Nobody just “stops by” this house. My mother won’t let anyone she knows come near the outside, much less invite them in. When she had her breast cancer surgery seventeen years ago, she was waiting at the curb, bag packed, for me to take her to the hospital. It’s 2016 and I have not been inside my childhood home since 1987.
Melissa and I joke that hopefully my mother will die outside the house, so at least we’ll know something has happened to her. There’s worry beneath our laughter. We’ve respected her autonomy, her right to live as she chooses, including not allowing anyone inside. But over the past year there have been a series of incidents. First, there was a hospitalization for frostbitten diabetic feet after she shoveled the end of the driveway during a snowstorm. Then, there is the matter of the phone being turned off several times. Finally, she’s told my brother-in-law she’s running out of money. As I look at the filthy windows I’m thinking, were we wrong to let her live the way she wanted? Should we have done something sooner?
Two weeks later, with her grudging permission, I start paying my mother’s bills and discover that she’s had no water in her house for at least two and maybe as many as six years. This is why her infected toes didn’t get better, why she smells musty and wears the same clothes. Maybe she’s washing them someplace else? Who is this person? My mother used to wash all her nurse uniforms every day and hang them up in tidy rows in the laundry room. She left for work in white stockings and a crisp white uniform dress. She’d starch her nursing caps and leave them on the top of the washer to dry so they were always clean and stiff. How did my sister and I not know she’s been living like this? And then my mother has a car accident. She’s physically fine, but her green 2000 Camry that sags from the weight of papers, books, and bags is not. She was able to drive it back to her house, but without access to water, she certainly can’t be living there without a vehicle.
What my research participant made clear to me that day is that the lack of robust and accessible social programs for long-term care is merely a...