“Be a little less there,” my daughter said to me recently. She’s 11, but more like a teen in feeling the constraint of my love.
“You know when people disappear in the movies?” she asked. “They get a little see-through and kind of fade from the top? You should do that.” She nodded. “Yeah,” she said. “Lose your hair.”
“My hair?”
“Yeah,” she replied. “Just vanish a little. On the edges.”
It’s good advice, and I’ve tried to take it to heart. When I get too close, too tight, too worried, I repeat to myself, “Lose your hair.” It’s become my mantra.
Before I had children, I was one of the primary caregivers for my father. He was diagnosed with early onset Alzheimer’s at age 57. I was just 30 and unmarried, unemployed and unorganized. I left Los Angeles for the mountains of New Mexico to spend as much time with my dad as possible. I just wanted to be with him. But, like my daughter, he needed me to be a little less there.
“Don’t you live in Los Angeles?” he asked again and again.
“I do,” I said. “But I’m here now. With you.”
Dad was an artist and a self-described free thinker. He’d turned my childhood home into a roadside attraction made out of bottles and concrete. He didn’t appreciate limits when he was well, and he certainly wasn’t going to put up with them while enduring Alzheimer’s. My stepmother, Carla, and I knew it was our job to keep him safe, but we had to learn to do it without being obvious.
Caregiving is a constant balancing act, a series of trade-offs and negotiations. At the beginning, we kept Dad on our schedule. We sat down to meals at the regular time and encouraged him to change clothes and take baths. We tried to keep things running smoothly. We were devastated by the diagnosis, and in our sorrow we sought the comfort of structure and rules. This worked for a while, but Dad was becoming less tethered to our world. In order to be with him, we needed to be flexible. This meant letting him eat when he was hungry, it meant trading in regular showers for a long soak in the hot tub, it meant letting go of time and space and even sometimes our own identities. In order to be with him, we had to be what he needed at that moment.
I remember a day when Dad ate nine ice cream sandwiches on the way home from the market. “Well, look at this,” he’d say, unwrapping the next one. He was so delighted that I didn’t have the heart to ask him to stop. He wasn’t going to die from an excess of ice cream. He was going to die from complications of Alzheimer’s disease. Time was short. Instead of saying “don’t,” I looked for opportunities to say “do.”
Together, Dad and I visited rock shops and bookstores and ate bags of candied orange slices. We bought colored pencils and mixed concrete in the old wheelbarrow. We built bottle walls together and sang along with Willie Nelson and Hank Williams. When he stopped to admire the shiny back of a beetle or the shape of a cloud, I stopped, too. I let Dad lead the way, knowing there would be many days in the future when I would be on my own.
The people in our community joined us in keeping my father safe without visible limits. When it became clear that Dad could no longer drive his car, we disconnected the alternator and our friend and family mechanic, Maury, put off repairs until the idea of driving slipped from Dad’s mind. We discreetly asked the servers at our local restaurants to bring Dad only nonalcoholic beers, and our guilt at tricking him was quickly outmatched by the pleasure of a long meal and many shared stories.
I don’t mean to paint only a pretty picture here. It is not easy to be a caregiver. Just as it is not easy to be a parent. I like to think about the clouds and the candy and the singing of songs, but I know it’s not always like that. Parenting isn’t all picnics and story time, either. There were days when my father’s anger was frightening. There were days when he drank too much beer and days when he wet his pants. Once he set fire to the backyard. On those days, it was even more important to “lose our hair.” It was important to understand that Dad’s whole world was vanishing, that not one thing was left solid and with a clear edge.
“I went to the drawer for a knife,” he said. “And once I opened the drawer, I just stood there thinking ‘knife,’ but I didn’t know what to pick up.”
Letting go of rules and structure helped us live with less conflict in Dad’s world, but it also helped us let go of our own expectations, self-doubt and regret. Being a little less “there” was a way to deflect the anger and the mess and the smoke.
I can imagine laying the nearly transparent image of my father as he was before Alzheimer’s over the image of him in the full throes of the disease. In this way, I see all of him. I do this with my children, too, their baby cheeks overlapping the first sprinkling of teenager pimples. There was not a single route through my father’s illness, just as there is no one path to raising a child. My father’s geography changed daily and, as a family, we remapped as often. It was our challenge to live in two worlds.
