By Barbara Pierce
“This is it. I’m dying. I feel sure of this,” said Donald, who was once my partner. Now that his dementia has progressed brutally, I am his caregiver and it is a very tough role. He has only me in his life, no family, no kids, no friends.
“I’m not going to be around much longer,” he added. “I want you to know how much I appreciate all you’ve done for me. You’ve meant so much to me. Everything I’m leaving behind is yours.”
Tears came to my eyes. These were the only lucid words he had said in weeks.
It was 3 a.m. We were sitting on his bed. He didn’t sleep well most nights. As he roamed around our apartment and our building in a confused state, he wasn’t safe. So, I didn’t sleep well either.
What made this moment especially poignant was that he wasn’t dying; he was in great physical health. However, his brain had shrunk to next to nothing and didn’t work much most of the time. In this lucid moment, he recognized something overwhelming had dramatically changed his life. It was definitely similar to death. The life he had been leading was dead. He had moved into the non-life of dementia.
What Donald didn’t know at the time was that I had recognized I could no longer care for him. I was arranging for him to move to a locked memory care unit; he would move next week. As much as I wanted to keep us together, I knew I didn’t have the ability to care for him. And our budget had no room for a paid helper.
A few years before, he’d been diagnosed with vascular dementia. I learned that it’s important to see a neurologist for a diagnosis as there are several types of dementia. Medication slows the progression for some. For example, though he did not have the physical manifestations of Parkinson’s disease, the neurologist thought that’s what he had, as about half the people with Parkinson’s first have memory and confusion issues without physical symptoms and there’s a medication specifically for Parkinsons.
Donald’s dementia declined slowly. He was a caring, thoughtful, bright man, easy to care for. Then one day, six weeks before the deathbed goodbye, he had an episode when he shut down totally. Suddenly, he couldn’t walk, couldn’t talk, couldn’t comprehend anything and had a blank look.
That changed him completely. He became agitated, restless, couldn’t sit still, couldn’t sleep. Physicians in the hospital advised me there was no way I could care for him at home.
“Put him in memory care,” they strongly recommended. However, memory care is expensive; it wasn’t possible. They didn’t suggest I could apply for Medicaid.
I brought him home. He didn’t sleep well. Some days he had trouble eating, he couldn’t even get the food into his mouth. Continence was an issue. I couldn’t leave him alone as he wasn’t safe. He couldn’t find his way to our apartment if I wasn’t with him. He’d leave during the night when I slept, sometimes with no clothes on. He’d fall asleep in the lobby or knock on other’s doors. He was not OK. I was not OK.
I’ve learned that the three levels of care include skilled nursing facilities, assisted living facilities or memory care units. Medicare does not pay for any of these long-term care facilities so I’ve applied for Medicaid for Donald.
His move to a locked memory care unit went smoothly. He was baffled by this move but seems to be OK being there. In trying to figure out how he got there, he commented: “They flew me here from London.” (He’s never been to London.) I did not involve him in the decision as he would not have agreed to move.
I’m learning much about how to communicate with him. After he’d been there for a week, I asked him, “How’s the food here?” He responded: “I don’t know, I haven’t eaten here yet.” He’d probably eaten at least 20 meals there. I learned don’t ask him anything that requires memory, just comment on the moment.
Another time, he was sitting in the TV room. I suggested “Want to go to your room to talk?” His response: “Oh? I have a room here?”
Normal conversation is no longer possible. As he’s from Detroit, the other day I mentioned “They’re having a big snowstorm in Detroit.” His response: “That’s an item that’s popular in so many countries.” Then added, “Oh look! That bush over there has eyes! It’s watching us.”
So much for trying to carry on a conversation.
What a sad end to a good life. It’s sad to visit him. However, instead of feeling sad, I need to accept that we all change as we age. I need to focus on feeling thankful that he has a place to live where he is safe and looked after.
Barbara Pierce is a retired licensed clinical social worker with many years of experience helping people. If you would like to purchase a copy of her book, “When You Come to the Edge: Aging” or if you have questions for her, contact her at barbarapierce06@yahoo.com.