“Thank you, Marie. I will sit here for thirty minutes. What should I do then?”
People with Alzheimer’s may have great difficulty figuring out the simplest activities. The following story illustrates that poignantly.
One day I decided it was time to see how my Romanian life partner, Ed, was adjusting to his first day on the new unit he’d been moved to at the nursing home. They’d moved him because he was requiring more personal care, which could be given in the new area.
When I reached Ed’s new room, I expected to find him disoriented, agitated and upset. But 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.
Suddenly a stocky little man appeared in the doorway. His black trousers were hanging a couple of inches below his waist and his plaid burgundy and grey flannel shirt was un-tucked on the right side.
I was surprised when Ed, a life-long loner, raised his hand and shouted, “Come in, come in.”
Ed looked at me and said, “Marie, this is my dear friend, John. We’ve been best friends for years.”
John shuffled in, advancing in short jerky movements, his house-slippered feet barely lifting from the floor. Slightly balding, his remaining hair was jet black, his eyes dark brown, and he had a round jovial face that reminded me of my Irish Grampa Graves.
“Yes, we’ve been best friends forever,” John said, waving at us.
He asked me that every time. And I always said tomorrow.
Ed patted the empty space next to him on the other side of the sofa and John sat down. Then, and you might imagine my shock, they started holding hands and taking turns telling me how many years they’d been best friends.
They reminded me of two little girls sitting on a bench, dangling their legs while waiting for the school bus. I was delighted, though dazed, that Ed had made a friend, and so quickly at that.
“Hi, John,” I said, wanting to be gracious to Ed’s new friend. “How long have you lived here at the Alois Center?”
He snapped to attention. “All my life,” he answered proudly.
I shouldn’t have been surprised, but for some reason I hadn’t expected this man to be as confused as Ed.
As I left the Center a little while later, Ed accompanied me to the front door. When we reached the door we went through our usual leave-taking, saying good-bye repeatedly 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 anyway. 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 to pass.
“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 in this nice chair here for a while?”
He sat down obediently.
“How long should I sit here, Marie?”
“Sit however long you want,” I said, turning from the door and walking back toward him.
“Marie, I don’t know how long,” he said, looking forlorn.
“Okay,” I said. “You sit here thirty minutes.”
“Thank you, Marie. I will sit here for thirty minutes. What should I do then?”
He looked at me as though I had the answer to all of life’s critical 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 a half hour,” 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 really means so much to me.”
And with that we blew each other kisses again and I left. I was completely 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.
Would anyone like to share a positive experience with a loved one living with Alzheimer’s? Leave a comment on Alzlive.com or contact Marie Marley directly.
Come Back Early Today, is available at Amazon.com
Reprinted with permission – Marie Marley
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Come Back Early Today: A Memoir of Love, Alzheimer's and Joy
Marie's book tells the powerful 30-year love story of a young American woman and a delightfully eccentric Romanian gentleman and scholar, Edward Theodoru, PhD. A compelling love story, this award-winning book illustrates solutions to 14 specific problems that typically arise when caring for a person with dementia – from denial, diagnosis and difficult behaviors to nursing home and hospice care.
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