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.

Slow Improvement in Dementiaville

Do The Gratitude Dance with us because . . .

Since the first few days after the fall, Romeo's condition has been improving. Slowly, the psychotic anxiety, hallucinations, and muscle spasms have all dissipated. We are grateful. Remnants of them remain so that he operates now at a lower baseline. It's too soon to tell exactly where, for now, the bottom is located.

One week after his fall, Romeo was discharged from the hospital and transferred to a skilled nursing facility (nursing home) four minutes from home. We are grateful. He is receiving physical therapy, occupational therapy, and memory therapy. He is becoming stronger, slowly. We are grateful.

So let's dance The Gratitude Dance again, because we, all of us, can smile, laugh, wiggle, and dance. We are HERE!!! Now, shake it!

The Fall and What Happened After, or Dementia Unleashed

Funny how one fall, one slip on the bathroom floor can change a life, two lives. After it happened nine days ago, life downshifted drastically in short yet powerful spurts. His physical fall was matched by a mental fall, and he lost ground quickly. Within one day, my husband, Romeo, went from having dementia to having DEMENTIA. He lost the ability to feed himself, and his sweet disposition morphed into one of psychotic anxiety and restlessness.

In the hospital now, he fusses with his blankets, tears off his hospital gown, picks at his clothes. He is ripe with innocent hallucinations. He grasps at the air, peels bananas that aren’t there, asks me to pull the needles out of his legs. I go along with it all, especially making sure he knows that I removed all the needles. He tells me that one of our favorite tea shops is closing (not that I know of). I tell him we can find another, and he is satisfied and falls asleep smiling. At last he is quiet and content and I can take a break from being with him in his dementia.

A short time later, he wakes up, and anxiousness kicks in. He is flailing about like a baby, arms and hands and head moving in short, jerky motions, hands grabbing at my hair and necklace. He squeezes my hands so hard (how can he have such physical strength?) that I must remove my rings to head off an injury. He reaches for me, misses, unintentionally grabs and bumps and punches me. He has a tight hold on my right thumb, and it HURTS! I ask him gently to let go of my thumb. He squeezes it tighter, not understanding. Still coaxing him to release my thumb, I try to pull it out of his hand. This only makes him squeeze harder. Finally, I manage to pull my thumb out of his hand – and he jerks and grasps the bed, as if he were falling and my nearly broken thumb was his only lifeline. I speak softly in his ear and hold him tenderly, oblivious to the swollen thumb and to the bruises forming on my arms.

The muscle spasms in Romeo’s legs begin at 6:00pm, slowly at first. By 6:30, they are becoming more frequent, more pronounced, more uncomfortable for him. Finally, an order comes through for the pharmacy and we anticipate relief. It doesn’t come. We ask the nurse to page Romeo’s doctor. No reply. Page again. The spasms come every 30-50 seconds, and they are so strong and painful that Romeo’s back arches during each attack. Still no doctor. The nurse says that the doctor is busy in the emergency room with some admissions. I get a brilliant idea and share it with the nurse. I tell her that we’ll take Romeo to the emergency room so he can see a doctor. Shortly after that, the doctor showed up.

Two and a half hours after the start of Romeo’s muscle spasm ordeal, the doctor gave him a small dose of morphine. Thankfully, it relaxed his muscles and he went into a peaceful sleep. On the other hand, I – I who had been crying all day – cried some more. I cried all night and well into the next morning. That day, Romeo and I crawled through the deepest, darkest jungle without a map or chart. We encountered monsters and demons. But still we crawled. It may be a very long time before we can stand up again. Yet, we crawl.