My Third Third Is my Mother's Ninth Ninth

Let me tell you about my mother, who turned 90 last week. She once held elective office. When she saw that women in the court system were paid less than men, she had them switch bargaining units, get firearms certification, and get equal pay. I would come home and all her picket signs would be leaning against the walls. She wrote stories. She cooked dinner every night, typed school papers, walks two miles every day, and voted in every election ever held in New York. We can never reach her by phone because she has such an active social life.

But this past January, my mother had the shakes and asked to go to the E.R. Somehow it came up that she had to reach for something and she said, “I can’t lift my arm.” That’s because a while ago she had rotator cuff surgery for her shoulder that didn’t take. But that wasn’t in her chart and someone thought that meant she’d had a stroke. So they admitted her.

Five days of tests later, my mother had what is called “hospital psychosis.” She wanted my father (long dead) to get her out of the airport and bring her back home from Germany. Her confusion was total. When the hospital concluded she was actually fine and could leave, they would only release her to a rehab/nursing home because five days in bed had left her unsteady on her feet.

At this point, I flew out on a red-eye. The rehab place had her in a wheel chair that was alarmed if she stood up. She had one hour of physical therapy a day. I insisted I was taking her out; they told me it would take at least a week to have a Discharge Planning Meeting.

So my sister and I kidnapped her, stealing her back to her apartment so that familiar surroundings could bring her back. Later, I had to keep kidnapping her back and forth because she wasn’t officially released. I had to force that release, hire an aide, convince the facility the aide did not have to sleep in, and try to restore my mother’s grip on reality.

I met with medical administrative types and social workers, took her on practice walks despite protests that I wasn’t “certified,” borrowed wheel chairs and bought a walker. Everything was a constant wrestling match with institutions and rules that made no sense.

During one meal, one woman said she didn’t like the selection, could she have a plain tuna fish sandwich like the man across from her. She insisted. It was like a scene out of One Flew Over the Cuckoo’s Nest, the staff deciding she was a troublemaker. I thought my mother would go into old age feisty like that. I assumed she’d argue with the officious caregivers, demand her rights, know what she wanted for her Ninth Ninth and make sure she got it. But now I see how fearful and confused she is, and I’m terrified she’ll be prey to a system that doesn’t care what she wants for her Ninth Ninth. I don’t worry about my mother dying; I worry about her not dying well.

I told my siblings I had encountered a problem bigger than me. That was it. It was just too crushing, but it had to be handled, and I was there. I think the whole experience left me with PTSD. America’s medicalization of aging is bigger than me, bigger than any one of us. I’d never felt so defeated. And the sad thing is, the medical people think I “won.”

My mother is now settled in back home. She lives in one place and her four offspring live in four different places. We fly in and out, try to balance what care she needs with what care will rob her of abilities and autonomy, make telephone calls and try to ensure her medical records reflect her wishes.

But as my brother pointed out, Advance Directives only work on an unconscious person. A frightened, nervous 90-year-old with the flu might insist she go to the E.R. Who’s going to stop her? And once in there, will we have to launch yet another rescue mission?

My Third Third is inextricably intertwined with my mother’s Ninth Ninth. Together, 4,000 miles apart, we sit precariously and fearfully on the edge of a rabbit hole.