I felt like I was straddling two worlds – the world of my grief, the sorrow that felt like a twisted cord inside me – and the world I was now piecing together, my own map of how to reconnect with my father, how to be there for him even when he seemed lost in shadow. There was no one to tell me I was wrong or misguided. The Internet wasn’t as ubiquitous as it is now. In 1994, I didn’t even have web access, so searching for help online never popped into my head as an option. And doctors could offer no emotional help.
Things have changed on that front, but there is still a feeling of loneliness when the disease strikes. Strangers often approach me, confide intimate details about what they are going through with a parent who has Alzheimer’s. People post things on Facebook, trusting and hoping that the response they get will help them.
Early in my father’s disease, I caught myself trying not to laugh when he said something inadvertently funny. But my instinct told me that was silly – I wasn’t laughing at him, after all. And the sound of laughter made him brighten and smile. Occasionally, laughter would somehow inspire him to say something even funnier.
When the inevitable day came that he no longer recognized me as his daughter, I grabbed on tight to the faith that his soul remembered; it was just his brain that had forgotten. And then I looked at how sweet he was being with me – some woman who came by frequently to see him but whom he didn’t know was related to him. I told myself to cherish what that revealed about his character and his kindness. Looking at it that way kept me calm and focused while I was with him. But when I left my parents’ house, I pulled off to the side of the road and sat in my car sobbing like a baby.
My father “plateaued” for a long time – a few years, I think. He would spend a few hours a day in his office, mostly greeting visitors who had made appointments to see him. We realized that it helped him to have a printed schedule in front of him – something he’d had for years as governor and then president. Each morning he’d be given that printed sheet and he held onto it all day long.
One day, I came to see him and was told he was in the parking garage, in the back seat of the Secret Service car that always drove him, and he wouldn’t get out. I went down there and he was upset and agitated. He seemed to think there was a serious risk to getting out of the car. I tried to talk to him and he snapped at me, clearly annoyed by my inability to understand him.
Suddenly I felt like a kid who’d screwed up, who’d angered the parent who hardly ever showed anger. I pushed aside the feeling and suggested we drive around the block a couple of times.
It worked. By the time we got back, he’d forgotten whatever had made him upset. A person with Alzheimer’s lives in the moment; it’s a rhythm change that most of us find difficult to adjust to. But it has its benefits. I realized I didn’t need to sink into the feeling of being a kid who had misbehaved. At that point I was taking on an odd parental role, employing diversion tactics that work with fussy toddlers as well as they do on those with dementia.
On another day, I arrived at my parents’ home to find my father poking at his eyes, believing he had his contact lenses in. He didn’t. My mother was in a futile quest to stop him. I removed one of my own lenses, showed it to him, put it back in my eye, trying to prove to him that he wasn’t wearing lenses anymore. It didn’t work. Finally, we settled on walking him around the house. Once again, changing the scenery and his focus.
Dealing with Alzheimer’s is a series of small lessons, with huge gaping emotions beneath. I led my father like a child, the way he once led me.