My mother had been sick for a long time, and especially sick for the past few weeks.
About a month ago I talked to her and she told me that she was immediately going for surgery to have her gall bladder removed. She had not told me of problems previously, but upon asking about this, she told me that she had serious digestive problems for at least the past two years and more serious problems lately. I read a little about the procedure and it seemed safe enough, and her doctor recommended it, and she had it removed.
After the surgery I talked with my brother, with whom I had not talked in a while. He said that the surgery took longer than expected and that the doctors complained of the size of my mother’s liver, which they said was enlarged because of her drinking habit. They said that she would have to stop drinking forever. She stayed in the hospital a few days and then went back to her apartment perhaps on a Monday, and during that week, I talked with her every day. She told me that she was walking and getting better every day as expected. I asked her daily if she thought that she needed physical therapy or any caretaker to come to her home, and she said that she would think about it, but she did not expect to need either and that my sister was visiting her and that was enough. I especially thought that it was strange that she could have her belly cut open and not need physical therapy.
On Friday I talked with her and she told me that she was feeling faint, and was thinking of going back to the doctor. She said that my sister was about to visit her and that with her, she would likely go to the hospital. She told me that she regretted waiting so long for the surgery, and told me that her digestion had improved since the surgery. I did not know what to think, because I did not know when to expect her digestion to improve but after only a few days I was not expecting her to notice changes especially since she was taking so many other drugs.
I had always wished that she would go in for medical care when needed. I was reminded that some years ago when she left her job, she did so by quitting instead of taking medical leave. The implications of this was that she lost her paycheck and access to services which were available to her as an employee, and she gained nothing at all by doing things this way except that she avoided having to ask her employers for medical leave. She was extremely distressed and unable to work, but for years whenever I talked to her, she either did not tell me of a medical problem or when she did it sounded so minor and she would never want to go to the doctor to have it seen. After leaving her job she became more of a shut in. She would always tell me that her health was improving, but I am not sure that she had a good memory or understanding of how it was before and in thinking about it, I think her health was always getting worse.
I talked to her the following day, Saturday, and she told me that she was in the hospital being treated for dehydration and being checked for infection. We talked a bit more, and she asked when I was coming to see her. I told her that I had made no plans, and she reminded me that she and I planned to have dinner that night. With me in New York and her 1500 miles away in Texas this was not something that I could do without planning, and I realized that she believed that I was nearby. I asked more, and she said that I lived in a nearby town in which neither I nor anyone I know has ever lived. She then asked me how my physical therapy was, and I told her that I did not have physical therapy and asked her why she thought that I did. She said more confused things, but in a confident way, and then she told me she expected to walk out of the hospital in just a few minutes. I think that after her surgery she never stood again, but whenever I talked to her from this point she always believed that I was very close, perhaps in the next room or otherwise just minutes away, and that together we were about to go somewhere, and that she herself had only just laid down but minutes before had been very physically active.
I talked to her for the next few weeks. She seemed more cheerful than she had been any other time that I recall. One time she told me that she had just come in from a day of working. She told me that she had a new job as a gardener, and that she had been mowing grass, planting flowers, trimming hedges, and removing sticks from some park. She said that she expected to be traveling a lot, and that it was a nice job because she would work the days she choose and take off the days in which she did not want to work, and the job would always be open to her. At the end of her story she asked me when I was coming to meet her again, as we had met for lunch earlier and she expected me to meet her for dinner also.
Another time she told me that she was arranging for a party for the extended family including the deceased and had been preparing an elaborate meal. Earlier in the day she had gone biking with various people, including me, and that now was the time for her to resume food preparation so that everything would be ready when everyone arrived for this dinner. Still another time she told me that she had joined a softball team and had been going to practice, and that night was one of her games. She was very proud of herself for joining the team, and said that in past games she had played well and was having lots of fun. She invited me to her game that night, as she had not seen me since the morning.
My mother has hardly been able to walk for years and rarely left her home. In my entire life I have never known her to do anything sporty, and think I have never seen her ride a bicycle or even casually play with a softball. She has always talked of gardening and liked the idea of gardening but could never care for her plants, so the only ones that ever survived were those which needed no care. A few times in my life we had a few relatives over for dinner, but I think in comparison with many other families, we hosted and accepted invitations less. Even for holidays when I see that other families either prepare food and invite guests or be invited elsewhere, we did not share meals with others, and my mother has long complained of cooking. Some years ago and for no reason I understood, she had the oven removed from her home because it upset her, and she had it replaced with an stovetop with no additional functionality or benefit that I could see except that it did not have an oven and had a cover that could even hide the stovetop. She quit cooking long before then except for what the microwave could make for her, but as a gesture, getting rid of a nice gas over without any reason to do so was a strange thing to do. In short, the gardening, biking, cooking, and sports fantasies that she was having did not reflect what I knew her to do, but were things that I had heard her mention wishing to do over the years. I was glad that she in her dreams was able to do the things she wished, and that she imagined that I and some dead relatives she liked had just visited her and were about to visit again.
I talked with my brother and sister sometimes during this. At one point my sister said that she was feeling a lot of stress, and that she had been unable to meet with any doctor, and regretted not being in the hospital when the doctor was to ask questions. I was unsure of whether I should take time from work to be with my mother. The reports I was getting at the time was that her condition should improve as her problems were minor. The confusion was post-operative delirium, which resulted from her as an older person going under general anesthesia. Her other issues included surgery recovery, a urinary tract infection, dehydration, obesity, liver problems, and sudden stopping of drinking alcohol. All of those could have been treatable and none necessarily would lead to immediate worsening of her condition. As I would not prefer to take work off indefinitely, and as my longtime partner Lee in Seattle was not employed and knew my mother from her visits to Seattle, I suggested that if no one is around when the doctor comes that Lee would go to the hospital and help. He has a lot of experience in hospitals and asking questions, and my mother likes him, and if there was any concern about anyone not being able to meet the doctor then he could always be there as he would just need a computer in the room to keep himself busy whereas I, my brother, and my sister all were committed to jobs and could not easily be there continually for weeks or longer. When I sent this message I think my brother and sister talked with each other. The message that I got back was that lots of people were continually taking care of my mother and that at this time she needed no additional care, and that it was not correct to say earlier that she was lacking some attention from family. Missing the doctor was just a fluke, because in general, people are there to get the information when doctors are around. For now, they said, they would like to only have family members around my mother. Lee has been a big part of my life since 2001 and when my mother came to Seattle to visit me she was with Lee as much as with me. He is family to me, and I hoped to my mother also. Lee called my mother often while she was in the hospital at this time, but I felt that if my mother was already getting enough care then I would rather delay either I or Lee traveling to her and wait until perhaps others are fatigued with caring for her at which time we could relive them. With her condition staying the same, I anticipated that perhaps she would be confused for months at least and perhaps I could pick up when her condition is more stable and others are around less.
My sister was in the room and put the phone to my mother’s ear and mouth. My mother told me that she had taken a goat home, and that my father had bothered her to return the goat. She insisted to me that the goat was from her herd, and that if my father’s goat had wandered into her herd, then he should retrieve it himself without her delivering it. So far as I know my parents have not seen each other in 15 years or so. I talked with my sister after this, who said that my mother was losing motor control and could no longer hold a phone. First she lost control over her fingers, then her upper arms and her legs, then her arm entirely, and now she can only talk and look. My mother still at this time was telling me stories of how she had just done very active things, and was about to walk away to go elsewhere and meet people who had died long ago. In this talk, she told me she felt old but that was strange because the year was 2002 and she was young.
When I talked with her again another day she was incomprehensible and hardly responded to what I was saying.
Saturday 31 May just before noon in NYC she died. I got a message about her death from my brother a few minutes before I was supposed to moderate a panel at WikiConference USA. I texted a bit with my brother and we both decided we would talk later, and I decided that I would like to follow through with moderating the panel. I did the panel, and further decided to follow through with hosting the conference.
