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Finding Nelson

by Ginnie Horst Burkholder

We’re two months into the Pines Long-Term Care facility. Nelson often doesn’t know his way around, frequently walking past his room or the door to the dining room. He forgets that there is a bathroom in his room. He doesn’t know the names of the people he sees every day. More often than not he seems not to know where he is or why he’s there. He seems lost.

I’ll never forget the night a couple of weeks ago when I walked into Nelson’s room around 9 p.m. Earlier, the staff had called me at home to say that Nelson was agitated and uncooperative and would I talk to him? Unable to get a handle on what he needed on the phone, I told him I would come in to see him. When I arrived, I was met by the head nurse. “This is so not like Nelson,” I said. She reassured me, saying they understood that brain changes were manifesting a different Nelson. I agreed.

Looking for the real Nelson

But not so fast. Now I look back and wonder if this was more the real Nelson than we wanted to think. There had been no medication changes at that time so we couldn’t blame meds for his behavior changes. He had, however, been put into a totally strange environment without the cognitive capabilities to problem solve and remember. For a month or so his manners and good nature overrode his fears. But then hallucinations started. Unable to express his fears and needs – and perhaps dealing with an impatient or commanding aide – Nelson’s true self was threatened beyond tolerance. He knew only that he was lost and did not like the way he was being treated. The real Nelson knew that is not the way things are supposed to be. His only recourse was to resist.

Now he’s had new meds added – one for anxiety and one for sleep. He still indicates he doesn’t want to be there, but usually responds cooperatively to gentleness and patient interactions that preserve his dignity. Treating him that way sometimes takes huge chunks of time. That’s something the staff is going to find hard, if not impossible, to give. Then, in all fairness, he may not be able to trust these strangers enough to tell them the things that are worrying him even if they could take the time to listen. It’s hard on the pride to admit to a stranger that you’re afraid, lost, and confused.

These days Nelson is hidden so deeply in the Lewy body maze that at times I think we’ve lost him completely. But if I’m alert and patient, now and again I get to enjoy a moment of clarity or a shine of the old Nelson through the haze.

'Wherever you are'

This morning, after helping him with breakfast, I put him in a lounge chair in the activity room with the newspaper. I told him I was going to leave, and I would be back later in the day. He wanted to know what time.

“I’ll be back at 4:30,” I said.

“Here?” he questioned anxiously.

“I’ll see you in your room,” I said, because that’s usually where he is when I get there in the late afternoon. Then, noting his anxiety, I added. “I’ll find you wherever you are.” That’s when he broke into the biggest grin I’ve seen in weeks.

Reassurances, I’ve discovered, are crucial. Frequently it’s the, “Good job,” I give no matter how small the task he has done. At the table it’s the hand on his back that rubs lightly telling him I’m there to help when needed. When a noise startles him, a quick, “It’s OK,” helps to keep his fears from escalating.

When you can’t keep track of your own self and where you are, you want to know that the people who love you are going to be back – and that they will find you.

No matter what, Nelson, I will find you.

© 2010 Ginnie Horst Burkholder

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