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.
The story says that Noah summoned creatures two by two. He knew the world could only be remade with the help of couples. In dementia care settings, however, we note the relative absence of men. There are, of course, dedicated men who quietly care for wives and mothers with the disease. But male patients or professional caregivers are vastly outnumbered by women. This makes the contributions of men even more significant.
It takes two
Unfortunately, stress shortens the lives of many men before they reach the age when dementia rates skyrocket. My dad passed away 10 years before my mom ever showed symptoms of the disease. In the various activity programs my mom has attended, male participants are outnumbered by at least 3 to 1.
Men who become caregivers for a loved one have a more difficult time getting assistance outside the family. Most caregiver support groups are dominated by women. Men may be reluctant to share secret griefs in a forum where they are outnumbered. But I have seen some brave guys talk about their struggles to carry out tasks they never dreamed they’d be doing. Father’s Day is a perfect time to thank them and recognize what their contributions mean to the family.
Last month, my boyfriend went with me to my mom’s afternoon activity group. He was treated like a rock star. Although he is tall and strong, I think he would have gotten a hero’s welcome even if he was a pipsqueak. One of the women in the program walked up to him and said, ‘I like, I like.’ It was the first time I ever heard her speak. She couldn’t take her eyes off him.
My sweetheart says he’d be a mess if one of his parents got dementia. He doesn’t think he has the fortitude to care for someone with the disease. But like a lot of men, I think he has a hidden reservoir of emotional strength that would quickly surface if he needed to care for his mom or dad. None of us really expect to find ourselves in the caregiving role. It just happens, and then you try to rise to the occasion. Gratitude is due to the rare and special men who discovered their care was indispensable. Your loved ones can never thank you enough.