Sunday, March 5, 2017

Still Alice

Book: Still Alice
Author:Lisa Genova
Edition:eBook from the Fresno County Public Library
Read:March 5, 2017
293 pages
Genre:   Fiction, Psychology, Aging
Rated: 4  out of 5

Synopsis:
Alice Howland is a Harvard professor who lectures and researches in psychology, particularly in the area of linguistics. One day she gets lost on a route which she normally runs on her daily jog. Later in a lecture she stumbles over a word she normally knows inside out.

She thinks that it is only going through menopause causing her confusion. Her doctor does not think so and refers her to a doctor in the Mental Disorders unit who figures out she has Early Onset Alzheimer's Disease (EOAD). The book works through the processing of what this means, both on Alice's, her husband's and family's parts.

It also follows her through the deterioration of her mental condition. From being able to give good lectures to even regressing to a point where she forgets she is the professor for a class and thinks she is a student. Harvard catches on that something is happening-maybe drugs or drinking and is shocked that its is EOAD. She no longer can give lectures and is assigned only to one graduate student who is nearing completion of his doctoral thesis.

The book ends with Alice still with the family but significantly impaired to the point where she recognizes family as familiar objects.

Thoughts:

A couple of weeks ago, I heard an interview with Amy Dickinson on NPR. She talks about the dedication page, which is to her mother with one of her sayings, Life is a memory. That evoked a lot of thoughts in me. First, is this true? Can we measure our lives by the memories? Is that who we are? If you have dementia or amnesia, are you no longer that person who you once were? Or do you continue to be that person?

I have been asking myself variants of that question. Alzheimer's sort of gets to the core of the question, who are we? Am I just a bunch of carbon molecules peculiarly put together? Or am I whats in my mind? Or are we something else beyond mind and body? The Christian says we are beyond that.

September 2003
Genova hits the chief concern of Alzheimer: the lack of context. This is from my thinking, nothing which I have really read or research. But from my imagination, what would be the worst part of this disease? The lose of navigational powers. Why is this more depressing than lose of memory? Both are bad. But the navigational skills is because of our memories. It is how we know how to relate to each other.

Genova follows the decline of a Harvard professor as she deals with Early Onset Alzheimer Disease. The reader is placed in an almost diary format novel, letting you in on Alice's thoughts as she loses her memory and ability to work out daily situations. This is done skillfully with sensitivity.


February 2004
Alice's husband is in denial concerning the diagnosis of EOAD. There is a desire to say it must be something else, anything else.  But there is a strong reason to believe that the diagnosis is true-either because the victim knows it is true or because the victim cannot repress the evidence over time. We do not want the diagnosis to be true because it denies who we are. Our memories is how we know things. Without that, we are confused, not able to navigate our environment. Eventually we become someone whom we no longer recognize.

April 2004
Genova talks about that with in-vitro implanting that they can select which embryos have the presenilin-1 gene so that offspring do not have the gene for EOAD. That sounds wondrous. Is it better to let things happen by chance or the definiteness of filtering out bad possibilities? I definitely would not want a child of mine to have EOAD. So that would be the deciding factor. And yet, do I really want to determine the exact characteristics of a child? Somehow, that seems so wrong, so much as making a child in my own image, rather than God's. (Does this imply God could have EOD-I think not.)

May 2004
There is a comparison to butterflies. How short their lives are. But just because they are short, does not mean that their lives are tragic. On the contrary, they have beautiful lives where their wings bring joy to so many people. Is this a good way to think out our lives? Or particularly somebody with Alzheimer's? Do not look at the end of life as everything, but look at their life in total.

Then there are stories of devotion. The man who comes everyday to have lunch with his wife, even though his wife does not know who he is. He knows who he is and that is important.

One devastating conclusion: No one got out alive.  [from Alzheimer]. You have it, you die with it. There is no reprieve, it only goes relentlessly on.

What we want for ourselves when there is not much  time, reveals who we are. Is it important to have professional standing? Or simple joys? What would I do? Want? Alice's was to see the best for her children, to be with her husband, to read.

August 2004
It is pointed out that it was hard for Alice to track conversations with many participants in t. But because she was not able to process the words, she was able to read more into the body language.   Is this true of Alzheimer people? I can see the tracking part, but the development of reading body language is new to me.

November 2004
The quiet pleased her. I suspect within the head of an Alzheimer person, things get pretty confused. So at times, the quiet, stillness, is a relief where they can let the mind rest so much. Maybe that is why sleep takes on a bigger and bigger part of their lives.

January 2005
Alice questions herself, where does love reside? Head or heart? The importance is that it is the one thing you do not want to lose. If it is in the head, the disease will take it from you. In the heart, there is a chance it will be sheltered there. I suspect that that the person will always know she loved someone, just does not know who it is.

There is a yearning in Alice to be close to her husband, to have the time left. But her husband seems to be distancing himself from her. Couple of thoughts here.
  • Alice seems to be very cognizant of her memory lose and wants to make use of the time while she still has it. Is this common among Alzheimer people? Or is it more common that a person slowly, slip away from knowing relationships and the past without the self awareness?
  • John is frightened. I am not sure if he does not want to face the reality, is selfish, or needs to distance himself from what is going on. Maybe all thre are at work.

Strange the things being remembered and forgotten. You would think important things like your children you would remember and how to swirl a glass of wine, you would forget.

February 2005
Following multiple instructions, even simple ones are hard.

March 2005
Alice gives a speech to a large group of Alzheimer professionals. This is really an advocacy for Alzheimer's patients and their treatment. Diagnosis early, get on medicine to slow deterioration, and hope that a cure or better treatment comes along.  Also a plea to treat Alzheimer's patients with dignity.

My yesterday's are disappearing and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment.... just because I'll forget it some tomorrow doesn't mean that I didn't live every second of it today.
April 2005
There is a discussion about what to do as a family. John has been offered a prestigous position in New York-they live in Boston. Alice wants John to take sabbatical so they can spend the remaining time together. The grownup children want them to stay in Boston where there is a supportive family. This is the kind of discussion where there is no winners, or for that matter there does not need to be losers. But it really depends on priorities. How important is it for John to have this position? Do you take the stand that Alice will not remember the year off?  Are the children really up to caring for Alice? No good answers until you have lived it. Does Alice have a meaningful say in this?

By the way, do all decisions have to be rational? Can't they be based upon emotion?

June 2005
The language part of us starts to become confused as the disease goes on, making it hard to communicate.

Summer 2005
And then even your relatives become objects-the man who owns the house, which is John her husband. Also there is a tendency to revert back to childhood experiences and relations.

There are also times when the Alzheimer's person understands what they had and misses it. This may be the hardest to deal with for those close to the Alzheimer's person, but also when you can be close to them.

Drugs:
  • Aricept
  • Namenda



Evaluation:
The power and strength of this novel is not so much in Genova's ability to weave together prose, but in allowing into the world of an Alzheimer's victim. Genova writing draws you into Alice's world, having you understand the disorientation which Alzheimer's present. If you have a family member or friend who has Alzheimer's, read this book to get an emphatic view of that person's mind.


 
Notes from my book group:
It was noted that the family was not a family of faith, so they only had each other to rely on.


My questions:
This book is highly personal to me.

What is the appeal of the book Still Alice? Is it only for those who are dealing with Alzheimer's?

What are the first signs that Alice may be having memory problems? What does she do about it? How does she react? Later when the doctor states she has EOAD, what reactions does she have? Why does she not tell John about the diagnosis?

Why did Genova choose being a Harvard professor who specializes in the interactions of the mind with speech? Did her profession and success at it inhibit her from saying anything? How come her Harvard associates would not have picked up on her change in behavior?

Were you able to place yourself in the fog of dementia? What did it feel like to you? Why does Alice's doctor tells her, "You may not be the most reliable source of what's been going on" ? Is Still Alice a reliable journal of Alice's life?

Alice's fail safe solution was to have a checklist of important things to remember. If she was to forget these things, what was her action plan? How effective was it? How does it show the effects of Alzheimer's? Is this a viable solution to dealing with the disease? What is the a viable solution?

John does not accept the diagnosis of Early Onset Alzheimer Disease. Why would he not accept this? Why does he fidget with his wedding ring? Why does Alice taking her pills make him uncomfortable? What kind of a person does this make John? How did John's and Alice's relationship change over the course of the book? At the end of the book he is in New York with his career while his children are taking care of Alice. What are your thoughts on this arrangement?

Who were Alice's caregivers? How were they able to support Alice? What effects did it have on them? On her? What would a successful family caregiver look like for Alice? Did the documentaries which Lydia make work?

How do you honor a person like Alice's wishes? Do you follow them? Or overturn them?
Genetic testing is available for many diseases. Why would or wouldn't a person want to be tested? Why did Lydia not get tested? Have you or someone you know had genetic testing? How has that changed their outlook?

What makes the memories of her Mom and sister so potent to Alice? Why does she intermix those with reality? Is this just a matter of getting mixed up or is it something deeper?

What memory would you like to never forget? How would it change you if you could no longer remember it?

The title is Still Alice. Is she still Alice at the end of the book? What makes Alice Alice?




From Simon and Schuster:
1. When Alice becomes disoriented in Harvard Square, a place she's visited daily for twenty-five years, why doesn't she tell John? Is she too afraid to face a possible illness, worried about his possible reaction, or some other reason?
2. After first learning she has Alzheimer's disease, "the sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room" (pg. 70). What do you think of Alice's reaction to the diagnosis? Why does she disassociate herself to the extent that she feels she's having an out-of-body experience?
3. Do you find irony in the fact that Alice, a Harvard professor and researcher, suffers from a disease that causes her brain to atrophy? Why do you think the author, Lisa Genova, chose this profession? How does her past academic success affect Alice's ability, and her family's, to cope with Alzheimer's?
4. "He refused to watch her take her medication. He could be mid-sentence, mid-conversation, but if she got out her plastic, days-of-the-week pill container, he left the room" (pg. 89). Is John's reaction understandable? What might be the significance of him frequently fiddling with his wedding ring when Alice's health is discussed?
5. When Alice's three children, Anna, Tom and Lydia, find out they can be tested for the genetic mutation that causes Alzheimer's, only Lydia decides she doesn't want to know. Why does she decline? Would you want to know if you had the gene?
6. Why is her mother's butterfly necklace so important to Alice? Is it only because she misses her mother? Does Alice feel a connection to butterflies beyond the necklace?
7. Alice decides she wants to spend her remaining time with her family and her books. Considering her devotion and passion for her work, why doesn't her research make the list of priorities? Does Alice most identify herself as a mother, wife, or scholar?
8. Were you surprised at Alice's plan to overdose on sleeping pills once her disease progressed to an advanced stage? Is this decision in character? Why does she make this difficult choice? If they found out, would her family approve?
9. As the symptoms worsen, Alice begins to feel like she's living in one of Lydia's plays: "(Interior of Doctor's Office. The neurologist left the room. The husband spun his ring. The woman hoped for a cure.)" (pg. 141). Is this thought process a sign of the disease, or does pretending it's not happening to her make it easier for Alice to deal with reality?
10. Do Alice's relationships with her children differ? Why does she read Lydia's diary? And does Lydia decide to attend college only to honor her mother?
11. Alice's mother and sister died when she was only a freshman in college, and yet Alice has to keep reminding herself they're not about to walk through the door. As the symptoms worsen, why does Alice think more about her mother and sister? Is it because her older memories are more accessible, is she thinking of happier times, or is she worried about her own mortality?
12. Alice and the members of her support group, Mary, Cathy, and Dan, all discuss how their reputations suffered prior to their diagnoses because people thought they were being difficult or possibly had substance abuse problems. Is preserving their legacies one of the biggest obstacles to people suffering from Alzheimer's disease? What examples are there of people still respecting Alice's wishes, and at what times is she ignored?
13. "One last sabbatical year together. She wouldn't trade that in for anything. Apparently, he would" (pg. 223). Why does John decide to keep working? Is it fair for him to seek the job in New York considering Alice probably won't know her whereabouts by the time they move? Is he correct when he tells the children she would not want him to sacrifice his work?
14. Why does Lisa Genova choose to end the novel with John reading that Amylix, the medicine that Alice was taking, failed to stabilize Alzheimer's patients? Why does this news cause John to cry?
15. Alice's doctor tells her, "You may not be the most reliable source of what's been going on" (pg. 54). Yet, Lisa Genova chose to tell the story from Alice's point of view. As Alice's disease worsens, her perceptions indeed get less reliable. Why would the author choose to stay in Alice's perspective? What do we gain, and what do we lose?

Enhance Your Book Club:
1. If you'd like to learn more about Alzheimer's or help those suffering from the disease, please visit www.actionalz.org or www.alz.org.
2. The Harvard University setting plays an important role in Still Alice. If you live in the Cambridge area, hold your meeting in one of the Harvard Square cafŽs. If not, you can take a virtual tour of the university at: http://www.hno.harvard.edu/tour/guide.html
3. In order to help her mother, Lydia makes a documentary of the Howlands' lives. Make one of your own family and then share the videos with the group.
4. To learn more about Still Alice, please visit www.lisagenova.com.

From the Book Coaster's Blog:
Discussion Questions:
1. Still Alice is Lisa Genova’s debut novel. It has proven to be very successful, with a movie version currently in production. Originally the author struggled to find an agent or publisher due to the perceived lack of appeal of the subject matter of the book. Why do you think this book has found such universal appeal?
2.  Alice’s relationship with her husband and children changes over the course of the book. Were you surprised by John’s response to her disease? Why do you think he reacted the way he did? What changes did you notice in Alice’s relationship with her children?
3. Why do you think Alice didn’t tell John about her disorientation in Harvard Square? How do you think you would react if a similar situation happened to you?
4. Alice devices a set of questions that she must answer each day. Failure to answer the questions means that she must then follow her step by step suicide plan. What do you think of Alice’s suicide attempt? Do you think her family would have understood or approved?
5. Along with memory loss Alice’s experiences physical deterioration. What are some of the physical changes? and what is the impact of these changes to Alice and her family?
6. Alice’s attends a support group where the members discuss how their reputations suffered prior to their diagnoses. Do you think that preserving their legacies is one of the biggest concerns to people suffering from Alzheimer’s disease?
7. As the disease progresses Alice’s independence and ability to make decisions is reduced. What examples are there of people still respecting Alice’s wishes, and at what times is she ignored?
8. Each of Alice’s children have to decide if they will take the genetic test for the mutation that causes Alzheimer’s. Why do you think Lydia decides not to take it? Would you take the test?

From Mohawk Valley Library System:
Observations and Questions:
1. Now Still Alice is a best seller, but originally, no publisher wanted it and first-time novelist, Lisa Genova, could not even secure an agent to help her sell her book. The story was thought to be one to appeal only to those who have dear ones with Alzheimer’s Disease. Clearly, the appeal of this book is widespread. What aspects contribute to the book’s close-to-universal appeal?
2. Are the characters in Still Alice credible? Which ones support Alice? Which ones disappoint her? Where do John’s actions and responses fall? Are any of the characters less than believable? Why?
3. When Alice becomes disoriented in Harvard Square, a place she's visited daily for twenty-five years, why doesn't she tell John? Is she too afraid to face a possible illness, worried about his possible reaction, or some other reason?
4. After first learning she has Alzheimer's disease, "the sound of her name penetrated her every cell and seemed to scatter her molecules beyond the boundaries of her own skin. She watched herself from the far corner of the room" (pg. 70). What do you think of Alice's reaction to the diagnosis? Why does she disassociate herself to the extent that she feels she's having an out-of-body experience?
5. Is Alice’s speech to the convention chronologically out of place? At that point, does Alice really seem capable of composing and dramatically delivering this politically powerful speech?
6. Each of Alice’s children decides whether to take the genetic test. Would you?
7. Do you find irony in the fact that Alice, a Harvard professor and researcher, suffers from a disease that causes her brain to atrophy? Why do you think the author, Lisa Genova, chose this profession? How does her past academic success affect Alice's ability, and her family's, to cope with Alzheimer's?
8. Alice answers the same several questions each day. One day she cannot answer them and begins to follow the steps of her suicide plan. How do you view Alice’s attempt at suicide?
9. "He refused to watch her take her medication. He could be mid-sentence, mid-conversation, but if she got out her plastic, days-of-the-week pill container, he left the room" (pg. 89). Is John's reaction understandable? What might be the significance of him frequently fiddling with his wedding ring when Alice's health is discussed?
10. Why is her mother's butterfly necklace so important to Alice? Is it only because she misses her mother? Does Alice feel a connection to butterflies beyond the necklace?
11. Lydia is accepted at two colleges to study acting. It makes very little sense that anyone who is accepted at NYU would prefer Brandeis (although Brandeis is a great school in general). This flaw in the plot bothers me. Does it bother you? Or am I missing a subtle detail? Is Lydia sacrificing NYU for the sake of allowing her mother to stay where she can see her grandchildren?
12. In my experience with a friend who began showing signs of early-onset Alzheimer’s Disease in the early 1980s, the loss of physical coordination was the most visible sign. She was clumsy and tripped up on things. She couldn’t stuff envelopes and lick stamps without a great effort. How is Alice’s physical deterioration made known?
13. Alice's mother and sister died when she was only a freshman in college, and yet Alice has to keep reminding herself they're not about to walk through the door. As the symptoms worsen, why does Alice think more about her mother and sister? Is it because her older memories are more accessible, is she thinking of happier times, or is she worried about her own mortality?
14. "One last sabbatical year together. She wouldn't trade that in for anything. Apparently, he would" (pg. 223). Why does John decide to keep working? Is it fair for him to seek the job in New York considering Alice probably won't know her whereabouts by the time they move? Is he correct when he tells the children she would not want him to sacrifice his work?
15. Alice and the members of her support group, Mary, Cathy, and Dan, all discuss how their reputations suffered prior to their diagnoses because people thought they were being difficult or possibly had substance abuse problems. Is preserving their legacies one of the biggest obstacles to people suffering from Alzheimer's disease? What examples are there of people still respecting Alice's wishes, and at what times is she ignored?
16. How do you rate the ending of Still Alice? What other endings can you imagine?
17.

From Nicole Amsler's blog:
Do you know anyone who has suffered from Alzheimer’s? How did it affect their loved ones and you? How did it affect them?
What are the stages of grief family members and the patient must travel through when facing Alzheimer’s? (Five stages of grief: denial, anger, bargaining, depression, acceptance.) What stage did each family member reach? What about Alice? Can you get stuck in a phase, or repeat a phase?
To what extent are we made of our memories? 
What are some of your fondest memories? Do you have a memory you would like to completely erase from your memory? Do you think your personality/self would change if a bad memory was removed?
It is rare that an Alzheimer’s patient doesn’t consider suicide. Were you relieved she was thwarted or gladdened that Alice survived?
Do you empathize with the idea of controlling your own death, when faced with a debilitating disease such as Alzheimer’s? What about other diseases? What makes the difference for you? Where do you draw the line?
If you have children, your children often feel they have a different parent from their siblings. If you have children, due to different circumstances, how are you a different mother to each of your children?
Oldest memories are the last to go for those with dementia, along with scent. What scents bring back memories for you? What is your earliest memory?
John carries on without Alice, making decisions without her. Does this bother you or do you empathize?  
How would this story have changed if told from another perspective beside Alice’s?




Good Quotes:
  • First Line: Even then, more than a year earlier, there were neurons in her head, not far from her ears, that were being strangled to death, too quietly for her to hear them.
  • Last Line: You got it exactly right.
  •  


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