Things continue to be different for us. And really, that’s normal

We ate dinner out with another couple Saturday evening, and after the meal when the two ladies went to the restroom, I said to my friend, “Well, it’s been several months since we’ve been with you two. Do you see a difference in Evelyn?”

“Oh yes,” he answered quickly and looked away, almost as if he was embarrassed to admit it. “But she still engages,” he said after a pause. A kind comment, as if to help us both believe, “It’s still OK.” And, indeed, I had been pleased each of the few times she jumped into the conversation during the meal. A year or two ago, would I have noticed, or would a comment or joke or response from her have seemed just normal then? I’m not sure.

Changes

But if I think about it, I realize the small or sometimes not-so-small changes in our routine continue to mount up.

One example:

We no longer eat dinner in front of the TV in the family room while we watch 60 Minutes. It had been a Sunday-evening cocooning tradition for more years than I can remember. Retreat from upstairs. Eat “Sunday-night food,” tacos or tomato soup or grilled cheese sandwiches or pizza. Follow the news magazine with something from PBS or the DVR to fill the rest of the evening.

But on a Sunday night several weeks ago, Evelyn would not sit at the TV tray to eat. She insisted on reclining on the couch with her food in her hand or on her chest, dripping crumbs and threatening to spill. I asked her repeatedly to sit up, and allowed myself to become stern and angry about it—to no avail. Not exactly a comforting, relaxing scene. Later I brushed crumbs off the sofa and wiped up ginger ale from the floor and decided we would not eat on TV trays at the couch again.

In a way this is trivial, and I’ve certainly moved on. But, as my care group facilitator remarked, each small change like this one represents another loss. I loved enjoying TV with fun food on a Sunday night with Evelyn beside me and the whole evening stretching before us. That’s not going to happen again. And I miss it.

Improvements

Actually, I doubt we’ll be watching TV downstairs in the family room much at all anymore. After reading my account of Evelyn wandering up and down the basement stairs while I repeatedly paused programs to go check on her, some friends suggested we just buy a TV for the living room upstairs.

It’s been installed for several weeks now, and it’s so much better. Now, when Evelyn has trouble sitting and watching, she often simply circles through the dining room and kitchen and then back to her spot quickly without the need for a TV pause. She moves from couch to chair to another chair, and that’s not a problem. It’s just better.

Losses

If all this seems boring, I’ll apologize. These little changes are not the stuff of headlines or plots for action movies. But they are typical of the stream of losses constantly eroding “normal” from the caregiver’s life.

Other changes at our house:

• I’ve installed an alarm on the front door that will emit a shrieking siren if Evelyn turns the knob in the night. I’ll sleep better not worrying if she’ll wander outside at two in the morning.

• Due from Amazon this week: a new bracelet for her medical ID badge. She wore the first one all day every day for several months. But it’s gone missing. I’m sure it’s under this roof somewhere; I’ll find it someday in the back of a drawer where I’d least expect it. She’ll be wearing the new one soon.

• I realize I’m transitioning from trying to put my best foot forward in public to quietly accepting gracious help or accommodation from friends. “Looking for Evelyn?” a couple asked me when I appeared in a hallway at church Sunday with a concerned expression. They pointed me in the direction they’d seen her walking, and I appreciated it.

For months now I’ve been writing about the changes that come to an Alzheimer’s patient and her caregiver. But I think I ignore or miss many of them. Frankly, I was a little surprised at my friend’s quick, sure reaction Saturday. But slowly I’m learning to adapt sooner to changes and not to dwell on the grief they bring. Week by week I’m coming to terms with the reality that things will continue to be different for us.

And really, that’s normal.