When my time comes to depart this earth, I want it to be unexpected and swift. I want to be doing something innocuous like reading the paper one moment then be instantly dead. Is that too much to ask? Perhaps in the afterlife I would regret my decision. Perhaps I would have wanted closure. Perhaps I would have wanted one more opportunity to tell my family how much I love them. Perhaps, just to be on the safe side, I would have wanted time to call a priest over and make a final confession, just in case all that Catholic mortal sin stuff is true. (“Bless me father, I have sinned. It has been 32 years since my last confession or even went to church.”)
However, if I reach the point where I cannot care for myself I will most likely be like my mother and end up in a nursing home. Her nursing home is probably better than most. Renaissance Gardens at Riderwood is, if nothing else, a clean and attractive place. It helps to be in a new building. The lobby is broad. The windows are plentiful. The receptionist smiles. The floors shine. They had better. Because nursing home living here is not cheap. It runs about three hundred dollars a day, plus expenses.
I blanched when my father told me the price. I remember being shocked to pay $700 a month for day care. Nevertheless, three hundred dollars a day? That is over a hundred thousand dollars a year! I had best take out a long-term care policy right now. College is but a drop in the bucket compared to the cost of slowly fading from this world.
For that kind of money, I would expect more amenities. But the reality is that when you are in a nursing home you cannot appreciate amenities. You want the basics. My mother gets a hospital bed, a small closet, a nightstand, a sink and her own bathroom. She gets a call button that summons an aide. With luck, he or she will arrive in a couple minutes. Of course, it often takes much longer since you are likely in a queue. One resident next to my mother’s room still has the power of the human voice and he is not afraid to use it. “Nurse!” he bellows on and off during the day, very loudly until he gets attention. It makes my teeth rattle. Fortunately, my mother does not seem to notice the noise.
She is however sensitive to light. Even in a room with a northern exposure and with the blinds drawn, the light is still a trial. Therefore, the lights in the room are usually off. However, her door is typically open, so lights from the hospital-like corridors usually bleed through.
There is no such thing as privacy in a nursing home. Generally, she needs help for everything. Help into bed. Help out of bed. Help to the toilet. Help getting off the toilet. Help into her wheelchair. Help getting out of her wheelchair. Help putting on her shoes or slippers. Help brushing her teeth. Now she often needs help eating.
I have been visiting her around noon so I am often there for lunch. When you have a group of people and about half cannot feed themselves, you end up with one aide for every two or three residents in the dining room. This nursing home has a nice dining room. It has tables with linens, cloth napkins and real silverware. Each resident gets a printed menu with the choices offered. There is a cafeteria line on one side of the room but the residents do not wait in it. Instead the aides do, fetching food for the residents. About a third of the residents cannot feed themselves. My mother has reached the stage where she cannot eat everything on her plate by herself. I had to tear apart her chicken so she could eat it. Salad is increasingly challenging for her. She cannot easily get a full fork full of salad, so I find it is easier for me to feed her a forkful at a time.
Despite the table linens, despite a pleasant staff, despite decent but unexceptional food I find the dining room a dispiriting place. The woman sitting next to my mother is a recent stroke victim. She cannot speak but she can sometimes grunt. It is hard for her to tell people what she wants. In addition, the last time I was there it was hard for her to get attention. A plate of food was put in front of her but due to her stroke she could only reach the left side of her plate. She gave me a nod when I asked her if I could cut up her food. She looked grateful and sad at the same time. She must have had plenty she would like to say, but no way to articulate it. I kept up one side of a conversation, and held her wrist a few times to let her know I cared.
Others sit in front of their meals with vacant stares. The meals arrive in stages. It may be ten minutes or more before the next item appears. Only a few talk or even want to talk. With a few exceptions, they do not appear to know each other’s names.
It is summer but the day is neither too hot nor too humid. I take my Mom outside into the garden. It is a nice garden with a flowerbed and an artificial waterfall. Even with her sunglasses on it is too bright for her. We find a shady spot and admire the flowers. For a while, I can take her mind onto other thoughts. She identifies a few types of flowers that I cannot name. I am glad to see that she retains a good memory.
We pass by a room (it is Sabbath) where a Jewish worship service is in progress. Only a few of the worshipers appear to be residents. Family and members of local congregations fill out the service. In another room, we pass by a dozen residents arranged in front of the television. Rhett Butler and Scarlet O’Hara are talking but no one is watching. Two thirds of the residents are asleep in their wheelchairs. The rest are looking blankly at nothing.
Such mild activities as a ten-minute trip outside are still taxing for Mom. After lunch, she wants to rest. With the help of an aide, we get her into bed. As she naps, I sit in a chair and try to read a magazine in the poor light. I cannot concentrate on it. Instead, I concentrate on her breathing. Every breath seems an effort. I wonder, does she need oxygen? About the time I am figuring that out she awakens. Moreover, she is anxious. She is suddenly upset about her bowels not moving. And she is convinced the nurse’s aides hate her because she so often requests to use the bathroom and nothing happens. I talk to the nurse on duty. He assures me that no one minds how often she calls. Nevertheless, later when I talk to my Dad he says that some of the aides have given her a hard time in the past. It is hard to discern what is true and not true. My mother does not always seem to be totally there.
My mother’s PSP condition has progressed to the point where she can no long read. Nor can she watch TV. She can take short naps of thirty minutes or an hour at a time. Otherwise she is awake and in bed. Unless there is company (my father pays twice daily visits), there are only her thoughts for entertainment. Otherwise, her days consists of three meals (usually in the dining room), physical therapy, dressing and undressing, and often-unsuccessful visits to the bathroom – all with assistance.
I do not know what passes for her thoughts during these long and lonely hours. I would hope she would be remembering pleasant parts of a challenging but often rewarding life. However, it seems she is more focused on her present than the past. And the grinding reality of nursing home living is her present. Days become increasingly difficult, frustrating and laborious to get through. If her life were a movie, you would expect the scene to fade to black. Instead, every day life slowly diminishes. This is her reality of dying.
When she dies, I do not think it will happen in a moment. Rather she will gradually slide into oblivion. Some part of me hopes this happens sooner for her rather than later. And I suspect that she agrees.