Living With Alzheimer’s, Continuing the Journey

No matter what I think I know about Alzheimer’s Disease, changes in Bill’s status and abilities can still blindside me. And when emotion fills me up to where thoughtful reaction/action is all but snuffed out, strategies go out the window.

The usual response when someone asks how we’re doing is, “Fine, thanks.” There are days I’m not ‘fine’. But I can do something about my state of mind. Imagine what it must be like when you can’t.

More and more often, in a fit of frustration and hopelessness, Bill grabs his head, curls up, and with tears sliding down his cheeks, cries, “I can’t do anything, I don’t know anything, I don’t know where I am or what I’m doing. I can’t…I can’t…do this! Every single time it breaks my heart.

A few weeks ago, I handed him his socks. On that day he looked at the socks, then at me, then at the socks. “What is this?” he said. I’ve been helping him dress for a couple of years, but that was a first. I had to pause and breathe to keep my response calm. “Socks,” I replied. “Sit there.” Then I slid them onto his feet one at a time, and waited for him to pull them up.

A few days ago, he repeated a refrain he’s uttered often in the past year or so. “I want to go home.” I asked him where he thought he was.  He said, “I don’t know.” I asked him if we lived together. He said, “No, we don’t live together.” I asked him if we were married. He said, “No.” I asked him who he thought I was. He said, “A friend.” That was another first for us, and I didn’t know how to respond. Eventually, I said, “I’m your wife. We do live together, here. And we’re also friends.” I don’t know if he took it in.

No matter how many workshops I attend, no matter how much research I do, or how many times I’ve heard others report similar milestones in their journeys looking after someone they love, nothing blunts the pain and grief I feel when the milestones hit us. And nothing blunts the pain and grief Bill feels when total awareness of his state hits him again.

Imagine living with that knowledge for 14 years, and not being able to do a single thing to change it. For those of us who aren’t living it, I don’t think it’s imaginable. The fact that he continues to live, to walk, to talk and to laugh makes him the bravest person I know.