BARRY’S JOURNEY No. 7

Hanging out with Ed.

Barry has a pal who takes him out to lunch every Wednesday. We met Ed and his family when our boys ski-raced with his son. When Ed learned about Barry’s frontotemporal dementia (FTD) and our financial problems, he reached out.

I am pretty sure Barry looks forward to his lunch dates with Ed because he tries to get up that day — at 1:00, 2:00, 3:00 and finally at 4:00 a.m. when I tell him that he can get up. Barry doesn’t say much during lunch, and Ed is fine with that. I have learned not to ask Barry about what is new with Ed because he doesn’t ask Ed anything about his life or what his kids are doing.

This is a very irritating thing about FTD. In fact, it was the first symptom I actually saw in Barry. I began to notice that when we went out with friends, Barry never asked about their kids or what was happening in their lives. I also noticed when he told people about our kids or our lives, it was always the same information — he added nothing new. However at that point, I didn’t suspect that anything was wrong.

Now a few years later, Barry doesn’t know what to ask or what to talk about. But that’s okay because Ed is a good guy and doesn’t expect a deep conversation. And Barry enjoys getting out so much, he tries to get up and get ready all night.

Thank you, Ed, for showing so much grace to Barry — and for letting him order both a beer and a malt for lunch!