BARRY’S JOURNEY No. 24

Dinner with Barry

I have been trying hard to get to Barry’s care center around 5:00 each day. His social worker said he could have one beer a day to make his life, well, more normal. So for about a week, I brought a beer for Barry (and one for myself). But this pleasant routine did not last.

Barry has lost his taste for beer. And he can no longer drink it by himself — in fact, he can’t hold the cup without shaking so much that it spills all over him. At this point, trying to pour a beer down his throat just doesn’t seem right. Plus, he is very unsteady standing. I would feel really bad if he fell down after I gave him a beer. So no more beer!

Lately when I arrive, I often find Barry in his chair rocking back and forth to get out, but he can’t figure how to do it. This rocking has caused sores on his bottom, and he can’t tell us if they hurt. He can’t tell us anything! Today I found him with chocolate chip cookie pieces melted in his hands and crushed all over his pants! I figure he grabbed the cookie but could not take the next step to eat it.

Dinner starts at 6 p.m., but Barry does not know when and how to get to the dining room unless someone helps him out of his chair and takes him. Barry sits with a younger guy who is not verbal, but he sure can communicate with gestures. He’s a good guy and puts up with Barry trying to stand up all the through the meal. One nurse figured out to put Barry’s chair against the wall and the table close so he can’t get up. It works most of the time.

Much lost in a year

Just a year ago, Barry and I were living together in the one bedroom place where we were caretakers. I tried very hard to make life as normal as possible for Barry, but there was no getting to normal anymore. For example, one spring evening, I asked Barry to go start the coals on the grill for burgers like he had always done as our grill master. As I was busy getting the burgers and salad ready inside, it dawned on me that I had just sent a guy with frontotemporal dementia (FTD) out with lighter fluid and matches!! What was I thinking? I totally panicked and ran outside to supervise, but in my haste, the door to the apartment closed and locked behind me. We were locked out. Barry had lit the coals just fine, but I had reason to panic.

Because of recent mishaps, I had unplugged the stove, microwave and washer so he could not even try to use them. He had been washing one sock at a time in the washer, and I found a pizza in the oven beyond burnt! When we finally were let back into our place, we both had a good laugh. Barry was the one with FTD, but I was the one who locked us out.

A few weeks later, our son Mike was over and we tried burgers again. We sent Barry down to grill like he had always done in the good old days, but he came back with raw meat covered with lighter fluid. Now we knew that his grilling skills were lost.

Things have progressed in the past 12 months to where Barry can’t even feed himself. During dinner at the care center now, we listen to polka music and I shove food into him — maybe a bit too fast. I am always in a hurry these days! Each night I think to myself that here I am feeding my husband, who is wearing a bib and diapers.

What must he think? I know what I think. It sucks!