It’s winter. A butterfly just fluttered past my window. Or so I thought, for one illogical instant, until I realized it was a yellow leaf. Just a little moment of delightful poetry—or creeping dementia. That’s the kind of gallows humor that goes through my mind on any given morning. And I know I’m not alone. A recent poll showed that two thirds of the population of the United States has some personal connection—via a family member, friend or workmate—with Alzheimer’s disease or other memory loss problems. Alzheimer’s is, and has been for many years, our most feared disease, and rightly so. And this time of year, as many of us see family members we haven’t seen in a while, that fear runs high.
Maybe you were one of the millions of Americans who noticed, this Thanksgiving Day, that your grandmother or your mother was off her game. Forgot to time the turkey; put salt in the pumpkin pie. Maybe you’d been warned, before you got home, that your beloved uncle wasn’t quite himself anymore. That his wife, your aunt, was tense and tired. Maybe you’re currently rethinking your commitment to see them all again at Christmas or Hanukah. Maybe, like me, you’re missing the one who’s already gone: in my case, my mother, who died before her time of an illness I once thought only very old people got.
Alzheimer’s disease and other forms of dementia can cast a long shadow over the holidays. I believe it’s natural and healthy to feel all kinds of ways about it: surprised, sad, angry, uncomfortable. Many people find themselves fighting (or giving in) to the urge to flee. Disbelief is common too: “Mom is fine, she’s just stressed out!”
One of the toughest truths about Alzheimer’s is that, whether it’s short and steep or long and gradual, it is an inexorable, unstoppable downward path. We Americans like to fix things. We have a very hard time accepting that the best we can do, medically, for a person with Alzheimer’s is offer a pill that might—key word, might—slow the progression of the illness.
But there are many things we can do to make it more bearable: for ourselves and for the person we love who is living with this illness.
First, and this is really my best and only holiday advice: find joy in the moment, however unmoored from reality that moment seems to be. Do not ask a person with Alzheimer’s to “try” to remember what day it is, why he’s there, whose house it is, whose kids these are and why it’s not time to go home yet. Do not correct or scold or worry or be embarrassed. Encourage the telling and retelling of old family stories: what better time to dwell in the past than during the holidays? Get out the oldest photo albums. Put on music from many decades ago. Serve old-fashioned, familiar foods, but only the ones everyone actually likes.
Second, after it’s over: you’re home now, you’re busy, you feel utterly helpless about your loved one’s dementia. What can you do? Here’s what: volunteer for research. Alzheimer’s studies need control subjects too. They need people with healthy brains who are willing to take memory tests, be scanned, give blood and cerebrospinal fluid for the cause. A few hours out of your life, a tablespoon or two of fluid extracted, and with one spinal tap you could be contributing to as many as 50 different studies.
You can also advocate for the cause. President Obama signed into law the National Alzheimer’s Project Act in 2010. Now we need to get it funded. We need to persuade lawmakers that as baby boomers age, the cost of NOT finding ways to prevent and treat Alzheimer’s disease will be crushing.
When someone you care about is suffering, doing something is the best way to treat your own symptoms: your anger, frustration, fear. It won’t be a cure-all, but it’ll help. Trust me. I’ve been there. Contact the Alzheimer’s Association: they’ll get you started.
I loved teaching Intro to Memoir Writing so much I’m teaching it again this winter at SCCC. Starts Jan 2. Six Wednesday nights.
Our films, The Church on Dauphine Street, 30 Frames a Second: The WTO in Seattle and Quick Brown Fox: an Alzheimer’s Story are now available on Hulu, Amazon and other digital sites.
Radio lovers: you can hear the Restless Nest commentaries every Tuesday at 7:50 a.m., Thursdays at 4:54 p.m. and Fridays at 4:55 p.m. on KBCS, streaming online at kbcs.fm and on the air at 91.3 in the Seattle area. Podcasts available.
Here’s nest artist Kim Groff-Harrington’s website.
I loved this–both touching and practical. And the descriptions of our typical reactions is so, so accurate.