I was sitting in the Rehab facility cafeteria with my mother and her roommate Julia, making desultory chat about the amount of starch in their lunch (considerable) and the fact that they had opted out of the Lunchtime Luau because it was almost 90 degrees and they didn’t want to sing campfire songs. Julia doesn’t hear well, and there was an embarrassing moment when I inquired at the top of my lungs about the relationship between a luau and campfire songs, only to find the room silent and all aides and employees looking at me as if I stood over the freshly murdered corpse of Bambi with blood on my butter knife.
I wheeled my mother into the “Leisure Studio,” basically a conference room with the standard table and chairs, a computer desk in one corner, and a florid mural reminiscent of that painter-of-light guy (Thomas Kinkeade?). Cabinets were labeled “Sewing Supplies,” “Craft Supplies,” and so forth; it seemed likely that the room was also used for residents who longed for activities beyond eating, sleeping, attending therapy sessions and watching television. I might have furnished the room with cozy chairs for knitting, a table with a sewing machine, and more hearty work surfaces for a little decoupage or beading, but it was clearly, mostly intended as a conference room. I moved chairs so that I could put my mother at the head of the table, and sat next to her. I am not above a little Machiavellian psych-out, and I thought it would give her a boost to be at the helm, as she so often was in her working days.
The staff reporting at the “Care Conference” filtered in. First the Nurse Manager, a petite woman who talked about her two-year-old son and asked if he would ever calm down. Next came the Social Worker, another small woman in tight, bright clothes and a warm smile for my mother. The Therapy Manager was less immediately delightful – not unpleasant, but vaguely defensive and visibly impatient with the chitchat. My father came in looking tired but handsome in a bright blue shirt that amplified the blue of his eyes; the resident dietitian followed him. The Social Worker convened the meeting.
We had all misunderstood the purpose of this meeting, as it turned out. By “all” I mean the members of my immediate family. It was not focused on getting my mother discharged by this coming Saturday, it was a “Fourteen Day Conference” that was a matter of institutional protocol. That wasn’t immediate cause for alarm; it just meant that I had to keep my eye on the ball. Maybe they were going to tell us that she had made good progress and could be released on Saturday.
The Nurse Manager gave her report, which was simply that all meds were being taken and there were no issues. I asked if there was anything being done that my father could not do at home, and she replied that there was not; everything was in pill form, and was pretty much the same as what he had been giving her for the past few years. Then the Therapy Manager started, reading from reports compiled by the physical therapist and occupational therapist. The patient “can’t stand without someone next to her, can’t walk without someone next to her, has poor balance, requires assistance with toileting, needs assistance with showering…” I could see my mother grinding her teeth, to my left. Blandly, this woman read a litany of un-met goals. We waited, patiently, until she was done.
“I’m sorry,” I said, “but my mother is perfectly capable of going to the bathroom by herself. She does it here quite often because no aides are available, and on Monday we had her out literally all day and she used several different bathrooms with no assistance at all.”
“I’m just going by what my therapist says,” she responded, “she shouldn’t be going to the bathroom unassisted.”
“But she can.” I said. My mother couldn’t stand it any more.
“There is no way that the therapist has any idea whether I can or cannot use the bathroom by myself. She has never asked me to demonstrate that I can, and we’ve never even discussed it. Furthermore, I am perfectly capable of getting into the shower by myself, and getting in and out of bed, walking with a walker, and doing anything else I need to do.”
“Well I understand how you feel,” the Therapy Manager said in her best pacify-the-angry-family voice, “but I’m just going by what I have here. It would be dangerous to let you go home if you can’t do these things.” The Social Worker, clearly operating from a base of personal gemutlichkeit rather than Sensitivity Training, put a hand over my mother’s.
“We don’t want you to get hurt, that’s all” she said.
“So,” I said to the Therapy Manager, “it’s possible that some of what your therapist indicated on her form is actually speculation based on observing other things, since she clearly hasn’t actually evaluated mom’s ability to use a toilet or a shower.”
Her face showed the first signs of real irritation. “No, I wouldn’t say it was ‘speculation’ at all.” The Nurse Manager rose, and smiled apologetically.
“I’ve got to get to another meeting” she said. “Nice meeting you all.”
“How would the therapist actually know whether she could use the toilet or shower safely?” I asked.
“They would watch her do those things,” the Therapy Manager answered.
“I am not going to use the toilet or take a shower in front of a stranger” my mother said, “I think you’re violating my rights and my dignity, here.” I held up a finger.
“You wouldn’t actually make her go to the bathroom in front of the person, or take her clothes off and take a shower, though, right?” I asked.
“Yes we would,” said the Therapy Manager, “we have to see that she can remove her clothes without losing her balance, and that she won’t slip in the shower.” I detected a faint note of triumph. I decided to try re-centering myself, Buddhist style. Breathing in, I feel frustration and anger, breathing out I feel compassion for the hard workers in this room, and their good intentions. It kind of worked.
“I am never going to go to the bathroom or strip in front of a stranger,” my mother said. “I’ll leave AMA before I do that.”
“The thing is,” I said, “I know for a fact that she can use the bathroom on her own, and my dad has helped her in and out of the shower at home for quite a while. He’s installed grab bars, and a bench.”
“Well, we can’t just go on your word for that” was the answer. I lost my Buddhist composure.
“I think you are protracting her stay based on her failure to meet goals that are either irrelevant or have not been explained to her so that she can prove that she can meet them” I said. “I think that this is not the least restrictive environment, and that there’s more to getting better than therapy sessions. She can’t sleep here, she has no privacy, and she needs to be with my father. He’s running himself ragged going back and forth three or four times a day. I think maybe it’s time to think outside the box a little bit.” She shuffled her papers and shot me a murderous look.
“We can’t just send her home without knowing that she will be safe.”
“You can’t send her home worrying about a law suit.” My father raised a hand.
“May I tell a story?” he asked. He is still a college professor, a Harvard man, not a person easily refused the floor.
“When this person,” he gestured towards me, “was in the second grade, we received a call from her teacher who was very concerned that Annie wasn’t doing her ‘Reading Readiness’ activities. We explained to her that she could already read, and had been reading since she was three or four. She was still insistent that if everyone was doing those activities, Annie should be doing them as well. We had to get the principal involved to get that woman to understand that it was a better use of time for Annie to spend that time…reading. I see that same kind of rigidity here.”
“It isn’t ‘rigidity,’ sir; my therapists are following the goals set when your wife came here.”
“Can we talk to the actual therapist and ask her how she came up with her conclusions?” I asked.
“The therapist is out sick today, unfortunately.”
“Of course she is” my mother muttered.
The Social Worker cleared her throat. “I have an idea. How about this: we can discontinue OT and note that the patient refuses, and that way there will be no more work on toileting or showering.” We all nodded. “Then we just do PT and work towards having her be able to stand, walk, and transfer well enough to be safe.”
“Is it maybe possible to tell her what the goals are?” I asked. “I think she might do better if she had any idea what she had to do to be released, and I know that no one has ever told her.”
“Like preparing for a test,” my mother said. I nodded.
“Sure,” the Therapy Manager said, making notes on her pile of papers. It was clear from the way she held her pen with white fingers, and the set of her jaw, that she did.not.approve. She may, in her personal life, be a lover of kittens and babies, a gardener who grows large fragrant heirloom roses, or a Harley owner with a full and glorious set of black leathers. At work, however, she was a martinet who liked to color well within the lines and who cleaved unto protocol, rules, and risk management. I saw no recognition of my mother as a whole person, or of my family as frayed, emotional and raw after a long siege. “I have to get to a meeting,” she announced, standing.
“I’m sorry,” I said reflexively, looking into her eyes and seeking some sign that she understood that we hadn’t meant to attack her personally. She looked away, turned, and left, clutching her file folder to her ample bosom.
“I worry,” my father said to the Social Worker, “that this unpleasantness may be taken out on Leah in some way.”
“I’ve got her back,” the young woman said, smiling. “I’ll be watching. So our goal is to get you out of here by next Tuesday – you show them your stuff, do what they want you to do, and you can go home. Deal?” She extended her hand, and my mother shook it, smiling back.
“Deal” she said. Our hero left, all red ruffles and swaying bottom, and it was just the three of us in the Leisure Lounge. I think we won the day, but the casualties remain uncounted.