Everything’s different, but little changes: is this worth noting?

Another Alzheimer’s caregiver I know kept a journal at first, with notes and stories he thought he might share sometime.

“But after a while I didn’t have as much to write,” he said. Not that much was changing. Not that much was new.

That’s how it is with me now.

Different but the same

To be sure, Evelyn’s not the same today. Deterioration, the dirty work of both Alzheimer’s and Parkinson’s, continues. But the changes are subtle, and they’re coming slowly. Anyone who was with her a year ago might be taken aback by what’s different now. I am when I look at pictures taken then. But these days when I arrive for my short visits, she seems mostly the same as she was the day before.

She still smiles, although not for the camera when we say “Smile!” And usually not at me when I greet her in the afternoon. More likely she’ll laugh at something said by someone who stops by to chat with us. We treasure each smile. We smile back at her and seize the opportunity to respond to her because too often we have trouble getting her to respond to us.

Aside from the enemies at war in her brain, her health is good: blood pressure, oxygen, heartbeat, appetite, weight. She eats well (but usually she needs someone to help her eat).

Reading and rereading, folding and folding again

She spends hours looking at any book or magazine or catalog or newspaper we place in front of her. Reading material is the go-to strategy used by the aides where she lives for keeping her occupied. It’s a blessing. These days she may look at the same page for an hour, read the same headline or paragraph (always with perfect pronunciation, even the proper names) again and again. She seldom gets bored with it.

She reads compulsively. One of the favorite activities at Artis is cardio drumming. They set huge plastic exercise balls in front of each resident, and hand them a set of drumsticks. When the music plays, the crowd beats the balls in time to the rhythm.

Well, some of them do. When I last tried this with Evelyn, she spent the whole time reading the brand-name label burnt into the wooden sticks in her hand.

Sometimes I just let her read when I’m with her. Other times I play hymns, and sometimes I sing along, especially if I think she’ll pay attention to me and sing with me. Sometimes she does, at least a phrase or two.

We look at old photos, and I talk about what we were doing when each one was taken. Girl Scout troops and church ladies’ groups have made and donated “fidget cloths,” with colorful bows and buttons and zippers. Sometimes she enjoys manipulating one of them or working to neatly fold it and then fold it again.

Her complete sentences are rare. When they occur, we delight in them. She understands our questions and answers yes and no. “Did you have a good breakfast?”

“Yes,” she nods her head.

“What did you have to eat?” That one stumps her, and she returns to her book.

She forgets, I’ll remember

I write all of this not to demean her, but to describe what’s happening these days, to “remember the forgetting,” to keep this chronicle complete. Maybe it will be important for me someday to recall this stage of our journey.

But the fact is, not much is happening. The losses were dramatic and profound and confusing at first. Now they feel less like an attack and more like a heavy weighted blanket, hard to cast off.

I’m surprised sometimes that I’m still not comfortable with our new normal, tragic but predictable. I’m shocked by the intensity of the grief that grabs me, often when I least expect it.

Perhaps I should go to other sufferers for consolation.

Do the parents of children with Down syndrome, for example, still sob at night by the time the child has turned six or 16?
Does the quadriplegic still want to stand after sitting in a wheelchair for years?
Are senior citizens ever truly satisfied with their hearing aids?

And will I ever stop weeping?

Other caregivers have told me they cry every day. So maybe I’m OK. The tears are cathartic for me, especially in private where I don’t need to be embarrassed by them in front of a friend.

Friends are gracious and patient with me. And so are dear readers of this blog, like those who have stuck with this whole post till the end. The bottom line is, “There’s really not that much to write about these days.”

Thanks for reading anyhow.