I wrote the notes below in January of 2010. – Paul Nordberg
Early in the afternoon of February 4, 2009, I received urgent e-mail and phone messages from Kathy Bond, at whose house she [my mother] had had dinner the previous evening. Kathy described to me my mother’s inability to see her chair and water glass at the dinner and reported that my mother was now in bed. My first words were, “She’s had a stroke.” And indeed she had. Kathy and her daughter Kate went to the house and carried her cell phone to my mother in bed. I talked with her and persuaded her to accept that she needed to go to the hospital. I say “persuaded,” but she was so groggy at the time I doubt she understood. At least that conversation was enough that I could tell Kathy and her daughter that it was time to call an ambulance to take her to the hospital.
I had and continue to have many doubts about that decision. My mother told me in one of her very lucid times after she was out of the hospital that if she had it to do over again, she would not have gone to there. In fact she had had a hemorrhagic stroke, which received no medical or surgical treatment. The process of being confined to her bed, and then to her chair in rehabilitation with an alarm to keep her from getting up, took a lot out of her health. Probably the net effect of the hospitalization and rehabilitation was negative and she would have recovered faster by herself at home. But we didn’t know at the time that the stroke was hemorrhagic. My instant fear was that it was an acute ischemic stroke, for which immediate treatment would have been critical – though that would have needed to happen the previous evening when the symptoms were first observed. I was not afraid of a fatal course, which I know my mother would have been willing to accept, but of the gruesome nightmare of a debilitating event that would leave her alive but crippled in some fashion or the other. Still, if I had it to do over, I would not have sent her to the hospital. In a sense, it doesn’t matter in that we would probably be about where we are today, but the course of getting there might have been smoother.
Because of the potential seriousness of the situation, I had called my brother at an early point. We made phased trips to Milwaukee. Nearly everyone believed that she would need full-time care for at least a period after leaving rehabilitation. I began to look at the possibility of assisted living facilities then, but basically Peter and I decided to first try full-time care at home, especially since my mother had given so much of her own life to keep my father home in his last years. We could then decide that was too much or too little. Peter made initial arrangements, happening across the organization that had provided care to my father. It seemed a reasonable course at the time.
The stroke herself was in the left occipital lobe of the brain, compromising her right peripheral vision, shape recognition, and her balance. Critically, she lost her ability to read, a major loss because reading had been one of her major activities. With the help of one of the caregivers, she seemed 80% of the way to recovering that ability a few weeks later. I was disappointed at the time that she gave up, but with the progression of the Alzheimer’s, that would quickly have receded again anyway. The stroke has also left her with long-term weak right peripheral vision and a tendency to bump into or trip over things on that side, and confusion in shape recognition – fork vs. spoon, for instance. (The same confusion is also characteristic of Alzheimer’s, but I think these were first associated with the stroke because they appeared immediately after it.)
The trial of full time home care still seems reasonable, but it didn’t work. The care providers were mostly good people, but without a lot of skill or stability in their own lives. More importantly, the local support network was getting thin as friends’ lives evolved and they had their own problems to deal with. Even minor things were challenging to deal with at 800 miles’ distance. As for larger things, my mother had two more hospitalizations that probably could have been prevented if I had been close. And if there were times and friendships of gold, there were moments and relationships that were less than that. I was flying back and forth every two or three weeks, which was not sustainable. My mother was losing a lot of awareness of her environment, and at the same time developing a very high emotional dependency on me. We talked on the phone every night, as much as she could talk. By April, all including my mother and her sister had agreed that it would be better if she could live closer to me. I spent a month researching various assisted living possibilities in my area. Meanwhile my brother’s family was considering possibilities in their area…
As it happened, I received a call a few days before that with the news that Beverly was found down in the bathroom the night before, unable to get herself up, and was now in a wheelchair because she was unable to stand. (The caregiver who had stood in for one night was unable to help her get up from the floor for an hour or two, which is a sorry story in itself.) The picture seemed to me and to her primary care physician very concerning for a possible hip fracture. Given her overall frailty, surgery to pin the hip would not have been an appealing approach, especially given the doubts I had about the hospitalization for the stroke. She probably would have survived the surgery, but anesthesia for the frail elderly takes its toll, and health tends to ratchet down after surgery to a permanently lower level. If walking beforehand was not strong, rehabilitation could be a long and uphill struggle. Once again I flew to Milwaukee as quickly as I could and with the caregiver took my mother to the hospital. There she had an X-ray (of the wrong hip) and was admitted for observation. She had a cursory visit by a physical therapist, who gave her some exercises to do. But after a night’s sleep she was determined to get up and walk, and get up and walk she did. (The people at the hospital decided to credit this to the efficacy of the physical therapy, which lasted five minutes and did not get my mother out of her chair.)