I finished reading Still Alice by Lisa Genova. Though it is a work of fiction, it nevertheless reflects the lives and heartaches of countless families around the world.
The book affected me profoundly. For those of us who work with individuals with dementia, it brought to mind patients and their caregivers, coworkers and long-term care facilities. I’ve walked with countless families as they grieve the gradual unraveling of memory and relationship, of control, of function and purpose.
It also reminded me of the power of love, dedication and compassionate care that I see poured into the lives of Alzheimer’s patients. Families and friends shift work hours to be with those they love. They try to make sense of the confusion and frustration. They preserve the memories and joys. They pay for extra caregivers. They cry, bargain and try to reason with God.
In the novel, the main character, Dr. Alice Howland, is a cognitive psychology professor at Harvard. She realizes because of her training and self-awareness that something is wrong, and initiates the first call to a neurologist (not the norm, by the way). As events unfold, her husband and children find their own ways to accept and process her diagnosis, and to make decisions about her care.
Early in her diagnosis, Alice went to speak at a conference and share the perspective of an Alzheimer’s patient. This speech was, for me, among the most profound writing in the book. She challenged the audience to help individuals with dementia “live better with dementia.”
My yesterdays are disappearing, and my tomorrows are uncertain, so what do I live for? I live for each day. I live in the moment. Some tomorrow soon, I’ll forget that I stood before you and gave this speech. But just because I’ll forget it some tomorrow doesn’t mean that I didn’t live every second of it today. I will forget today, but that doesn’t mean that today didn’t matter.
Such true, clear words to caregivers and their support system.
As a chaplain, I see patients every day who have dementia. I hug their family members. I offer prayers for their comfort and to ease their worries. I celebrate the bits of personality and humor that pop through the tangles in their brain. I show them pictures of family and friends. I look for those bright spots of Hope.
When I forget things, like where I left my cell phone (yeah that did just happen!) or can’t find my car keys, I am brought up short. Am I getting dementia? I give myself a quick MMSE (Mini-Mental State Exam) and relax.
What Still Alice provided me, most of all, was a reminder that the patient’s perspective must not be ignored or glossed over. I can’t assume “they don’t know what’s going on” because, on some level, they still do. I am more devoted than ever to honoring that perspective, and try to actively bring it into the conversation of the interdisciplinary team.
Beyond condescension, individuals with Alzheimer’s need to know they are “still” who they were before their memory faded. Still parents. Still friends. Still professionals. Still funny. Still… LOVED.
That’s the most important task of all.
Still Alice by Lisa Genova. Published by Gallery Books, 2009. ISBN-10: 1501106422
P.S. Since you are taking the time to read my blog, I want to make a special request of you. I will be walking in the DC area fundraiser for the Alzheimer’s Association, the Walk to End Alzheimer’s in October. I have a fundraising page and would love your support! As I write this, I’m already 25% of the way to my goal! Click on this link to support my fundraising efforts. Thanks!