There are many days I ask, “Why me?” “Why us?”
Why do both of my parents have Alzheimer’s? Are we being punished for something? Did their environment cause this wicked disease? Will my sister and I get it too?
Life would be so much simpler if only one of my parents were sick. So much simpler.
For instance, we wouldn’t have to go through the same things twice. It was awful, truly awful, when Mama started Sundowners, hating for twilight to come, becoming edgy and scared when the sun started to set, panicking to get to the ever-elusive “home.” It was a relief when all of that ended, although it was replaced with staring into space, garbled speech and loss of even more memory and cognitive function.
Now it’s Daddy who starts to get panicky in the late afternoon. Asking if it’s getting dark, wondering where he’ll sleep tonight, not believing us when we tell him he will sleep with Mama in his own bed in his own bedroom, just as he’s done for 50 years. “Are you sure?” he asks, in a loud panicked tone. “Positive,” I say.
So I offer my hand to help him up, so I can show him his bedroom, just as I did with Mama a year or two ago. By the time he takes my hand, he’s fussing. “Where are you taking me? I can’t get up.” He’s already forgotten the bedroom fear and moved on to something else.
It would be nice if one of my parents could help me make decisions _ big decisions. Should we change Daddy’s medicine to help him with the anxiety? Is it worth the risk of the side effects that usually send him reeling? Should we cash in the life insurance policy? Is it time to move to a nursing home? Should we go ahead and do some repair work on the house while there’s a little money left?
Before Daddy got worse less than two years back, he was able to look after Mama, whose symptoms started more than 10 years ago. We didn’t need 24-hour care and the crippling cost of round-the-clock sitters. But we do now. Someone has to be with them every minute. Oh how I wish they could live by themselves and do for themselves and make their daily treks around the county. I wish they could help me pay the bills, do the grocery shopping, pick up prescriptions. Those days are over, and I feel very much on my own in the day-to-day decision-making.
But at least they have each other. These two soul mates and sweethearts still hold hands while they’re sitting on the sofa. Mama is constantly asking me if L.H is OK and doesn’t want to leave him. And just last week, when it came time to take her to her weekly hair appointment, we had to coax Daddy into agreeing to let her go with me. I thought he was going to cry when we put on her jacket and started to walk from the room. I offered to cancel the appointment, but Mama got his “permission” and we headed out for her weekly outing.
But for all their love, they still aggravate each other. While Daddy tries to nap on the couch after yet another sleepless night, Mama constantly nudges him to ask him questions in garbled sentences that no one understands, especially my groggy Daddy. So when he doesn’t answer her, Mama gets mad and stomps her foot and stares straight ahead until Daddy falls asleep again, then she nudges him and wakes him again. “Are you alright?” she asks.
And when Daddy starts his evening hollering and crying for “Help!” in a voice that can raise the dead, Mama cringes. You can see the fright and the frustration and the total exhaustion in her eyes. After an hour or two of his yelling, Mama often starts to cry.
Saturday night, she told me she just can’t stand it any longer.
I know the feeling.