Just my life now

I was driving away from my Sunday visit with May and thinking I really should call her Missouri friend Judy and give her a report. Judy is May's most loyal and thoughtful friend, and she's standing by her still. But I'm not much of a person for talking on the phone. I figured calling her was just another thing I should do but wouldn't -- and then, my cell phone rang. It was Judy. We talked about how May was doing and eventually Judy said, "Well here's how I'm doing..."

She had fallen and broken her shoulder. Had surgery last week, and now had to take pills (she's not a pill person) and do rehabilitation exercises (not that kind of person either). Said it all just "irritated" her.

"But I think about something May told me one time," she said. "It was not long after you moved to Evanston. I asked her how she felt about knowing that she had Alzheimer's, and she said, 'That's just my life now. I may not like it, but I wake up in the morning and I say, this is my life now, and if I can make it through this day I'll go to bed and wake up in the morning and it will be my life again tomorrow.'"

Judy said when it was time to take her pills and do her exercises, she thought of May and told herself, "This is just my life now."

Laughter, music and dancing

May was nowhere to be found when I visited just before lunch today -- but everyone had "just seen her."

"She was right here a minute ago," said Nicole, the staff person in charge of May's house. I took the opportunity to ask her why they had moved her to a different table in the dining room. Nicole said it was because they had noticed that May spent a lot of time visiting with a woman who ate at that table, so they thought it would be a good idea to have them sit together. "This other lady likes to laugh and joke," Nicole said. "And May, she likes to laugh and joke." Then she told me that they had just had a guest musician, who had asked May where she was from. When she answered "Oklahoma," the musician said she was from Oklahoma too and played a special song for May.

I went looking for her and ran into Max, the activities director. "She was just here," he said. "She was following me around." Then he laughed and said, "The musician played a song for her, Your Cheatin' Heart, you know--the Hank Williams song?" Yeah, I know that song. Max set off to help me find her.

I passed by the staff person for Country House, who said, "Hi Bill. She's over here in my house. I just saw her dancing." I headed down the long hallway of Country House and here she came in her bright red sweater, walking toward me from the far end of the corridor, a warm smile on her face.

I think she's getting the hang of it.

This year's critter

Sitting on a bench in a visiting area this afternoon, May looks straight ahead and says, "This is this year's colander...no...not that... Critter! This is this year's critter. They've all come out. They're all..." (and here she reaches out with her hands and shakes them back and forth).

"Are you describing something you're seeing?" I ask.

"Yes."

"Where?"

"Right there." She points toward a short table about three feet in front of us. It's surface is made of thin slats with half-inch gaps between them. A potted poinsettia occupies the far end of the table.

"Show me," I say.

She walks to the table and, again waving her hands around, roughs out a shape about the size of a large cat in the space opposite the poinsettia, then sits back down beside me.

"That's this year's critter?" I ask.

"Yes."

Activities room

They were getting ready to sing "O Come All Ye Faithful" when I showed up this morning. Max, the activities director, had distributed porcelain bells to a favored few, and I was happy to see that May was one of them. She was poised, bell at the ready, but suddenly everyone was calling her name and pointing toward me. She looked up and smiled, and searched for someone to take her bell.

We sat on the bench outside the activities room and she asked me what I had been doing.

A little hope

Looked in May's closet this afternoon and there were no clothes. Looked in all the drawers of her dresser--nothing there. Asked a staff person and she said all May's stuff was hanging in the laundry room. They keep it there now, because she was putting clothes on and off all day. Seen that, I said.

She'd wear three pairs of panties, two pairs of pants -- often with the shorter pair on top so you could see all four cuffs -- and usually three sweaters one on top of the other. They said they'd put her in her pajamas at night, and she'd take them off and sleep in a pair of slacks. Yeah, did that at home, every night. But they've put a stop to all that by taking the clothes away. Said she's more settled now, not nearly as restless. And she was. I'd already noticed it. "Settled" was a good choice of words. She smiled. Seemed relaxed. Very nice visit.

Stopped at the nurse's station on my way out and commented on the change. They said it's been like that for a few days now. Said they had changed the time of day they were administering some of her meds, thought it had "evened her out."

So they're doing something. Thinking about the things she does, and how they can change them. Getting her settled, evening her out. Day after tomorrow it'll be six weeks. There's an adjustment period, they said. Right, of course. Six weeks sounds about right. A little hope, for the first time in a long, long time.

Thanksgiving at the movies

Who goes to movies at noon on Thanksgiving Day, you may be wondering. Dads with kids with instructions to stay out of the house until the cooking is done. College-age cousins trying to delay the inevitable. Pairs of women without families who planned to meet here because, well, you know... But only one dementia couple, if our experience was statistically valid.

She thought the parking lot was "spooky." She recoiled just inside the doors, because the entrance was too cavernous. She was hungry so I bought the large bag of popcorn, but then she didn't eat any. When I asked her why, she said she forgot and took a handful. But then she forgot again.

She slept through 20 minutes of commercials and coming attractions, and when they ended she woke up and said, "Let's go home!" I told her the movie hadn't started yet and she said, "Oh." When it did start, she gave it about 10 minutes and then whispered, "I don't like this movie." So we walked out. I asked her if she needed to go to the bathroom and she said yes. I escorted her to the door of the women's room and watched her disappear through it. Then I worried that there might be another way out on the other side, so I walked into the men's room and saw that it was a small facility with only one way in or out. Even so, over on her side, she was unsure of what to do. I heard a toilet flush and then her voice saying, "Bill?" I answered her and was heading in, but she walked toward the sound of my voice and met me halfway.

The only other thing open was McDonald's, so we went there. I bought two McFlurries. Hers made her shiver, even though she was wearing two sweaters and a heavy coat. I bought her some coffee to warm her up, but she only took a sip or two. She asked to change tables, away from the cold window. I found a spot across from the fake fireplace. We sat down and I continued with my McFlurry, but she wasn't drinking her coffee. She said, "Let's go home."

In the car I explained that we weren't going home; we were going back to her room where she was staying now. She said okay. We drove on in silence. I took her in, punched in the security code, walked her to her room, took off her coat, hung it up, and got ready to tell her goodbye. She said, "Will you come see me sometime?" I'd heard those very same words, spoken in exactly the same way, from three-year-old Kevin, 36 years ago, the first time we left him with a babysitter -- he thought his mother and I were never coming back.

I told her I DO come back, every other day. "I was here Friday, and Sunday, and Tuesday, and today is Thursday, and I'll be back on Saturday." "You do?" she said. I left her with a staff person and walked with a steady gait down the long corridor. At the end I turned and looked back. She was standing where I left her, looking. I waved and she waved. I'll be back tomorrow.

Holiday plans

Tomorrow it will be four weeks since I took May to live in the residential living alternative for individuals with Alzheimer's disease and other types of memory impairments. It will also be Thanksgiving Day. I am going to pick her up at the residential living alternative and take her to a movie. It can't be a noisy film, or a violent one, or a chaotic one, or a jarringly visual one, or one in which there's a terminal illness. Ice cream at the snack bar would be a good thing. A friendly ticket-taker with no exaggerated mannerisms. A row of seats all to ourselves. A restroom with only one way in and out. The less said about the holiday, the better. Thankful is not where she's at right now.