“Keeping” Christmas
Early this past December, President 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 universally 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 asked us to reach 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 often robs people 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 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 dragged from the attic may rouse a person with mid-stage Alzheimer’s to a string of heart-breaking 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 holiday 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? AndHow much can I afford to spend?
Of course it’s the not same for everyone living 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 too 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. The holidays can certainly be good and joyful, but they will inevitably be different and fraught with new difficulties, too.
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 encouraging 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.
I recently went through a horrible night with my father, yelling nonstop, convinced the house was on fire and overrun with strange people. That it was somehow my fault. He had no memory of it the next morning as we sipped coffee together, bleary eyed. I checked my emails later and found one from a friend: “Thinking of you as you continue to sort things out with your folks. They are so very fortunate to have you, but of course they don't realize it. I wish it weren't so stressful for you.” It didn’t take her long to write this message, but it warmed my heart like a soft old sweater. Make it a new year’s resolution to what you can, when you can. Even small things will make a difference.