Still Alice

I am of the belief that if an ending is good, it’ll still be good even if I know it in advance. With that reasoning, I spoil things for myself – I look up the endings of my favorite video games, I beg my husband to tell me how movies are going to turn out, I read book jackets and reviews desperately for clues as to how a story is going to end. 

Still Alice is one of the only stories I’ve read where I’ve been disappointed that I knew the ending in advance.  This story, that of Alice Howland, a Harvard professor who develops early-onset Alzheimer’s disease, is incredible; I read it in three days, devouring more than two thirds of it in one morning.  In fact, I unexpectedly burst into tears trying to tell my husband what it was about.  This reaction came about halfway through the book, and even though I knew from the book jacket that Alice had dementia, I still couldn’t distance myself from it. 

At the young age of 25, I don’t deal with the health issues of the elderly in basically any capacity.  I personally have very few health issues, and my parents have very few as well.  My husband has none, and neither do his parents.  Our parents are starting to get older, as they are all in their mid-fifties or beyond, but they are decades from elderly.  Most of my husband and I’s collective grandparents are dead; his paternal grandmother passed away most recently in May 2014, and my remaining grandmother is alive and kicking at 94 next week.  Everyone else has passed away due to variety of health issues.

But two of our grandparents, his paternal grandmother and my maternal grandfather, suffered from Alzheimer’s disease.  Both were very progressed when they passed, and both deaths were very much expected. 

I never knew what Alzheimer’s was really like until I opened this book.  The horror of it, the loss of self, is what scares me the most; I wonder how our grandparents experienced it, if they felt themselves slipping away like Alice does in this novel.  It is a horror I can only imagine, and I desperately hope I will never experience it. 

Alice is diagnosed when she is only 50, a very early-onset case; with both sets of parents creeping toward 60, slowly, I am hopeful now that none of them will develop it.  I had never considered it before three days ago, just as Alice had never once considered it in her life. This is what the book jacket spoils for this novel: the beginning of the book, as Alice starts to descend into the disease but before her diagnosis, I as the reader already knew where it was headed.  I knew her diagnosis before she did, and so some of the fear is lost.  If I hadn’t known, if I had been reading along smoothly just as Alice is living, and that bomb was suddenly dropped, the only thing to tie those symptoms together, I would have been blown away. 

As it was, the book is still emotionally destructive.  Each time she got lost, or forgot something small, I cringed for her, just as her family members cringe.  But I also started to see my own family members in her; I remember when a great-aunt developed Alzheimer’s, and while she was still alive, her husband passed away.  I remember my mother telling her that her husband had died, remember watching her grief, only to see that next time we visited, she had forgotten.  I remember the decision to not tell her anymore, how the grief was fresh every time, much like Alice must re-live her mother’s and sister’s deaths 30 years earlier fresh when her daughter mentions it offhandedly.  When she starts to forget her children’s names, when she has to ask if they are married or have children because her brain has failed her, I remember watching my grandfather ask my mom the same questions, watching my mom try to put away her own grief to help him place her again in his life. I remember conversations with my husband’s father, him trying to pass of his own mother’s dementia with a casual joke, while my mother-in-law would counsel us quietly, when he was out of the room, over how tough it really was for him to watch his mother forget him, forget her life.  By the end, I started to wonder how much I was crying for Alice’s loss of self, her husband John’s loss of a wife and friend, versus how much I was crying for my own family. 

When Alice is diagnosed, she develops a test for herself: she will ask herself several basic questions about her life – where she lives and works, how many children she has, etc – and when she can no longer answer them, she will end her life on her own terms.  She writes herself a letter of instruction, saved on her computer for her future self.  As the novel progresses, these questions reappear, and the reader can carefully gauge just how fully the disease has ravaged her brain.  Near the end, there’s a scene where her husband asks her these same questions, none of which she can answer anymore.  She has no memory of this letter to herself, no memory that her earlier self did not want to go on living if she lost that much of herself.  It’s clear that her husband found this letter to herself but has no stomach, even in the midst of his own struggle with her disease, to see her suicide through; he is trying to be supportive, trying to jog that memory so Alice’s personality and desires can shine through again, but he cannot bring himself to do it. 

At 25, I don’t think about my elderly years very often.  I think about retirement, sure, but that’s about it.  When confronted with nursing homes and their depressed occupants (who perhaps only seem depressed to me, as a young outsider), I say what so many others say: That will never be me. And like so many others, I instead express the desire to end my life on my terms instead of forfeiting control to the ravages of age.  I’ve indeed had conversations with my father and in-laws before, where they’ve expressed both an explicit forbidding of putting them into a nurse home and a wish for us: if they cannot do it themselves, we should put a pillow over their heads and let them die. 

I never know if I could do this.  I imagine that if I had the presence of mind, I could probably bring myself to swallow a lot of pills and drift off instead of submitting to the incapacity or dependence of a home.  But I don’t know if I could do that for my family; I could guard the door, I know that, but I don’t think I could bring myself to end it for them.  I think I would be like John in this book: supportive, but still clinging to the life that I remember with them, still too attached and unable to let go to do it myself.  In a way, I almost feel bad that I couldn’t do that for my family.  I can, again, only desperately hope that I am never faced with that reality. 

This is an incredibly novel.  It’s hard to read, painful in the most real sense, and full of the awful reality of what could be, if the stars are so poorly aligned.  The reality of Alzheimer’s is a horrific one, but also an important one to recognize; anything that takes away someone’s humanity must be dealt with and cured, and  we as the generation of the future must be prepared to undertake that task.  If you have ever wondered, if you have family members who have or might experience this reality, if you are part of our collective humanity, read this book.  

Visit the Alzheimer's Association to learn more or donate to research for a cure at http://www.alz.org/