I just finished reading – devouring, actually – the novel STiLL ALiCE by Lisa Genova. It is the story, told from Alice’s point of view, of her descent into Early Onset Alzheimer’s Disease.
I don’t remember being this affected by a book in a very long time. I fear few things as much as I fear losing myself. This particular disease is a very scary bogeyman in my closet. Thankfully, no one in my family has it, so I am spared the genetic haunts.
But here’s the thing that has me in its grip right now. In the story, before she is too far gone, Alice sets up an “out” for herself and a way to remember to use it. Her reminding method ultimately fails, but she stumbles across the letter she wrote to herself and goes to carry out the plan. What’s clear to the reader is that her husband John found the “out” and disposed of it at some prior point in time. Alice is too far gone to care or even remember that she found the letter or tried to carry out the plan.
And that’s not even the bitter part for me. The bitter part is that after he eliminates her escape plan, he ultimately can’t bear to stick around and watch the end. I am struggling to find sympathy in me for his character when I feel he has betrayed her – that he exposed himself as a coward and hypocrite. Not to mention being unwilling to honor her wishes, expressed when she was still of sound mind. He makes some comments to their children about Alice’s “unilateral decision” that didn’t get carried out, but he made one of his own without talking to the rest of the family.
What’s right? How do we come to grips with these most painful of decisions? Is it possible to make good decisions about when suicide will be the good option? Is loss of self sufficient grounds? Was John right to do what he did? How can we care for our loved ones in the face of this kind of pain? As an aside, I have NOT had to deal with any sort of dementia in my immediate family. At least not yet.After reading this book, I sort of think watching a loved one go into that dark night would be worse than going there myself.
If you have read this book, I welcome your comments about these and any other issues raised in it.