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From Hell to Nirvana: A Story of Dementia and Love

“Do you think Betty is losing her marbles?” my mother asked me over a Thanksgiving dinner in 2004. The question was triggered by the fact that Betty, my partner of 28 years, had just walked out of the restaurant where we were eating because she thought that my mother had “interrupted” her when she was telling a story.

Yes, I did think that by that point 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 that 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.

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 assured me that one day, as Betty’s dementia progressed, she would stop being irritable and would simply be confused and docile.

Between 2007 and 2010, Betty had a hip replacement, 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.

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, 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 refused paid help, saying she “couldn’t afford it,” beyond having a cleaning woman come in every few weeks.

She and I still went out occasionally, but it 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, 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.

In 2014, we took what would be our last vacation to Ogunquit, Maine, where we had gone for a week almost every summer between 1987 and 2002. It was my treat for her 80th birthday. She spent most of the time in our room.

Our last outing in the city was to the ballet, in September 2016. 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 more than a decade: dementia.

In October 2016, Betty was transitioned from the hospital to a nursing home/rehab. I wanted her to stay there. Everything was paid for and taken care of and I could visit every day. My dream was that she would become a permanent resident and eventually have a private room.

Unfortunately that was not to be the case. Medicare would only pay for three months of “rehab” (Betty was given physical and occupational therapy every day, including being made to sit up in a chair, and being “walked” with a walker) after which there needed to be a discharge plan. For Betty this included hiring a lawyer and social worker team to help her meet the criteria for Medicaid with a spend down, and, finally, to have someone shovel out her apartment, in which she had “hoarded” over 40 years of possessions (the main reason I lived separately). As I now had Power of Attorney over Betty’s money, I spent close to $7000 on a company that sent two men and a van. It took them five 8 hour days to remove all the unused furniture, shelving, frames, and appliances, as well as all the assorted makings of DIY projects begun 40 years earlier and abandoned. Piles of documents (some dating from the 1960s) were carted off for bulk shredding. The only “junk” left behind was what was in drawers. Needless to say, the cleanup crew did not do all of this completely on their own. I needed to be there to supervise, and when it came to the granular sorting (papers to shred versus papers to keep versus papers to dump in plastic bags to sort later), I had to do all of this on my own. So with the nursing home social worker’s blessing, I paid myself a stipend of $100 a day out of Betty’s money for “lost time from work” (I had been working at home as a freelance copyeditor since 2010.)

Once Betty got home, the plan was that she would use her own money (or I would use it on her behalf) to pay for 24 hour home care until she had spent down to the asset threshold for Medicaid. Any new money other than her Social Security would be put into a “Supplemental Needs Trust” for me to administer. That would pay her rent, which by now, even under rent control, was twice the maximum income allowed to her under Medicaid.

She became eligible for Medicaid quickly, but the application to be evaluated for 24 hour home care took its sweet time moving through the system. And whatever else was negotiable, it had become obvious that Betty could not be in the apartment alone, mostly because she could not get out of bed unassisted. I made it clear that I could not be with her every day, as I needed to be at home for at least three days in the middle of the week to work the minimum number of hours I needed to work to supplement my Social Security. Our case was stated.

Betty came home from the nursing home after Christmas, in 2016, with a lovely private aide. At that time Betty was still able to walk with a walker to the bathroom, and once or twice, she even walked throughout the house to see the beautiful, cleared out, airy space that had been made of the living room facing the street (which was where the aide slept). Sadly, I am not sure if it all registered. She expressed neither delight nor dismay.

But this aide charged quite a lot and despite constant calls to city agencies, the evaluation for home care hours was not happening. Soon Betty’s savings were depleted.

So I did what people do now: I made a GoFundMe page. I named it “Keep Betty in Her Home with Help”. I ended up raising close to $3000 from a wide range of people: mutual friends, people from my church who did not know Betty, people who had known Betty long ago but had not seen her in decades. Cynically, I observed how much easier it was to get people (in all income brackets) to give money of varying amounts, than to get people to donate time. As far as the latter was concerned, when I asked for help working with the cleanout crew, one person spent one afternoon.

This $3000 paid for another two weeks of care, after which blessedly, Betty developed a urinary tract infection and had to go back to the emergency room. I say “blessedly”, because there was now no more money for home care and the evaluation from Medicaid had still not been scheduled.

But my relief was short-lived. Her urinary tract infection was cleared up after about 48 hours, during which time she had not been formally admitted to the hospital. In order to qualify for a transfer to a nursing home for rehab, she would have had to have been a hospital patient for three days. And after numerous calls to every nursing home in Manhattan, starting with the one where she had been for almost three months, it was learned that they did not take short-term “custodial” admissions. I got down on my knees and wept. Apparently heartbroken by our plight, a team of medical professionals and a social worker put their shoulders to the wheel and eventually found a placement out in the wilds of Jamaica (Queens) that would take Betty for some light rehab until home care could be arranged. After a long wait, well past dinner time and into the night, an ambulance arrived for her and she was put on a gurney, wrapped up in a white blanket (it was snowing) like, as she and I said laughingly, a burrito, and on her way to a nursing home that looked like it was in the middle of nowhere. Far beyond the last subway stop (which was in the middle of a lower-middle-income type shopping hub), past car dealers, tire dealers, and outdoor businesses that sold aluminum siding, it sat in a run-down residential area. There was a supermarket and a Chinese restaurant across the street but no other businesses for as far as I could see.

Betty was put in what I now assume was the dementia and mental disorders unit, sharing a room with a woman in her 40s who did not speak. Betty was frightened. It was about 11 pm before I was able to wrench myself away and call a car service.

I spent the next two months commuting to Jamaica several times a week. This involved taking the E train to the last stop and then taking a bus. Sometimes I picked up takeout food at the shopping hub near the subway, which was usually cold by the time I got to Betty. Usually the only things that survived that she was willing to eat were coffee and baked goods from Dunkin Donuts. Since the food at the nursing home was tasteless and she had less and less appetite, all she ate from their menu was ice cream. Because she was so underweight and malnourished, unlike most of the other residents, she was allowed to have all the ice cream she wanted. On the days I came, we had fried shrimp and fried chicken from the Chinese restaurant.

Finally, almost two months later, a social worker from the city called me. We made a date for her to see Betty’s apartment. Because of all the work that had been done the previous December by me and by the cleaning crew, this social worker, after doing a “walkaround,” deemed Betty’s living space appropriate for home care. The next step would be a nurse evaluation, to take place at the nursing home. The nurse came, and finally, Betty was approved for full 24 hour home care under Medicaid. I was told that she had been approved because not only was she unable to walk unassisted, she was also unable to use her cell phone to call for help. And she needed help sitting up if she wanted a drink of water. She could no longer sit up on her own.

Our nightmare was over.

A few days later she was discharged. I was given a rota of aides who would alternate days of the week. On the day of her discharge we waited from noon to 9 pm for an ambulance. When the ambulance finally came, it took two hospital orderlies to bundle a flailing “Betty burrito” into her white blanket (it was snowing again) and put her in it. She screamed the whole way home. But she got home. We were home free.

Betty never walked again. Sadly, she never saw any part of the apartment other than her bedroom. She did not know that she was in the apartment that she had lived in since 1960. When I would tell her that yes, she was, she would argue with me. Sometimes she thought I had rented a room for her somewhere; other times she thought she was in a hotel – or a hospital. Sometimes she asked if she was in Texas, sometimes she asked if she was in Boston. She frequently asked me where I lived. Had I flown in from somewhere?

A primary care doctor came to the house to visit her with a promise to come monthly. The first time he came he told me that the reason that Betty refused to learn to walk with a physical therapist (attempts had been made by that point, courtesy of Medicare) was that she had dementia, not that she was “deconditioned” and not that she was lazy.

I had three years at home with my beloved Betty. What the gerontological social worker had told me almost 10 years earlier had come to pass. She was now docile, sweet, and confused. She was always smiling.

We didn’t have very many meaningful conversations (although if I said I was unhappy or distressed about something she tried to perk up, listen, and provide a sympathetic response) but we had a tactile, creature-ish kind of unwavering love. I kissed her often. I rumpled her hair. I fed her. I played with her toes. And when it was time for me to leave, we had our goodbye ritual. We would say “I love you to the sky and back”, first raising an arm and pointing upwards and then lowering the arm and pointing downwards. Then we would point back and forth at each other and say “You and me and you and me make us!!”

When Betty’s oldest friend came from her new home on the West Coast to visit, she told me later that Betty appeared to have achieved “nirvana”. “Beyond ambition” was the phrase she used. I laughed and said that I supposed she could say the same of me, and that the world would probably be a better place if there were less ambition and more compassion.

For the most part, the aides who did the hardest and most grueling physical work caring for Betty were truly angels sent from Heaven. Two of them, I could see, really loved her. I watched them give her a bed bath, change her shirt (not to mention her diapers), comb her hair, and brush her teeth. They cooked wonderful things for her and tried to coax her to eat. One of them made blueberry pancakes on the mornings when I was there, for the three of us. She would kiss Betty when she thought I wasn’t looking. Instinctively savvy to our relationship, she called Betty “the king” and me “the queen”. She loved me, too.

After two years at home in her bed, Betty began more and more to drift away from reality. She would ask me if her mother was going to pick her up from school. She wanted to know how she was going to get back to San Antonio (where she had grown up). Did I live with my mother, she asked me? (My mother had died 9 years earlier.) “Why didn’t my Daddy call me?” she would ask. But she rarely became upset.

Breakfast was the happiest time. She always woke up cheerful and breakfast was the one meal she always liked. Sometimes it was oatmeal with raisins and pecans, and sometimes it was blueberry pancakes. When I was there we would watch the morning news. I don’t know how much registered, but she loved the commercials – the Geico gecko; the Limu emu. (A week after she died, at home alone with the tv on, the sight of the emu made me weep. How could the emu be here still and Betty be gone?) Or she would say “Look, doggie!” She got especially excited if there was a Dachshund in a commercial because she remembered the Dachshunds we had had.

The memories of our pets were the last to go. Almost to the end, she remembered the vacations we had taken and the people we had taken them with, but by the last months, those memories had also gone, along with memories of friends from the 1980s and 1990s and of plays we had seen. But the most painful moment of all for me was when I realized that not only did she not remember that we had been lovers; she also no longer understood what that meant.

Sometime in the Fall of 2019, her primary care doctor said that we should put her on hospice. I was quite surprised, as I did not think that hospice took dementia patients. The triggering event was yet another episode in which Betty became listless and unresponsive for several days (she perked up a little after the doctor gave her an antibiotic for a possible urinary tract infection). He said that there was no point in dragging her around for diagnostic tests or checkups. He said she was not going to get better and she should just be allowed to die naturally. The first hospice who came for a consult did not accept her but the second one did. Her formal diagnosis was “senile degeneration of the brain”, which I was told was a physical illness not just a mental one. Betty died peacefully in her sleep on March 29, 2020.

I am thankful that she died before the lockdown became stricter. I remember getting a call from her aide at 7 am that day saying that Betty was not speaking or responding to anything, including the arrival of breakfast. As soon as I got the call I dressed quickly, didn’t bother with makeup, tied a scarf over my mouth, and got on the subway. Then I got into bed with Betty for our final snuggle on this earth. If she had lived a few weeks longer, would something like that have been possible? Most likely not. A hospice nurse came to visit and told me that Betty’s vital signs were dropping; that she was “transitioning”. Betty did know that the nurse was there, because when the nurse put an oximeter on her finger, she said “oximeter”. That was the last word she spoke. After that she went to sleep. I took an old hymnal from the bookshelf and sang the Twenty-Third Psalm to her. I said to her over and over “I love you every minute of every hour of every day”. I texted a church friend who worked at a hospice. She told me to tell Betty I loved her, and then give her back to God. When I got a (COVID-inspired) lukewarm and ambivalent response to my call for a hospice chaplain, I called a retired bishop from my church to come see Betty. He was her age, 85, but quite active, and of a generation that, most likely, believed that ministering meant putting duty before safety.

When he gave Betty the last rites he wore gloves, but he unflinchingly touched her head to anoint it with oil the way he had done for the dying for, most likely, six decades. I am not now sure if she was still alive when he got there, but he told me later that he thought she was. Throughout the day, I made Facebook posts describing everything that was happening. Some people might consider that tacky. To me it was a blessed relief from the endless stress of making and receiving phone calls, as I had had to do when my mother died nine years earlier, which would not have conveyed this narrative as quickly to as many people and would have put me in the position of having to manage other people’s anxiety and grief through being bombarded with their questions.

Finally another nurse came from the hospice and pronounced that Betty was gone. The aide helped me cover her with her “blankie” and I called the funeral parlor. Even though it was around the corner, we waited for four hours. When they came I asked the two men (how Betty would have hated that this would be done by men) to put a pair of sweatpants on her. I didn’t want her going to her final destination on earth in a shirt and a diaper. Then I took one last look at her face and sobbed my heart out.

From Hell To Nirvana

Rebecca MacLean is a writer, editor, and classical church soloist living in New York City. She is the author of the blog babydramatic.blogspot.com which is about life as a late-starting classical singer in the over-saturated New York music scene.

She is currently at work on a longer memoir about her life with Betty, including a glimpse into the world of 1970s Lesbian Separatism.

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