By Barbara Trainin Blank
Be careful what you wish for. When my parents aged, I found myself praying my father would pass away first. My reasoning seemed sound: like many successful career men at the time, he was highly intelligent. But he couldn’t cook or sew or do laundry well, and if he went shopping, he’d often come back with the “wrong thing.” My mother, on the other hand, was less educated, but practical. Theirs was a traditional division of labor. I figured my mother would do fine, except for the grief, whereas my father would be “helpless.”
In January 2008, my father passed away. Suddenly. Under treatment for cancer, and doing well, he had a stroke. My mother was in a state of shock and intense grief, or so we thought. Pretty quickly we realized another element was complicating the picture: dementia. It wasn’t changing her personality much, at least not yet. But it was affecting her short-term memory and ability to function and focus. Usually the one to pay the bills, she couldn’t understand how to balance a checkbook. Once totally organized, she’d obsessively look for her keys or credit card, even when she had seen them the second before. She seemed lost in the world.
Although my brother lived only 40 miles away compared to my 180, I found myself assuming most of the responsibilities for our mother’s care. He visited, but I did most of the work. Many people assumed it was a male-female thing, but the experts said, “That’s just the way it is in families,” unrelated to gender.
Every two to three weeks, for nearly three years, I took the train from Harrisburg, Pa., to New York City to see her. Much more than visiting was involved. I became a companion, caretaker, tax preparer, banker, shopper, organizer, and walking medical record. I hired and supervised home health aides and case managers, a process that was sometimes excruciating when aides came and went, and filled out long-term-care-insurance forms. I recruited friendly visitors and volunteers and consulted with physicians, physical therapists, nurses, and hospice workers when the dementia was followed by cancer.
When leaving my mother, I was exhausted, relieved, and guilt-ridden. At home, I worried so much I immediately thought of going back. Watching her deteriorate mentally, though she continued to recognize us, was more painful than almost anything in my life. When she died, in November 2010, I could have felt relieved. Somehow, all I could think of was how hard it was to watch her that way.
It could have been worse. My mother could have lived farther away, or somewhere Amtrak didn’t serve. I could have been a single parent or only child or had a husband who pressured me to stay home more often. My mother-in-law could have been sick at the same time, or my kids could have been smaller. But things were tough enough.
There was one consolation. My mother had begged me in the early stages of her illness not to put her in a nursing home. By traveling hundreds of miles on Amtrak and the subway, and stretching myself to the limit, I fulfilled her wish.