Sep 23, 2012

How Long Should an Alzheimer’s Patient Sit on a Chair? And What Should He Do Next?

“I don’t know what to want,” he said.

By Marie Marley
Alzheimer's Reading Room

How Long Should an Alzheimer’s Patient Sit on a Chair? And What Should He Do Next?
One day I went to visit Ed, my Romanian soul mate of 30 years. Since he had been moved to a new room in the nursing home the day before, I expected to find him disoriented, agitated and upset.

But he wasn’t. He was calmly sitting at his desk.

Wearing his khaki Dockers and a crisp red-and-white pin-striped shirt, he was reading, or at least trying to read, what looked like a philosophy book -- probably in German. Most of his philosophy books were in German.

June, his new aide, wearing vibrant violet scrubs, came in and introduced herself.

“Looks like he’s right at home,” I told her.

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“Yeah. Residents usually get used to their new rooms pretty fast,” she said, “especially when they don’t see their belongings being moved. And when we put everything the same exact way it was in their old room, sometimes they don’t even know they’ve been moved!”

She laughed at her own remark.

“It usually takes the families longer than the residents to adjust. He’ll be fine. Don’t worry.”

As I was leaving the center, Ed accompanied me to the front door. In Assisted Living he’d only been able to go as far as an internal door, but from his room in the Courtyard he could go with me to the main door of the facility.

When we reached the door we went through our leave-taking ritual, saying good-bye and blowing kisses to each other.

“When are you coming back?” he asked.

“Tomorrow,” I answered.

He asked me that every time. And I always said “tomorrow.” I wanted to please him and I knew he wouldn’t know the difference. But instead of responding with his usual “Marvelous!” he looked bewildered.

“What should I do now?” he asked plaintively.

“Do whatever you want,” I answered as I waited for the door’s 30-second delay.

“I don’t know what to want,” he said.

I was blindsided by his remark. He seemed so lost.

“Well, why don’t you just sit here in this nice chair for a while?”

He sat down obediently.

“How long should I sit here, Ma-r-r-rie?”

“Sit however long you want,” I said, turning from the door and walking back toward him.

“Ma-r-r-rie, I don’t know how long,” he said, looking forlorn.

“Okay,” I said. “You sit here 30 minutes.”

“Thank you. I will sit here for 30 minutes. What should I do then?”

He looked at me as though I had the answer to all of life’s questions, including that one. My heart sank as I realized he now needed specific instructions for what to do every moment.

“Sit here in this chair for 30 minutes,” I said, kneeling in front of him. “Then go to your room. When you get there, get ready for bed. I will visit you again tomorrow.”

As though he could remember all these instructions.

“Oh, Marie,” he said, “Thank you for your guidance. It r-r-really means so much to me.”

And with that we blew each other kisses again and I left, overwhelmed by his further descent into dementia. This formerly brilliant lawyer and professor could no longer even decide how long to sit on a chair.

Come Back Early Today:
A Memoir of Love, Alzheimer's and Joy

Marie Marley
Marie Marley, PhD, was a caregiver for Dr. Edward Theodoru, her delightfully colorful, wickedly eccentric Romanian soul mate, for seven years. After he passed away in 2007, she wrote an award-winning book about their relationship, Come Back Early Today: A Story of Love, Alzheimer’s and Joy. In the course of narrating their 30-year love story, Marie illustrates the solutions she found to 14 different issues that typically arise when loving and caring for someone with dementia. You can visit Marie’s website which contains a wealth of information about caregiving at ComeBackEarlyToday.

Original content the Alzheimer's Reading Room