Cognitive. Oh, I knew that word. They use it a lot in Alzheimer’s Disease books. A few more lines and I knew they were talking about AD. When they paused, I said, “My husband has Alzheimer’s, too.” It was strange to hear myself say it out loud. Mostly we weren’t telling people yet.
Perhaps I was spared caretaking in my earlier years because I was destined to do it in the later years. I’m like the last runner in the relay race, the one who takes the baton home.
All my adult life, other women gathered to talk about their children. Having no offspring, I could only offer a few memories from my own youth or a borrowed observation about my stepchildren and slink off to hang out with the men. But when I was 52, I discovered a whole new cluster of women with whom I shared a genuine sisterhood. We could talk for hours about our joys and frustrations, offering helpful hints, trading visits over coffee.
I had never realized this group existed, and I would never have willingly joined. I’m talking about the sisterhood of Alzheimer’s wives, women who find themselves mothering the men they had hoped would take of them. Whatever their relationship before, now they must watch their husbands as constantly as they would a child. Turn away for a moment, and he might hurt himself or wander off.
At first, it was a matter of filling in missing words and prompting him to get dressed, take his pills, and go to his appointments. His wife served as navigator on the road and interpreter at the movies. Later she would scold him when he turned on the stove. “No! Hot!” she said. And still later, she would feed him, diaper him, and clean him like a baby. Where once there were two potential parents in the house, now there was only one.
I had been exchanging notes on the Alzheimer’s online message board, becoming friends with women nicknamed Emmie, Twiggy, Fortune Cookie and Sooze. We had talked about doctors, diapers, depression and more. But sending e-mail messages is different from meeting face to face, as I discovered one Sunday shortly after Fred’s diagnosis.
We three authors were sitting in the library at the historical museum selling our books when Suzy, the take-charge 50-something beside me, asked Carol, fuzzy-haired with a wide mouth and deep dimples, if her husband’s “cognitive” powers were still working.
Well. I was in. Not only did Carol’s husband have it, just a little farther along than Fred, but Suzy’s mom had it, too. We talked about lawyers and homecare and tips for getting our loved ones up and dressed and out the door. Suzy tsk-tsked over how young my husband was. He seemed handsome and loving and helpful that day–until he came in to report that he had locked his keys in the truck.
One in 10 people over the age of 65 had Alzheimer’s Disease. The numbers were growing as the baby boomers approached senior citizen age. In every gathering, someone’s mother, father, brother or husband had AD. At last I belonged.
It didn’t matter how old I was or whether I had ever given birth. I was welcomed into the caregivers’ club. We all loved someone who was not what he or she used to be, and we were not giving up on them, despite their imperfections, their sometimes bratty behavior and their constant demands. Just like mothers with their children, we loved them, no matter what.