. I still hate myself for that, and for being glad when she did die, but by the time she left us, she'd broken her hip in a fall and we didn't even have the comfort of knowing that, sure, she wasn't in the same place as us, but at least she was comfortable there.
And now I'm crying. I'm blaming the cold meds.

, I spend all day testing potential medicines and I agree with you. I think the good ones just get so caught up in the fight for life that they forget about the quality of said life. The bad ones get caught up in making money. After all, the longer you live, the longer you can be taking $20K worth of meds every year.

Everyone I love has been told - when my mind goes, don't make the body hang around. Pass on whatever organs are still useful, and let me live on in that way.

Posted by: ScienceGeek at April 6, 2009 5:25 PM

If the day should come when she cannot answer the questions, she instructs herself to go to her computer and open a certain file and follow the instructions.
I would not wait for that day.

Re euthenising. Though Alzheimers is very painful for the family, and though I don't know much about the disease, I think if the person is physically fine, if they themselves are not in pain, then any euthenasia argument that compares them to sick animals falls down here. I do think it is (probably) essential not to prolong the life of someone with Alzheimers (my gran is very well both body (ish) and mind, but I'm not sure how long she would hold out without the cornucopia of medication she takes each day). And painful as it is, 'abandoning' a sick relative to a home may be the least painful option. However, I just can't agree with the idea of killing somebody who is in good physical health and not in pain. The loss of their mind is a tragedy, but should it be a death sentence? We (as a society) are rich enough that we can carry dead weight out of respect for what that 'dead weight' was, if not what it is now.
I think my arguement is based on the idea that we should never abandon someone to die and should aways do everything we can. In many (non-Alzheimers) cases people do pull through the most fantastic odds, therefore I feel this 'never abondon anyone' rule of thumb should not be qualified. Even when it is hopeless.

Posted by: ChrisD at April 6, 2009 6:29 PM

Stella, that's a bit creepy. And a hearty "hear hear" to ScienceGeek on the whole organ donation idea - give all that you can and give life to someone who needs it. What's the point in hurrying to become plant food or a cloud of smoke, anyway?

Posted by: lordhelmet at April 6, 2009 6:34 PM

Holy shit, you guys. Besides the fact that I'm sitting here crying, what else can I say? Thank you for helping me feel like I'm not so wrong. And please, go get this book. As painful as it was to read it, I wanted to run up to people on the street and tell them to get it immediately.

Posted by: Nicole at April 6, 2009 6:45 PM

lordhelmet - It's highly unlikely my organs will be of much use, I've taken too many meds to keep these lungs going for that. But my corneas should be okay, and I just really like the idea of some part of me getting the chance to see a whole lot of new things after I've gone.
I'm not too sure about donating my skin, though. I have no problem with it going to burns victims, but after I read that leftover skin is ground up for use in penis enlargements, I went off the idea a bit.

Posted by: ScienceGeek at April 6, 2009 6:46 PM

What can I say, we love you Nikki. The book is on my list as of right...now.

Posted by: lordhelmet at April 6, 2009 7:29 PM

But my corneas should be okay, and I just really like the idea of some part of me getting the chance to see a whole lot of new things after I've gone. ... I'm not too sure about donating my skin, though ... after I read that leftover skin is ground up for use in penis enlargements.

Posted by: ScienceGeek at April 6, 2009 6:46 PM
---
There's a good joke here, but I don't want to risk lightening the mood.

Also glad I'm not the only one who has wished "Would you PLEASE just DIE already ... *sniff*"

Posted by: , (the commenter formerly known as bucdaddy) at April 7, 2009 12:52 AM

There's a joke among my friends and I that I have no soul and my heart is made of stone because I never cry. I read this book about a month ago (someday I will write a review of it for the Cannonball) and I was absolutely sobbing for about 15 minutes straight. It is completely heartbreaking, not in a sappy, exploitative way, but simply because it's true. This happens to real people all the time. This is their lives, and Alice faces the issues that they think about all day. I was completely undone by this book, but I still reccomend it to people. Any Pratchett fans out there, be prepared to take frequent breaks to fight back waves of despair.

Posted by: BiblioGeek at April 7, 2009 6:55 AM


















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