BARRY’S JOURNEY – I love you too!
FTD can be really mean
Visits with Barry have become a bit scary. He is unsteady as he walks. I bought new shoes for him, otherwise I think he would have fallen by now.
When I arrive, he is usually in a deep sleep, looking like an old man with his lips sucked in around his teeth. I noticed at lunch last week that when he shut his eyes, he seemed unable to open them. That frontotemporal dementia (FTD) is so mean — almost like it is having fun taking things away from Barry and then giving them back again. After a few minutes of his eyes shut tight, I startled him by shaking him and he finally opened his eyes.
His days now are spent trapped in bed because he can’t get out by himself, although he tries to sit up and cross his legs. He can’t watch TV or read. I leave him each day with classical radio on and his lights off. I always hope he will fall asleep and relax a bit.
The gang on his floor continues to change — people come, people go and people die. One of the guys watching TV likes to fill me in on what Barry has been up to. No matter how old we get, tattling is still kind of fun. Everyone seems to like Barry now that he doesn’t swear all day. The nurses say, “Hey McCool,” as we walk around the floor. Then he repeats “Hey McCool” over and over again and everyone seems to get a kick out of that! I like to think that he is a rather popular guy at the care center.
I try to feed Barry a few times a week. When he stops chewing and swallowing because mean FTD is once again messing with his brain, I just stop feeding him. I don’t panic any more about that and it’s easier on Barry if we don’t force him to eat. The other day, he was sitting with the TV gang and I had to stop Barry from continually getting up. I almost have to sit on top of him to keep quietly watching a show. The Twins were on TV so everyone was happy. By the way Minnesota Twins, I hope you know the joy your games bring to the residents. Win or lose, they are your Number One fans.
One lady said to me (as she always does), “You must be worn out keeping track of your husband. He’s a handful!” The 100-year-old lady knows my name is Nancy, but I still can’t remember her name! One guy who visits his wife every day at the center told me he asked a lady from his church out on a date, but she said no. I said don’t give up. He said he might join a scrapbooking club. And I said good idea. Wow, I would never have imagined that I would find myself talking about dating with an 80-year-old! Sometimes I feel we are all like a big, odd family. And other times, I think I can’t take much more of this.
On this day, I put Barry back in bed, turn on the radio and say, “I love you.” I expected him to just say in his echo speech, “I love you,” — but instead he said, “I love you, too.” FTD opened up a little part of his brain for just that moment and for that I am thankful. Then Barry was back to trying to sit up and cross his legs. So it goes — for a guy with FTD.