Q. Then what?
A. I went to the social worker at the nursing home. I didn't demand or even act as if it were possible, I simply shared with her my mother's enormous disappointment and together we brainstormed. The nursing home had a social work intern on the floor, so they paired her with my mother. She visited my mother, who liked her because she was young and smart and fully intact cognitively, which most people at a nursing home aren't. Christine got to the point where she could understand my mother's speech and took her to class. My mother would be wheeled out into the hall, and she would dictate to Christine, who would transcribe and read what she had written. They were sort of like Edgar Bergman and Charlie McCarthy.
Q. Your mother had severe deficits, yet you came up with ingenious ways to try to counter them. How so?
A. My mother was losing her ability to speak, and we were very nervous about the times when she would be in the nursing home and wouldn't be able to say, "I'm hot," "I'm cold," "call my daughter" or "turn off the lights." Having written about severely autistic children earlier in my career, I had seen various assisted-communications devices for kids who can't talk and thought they might work for my mother. My brother contacted an autistic school, found out who makes and sells them, and arranged for a salesman to come to the nursing home to test a variety to see what my mother could and couldn't do. We made a talking board that she wore around her waist with 32 buttons big enough for someone whose hands barely worked and programmed each with a request. She wasn't able to converse but she could make her needs known.
Q. What's another example?
A. When we got to the nursing home, they gave us advice, not just about taking care of my mother but of ourselves. At a certain point I was exhausted, overwhelmed and felt like I had absolutely no time for myself. It was my mother's physical therapist who suggested I take a four-day workweek if I could afford it. It was my mother's social worker who suggested I not spend that day with her, but have it be entirely for me. She also thought I should not tell my brother because she was afraid of what his reaction would be — Jane is working a four-day week, anything that comes up that fifth day, call Jane. And both the physical therapist and social worker said I should not tell my mother because she would have felt guilty. I never would have gone to a four-day week by myself and certainly not had the secrecy part.
Next: End-of-life conversations are necessary. >>