In the old days, I thought I’d be devastated when dementia stole my name from mom’s memory. I believed that once my name disappeared, we’d be in dark, ominous territory. The truth is, many other things were far more painful than the day she first lost track of who I was.
Perhaps it was because my name stayed in her mental directory long after the words for shoes, comb, and fork had disappeared. She could still identify me six years past the onset of dementia. It’s also possible that since the emotional value of our relationship was never erased by the disease, the name business began to seem less dire.
The PBS program, The Forgetting, reminds caregivers that “recognition is more than a name.” It “isn’t a measurement of how important you are to the person” — it’s simply a function of which neurons still work. While I’m a bit sad that she forgot the name she chose so carefully in the months before I was born, she still seems to absorb the essence of me in a very comforting way. Given the choice of being known by a name — which is all that most people will recall about us — or being recognized for your character and how you make someone feel, I guess I prefer the latter. It’s a sign of deep connection and real love.
People probably think I’m nuts when I laugh about how my mom loves to walk with my sister and me, not realizing we are her grown children. She’s like a drunken sailor who can’t say who’s holding her hand, but feels sure that the odds of having a good time increase in our presence. That may sound crude, but I feel I must be grateful for small things that keep joy in our relationship. As the authors of The 36 Hour Day point out, “a dementing illness does not suddenly end a person’s capacity to experience love or joy, nor does it end their ability to laugh”.
It’s one of the few truths of dementia that actually add a bit of sweetness to life.
I’m not young, but there’s a happy kid inside me. The color and noise of fireworks still brings thrills. Mom could not attend the 4th of July spectacle this year. But the rockets’ red glare made me oddly happy about past actions we took to help Mom enjoy life — despite dementia.
It was only two years ago that my sister and I took great pains to haul Mom to the Stroudsburg fireworks. We’d never seen them in that town before and we wanted to arrive early. So we decided to skip the backyard barbecue idea and let a French restaurant serve Mom her favorite holiday food — salmon. It doesn’t sound very patriotic, but it made her awfully happy.
In those days, she was still walking well. We helped her along while dragging lawn chairs through crowds of restless kids and tired parents. I’m not sure she even realized why we were marching across the town. But she did it with a smile.
Although Mom still understood plenty, we were just beginning to comprehend how this disease would alter her and what that would mean to our family. Tough as it was to address her growing needs, I could see that the future would hold even more hurdles that could limit her social activity. The Stroudsburg fireworks were an early shot in a long campaign to take Mom everywhere, protect her remaining skills, and fill ourselves with memories of her doing things she loved.
Events like these were worth every bit of stress, sweat, and aggravation. It was worth choking on the second hand smoke of careless teenagers and walking for an eternity to get a good viewing spot. Until the first giant bloom of color spread across the sky, I don’t think she knew how our fireworks extravaganza would end. But after one radiant flower exploded she was delighted as a joyful kid by the sparkles above us.
These memories illustrate a point that’s key for families just entering the labyrinth of this disease. Don’t let your loved one’s awkward mobility — or your private worry about reactions from strangers — keep you from offering them every kind of fun they can manage. The number of good family memories you can store up is limited only by your determination to make them happen. Time moves faster than you can imagine from where you sit today. Plan, sweat, slog, and enjoy all that’s good while it’s still within your power.