I step from baggage claim at the Dallas airport into primeval heat and stand waiting for a rental car shuttle in the dark with two strangers. It’s ten minutes to midnight on a Thursday night. I know the rental car counters close at midnight. I stare at the empty traffic lanes, willing the shuttle to come, hoping one of the rental car places might stay open late so I can still drive tonight to my sister’s house, where I will stay for five nights. This is the trip I make five or six times a year to help care for my mother, driving to the Philadelphia airport after I finish teaching my afternoon class at the University, hopping a plane.
As my mother verges more deeply into Alzheimer’s, my sister and I are trying to figure out how to take care of her together. My assignment requires that I hire someone to teach my classes, leave my family, and fly 3 hours each way. I am with mother for five intense 12-hour days: ferrying her to her doctors, cleaning her clothes, organizing her closets and drawers, taking her to restaurants and for walks, connecting with her friends, and providing what my mother calls “a change”, something exotic in her increasingly humdrum life. For my sister, who lives in Dallas, my coming represents a break. Though Julie doesn’t spend such concentrated periods with mother, she monitors mother’s doctors, pays her bills, takes her grocery shopping--and Julie is the one who gets up every day to the knowledge that she is on duty.
My sister and I have hit a snag. For several months we have been fighting over one of mother’s doctors. Mother has told me that she doesn’t like her primary care physician and, frankly, I don’t like him either. He seems condescending and I’m not convinced that she’s getting great care. I can’t figure out whether mother has told Julie how she feels about this doctor. Mother often tells the two of us different things, maybe because she can’t remember what she’s said. I don’t know, but I have landed in Dallas determined to change mother’s doctor. Julie refuses. His office is convenient. He knows mother’s history. Julie claims that he is well known and lauded.
Half an hour later this is what I am thinking about as I drive into the spaghetti bowl of expressways that criss-cross just beyond the airport. So I exit at the wrong place—which I only realize after miles of not recognizing any landmarks. In panic I impulsively exit again. And again. Before long I am driving west (I think) away from Dallas. As I try to get my bearings, the whole bank of overhead lights blink out for the night. I do not have a GPS. I can’t figure out how to turn on the interior lights in the little Fiesta. It is after one in the morning. I think of pulling over, locking the doors, and trying to sleep. But I know that is a dumb and dangerous idea. I am exhausted and lost and furious at my sister.
Such is the dilemma of siblings caring for a parent together. I was the out-of-town child. Julie was the child who lived in town. Julie often felt overburdened. I sometimes felt excluded. We had very asymmetrical tasks.
From the beginning our roles in the family were very different. It was mother who created those roles. I was the oldest. Mother thought of me as the musician, the reader, the black sheep. I looked like our dead father’s family. Julie was the practical problem-solver, the one who knew how to work around the house, the quick-witted child who was a veritable copy of my mother’s father.
If mother was the one who defined our roles when we were young, she also was in charge of most connections between my sister and me. We celebrated Christmas at her house, for example. She did the planning and most of the cooking. And in the summer, too, she served as the round-house where the trains met. Then suddenly she couldn’t plan, she couldn’t cook, she couldn’t negotiate between the two of us. In fact, she became the project on which Julie and I needed to collaborate. Suddenly we siblings were on our own together, each seeing our mother from our different point of view: arguing over what was best for her, feeling grief, struggling to work out a relationship with one another.
I don’t think this story is unusual. In taking care of a parent there is no such thing as absolute equality between siblings. In every family children are assigned roles they may not have wanted: the academic child, the sports child, the social child, the geek. The economic fortunes of siblings differ, too, and if the parent is reliant on her children for financial support, the struggle, if anything, becomes greater. Depending on birth order and regions of the country where siblings live, even with the best will in the world, they may reach very different conclusions about what their parents need. How, then, can a family care together for a parent with Alzheimer’s?
Just knowing that it’s normal to struggle might be part of the solution. My sister and I fought, but we never got out the big guns. We were mindful that mother would be caught in the middle. For her sake, slowly we edged toward compromise. When my mother died in 2008, what remained was absolutely crucial: the knowledge that took care of her together. And the link that forged between the two of us has strengthened and lasted.
Jeanne Murray Walker is the author of The Geography of Memory: A Pilgrimage Through Alzheimer’s, which will be released on September 3, 2013.