Elaine's Caregiving Series: Tommy Sleeps Through the Night

I’m on the living room couch watching the numbers on the DVR’s digital clock. It's 3:30 in the morning, and I'm praying Tommy doesn't wake up before his alarm, like he did yesterday.

It was 3:45 a.m. when he hustled out of bed and started pulling on his jeans. (This is a typical wake up time for me, so I wasn't angry, just scared.)

"Honey, it's 3:45 in the morning," I told my husband. I pulled his elbow and tried to stop him from putting his belt through the loop.

Tommy pulled away and moved to lace his tennis shoes. He didn't rebut because he can’t speak. Frontotemporal Dementia (FTD) and Primary Progressive Aphasia (PPA)-- disorders affecting the brain’s language center — started robbing him of his speech in 2009, and like one of the "Ps" says, it's Progressive. So, over the years, there's been less and less talk, and now we're left with bits of common language from our 14 year marriage. And if we're lucky, a written note.

At least he’s safe in bed, I tell myself.

At least he’s no longer driving.

It was my neighbor across the street who called to tell me Tommy had sideswiped another car and drove off. I was waiting for this kind of call for I worried every time he got in his car. If he was late coming home from the Y, or from his golf date, I’d pace in front of the window until I saw his Honda Accord pull into the driveway.

“You have to take away the keys before he kills someone,” my daughter said when I told her of the latest incident. "You'll never forgive yourself."

So, neighbors Holly and John sat on the couch with me to tell Tommy it was no longer safe for him to drive. When he refused to give me his car keys, I said, "John will remove the battery." I got that line from one of his neurologists.

"We've got lots of kids in the neighborhood," Holly said. "You can't be driving."

"No," Tommy said. "Golf, the Y." He could get those words out.

"I'll take you," I said. "Anywhere you want to go." I do.

Yesterday, when Tommy woke at 3:45 a.m., I followed him downstairs to the living room. He settled on the couch and turned on the remote. He wrote on a Post-it, "Rock."

Aha! Tommy thought he had been taking his afternoon nap and it was time to get up and watch one of his favorite TV shows, "The Rockford Files." When I opened the curtains to show him it was still dark outside, when I went through the MeTV listings to show him there was no Rockford, when I pointed to the a.m. on the TV screen's time, he clicked the remote and went back upstairs to bed.

This morning it appears he is sleeping through.

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Elaine's Caregiving Series: Tommy Sleeps Through the Night

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