Tag Archives: Huntington’s chorea

Hostages

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Yang

I recall the first time I heard an RN supervisor describe a resident as “demanding.” To me, the word “demanding” always carried connotations of a threatening, fist-in-palm kind of urgency. So when I walked into Freddie’s room, I was surprised to find a polite and mild mannered man. He just asked for a lot of things. It occurred to me that “demanding” means something a little different in a caregiving situation than it does elsewhere.

Freddie was young for a nursing home resident; half his caregivers were older than he was. He suffered from Huntington’s chorea, like his mother. He witnessed the disease gradually take her and he knew what was coming. And yet, if he was afraid, he didn’t show it. I wondered how I would respond if I faced the same thing.

He “demanded” a lot of our time. Frequent trips to the bathroom, assistance getting in and out bed several times a shift, fiddling with his TV and VCR remotes (this was a few years ago‚Ķ) that never seemed to work right, special food requests, help making phone calls, helping him deal with the mountain of personal items he had brought with him, which only grew after he moved into the facility. Sometimes the carelessly assembled pile of stuff on his nightstand grew so high that gravity would finally take it and we would find the mess sprawled half way across the room. He was one of ten residents in his care group, but he could take up more than half his caregiver’s time. He was always either on the light or, when up, approaching his caregiver – or any staff member – with some sort of request.

Conflict was inevitable. Caregivers found it difficult to keep up with all that Freddie wanted and still meet the basic care needs of the other nine residents in the group. Some resented his requests and argued with him or just ignored him. Others tried to negotiate and set limits. The social worker spoke to him several times a week. But neither “side” actually ever adequately adjusted. There was always some issue, some trouble.

The more enlightened staff, including the social worker, looked at his behavior from a psychological perspective. He was simply acting out his fears and frustrations, grasping for some shred of control to help compensate for what his condition was taking from him. A drowning man desperately grabbing for the nearest object. And we were the nearest object.

Our RN supervisor supported her aides by explaining to the social worker that Freddie was keeping us “hostage” with his ceaseless demands. In a sense this was true. Rarely did he ask for just one thing and let you go. It was always a series of tasks, one thing leading to another. While he was mild mannered, he knew how to manipulate and once he got your attention, he wouldn’t allow you to escape politely.

In the context of a care group, where he was only one of ten people, Freddie’s demands were unreasonable. But here’s the thing: had he been on the outside, nothing he wanted would have been considered out of the ordinary by any reasonable standard. He simply refused to adjust to this environment, quietly insisting that the environment adapt to him. In this place of rigid routines and ratios, this was a cardinal sin.

They eventually moved Freddie to another unit. After a few months of struggling with the staff there, the disease reduced him beyond the ability to make requests and the issue was resolved.

These days, I think someone like Freddie would probably go into Hospice. The problem is not all “demanding” residents qualify for that service. And we are left with the same old paradigm that makes hostages out of caregivers and residents alike. To break out of it takes more than just a change of attitude, it requires more workers on the front line and a flexible approach to how they are assigned.