Saturday, Sunday, sad: Her memory is the least of her losses

Those who have heard a little about Alzheimer’s disease think memory is the main issue.

“Early Alzheimer’s!” a 50-something person will say with a nervous laugh when they forget where they put their keys.

“Does your wife still know you?” a friend asks when they first learn she has the disease.

But memory is the least of the failures my wife and I deal with daily. And I’ve decided you must live with an Alzheimer’s sufferer to grasp the wide array of deficiencies caused by a brain that isn’t working.

Photo by nantakorn jeenpueng at istockphoto.com

I didn’t fully understand this even 20 months ago when I created this website. I first wanted to call it Remember the Forgetting until some advisors told me the title didn’t quickly communicate what the site is about. I like Unchosen Journey better, but I stuck with “Remember the Forgetting” as a heading for one section of the home page.

But I know in future years I’ll remember far more than everything Evelyn is forgetting.

I’ll remember what a marvelous, mysterious creation the brain is. It controls every aspect of how we function, a fact we don’t appreciate until those functions begin to fail.

Seeing the sad

I had a delightful three-hour lunch with two friends and former colleagues one day last week. John Samples and Dave Faust drove from northwest of Indianapolis, and I drove from north of Cincinnati to meet at a LaRosa’s restaurant beside the Batesville exit on I-74.

John, Dave, and I posed before eating our meal at LaRosa’s.

“How is Evelyn?” John asked, and I threw the question to Dave who had visited us with his wife just a few weeks ago.

He hesitated. “Well, it’s just sad,” he began. “She was such a strong person. . . . .” His voice trailed off. “She had trouble engaging with the conversation. She seemed uncomfortable part of the time.”

She knew Dave and Candy. She remembered former students Dave mentioned from their time serving together at Cincinnati Christian University. But she couldn’t sit through our meal or always know to use her fork instead of a knife to stick a bite of lunch into her mouth. Sad, indeed.

Living with sad

I’m learning to live with sad. Saturday I convinced Evelyn it would be fun to shop at Dollar General for items to pack in the Operation Christmas Child shoebox we’d brought home from church. (This is an international effort that sends boxes like this one to thousands of underprivileged children all over the Two Thirds World.) In previous years she had led me on this outing. She remembered we had enjoyed it, and she wanted to go with me.

Late in the afternoon we drove to the store, and as soon as we got inside, she wandered away from the aisle where I was shopping. It’s a small store, and I wasn’t worried about her leaving it or getting lost. Not really. But I still left what I was doing more than once to look for her and show her what I’d chosen.

Once I found her standing in the checkout line, empty handed, patiently waiting for who-knows-what. But when we both got in the line later, she had trouble staying with me and not pressing the woman ahead of us to move forward, even though this lady was stuck behind the person ahead of her.

Sundowning is sad

We had agreed we’d go to Blue Ash Chili for dinner. Not fine dining, but a cut above fast food, with a wide menu that reminds me of East Coast diners.

Halfway there, she said she needed to go to the restroom, so I swung into a McDonald’s and stood outside the women’s restroom, eventually entering it to make sure she was OK. She had locked the door to the stall and couldn’t get it opened. The lock was stuck, but finally—gratefully!—she forced it to turn, and when I reminded her, washed her hands.

The symptoms of sundowning were beginning to set in. She had quit smiling, and she regularly whimpered as if she were in pain. We got in the car, and I asked her if she still wanted to go to the restaurant or if she’d rather pick up a hamburger at Wendy’s and eat at home. As I suspected, she chose home.

She nibbled at her burger and fries, moving her meal from one spot to another around the kitchen table. Several times she wanted to take her food to the living room. Again and again I told her no.

Later she settled down and we watched a chick flick on Netflix, a film just a hair better than a Hallmark movie (although equally predictable), which I thought Evelyn would enjoy and I didn’t hate.

Sad on Sunday

Sunday we got to church between services so Evelyn could shuffle around the large lobby finding friends and smiling at toddlers before we went to our Bible class. There she read the handout at our tables out loud till I could distract her. She moved from chair to chair and then slid her first chair to a different position. A kind friend helped her pull up her slacks which she’d started to lower. I enjoyed the thoughtful discussion the Bible study stimulated—when I wasn’t distracted by keeping my eye on Evelyn.

Instead of stopping for lunch, I heated up some soup at home. My theory was this would give Evelyn a break before going back out to have birthday cake and coffee with some friends who were meeting that afternoon at the Christian Village at Mason.

But it wasn’t break enough. Once there, Evelyn couldn’t sit still. She roamed around the large room where we met. She rested awhile on one of the couches nearby. She fiddled with her waistband. She whimpered with a contorted face, in between laughing at our banter and smiling at our friends. She ate most of the wonderful dessert before her when I reminded her it was there. She asked for a cup of coffee and then didn’t drink it. We stayed a little longer than 45 minutes.

That evening she got engaged with a book and read it out loud for at least an hour after supper until I finally encouraged her to quit reading so we could watch 60 Minutes. She said she wanted to watch it, but soon she was reading again, this time whispering the words under her breath while I tried to concentrate on the program.

Later I tucked her into bed—three times, or four, because she kept showing up at the bathroom door while I was getting undressed and brushing my teeth.

It’s not her fault

I’m sharing this little slice of our life not to complain, not to seek attention for myself, and certainly not to demean Evelyn. Another caregiver gave me a mantra I’ve recalled again and again: “It’s not her fault.” All this (and likely more to come, I know), is because her beautiful brain is shrinking and clogging and failing.

And her memory is only the beginning of what she’s losing as a result.