My Mom was always, always her whole life, from the second of her birth to her last breath, in search of Utopia, the perfect place, a heavenly place, a place of connection, a place beyond time and geography where she could commune with Deity and all her dearly departed, commune in a way beyond words, a place of unconditional love and acceptance and understanding. A place where, in her words, "relationship" could flourish. She always used this word, relationship, in the singular. The word was a term of art that only she knew the meaning of.
The last decades of her life were the opposite of what she desired. She was afflicted with depression, anxiety, and post traumatic stress disorder for much of her adult life. These disorders related largely to events she had suffered as a child and to the makeup of the brain she was born with. After she died, October 25, 2021, when I would picture her, when I would picture the person I had lost, my Mom, I would picture my Mom from 1985. That was the high water mark for me, a person of compassion and energy and wit, feisty and fiery under a cool surface, always cynical, always ready to tell you the way it really was. She had a wicked literary intelligence, a powerful engine of a brain that never stopped working. Her brain was a force. And she was also my Mom, loving, supportive, nurturing. She knew what to say, she knew how to comfort me, she knew what I liked for dinner.
The last decades she was always apart. She fell apart, after the death of her mom and then her dad and then her brother. And then in 1997, I got really sick with cancer, and that was when she really fell apart. A part. To the side. In the back. To the front. Somewhere else. At times she explained that she was out ahead of us, preparing the way, like Jonathan Livingston Seagull, elevated to a higher spiritual plane. At other times she was in a gutter of depression, catatonic even. She was hesitant, reticent, watching, waiting, waiting for a signal to join, waiting for a signal to be OK. She would pull me in and push me away and then blame the world for standing at arm's length. She seemed like a person who was pretending to be her own self.
She was so fragile, oh my God, was she fragile. And so deliberate. How she held it all together, her household, herself, her persona, I don't know. She was like a ghost that had been given the power of touch. She operated around the edges and the in between spaces, the attics and cellars.
I worried about her constantly. She was a burden. She was my constant and primary source of grief for twenty-five years. I wanted to call and for her not to be home, for her to be fine, laughing, elsewhere. I wanted her to get better, to come back to me, to go back to being my Mom. She was afraid of me, she was afraid I could see her, that I called her bluff. I kept her away from me, I kept her away, at arm's length, to stay safe. She was a burden.
In November, 2019, I talked to her about moving into a nursing home. She had middle-stage dementia. I had taken her car away six months prior after three accidents in close proximity. I was worried she would kill someone, get sued, lose the money she needed for medical care and nursing care, maybe even create financial liabilities for her children. She couldn't keep track of her medications. Even when I set out which pills were for which days, she didn't understand days or times so she would take too many pills or none at all. "These pills are for Monday," I would say. "What is Monday?" She got lost in the grocery store. She got lost in the gas station. She called me one time because the power was out, worried she would freeze to death. It was sixty-five degrees. I asked her if she had a coat or blankets. She had not thought of that. She had not thought that if she got cold she could put on warmer clothing, or use a blanket, or get in her bed. I worried she would lock herself out of her house in the dark or the cold. I worried she would forget to turn the stove off. She fell one morning in December and collapsed into her cherry-wood nightstand, fracturing a rib. She stayed on the sofa for three weeks recuperating. After that she was ready to move into the nursing home.
I got everything ready. I planned it all out in my mind, like how God must have made the earth and everything upon it. I went to the nursing home, one times, two times, three times, saw the space, studied the layout. I went through all of her furniture, clothes, dishes, imagined them in the space. She would be moving from 3,000 square feet to 400. Smaller, but this would mean she could take all the nicest things. I drew it all out.
In the sketch, in the lower left hand corner is a beige comfortable sofa, then a rectangular colorful rug on the floor, and a television on a black television stand. To the left is a comfortable plush beige chair. The door to the hallway is on the right-hand side in the open space. Above that a bathroom with toilet, cabinet, and shower. The bathroom had a new laundry hamper, a shower stool, two little white cabinets for toilet paper and toiletries beyond the built-in cabinet. Then a bedroom with a closet. No room for her queen bed - we would bring back her beloved brass headboard from her youth. I bought her the nicest bed she had ever owned. A large dresser, a secretary, a nightstand -- all her best pieces of furniture, full of her clothing, books, and things. We installed a little etagere shelf displaying her nice weave basket and her favorite books. Next to the sofa was an oval end table of fine quality, quarter-sawn wood, a piece she had purchased in the early 1980s when she worked as a nurse. I acquired a bright modern lamp with three telescopic arms to light up the corner and ceiling. The rug in the center of the living area was colorful--red, beige, dark brown--and brought everything together. On the other side of the couch, a beautiful torchiere lamp, brass with a red lampshade. I bought her five colorful pillows for the couch.
In the nursing home, she would not need to worry about bills or money -- I would take care of all that. It had taken me weeks, months, years, to comprehend and takeover her financial situation. Her room would always be the right temperature -- they would see to it. No snow to worry about, no rain, no maintenance. Nothing would break and if it did it would be fixed immediately, at no extra charge. They would make sure her television was working, they could change the batteries in the remote control. No bills. No bills! My God, no bills! Wouldn't that be amazing. She was always so worried about the bills, the bank, the taxes. Never think of it again, I told her. From this day forward, you will never need to worry about anything that comes in the mail. Ignore it. Throw it away! I've taken care of everything!
I told her she would meet people, in the nursing home, of her own age, in her own station of life. They could be friends. They would all have nothing but time. They could watch TV together, go on walks. They could eat together in the cafeteria, three times a day. There was an exercise room. A pool table. A park across the street. If all she did, I told her, was go to breakfast, lunch, and dinner each day, it would be more social interaction than what she had had in her home the previous years. Maybe the food would not always be delicious, but she wouldn't have to make it, or buy it, or store it. Besides, you could order a sandwich or a hamburger and a Coke whenever you wanted, you didn't have to eat the entree.
The end of January, 2020, we moved her into the nursing home: we being my Dad (divorced), my brothers, my spouse, my brother's spouses, my mom's friend Carma, several of my Mom's grandkids including my daughter Bella. Everything fit exactly as I had planned. Precisely. I had gotten in right down to the inches. The space looked nice. It was a nice apartment. My brother Eric always called it an apartment, not a room or a hospital room. At my Mom's funeral Eric would describe my work as something akin to Germans planning to invade Belgium in WWII. It was a nice room, it was indeed more like an apartment. I brought new bath towels, new hand towels, new dish towels, new wash rags. She had all new bedding, nice sheets, nice comforter. It was better than most of the places I had ever lived. My brother bought a new colorful print for the bathroom -- abstract birds. She loved birds, she loved color. Artwork from her previous house was all through the apartment -- all the best pieces; only the best pieces had been saved; several original oil paintings. We had saved only the nicest things. The dishes, the books, the furniture -- it was all the best she owned. Her dishes were original Fiestaware from the 1930s. Something she had always saved and never used. Now it was her every day dish, for her to use. No sense saving it anymore.
It was really happening. She had done all the hard work. I had done all the hard work. We had done all the hard work. We had had all the hard conversations about not being independent, about needing assistance and support, about needing to be somewhere where they made the food for her, somewhere with medical help if needed. The whole building was full of people, and all she had to do was leave her room. Movie nights, BINGO games, church on Sunday, trips to the store, exercise classes. It was not where she wanted to live, but it could be a sort of life she had always wanted to have. Workers came by to welcome her. They gave her keys, showed her things. The calendar was full of activities. Everything was clean, organized, orderly. They were energetic and nice.
When I left her that day, everything moved in, we stood by the front door and talked. That's me -- the larger orange clay figure. That's her, the smaller white/purple/red figure. She was elated. I was elated. We had finally gotten to this place. We stood by the front door to her apartment. I needed to go home. She would be fine here. I had done the thing I was supposed to do as an eldest child -- take care of her, have the hard conversations; she had trusted me, even though it was hard. Now we had done the hard part, now it would get better.
The next day, Saturday, I went up to see her. When I entered her room, she was there and she cut into me. She needed me to get her out of there. Why had I put her there? By whose authority? Who had done this to her? Who was involved, other than me? Why had I done this? She could not remember all the conversations, the logic, the experiences that had brought her this far.
She explained she had had diarrhea all night. A man had come into her room, without permission, in the night. She could not stay here. It was not right. What other options were there.
(Later I realized she had diarrhea because the medical staff started her on a new antibiotic as sort of a default treatment for UTI -- they had seen her dementia as more dehydration and dizziness. And the man who came by, just one of the regular workers coming to check on her.)
She cut into me over and over. She begged me to take her out of there, She begged me. She begged me. She got on her knees and begged me. She cried and wailed and pleaded with me like I was God. She said she would sleep on the floor of my house. She said she would go anywhere but here. Couldn't I find a housekeeper of some kind and pay that person to live with her in her old house? Couldn't I find such a person? There had to be a way? Couldn't she sleep on my floor? Why not?
I didn't say the right things. I said many things but none were right. I swore at her. After all the work I had done to get her to this point, and it meant nothing to her. Every step we had taken together, to get to this point. Everything had been discussed before, agreed upon. Every piece of logic, every escalation to this point we had discussed together. It was not what I wanted, not what she wanted, it was what had to be.
She rejected all that. Those conversations had not occurred. This was a con job. This was a prank. This was locking up your Mom. This was neglect. There by the bathroom we stood and argued for a long time. I told her she was goddamn stubborn, that somehow having been there less than a day she thought she knew her whole future in the place.
Other people came by to help, to take their turns. Her friend Carma, my Dad. My brother Eric stayed the whole night into Sunday. We got her through the weekend, she survived the weekend, with help from family, friends, and lots of extra pills.
February was hard but she started to get into the habit. She would go to the movie nights, she would play BINGO, she liked to have lunch and dinner in the cafeteria. She made a new friend and they would walk long distances together. She didn't like it, but she was starting to get into the habit.
I wondered how she spent her time, how she filled up the day. I liked to think of her in her apartment, watching television, making a snack. Maybe when they brought in her breakfast, she would have them bring it to her in front of the television. Maybe she would eat her bacon and orange juice slowly and enjoy the morning news. Maybe they would bring her around a newspaper. I pictured her sitting at her secretary in her bedroom writing notes or letters or cards. I pictured her getting an ice cream bar from her freezer. I imagined her being unaware of the time; so much to do.
But when I visited her in the weeks that followed, she was always taking a nap on the sofa. I would come in the door, look across the room, and she was always on the sofa, her head against the wall, feet towards me, and she always had on a blanket. Nothing else had been touched. The ice cream bars in the freezer were the same as they had been the last time. The food in the fridge untouched. No dishes in the sink. No garbage in the garbage. The TV off. The bed made. The secretary and its chair and its things all unmoved since last time. I had the idea that my visits needed to be productive or task-oriented. I should have trimmed her toenails, her fingernails. I should have taken her on a walk. I should have read her a book. I should have listened to a CD with her. I should have looked at photo albums.
But she was on the couch and I was always tired. I have always been tired. I can always take a nap, anywhere, any time. So I would sit down next to her.
She would wake up and say, "Hi Scotty," and was delighted to see me. She praised me for visiting her. She thanked me for everything. Then she would say how horrible the food was, every meal mystery meat shrouded in gravy, or how no one in the building but her had any conversation skills, or how dreadfully overpriced the whole thing must be. I knew she had done things during the day, left her room for food. But she would deny having done anything, or she couldn't remember. I would try to spend time with her without answering her questions, without a line-by-line response to her concerns. She was there, I was there, we could just sit together. That's all there was for either of us to do, sit there. I would think about going into the bathroom and organizing her things, or checking her laundry, but I was so tired, and just wanted to sit there on the sofa. Often we would take a short nap together.
After my nap, it was time for me to go. She wanted to come with me, to come to my house, to visit, to stay there, to sleep on the floor. I told her I would be back soon. I had to come up with a ruse, a trick, a lie, to leave, some story about how I'd be right back, and why she needed to stay. Then I would leave.
As my visits were usually in the evening, she was often still tired when I left, and would stay on the sofa with her blanket. I came to understand she rarely slept on her bed, but almost always slept on the couch. As time went by and her dementia got worse, she didn't understand that her bedroom was also "hers," a place she could use whenever she wanted. She understood it belonged to someone else and nothing we said could change her mind.
In March of 2020, just before the pandemic, I went to the grocery store and bought several boxes of ice cream sandwiches and put them in her freezer. The expensive kind, the best kind. Fat Boy ice cream sandwiches. Eskimo bars. Haagen-Dazs. When I was a kid, her father Gordon (my Grandpa Knell) lived alone, and had many wonderful ice cream sandwiches in his freezer. It was a type of generosity I attributed to him. I thought that the grandkids would be more interested in visiting if there was something good to eat. Maybe it would shape their view of my mother. My family and I also kept the fridge stocked with Diet Coke, apple juice, water, string cheese, and other snacks for my Mom and also for any visitors. Anyone who came by should get a reward of some kind.
But then the pandemic hit. We could no longer visit her room. All visits were short visits in the front room, with surgical gloves, glasses, masks, a gown. And then that ended -- all we could do was visit her through the window of the front room, us on one telephone, her on another, waving at each other. It was October before I could visit her room normally again. I looked in the fridge. All the ice cream sandwiches, string cheese, juices, were now expired. She hadn't touched them and no one had visited her in her room. I threw out all the expired food.
Around this time, she began having severe and frequent hallucinations. A group of women on a tour bus, she said, came to stay with her. They were dressed in white robes and slept on the floor. The nursing home had allowed them to sleep on her floor, she said. This, she said, was a therapeutic visit. At other times she told long stories of bus rides. She went on a bus ride full of horses. Another time the bus was full of bears. Often the bus would take her to a school for autistic children in Salt Lake where she would watch the children. She communed with her parents. She began to believe that me and my siblings were still babies, dependent. She worried one time that my brothers and I were locked in the trunk of the car. Then my father, from whom she had been divorced for twenty-five years, also became a baby that she worried about. Sometimes she told stories of being stuck in a warehouse in West Bountiful or the west side of Salt Lake City. Many times she told stories of being trapped at a similar nursing home in the mountains. Police and military were often trying to harm her. One time she convinced me (I went along with it) that I needed to get psychiatric medications for my own self so that I could break myself out of a nursing home in which I was kept prisoner.
She was now falling frequently, daily even. One time she hit her head hard. She was also a flight risk. She tried to leave the building without a chaperone, again and again. She pulled the fire alarm. They told us it was time for her to move into the locked memory care unit.
When we moved her downstairs to the new unit, I was able to again handle everything we had bought for her and put into the apartment in the first place; her apartment, room 254, had never really been lived in. The towels, the sheets, the dishtowels, the dishes, the candy, everything was like new. She would use one towel over and over, for example. The rest were untouched. She had used a few rolls of toiletpaper, some toothpaste, lotion. She had slept in bed a few times, but mostly she slept on the couch with her blanket. Her movies and books were untouched. Nearly all of her clothing in the closet was the same as it had been at the first. She wore a few things day in and day out. Her dishes were never used. The food and candy in the kitchen were untouched.
I had thought that moving to the nursing home would be a new phase of her life, a Utopia of sorts, a place where she would no longer have to worry about money, bills, food, safety, her own comfort. I never thought she would love it there, but I thought she could enjoy that time in her life, that level of structure, surrounded by other people of her same age. A place with a community all around her separated only by her apartment door, should she choose to leave her apartment. If she didn't love it there, at least it could be less bad than some of the prior years of her life where she suffered so much with depression and anxiety.
Instead, my dream for her could not be. Utopos means a perfect place, but it also means something else, the place that cannot be. A place that does not exist and cannot exist. If such a place existed, it could not exist for my Mom. My Mom had searched her whole life for a place where she could fit in, a place that would be easy for her, a natural place, a river unfolding. Going into the nursing home, she was a lot sicker than I realized, than anyone realized. She didn't know what day it was, what time of day it was. She quickly could not recognize the difference between night and day. She had no navigational skills. She had significant memory losses. She had major delusions and hallucinations accompanied by depression and panic. Her body was there but her mind had been gone for a long time.
Anyway, I tried to give that to her, that piece of dignity, I tried to make room 254 into her home. I wanted to mitigate against the loss of independence and the damage to her brain. Maybe if it were physically nice it would be more bearable. Maybe it could be a pleasant place to spend the final years of her life. Maybe there were new experiences still to be had. I don't want to say the effort to make her apartment livable and nice was a waste, because it was for her, it was intended for her. But it was a waste in the real sense -- something that never got used, something that had no purpose.
Which is fine. In retrospect, as my brother says, "she went there to die." She was very sick. Even though it was an apartment, it was more of a hospital. Her body was still physically strong, she was only seventy-five years old, but her brain was dying, her brain was fried, her brain was an exploded fuse, melted plastic and fried wires, connections kept together with dust and smoke and sparks. Her powerful brain had done double time, like the mental equivalent of the mangled body of a former NFL player chair-bound and broken in early age. My Mom's brain was taxed and tired and there was never a chance going into the nursing home that she was going to pull out.
So we saw this building, her room, her apartment, her furniture, her things, as a place to live, a place to have a life -- she saw none of that. None of that meant anything or even made sense to her anymore. Her appreciation for what we put around her was the same as a cat could appreciate being in a fancy furniture showroom. It made the same difference as giving a dog a bed made out of silk instead of flannel. She was out of sorts, in the wrong place, not at home -- for her there could never again be a home. She was surviving from one day to the next, one moment to the next. The only things that counted anymore for her were the times that family or friends would come sit with her. In a place beyond time and words she drew comfort from those she loved until the very end, but the rest was an elaborate trompe-l'oeil.
I know why I did those things, I know why I took so much care to make her apartment nice. Because I could. Because of the distance I felt between me and her, it was hard for me to nurture her, to give her unconditional love in the way she needed. It was hard for me to just love her and spend time with her. Fortunately, I was not the only one, there were other family members, other friends, who were better at spending time with her, at just being present with her. I am thankful for them, that they were there.
I wish I could have given my Mom more comfort in her final days. I did what I knew how to do, and it didn't work. There is a sorrow, there is a grief, there is a void. I'm angry at her for the Mom she wasn't when I needed her in my adult life. I'm angry that she stopped being my Mom around the time of junior high. I'm not angry, I'm sad. I'm sad for my brothers, too. I'm sad for her. I know she wanted that, too. She couldn't give that to herself anymore than we could give it to her. I believe in the life after this one. I worry that she is now the person I knew the last years of her life, that the Mom I knew is always lost to me. I worry that she lives on eternally as the flawed person I knew at the end.
Of course I don't believe it -- I don't believe that a person is frozen in time as a physically or mentally flawed version of themself. I believe it must be, it must be possible that she be restored somehow to the best version of herself. I don't know that. I haven't seen any angels. I don't know anything about that. I hope that is the case. I want that to be true. I hope that place she was always looking for was a place she didn't find because such a place doesn't exist on this earth. I hope she has found it now. I really hope for that. I hope when I see her again that she is busy, that she hasn't enough time for naps anymore, sure, maybe now and then, but not a daily nap. I want to sit down by her side to feel my Mom sitting next to me. I want to sit by her so she can comfort me, so she can ask about me, so she can tell me how great I am. I want to be with her not so I can help her but so she can be a strength to me. I don't need her help, I am strong, I am a tree, but I would like to feel her support of me, her unconditional love, I would like to know that she is looking out for me.
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