It was winter, and I’d been seeing Raymond in his home for occupational therapy for more than a month. The home health agency physician’s orders had been to evaluate and treat him for home safety, and I was working closely with the nurse and social worker from the same agency.
Unfortunately, the social worker and the nurse were at odds over the need for Raymond to move into a nursing home.
The facts were stacked against him. He had ALS (Lou Gehrig’s disease). It was progressing rapidly. He lived alone, and he had no in-home help beyond the twice-weekly personal-care assistant (PCA) that he qualified for.
“Are you with me?” the nurse had asked me after our first team meeting to discuss Raymond’s status. I’d said yes, but regretted it immediately. Being “with” her meant moving Raymond into a nursing home—a move that both Raymond and the social worker firmly opposed.
A month earlier, when I’d arrived at Raymond’s apartment for my initial occupational-therapy evaluation, three things had struck me immediately.
The first was Raymond himself. A recently retired maintenance worker who had lived alone for years, he slouched in his electric wheelchair, his chest and legs atrophied, a little drool trickling from the corner of his mouth, bits of food in his lap, his hair disheveled, patches of gray whiskers on his chin, clothes wrinkled and soiled from a week of wear, dirty-nailed fingers curled around his wheelchair joystick.
But then there were his eyes. A watery blue, they took in everything and said quite dramatically that he was still sharp and aware. Those eyes, I quickly learned, also held something else: an immense, unsuspected strength and resolve.
The third thing that struck me was the large table in the back room of Raymond’s home. This was where he kept his extensive collection of miniature model airplanes, including dozens of Spitfires, Messerschmitts, Stukas, Henkels and more. Underneath the models, he had a full map of Great Britain circa 1941, with each plane placed strategically where historical air battles had taken place between England and Nazi Germany. On the shelves behind the table, he had stacked hundreds of books, nearly all of them on World War II, aviation and the Battle of Britain.
During my initial evaluation, after Raymond had showed me his extensive collection, I’d made the mistake of saying that I would help him stay out of the nursing home—words that I immediately wished I hadn’t said, given his obvious limitations.
He definitely was not safe to be alone, and I soon learned that I couldn’t make him safe. He was dependent for dressing, could not safely get in and out of bed or on and off the toilet, and could barely get himself a drink or something to eat from the refrigerator without falling out of his wheelchair. In fact, he’d recently had a series of falls. It was only a matter of time before something terrible happened.
For all of these reasons, and because of the need to involve his elderly brother in any decision-making process about his situation, we had decided to hold a team meeting in Raymond’s home. The plan was for us all to arrive at Raymond’s house at the same time, and for Raymond’s brother to join us.
The social worker and I arrived in close succession, but the nurse called to say that she was held up with another patient; and Raymond’s brother never showed up.
Raymond greeted us at the door with his usual flat expression.
“Have you thought seriously about what we talked about last time?” asked Sarah, the social worker, a tall woman with striking black hair.
Raymond nodded.
“And?” she asked.
He mumbled something too soft to hear.
“Can you say it louder?”
“I want to stay.”
“Okay,” she said. “That’s all I needed to hear.” She looked at me with her dark eyes and shrugged. “He’s mentally competent, and it’s his decision.”
“Can we go into the bathroom?” I asked.
Raymond nodded and hummed his wheelchair into the bathroom. Sarah and I followed.
“Can you show me how you get on and off the toilet?” I asked.
He grabbed the sliding board beside the toilet and shimmied about halfway across before nearly toppling over.
I grabbed him and helped him back into the wheelchair.
“Okay, let’s go into the bedroom now.”
Raymond trundled into the bedroom as we followed. He had a hospital bed, fully equipped with everything. This was better: He slid into bed relatively safely. But once in the bed, he struggled terribly to maneuver, and getting out of the bed and back into the wheelchair was a disaster, requiring a near maximum assist on my part.
“You know this is unsafe, right?” I asked.
Raymond looked at me with those bright blue eyes and nodded. He mumbled something.
“Excuse me?”
“I sleep in my wheelchair until help arrives.”
“Okay, but what about using the toilet?”
“Urinal.”
“But what about bowel movements?”
“Diapers,” he said. “I don’t go much.”
I looked up at Sarah. What was I supposed to do?
Raymond was obviously unsafe—but he was cognitively competent, and he wanted to stay at home. It was his choice, and I knew that I wasn’t going to change his mind.
Sarah didn’t give an inch. Arms folded over her chest, she shook her head.
Raymond’s blue eyes darted back and forth between us. He was clearly upset.
He probably feels I’ve betrayed him, I thought.
“I’m not going anywhere,” he said. “You have no legal right.”
Sarah looked at me. “He’s right. The Department of Human Services won’t do a thing. He’s mentally competent.”
I touched Raymond’s arm reassuringly.
“It’s your choice,” I said.
Raymond nodded, blue eyes calming. I think he believed us.
“I really don’t have anything else to offer you at this point,” I told him. “I’m going to discharge you from occupational therapy.” We all knew that he would still receive services from the nurse and social worker.
Raymond nodded again and hummed his wheelchair toward the door, eager for us to leave.
We said goodbye. As we made our way out through the hallway, I felt uneasy. The situation didn’t feel right—if that was even possible, under the circumstances. Outside in the parking lot, Sarah called the nurse with the news, and we drove off to our next patients, leaving Raymond to his home and his fate.
———————-
Postscript: Raymond held firm and lived out his remaining few months as he’d wished–in his own home.
3 thoughts on “The Battle of Britain”
Following a fall and pelvic fracture, my mother, then in her 90s, was sent to a rehab/nursing facility. She was supposed to stay four weeks . After one week, I took her home. Although this was considered a very good facility, the care was distinctly sub-par. Moreover, my mother’s reaction was to retreat. She stopped eating, did little communicating, and was clearly very unhappy.
I had promised to keep her in her home. Fortunately, there was enough money to pay for 24/7.aides, who cared for her attentively and lovingly. She remained in very good health, though cognitively in poor shape, until she died in her sleep at the age of 103.
Had she stayed in the facility, I have no doubt that she would not have lasted a full year. It shouldn’t take privilege and the financial ability for everyone to have the kind of home care from which my mother benefited. Raymond was so wise to insist on staying in his home.
If only Medicare would pay for a home health care aide for people like this
elderly man for 2-3 hours day 7 days a week.
That person could get him to the toilet where he might well have a bowel
movement during those 2-3 hours, bring in food for breakfast, make him a
dinner/lunch , change his sheets, and change his diapers when she came in and before she left.
That would be enough to keep him relatively comfortable & safe,
If you have ever visited a nursing home, or “assisted living facility” you
would understand why many elderly Americans don’t want to be there.
It also would cost the govt. less to provide them with home health care
for a few hours a day that to finance these nursing homes & assisted living
facilities which many older Americans hate.
For some, a very good “assisted living facility” might be fine, but
the majority would be better off at home with a kind, competent
home health care aide coming by for a few hours a day.
Nicely told, thank you. As a primary care physician I completely identify with the conflicting loyalties here. Indeed will be doing a home visit in a few days to a very incapacitated longstanding patient and his partner who want him to stay at home even though he now needs 24/7 care. He however is no longer decisional..