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babydramatic_1950) wrote2019-02-14 04:45 pm
LJ Idol Week 16: Inkling
“Do you think Buub is losing her marbles?” my mother asked over a Thanksgiving dinner at Fiorello’s (her favorite restaurant) where my partner Betty and I had gone with her. “Buub” was my mother’s nickname for Betty, who had just walked out in a snit because she thought my mother had “interrupted” her when she was telling a story. Yes, my mother was rude, but I had learned over the decades (was this a New York thing?) that if someone is rude, or says something you don’t like, you talk them down, you “override” them with speech, or, as many First Amendment advocates say “The best answer to speech you don’t like is more speech”. Betty, on the other hand, came from the South. Also a therapist had once told her “if you don’t like something someone says or does, walk away”. Was that supposed to include a holiday meal with a family member? I didn’t think so.
This was about 15 years ago.
Yes, I did think that Betty was “losing her marbles”. I remembered her mentioning to me how her mother, who to me had seemed just plain nasty, would get little bouts of sudden irritability that began increasing in frequency when she was the age Betty had been at that Thanksgiving meal: around 70. When Betty had asked her mother’s doctor about it, he had told Betty that her mother had “multi-infarct dementia”, which is caused by mini-strokes.
About two years after that Thanksgiving meal, Betty was hospitalized for dizziness and was told that she had a-fib. She was given a blood thinner to prevent a stroke. So I decided that her ever-increasing irritability must be caused by the same multi-infarct dementia that her mother had had.
By that point her irritability had become so unbearable that once I saw her settled at home after her hospitalization and on a regimen with a blood thinner, I decided I had had enough. Betty had been making my life miserable for the past two years. I was working at a demanding job and didn’t have a lot of patience. She hadn’t worked in years, didn’t do anything around the house, had lost her romantic charm, and was just plain unpleasant to be with. Also, a few years earlier I had begun singing again and had a whole new life and a whole new sense of myself. So after 30 years together, we split up.
The breakup didn’t last long. About a year later, Betty had a hip replacement and needed help during her recovery period. Although I did not want to get reinvolved with her full time, I decided it would be inhumane not to do something so I spent Saturdays doing a few chores for her, mostly laundry and shopping. If she wanted cleaning done she could pay a cleaning woman, which she did, although considering the mountains of detritus in her apartment, having a biweekly cleaning woman was like, to quote a friend, “trying to move a mountain with a teaspoon.”
Interestingly, despite my going with Betty to doctors’ appointments from time to time (these included a cardiologist, a pulmonologist, and an orthopedist), the word “dementia” was never mentioned. So I had a private consult with a social worker who specialized in gerontology. She agreed with me about the “multi-infarct dementia” and told me that the solution at my end was to tell Betty less about my personal business and choices so that we would quarrel less. To set boundaries. And she assured me that one day, as Betty’s dementia progressed, she would stop being irritable and would simply be confused and docile.
By the time my mother died in 2010 things had gotten really bad with Betty. In the interim since 2007 she had had one bout of pneumonia, which led to her spending several weeks at an acute cardiopulmonary rehab facility (after which she was noticeably better for quite some time), a bad fall, and two operations to remove nasal polyps, the second of which caused her to hemorrhage from her nose after having been discharged, sending her to the emergency room.
I mention my mother’s death as a turning point because after my having sat with her during her last 48 hours on earth, watching her body being removed from her apartment, and the next day identifying her body at the funeral parlor, not to mention starting to deal with a variety of legal matters and paperwork, Betty, instead of being supportive, decided to have a raging temper tantrum because her name was not mentioned in my mother’s obituary. I explained to her that the obituary was something that my mother had written herself, probably during the year that Betty and I were split up, and that I had simply forwarded it to the newspaper verbatim, but this did not seem to appease her. Yes, anger and hurt (or a feeling of having been overlooked) are things we all experience, but surely a sane person would understand what was and was not appropriate for a particular time and place?
After that things went downhill quickly. Sometime in 2011, after Betty had spent several weeks dragging herself around the apartment moaning “ow, ow, ow” and not really doing anything except staring at the tv or leafing through catalogs (she only seemed to eat if I was there or if a friend came and fetched her to eat out), a mutual friend suggested that we try to get her into an assisted living facility. There would be financial details to work out, but it seemed like a good solution. We looked at a lovely place where each resident had their own apartment, small pets were allowed, and there was a restaurant with a gourmet chef and numerous activities for the residents. The facility even allowed people to spend down and roll over onto Medicaid (we were counting on a possible large payout from Betty’s landlord if she vacated her rent controlled apartment) but in the end Betty said no. The deal breaker (which I understood) was that she would not be allowed to have an overnight guest. Our friend was furious. She had put a lot of effort into trying to figure out this move, including going with us for a free consultation to a lawyer. Yet when I said the word “dementia” to her in connection with Betty she just blew me off and laughed. “No” she said. Betty did not have dementia.
After that there were two or three more emergency room visits: for falls (no bones broken, thankfully) and for unexplained dizziness. There were visits to gerontologists for primary care physicals. Yet nobody mentioned dementia. Betty now was eating almost nothing and had lost 30 pounds, was semi-incontinent, and could not do even the simplest things for herself, yet all people said was that she was “lazy,” “willfull”, “depressed”, or “deconditioned”. She and I still went out occasionally, but things got harder and harder. It would take me close to an hour to help her get dressed, then we would have to get a cab (she paid), and then we would finally get to wherever we were going (usually a museum and usually barely an hour before closing) where she would first want the bathroom, then want coffee, and then want to sit down. If I was lucky I had a half hour to look at an exhibit.
Shopping with her was worse. I remember spending two hours in Old Navy until I thought I was going to keel over (from fatigue or boredom). She came home with two pairs of pants that did not fit and spent again what they had cost to have them tailored. I think she wore one pair once.
Then there was the time she wanted exactly the right kind of coffee thermos to keep by the bed. We spent over an hour in a housewares store and I watched as she became more and more confused. She came home with something, I’m not sure what, but it was not ideal for putting coffee in and I don’t think she ever used it.
Somewhere during that period we did manage to take a vacation to Oguquit, Maine. It was my treat for her 80th birthday. She spent most of the time in the room.
Our last outing in the city was to the ballet. We saw “Jewels”. Betty could hardly sit up in the chair and had to be escorted out during intermission and helped into a cab. This was not quite ten years after her hospitalization for a-fib and it was the last time Betty ever left the apartment other than on a gurney to go to the hospital or to a doctor. After bringing her home from the ballet I stayed with her for a while and then went about my business. About a week later a nurse came to visit her for an assessment (perhaps ordered by a social service agency I had gotten in touch with?) and found her lying in bed in a wet pamper. She had not eaten for 24 hours because she said she had twisted her ankle and could not walk.
She was taken to the emergency room. Her diagnoses included a urinary tract infection, aspiration pneumonia (my fault for having bought her a pumpkin spice latte which she drank too fast), and, finally, after ten long years: dementia.
Things have not been easy since then (this was a little more than two years ago), but seeing my inkling become a word on a piece of paper meant everything. It meant she could get the care she needed. It meant that I would stop being angry that she couldn’t take care of herself.
For the past two plus years Betty has been completely bedridden. She qualified under Medicaid for 24 hour care because she not only can’t walk, she can’t use her cell phone to call for help. She needs help sitting up if she wants a drink of water. A primary care doctor comes to the house to visit her. The first time he came he told me that the reason that Betty refused to learn to walk with a physical therapist when she came home from the nursing home was that she has dementia, not that she is “deconditioned” and not that she is lazy. And yes, she has become docile. Sometimes she doesn’t know where she is, but every time she hears my voice and every time she sees me she says “I love you”.
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My mother had Alzheimer's. So much of what you wrote here takes me back. So, so difficult to watch a loved one decline in this way.
<3
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This is such a hard thing to go through - for the both of you. This was so well-written and filled with so much emotion, as always. The last sentence is so beautiful and uplifting to me, regardless of the difficulties. The love you both share is a beautiful thing <3
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It does sound as if getting the dementia diagnosed has really helped Betty get better care, and while it doesn't make things any easier, it does seem to be helping your relationship with her.
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I can only imagine how incredibly hard it is for the both of you to deal with Dementia. Although it does sound as if the medical care after diagnosis in the US is actually better than in the UK. It's one of those things that this country hasn't managed to get sorted out at all yet!
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You wrote about this exceptionally well. I'm glad that you were finally able to get that diagnosis, even if the journey was long and difficult. Thank you for sharing.