I loved the book and I highly recommend it with the caveat that it is very difficult to read unemotionally. It is a subject all of us know about and all of us fear. We identify negatively with the plight of the main character since none of us want to go down her path. We find that we want to distance ourselves from it in the book and in our real day to day life. Like Alice, most of us would rather have a disease like Cancer which we can fight and which engenders support and encouragement than have Alzheimer’s which makes outcasts of us and engenders avoidance since it makes people uncomfortable to be around someone who is in a perpetual in and out state of confusion which continues to grow worse until all normal functioning ceases and the victim dies in a fetal position. Few people know where to look or how to respond to people with this disease. Although some medications slow the progress, there is no real treatment, no hope of a cure. Victims are isolated and lonely and cannot recreate their former existence nor create a new one.
The story’s narrator is Alice, ironically, a bright, successful Harvard professor of linguistics, who began to experience moments when her memory seemed to fail her as she misplaced things or became confused by ordinary tasks she used to do by rote or lost her command of language as words which always seemed to be on the tip of her tongue were never remembered and speeches she had given before suddenly had missing parts. As these moments became more frequent, she wonders if her problems stem from menopause, aging or something worse like a brain tumor. After extensive testing, it is determined that she has a genetic strain of Early Onset Alzheimer’s Disease which she can pass on to her descendants and they, in turn, can pass on to theirs. The question of whether or not to be tested is foremost in her children’s minds. Should they or shouldn’t they? What is to be gained or lost with the knowledge? Is it better or worse to know?
Coming to terms with the diagnosis of a disease which causes its victims to descend into a world of insanity, coupled with the isolation of rejection, was not easy. Alice rises to the task, well determined to live out her lucid days to the fullest. When, finally, she must retire from her job, the people around her, colleagues, family, students all react to her illness with shock and denial. While some automatically ignore her after they learn of her illness, some offer kindness and support. Most people treat Alzheimer’s victims as if they are not present, ignoring them and talking around them which Alice finds disheartening since she once had such a position of respect and was always included in conversations; her input was always sought after and valued. As she descends further into this world of madness, she is spared the humiliation of her behavior because she no longer cares about the reactions of others to her bizarre episodes of forgetfulness.
Alice continues to walk the thin line between being normal and being in the world of her memory loss and hallucinations. She has no idea when she will descend into the insane world of her imagination and lose all connection to reality or if the dementia will lift and allow her some brief period of remission. Sometimes she is fooled into thinking that she is okay, quite normal, actually, but then she relapses and knows she must face her decline. She has no one to turn to for advice. Although there are organizations for the caregivers whose burden is enormous and many are simply not up to the task, none exist for the victims. Alice organizes one herself, while she still has the mental capacity to create it and participate. This allows these victims to share their loneliness and suffering in a friendly environment.
Alice visits a nursing home to check out the Alzheimer’s unit. She finds there are far more women than men in the unit. (This fact made me wonder whether more women are diagnosed with it or do men find it too hard to care for their wives while women remain loyal and devoted to their husbands, keeping them at home. Could it also be that the wives outlive the men and have no one to care for them?) At the end of the tour, Alice decides this is not a place for her and vows to end it all before she reaches that level of mindlessness, if she can only recognize the time when it occurs.
Through Alice we discover that many of us are running so fast to achieve that we often don’t take the time to enjoy the simple things in life like ice cream cones and laughter. As the disease slows her down she begins to notice the small things that make her happy and hopes to live long enough to see her children achieve what makes them happy.
The contrast between Alice’s memory lapses and her husband John’s, highlights the difference between the normal memory loss of aging and the loss of purpose and direction produced by the dementia of Alzheimers. We experience the indignities of the disease as it is experienced by this bright and dignified character and begin to understand the needs of the victims as well as the caregivers.