Wheelchairs and Dementia

Romeo doesn't walk much. He's unsteady on his feet. The staff at his nursing home takes him for walks during the day, and I also get him up and walking around a bit each time I visit.

Romeo seldom uses a walker, as he can't get his mind around how to use it. So he's in a wheelchair much of the time. Even so, he can wheel himself around for only a short time. He forgets how to do it. It also takes him a long time to find the brakes and set them, if he can manage at all. And when he goes tooling down the hallways, he gets lost and doesn't think to ask for help. Eventually, someone comes by and asks him if he needs a push to his room or wherever he wants to go.

Romeo's wheelchair is alarmed (so is his bed). Whenever he gets up, an alarm sounds to alert the staff. Romeo is not to get up without assistance, and rightly so because of his balance issues. The first week he was in the nursing home, he fell twice because he didn't remember he needed someone to help him. The alarms went off, and the staff came running and the doctor came and X-rays were taken to make sure he was okay. He was. Nothing broken, no other injuries. Romeo is a lucky man.

When I get Romeo out of his wheelchair, I hold his arm with one hand as he rises and silence the alarm with the other. When we go for a walk, Romeo makes his way down the hall like a newly-crowned beauty queen, beaming with light and offering himself to passersby for their admiration and worship. They give it to him.

Romeo's wheelchair, like most wheelchairs I suspect, have removable attachments that hold footrests, a place for Romeo to rest his feet while he's being wheeled around. And there's also a problem with using them. Romeo simply can't follow directions like "put your right foot on the footrest." Dementia doesn't allow him to do it. He hears the instruction, but his foot does not receive the instruction. So he just sits there, or he'll move his left foot -- rather, he'll jerk his left foot around.

So when I'm getting Romeo to go out in his wheelchair, I'll kneel down by his feet, hold onto the foot we'll place on the footrest, and I'll tell him we'll put his right foot on the footrest, touching his leg as I do. Of course, this usually doesn't work either. He also can't understand the instruction to lower his foot, even while I'm applying steady pressure downward. He resists. Eventually, though, we get it there. We follow the same process for the left foot.

Complicating issues (there seems to nearly always be a complication with anything Romeo does) is his frequent muscle spasms. His arms, legs, or entire body can spasm at any time. We're working with his doctor to remedy this. In the meantime, when his legs spasm it throws his feet off the footrests. When I'm pushing him in the wheelchair, I can't see when this happens. I'll either feel a drag, or he'll make a noise. I stop the wheelchair to investigate and then start the entire process over. Putting his feet on the footrests is a major undertaking, and I am as gentle as possible with him.

Romeo, of course, can't control the spasms, just as he can't control the progression of his dementia. Going with the flow, accepting what's happening to him, is still difficult for him, as it would be for anyone. At this point in his slow descent, he is aware of what's happening to him, but he can't control it. He's falling and can't seem to relax into the ride. Who can blame him? Who wouldn't be afraid?

For now, I'm simply enjoying the fact that he can get into a wheelchair and I can push him here and there -- outside on the sun deck, down the hall to a lounge or computer room or activity room. The day may come when we won't be able to get Romeo into a wheelchair, when he'll be confined to bed, not knowing who I or anyone else is, not knowing who he is. Simply being in his confusion.