CALLING BARRY JOHN
My husband Barry has been at his care center for just over a year now — but it seems like forever. It’s still hard to believe that he is there for the rest of his life.
I feel stuck in someone else’s life when I drive there each day, climb the stairs to the second floor and see him lying in his bed. Barry lies there, moving his legs back and forth all day long. He is unable to get out of bed so I think the leg motion is his starting attempt to get up. But frontotemporal dementia (FTD) is so cruel that it lets him begin to get up and then takes away that ability over and over again all day and night long. As I have said before, his stomach muscles are as hard as a rock from this repeated motion.
Since the day Barry arrived at the care center, everyone there has called him John. I don’t blame them because his given name is John Barry McCool. His father’s name was John so since birth he has been called Barry, his mother’s maiden name. Barry always dreamed of going to Ireland to find the town or area called Barry where his family is from. But we just never found the time or money for the trip.
It was his Irish looks that caught my eye when we first met at the YMCA. I was taken with his dark hair that looked a bit red at times and his deep blue eyes. He was proud of being Irish as were his Dad and favorite Uncle Howard. At most events with his family, the Irish blessing was recited several times along with many Irish toasts. He has a book of Irish toasts in his room now. I should get it out and read a few toasts aloud on my next visit.
When he first arrived at the care center, I told everyone to call him Barry so he wouldn’t be confused. It was also important for the nurses to know whom I was talking about when I called. To this day, he is still called John by everyone there — even by me now! He seems to respond to John more than Barry. Has he forgotten that his name was Barry? All his old friends called him “Bucks.” Does he remember that? I always called him just “Bare.” Very rarely did I call him Barry, unless I was irritated with him about something and then it was BARRY!
I sat by his bed the other day trying to remember what he called me before he got FTD. Was it Nan, Nancy, Nanc or just honey? It has been three years since we have had any real conversation. I actually have no memory of what he used to call me. Now on a rare day when he actually speaks, he calls me nancycarlson.com. What else will I forget about our life together as we both wait to see what happens next.
It makes sense that I also call him John at the care center these days because there is not much left of the old Barry. FTD has taken it all, except for those beautiful blue eyes. Each visit, Isearch those eyes for any sign of the old Barry, but, sadly, I only see a guy named John. Damn FTD!