We have been taught to dread death, as if it were the end of the show. It won’t happen anymore. And therefore to be afraid of all the things that might bring about death; pain, sickness, suffering. And if you don’t know you see, if you are not vividly aware of the fact that you are, basically the works, you have no real joy in life… Being a stranger in the earth. A momentary flash of consciousness between two eternal blacknesses.
- Alan Watts
My grandfather, who died in the early 2000’s, had Alzheimer’s disease. Although I was young at the time, I still have a few vivid memories of the late stages of the disease, and as someone who’s family was deeply affected by the harsh reality of the disease, Still Alice immediately caught my attention.
The book follows the progression of early onset Alzheimer’s through the eyes of a high achieving Harvard psychology professor. I was skeptical at first of how well Genova would be able to portray the progression of the disease in the first person, but was continually impressed with the author’s portrayal (spoilers below, continue at your own risk).
One of my favorite, albeit heartbreaking, themes of the book is the ‘butterfly’ test that the main character, Alice, sets up for herself when she is initially diagnosed with the disease. She puts into her Blackberry the following questions:
- What month is it?
- Where do you live?
- Where is your office?
- When is Anne’s birthday?
- How many children do you have?
If she can’t answer these questions, the note instructs her to go to her computer and open a specific file. Inside that file are instructions on how to commit suicide, with her past self compassionately urging her mentally broken self to follow through with the plan.
It’s hard not to root for Alice in her quest to commit suicide. The reasons she initially creates the note are clear to her high achieving self. She wants to save her family the burden of care taking, and doesn’t want her family see her decline into a shell of her former self. She doesn’t want to forget who her children are, or to hurt her family by not recognizing them. She’s fearful of losing a grip on her life’s work as a psychologist. She’s afraid of losing the love of her life, her husband John, along with all the memories they share.
And yet. Even as the answer to the question for ‘where is your office’ turns from a specific address into a simple ‘Harvard’, she can still find joy in small things. The problem lies in knowing how much she’s lost, both within her own internal dialogue, and with the people closest to her. That’s the real gnarl of the disease, the fact that relative to their previous lives, Alzheimer’s patients appear wretched. It’s always a conversation about how far they’ve fallen, instead of cherishing them as they still exist.
In college I wrote a research based thesis on the ethics of lying to patients with Alzheimer’s and dementia. The crux of my argument was that we should be creating care environments that champion the current well-being of the patient, with no regard to their former state of being. A tough job for family members, but a sentiment I still believe in.
For example, there is a scene in which Alice believes her sister is still alive. Her oldest daughter reminds her that her sister and mother both died while Alice was in college. The pain and loss Alice feels is completely fresh, as if it’s just happened. And to her mentally impaired state, it just did. This scene only happens once in the book, but with real patients this is never true. They often ask the same questions over and over again, and experience the pain of loss over and over again as their caretakers attempt to ram the truth down their throats. As a loved one, the initial reaction is to always tell the truth, in an attempt to ‘fight’ the disease. But there is no winning. What then, is the best choice?
Lydia, the youngest actor/rebel child of Alice, exemplifies my take on the subject beautifully. After her mother sees Lydia perform in the play, Alice doesn’t recognize her at all. Alice compliments her, and then asks her why she’s only staying on for the summer and when she’ll be back to perform. Tearfully, Lydia informs her that she’ll be back to see her family, without any harsh reminders that she’s her daughter. Lydia is optimizing her talks with Alice to maximize Alice’s feelings of positivity, rather than attempting to make someone ‘remember’ something they never will.
Some people, like John (the husband), never accept this strategy. Lying to patients is giving up. Unfortunately, you can’t beat it (yet), and that’s just the reality of degenerative cognitive diseases. Fighting diseases are not always about winning or losing, sometimes it’s about carving out as much happiness as you can without regard to anything else. A z-axis on the spectrum of stopping the inevitable march of Alzheimer’s.
Is assisted suicide an option for these diseases? Certainly, and one I would heavily consider if I was diagnosed with such a disease. Losing everything that you hold dear, everything that creates your identity, is nothing short of life shattering. It calls into question deep philosophical topics about what makes us ourselves, and what the bonds we have with our loved ones really are. A one way journey into a new identity without the trappings of ‘normal’ life. The ultimate answer to navigating any disease is a personal decision. But I hope I can have more open conversations than Alice and her husband did if the diagnosis ever rears it’s head in my own family.