BARRY’S 8OURNEY No. 27
What is Barry thinking?
I can’t figure out how to feel about Barry and his life at the care center. When he first got there, I was relieved that he had somewhere to go after being kicked out of his assisted living place in Edina. But it took me a while to get used to going to a care center (aka nursing home) each day.
Cheers to those brave enough to visit
A care center is a reminder of just where you do not want to end up. Going to see Barry is not much fun. This is why I so appreciate the people who get up their courage to visit Barry. It is an uncomfortable place to be and a visit with Barry usually yields no rewards at all. There is no conversation that really means anything. And Barry is thin, usually a little smelly and has that unnerving frontotemporal dementia (FTD) stare that can be a bit scary.
I have put a little book in his room where people who visit can write something. I noticed Barry’s old pal Louie stoppped by recently. Louie wrote in the book that the two talked about their dogs (who were sisters) that they each raised in the early 1970s. He signed off, “I Love You Barry.” It made me want to cry to think someone still cared so much about Barry.
I feel like a mother bear trying to hold off my anger and sadness at just how few visitors Barry has these days. I don’t blame people — as I said, this is not a pleasant experience for anyone. But thank you to those who have let go of their own discomfort and stopped by to say hello. I don’t know If Barry feels any pleasure when an old friend visits, but it sure means the world to me.
Stuck in a care center
I wonder each time I visit what it must be like for Barry to be stuck at the care center. Is he aware of where he is? Does he know his world is confined to four walls and one small window? Is there any pleasure in his day? I wonder if he enjoys mealtime. He has to be fed now, and I wonder if it is frustrating for him. What if he doesn’t like canned peas, and we are stuffing them in his mouth. (I have to say that he ate all my cooking for years without complaint! This was really a feat because I made many pretty bad meals during our marriage.) When an old pal comes to visit is he happy to see them? He can’t tell me if anyone has visited. Despite all this, Barry has never asked to leave and come home.
What does he think about all day while lying in his bed? Does he have the urge to get out of bed? He can’t get up now without help. Is he aware that he irritates many of the other patients with his constant repetition of words and sentences? Or is the non-conformist part of Barry trying to irritate everyone? Is it his one way to protest his predicament?
The biggest question I have is about how he may feel when our granddaughters, ages almost 3 and almost 1, come to visit. Is he happy or sad? One day a few weeks ago, Barry’s eyes filled with tears when the girls came in. Were they tears of sadness or happiness, or was something irritating his eye? He can’t tell us and it breaks my heart. I have no idea what he is thinking. But then maybe he isn’t thinking at all anymore.I wonder if Barry likes taking the pills that help him relax. I wonder if he looks forward to that high — or has he lost that feeling as well.
I have never been at the center late at night. Sometimes when I am at home watching TV or getting ready for bed, I try to imagination what Barry must think as he is put to bed by an aide or nurse. Does he still snore? Does he dream, and if he does, are they nightmares? I hope that whatever drug they give him at night makes him sleep like a baby.
We are now beginning our second year in the care center. Many times I don’t want to go there — but I do. I have to admit that I kind of look forward to being out of town on school visits, even though I get anxious to see him after a few days away speaking. I just can’t stand the thought of him being all alone.
At each visit, I still hope for some sign of joy from Barry. If there is no joy in his life anymore and he will never get better, what should I do? I just wish he could tell me. I can only hope that one day he will!