Restlessness: A sign that death is near?

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I was teaching a workshop at a dementia care community when I got an interesting question from a nurse. 

She asked, “What do you do about residents who don’t want to be in any particular place? For example, we have one woman who sits in her wheelchair in the hallway, asks to move to the dining room, sits in there for five minutes, and then asks to be moved again.”

This was an interesting question, and one that I hadn’t gotten before. However, I’ve had the same problem at my care communities in the past. There’s always at least one or two residents who are never happy wherever they are physically. 

I had one resident, Hank, who was highly fixated on going somewhere. It did not seem like Hank knew where that place was, but he wanted to head in that direction, anyway.

“Hey!” Hank would yell in the hallway from his Broda chair. “Can somebody help me?”

When he saw someone in the hall, he’d reach for them, or call out. “Hey miss,” he’d say to me, “Can you please move me into the other room?” or, “Can you move me six feet that way?” 

No matter where we moved Hank, he was never happy. He’d thank you, sit in that spot for a couple minutes, and immediately start yelling for help again.

It was annoying, but it was just a part of his dementia, and that’s what I told this nurse.

“There’s not much to be done in that case,” I said. “It’s definitely annoying, but it’s just a part of where they are in their dementia. The best thing that you can do is move that person, make them happy, and hope that it helps. I also recommend bringing them something to do, or bringing them to an activity to keep them from being bored.”

As we talked, though, I thought of something else: Hank and the other restless residents I’ve had often die soon after their periods of anxiety and restlessness. 

I suggested this to the nurse and her team. “You know, Hank didn’t last really long after that,” I said. “It seems like people aren’t in that stage for too long.”

“That’s wild!” she exclaimed. “Our resident died soon after her restlessness period, as well!”

If you want to get philosophical with it (which I will for a moment here) it seems like people with dementia, when they begin to get restless like that, are in the middle of two worlds. One is the world that the living occupy, and the other one is death. I do wonder if Hank and my other restless residents (who have all passed away soon after their restlessness) are looking for something they really can’t find. They know that they’re supposed to leave the earth soon, but they can’t quite explain it. Just a thought.

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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