"Keeping" Alzheimer's

First published on The Huffington Post , January 09, 2017

At the beginning of the 2016 holiday season, Barrack Obama gave his final remarks at a White House Christmas tree lighting ceremony. He spoke about the commonality in the Christmas story message, which asks each of us, whatever views we profess, to be our brother’s and sister’s keeper. “Keeper” has come to mean a person willing to share the burden of another’s hardship, the term’s first Biblical use as a self-defensive plea notwithstanding.

Obama encouraged reaching out to people who are struggling in some significant way—the sick and impoverished, refugees trying to establish themselves in an unfamiliar country, military families separated by distance and danger. But there’s another group we need to remember in particular. Over five million have Alzheimer’s disease; 15.9 million are family caregivers. More than tangible gifts, they need time.

Alzheimer’s disease robs its sufferers of the ability to take joy in holiday traditions. The world becomes a confusing place, where one’s own reflection in the mirror can be a startling encounter with a stranger and the television is a box that ushers unwelcome visitors into the family room. The daily routes and routines are a series of inordinate challenges, made more complex during the holiday season by the imposition of twinkling lights strung all around, wreathes and bows, inflatable snowmen and the myriad versions of Santa popping up everywhere. Boxes of decorations, if there’s even time to decorate, may rouse a person with mid-stage Alzheimer’s to a string of heartbreaking questions—What are these? Where do they go? What’s a donkey doing beside a baby?

Caregivers constantly juggle such questions in addition to their own rational worries, unspoken and unimaginable by those who’ve never cared 24/7 for an adult with a progressive brain disorder: Will she be okay by herself if I go out for a few hours? Will we make it to the family dinner, or will he get fretful and want to leave as soon as we arrive? Will adult daycare have regular hours? These are very different questions than How will I get everything done in time? And How much can I afford to spend?

Of course it’s not the same for everyone with dementia. You’ve perhaps heard the well-worn adage If you’ve seen one person with Alzheimer’s, you’ve seen one person with Alzheimer’s, meaning that we cannot apply many sweeping generalizations to a situation involving the brain. Unlike any other organ in the human body, the brain can be compared legitimately to a snowflake in its uniqueness, complexity and fragility. Holidays can certainly be good and joyful, but they will inevitably be different and fraught with new difficulties, too.

"Calendar" by Dafne Cholet, via Flickr, Creative Commons verified 01/10/2017

"Calendar" by Dafne Cholet, via Flickr, Creative Commons verified 01/10/2017

Is there a caregiver in your midst, caring for a loved one with Alzheimer’s disease or another form of dementia? They need a little of your time. Can you take over dinner? Be a companion at the house while the caregiver goes out for an evening? Run some errands? Or just listen to the frustration and loss. It’s not happy and uplifting. But the kind of happiness that lights your heart and makes your own face in a mirror easy to like is not about a transient season of parties and gifts. It’s about the kind of compassion that overrides our busyness and connects us to one another as a purpose of life itself.

Obama closed by urging us—as a “big-hearted, hopeful and resilient” people—to have each other’s backs and move forward “knowing we are all in this together.” Given the prevalence of Alzheimer’s and predictions of its increase, we are all, truly, in this together. Throughout the coming year, “keep” a caregiver and his or her loved one, both facing a disease that takes away the stories and traditions.

Make it a New Year’s resolution to do what you can, when you can for friends coping with dementia. Even small things will make a difference.