I wrote this a few years ago, when my Mom was still alive.
I suspect we most clearly demonstrate who we are when we respond to the weakest, the most vulnerable, the least pretty, the unwanted. I think I am beginning to learn who we are via the modern geriatric facility.
There are certainly all kinds of people to be found at work there. There are people who do their jobs and go along to get along with the culture they’re plunked in; and there are people who go about their jobs with objective integrity, beholden to no one but the source of the highest truth they recognize.
Thank God for those people. I think the culture in which they work is making them swim upstream.
My mother is in her upper 90’s. Until three years ago, she lived alone. She needed no medication until she was over 90. She has lived a life of determined independence and no nonsense.
At the same time it was a life of willing service and self-sacrifice. Her one marriage was no picnic and she usually worked alone. She raised six children and helped cared part-time for several of her grandchildren. Her direct descendants number over forty. It has been a self-determined life of solid accomplishment.
The mind of this housewife was more sharp and active, her judgements on current events more insightful than many much younger, who would think themselves much more in-the-know.
Then, mini-strokes, a stroke. Dementia. There is no short-term memory. She is helpless against emotional vicissitudes.
We cared for her 24/7 in her home for three years. My siblings and I and three aides divided the time. She used a walker and got around in her home. She ate well, was healthy, and watched a lot of TV. When this lady who never went to bed caught a bug and ended up there nevertheless, she recovered but still couldn’t sit up in bed. We couldn’t do for her what she needed, she wasn’t going to get up, and she was developing a pressure wound.
At the same time, she was finally running low on the money my Dad left her thirty years ago. In a little while she would not be able to pay her bills or hire the aides. So it was time. Time to go to a home. They would take all she had, and care for her for the rest of her life. She would have rehab, treatment for the wound, and a home til the end. That, to my understanding, was the deal.
Unfortunately my siblings and I were under a misapprehension that a place which operates for the stated purpose of caring for elderly people is prepared to care for elderly people. That such a place should not be surprised when elderly people are people: that they are imperfect, retain their personalities and independent thoughts; nor when they are elderly: that they are cranky, ill, difficult or have dementia. When they are not entirely in control of their feelings or their actions, when they are not entirely compliant.
My mother couldn’t remember where she was or why she was there. When we weren’t there to answer her questions she filled in the blanks with invented content. The content was invariably paranoid. She reacted to her invented narratives–she was angry and difficult. She became belligerent. She tried to escape; she was going home.
She was not being a jerk. Her brain was wearing out. She couldn’t remember.
First they tried two medications. They didn’t work. The last few days, she was so heavily drugged she could hardly stay awake. But she never moved off topic: going home.
So they kicked this 96-year-old wheelchair-bound woman with dementia out of their place. Take her somewhere else. How quickly can you place her?
In other words, they took her in because she had dementia, and they kicked her out because she had dementia.
This private facility has a long waiting list. They could easily fill her half-room. And that’s what matters: all beds filled with people who aren’t much trouble.
We move on to Home #2. It is a state facility and for her it’s the last option. She does not know this, of course. What she knows is that she’s in another unfamiliar place, she can’t remember why she’s there, and I keep telling her she can’t go home just now. It’s bare and impersonal, and there are men with dementia who are permitted to roam into her room, mess with her stuff, and roam back out. When we arrive she usually has been looking for me all day. She’s fretting that someone told her I was on another floor and I had to go out. Or I’m finally there to pick her up from the store; she forgot to bring money. Or they arrested her and she wants to know how much she needs to get out.
The other home was homey. We personalized her space and everything stayed put. In Home #2 we cannot personalize the room. Her belongings have a way of wandering off.
One evening in week two, I am in the open bathroom washing my hands. I hear an aide telling my mother, disrespectfully and forcefully, that she must go to the bathroom and get on her nightgown now, as though she is an defiant child and the aide is an exasperated parent. I come around the doorway to find the aide standing over my mother behind her chair, with her hands on my mother’s arms, struggling with her. I still don’t understand what the aide was trying to accomplish.
Involuntarily I make WHOA-what-the-heck-are-you-doing sounds. The aide gradually backs off her manhandling but seems irked that we aren’t backing her up. She thought we would be cooperative in getting my Mom changed for the night. (By the way it is 7 pm.) She leaves the room.
I report this to the charge nurse and I am approached by an ascending order of supervisors to recount the incident. Every one is focused on the necessity for my mom to be toileted according to schedule. (I should have pointed out that my Mom is mostly continent; she will tell them if she needs to go.) Two days later, we meet with a higher supervisor and recount again. She agrees that the aide’s attitude and actions were all wrong. But my mother needs to be toileted at a minimum of every eight hours or all sorts of bad things will occur.
I point out that a young, fit person wrestling with a 96 year old woman in a wheelchair might cause bad things to occur as well. I am quietly puzzled that she seems to be more concerned with charges of neglect than charges of abuse. I press the point politely: what happens in the case of a non-compliant patient refusing to be toileted after eight hours? The answer: we must, and do, force them.
My mother was not compliant and would stay that way. It was the core of her being. She was old and weak but she thought she could take anyone. Doesn’t anyone else see the potential for harm?
Let’s be honest: the staff, the family, the culture– we see the nursing home as a waiting room for eternity. It is unspoken, but we actually perceive some human beings as unwanted.
Should it be that a good person who’s lived almost 100 years faithfully devoted to others, at the time when she is most vulnerable, weakest, most helpless, should suddenly have to adjust herself to other people’s priorities? Shouldn’t someone with 40 descendants be able to count on as much reciprocity as she needs? Is it countercultural to expect that someone in the most dependent part of her life should find that her world responds with that which she requires?
I contrast what I see every day with another scenario. My Mom surrounded by family, people she remembers and trusts. Feeling secure in the center of someone’s home. Her needs tended patiently for as long as she needs.
We did just this as long as we could. My mom had physically deteriorated so much that we could not adequately care for her. Even accompanying her in the shower resulted in mini-strokes. Soon after entering the home, it became clear that she needed medical expertise close at hand. The goal became: someone visting every day to orient and reassure her.
But institutions promote accomodation. Our default is the warehouse for people who are not easy, not pretty, not fun, not independent.
My Mom is so dependent, and yet she is very independent. Her current context responds unfavorably to her independent attitude, even while they resentfully suffer her dependence. One spends a lot of time staring at the ceiling in the dark, trying out plans for a better situation. But I’m afraid such plans are made difficult by the status quo and the desire we have to get on with our own lives, uninterrupted by someone else’s needs.
The real question: what does each of us do when the context tells us a given level of care is good enough, when the environment requires and expects a given level of care? How many of us decide our actions are adequate–or even good–because we have met the standard expected by the culture in which we work? And how many of us have a higher independent standard which requires a higher standard of care?
Won’t most people accommodate the context in which they work? And what if that context does not address the patients’ needs but some institutional self-interest?
I don’t want to suggest it’s all bad. By far most of the workers I have observed are doing their jobs with integrity and care. They try to relate to my mother kindly and she receives good care. Recently, they found a med which keeps her calm and un-agitated without making her druggy. They’re only people after all–trying to accommodate someone who is belligerent is just about impossible, and dealing with a pleasant patient is much better. So my mother gets along with her caregivers now, much of the time.
But I have seen what we human beings tend to do when we perceive the context we’re in as a settled given: we accommodate. And if the given expectations we’ve accepted are being challenged, the challenger too must be caused to accommodate. Only the few will put the needs of the challengers, like my Mom, before the institution’s expectations, because they act according to an overriding law.