A turning point, most likely

I think this is a turning point. In recent visits, she has not been as fearful as she was for those ten days, nor as smiley as she was that one day. But she's been different. It's made me look back on the other turning points.

July, 2005. I came home to find her curled up in the bed, saying she had lost control of the checkbook and didn't know how to get it back. We were overdrawn by $10,000. I knew something was seriously wrong.

February, 2007. She drove herself to her weekly psychiatrist's appointment, which was five minutes away -- two stop lights, one turn. She missed the turn and kept driving south for 30 minutes before calling me. I guided her back home by having her call out street signs as she passed them. I knew she could no longer drive herself even to places that were routine to her.

April, 2009. I woke up in the night to find her standing in the dark looking down at me. I did not know that this would be the first of many nights that she would stand in the dark of the bedroom or her closet, sometimes from shortly after midnight until my alarm went off at 6 a.m.

May, 2010. She started leaving the house during the day while I was working upstairs. She would walk to the bank and demand to see her money, or to the 7-Eleven to report that she was being followed and had left a two-year-old at home alone. I knew we needed full-time help in the house.

October, 2010. She looked at me and said, "I don't think I can take care of myself anymore." This, I already knew.

So she's been in the residential facility for nine months now. She's gotten the best out of all these great professionals have to offer. Looking at the timeline, it should be no surprise that it's time for a new chapter. What would I call this one? Maybe, a time of profound sadness. On Friday I found her sitting at the lunch table, slumped forward, staring blankly straight ahead, waiting on a meal that would not be coming for another 30 minutes. Tears were rolling down her cheeks.

A good day

She was her old self yesterday. The smile was back. As we walked, I said, "It's good to see your smile. You've been grouchy for the past ten days." Staring straight ahead and slightly down, she asked, "Why was I like that?" I said I didn't know, but I had been afraid it was going to be like that from now on. We had a nice walk and then I took her back to her place at the table, where lunch was being served. Nicole was behind her at the kitchen counter, and I walked back there and said, "She's much better today." Nicole responded with a facial expression that seemed to say, "Don't jinx us!" I asked how long she had been this way and Nicole said, "Since today. She took an early nap, that might be the reason." I flashed back to the early days of Microsoft Word, when you got a "tip of the day" every time you fired up the program. These tips were very practical -- except for one that would make an appearance every few months. It said, "That which goes away by itself can come back by itself." Apropos, here, I think.

An old memory is good therapy

When it starts to break down, it breaks down across the board: mental, physical, emotional. Yesterday she was walking out of her wing of the building just as I was turning toward it. I was a welcome sight to distressed eyes. "I'm so glad to see you," she said. After a hug, she whispered, "I don't like it here. They're not teaching me anything." We started walking our usual route and I noticed that her left arm was clutched toward her midsection. I asked if she had a stomachache and she said, no, it was her arm. I took the arm in both of my hands and massaged it as we walked. She said that helped.

There was a lot of random fear: "If I have to go home, I'm going to be scared," she said, out of the blue. Later, as we passed the dining room, she said, "If I have to go in there, I'm going to be scared."

Eventually, we stopped in the activities room where Carmen was visiting with two older, but more coherent, residents. One of them asked if I was ever going to bring Adam back, because he showed her how to play darts. At the mention of Adam's name, May managed a small smile. The other resident turned the topic toward the lunch menu, and whether she would be able to eat everything they served her. There was speculation about whether May was a good eater or not. I said, "I'm sure she eats everything. That's how she was raised, back on the ranch. She couldn't leave the table until she had cleaned her plate." May smiled at the memory, so I decided to stick with a winner.

"When she was a teenager," I said, "her job in the summer was to have the noon meal ready for all the field hands when they came in. The noon meal was the big meal. It wasn't called 'lunch,' it was called 'dinner.' The men might be baling hay or harvesting wheat, and they would be hungry in the heat of the day. The summer that May was reading Gone With the Wind, she would lose track of time. She would look up and see the trucks coming toward the house, and she had not begun to prepare a meal. She was in trouble with her dad most of that summer, until she finished the book, and there were a lot of pages in that one." Everyone was laughing and saying, "Is that right, May?" She was nodding her head and smiling grandly. At that moment, she was not afraid.

The smile

Here's the smile that people used to talk about. It was the first warm, sunny day this past spring. Carmen took the ladies out on the terrace, facing into the forest preserve. Derby Day was approaching, which inspired Carmen to break out her collection of floppy hats and sunglasses. Everyone was in such good spirits that day, and they inspired me to take a picture. I'm glad I did.  

Troublesome

A note came to me last Saturday. On Sunday, another one. Two people with essentially the same worry: haven't seen anything on your blog for two months, what's going on?

The simple truth was, there hasn't been much to write about. Whenever I visited May, she would greet me with a huge smile and we would walk around the grounds for a while. Staff people would pass us and say, "There's that smile" and they would smile in return. It was a smile-fest. That's basically how it was when I visited last Saturday and again on Monday. But yesterday, Friday, it was not like that at all.

She was seated at her place in the dining room, waiting for lunch that was still 20 minutes away from being served. There was no smile when she saw me. She made a move to get up, but seemed to struggle. I walked her out into the hallway and she was heavy and sluggish in her movements, and bent forward at the waist. She whispered, "These people don't like me." As we walked the central corridor, she mumbled that she didn't "know what to do." And then, "No one can help me." She started to cry. A few steps later, she stopped walking, put her head down, and let the tears flow. A staff person came along and asked what was wrong. "Where's my mom," she asked. The food cart passed us by, so I walked her back to the dining room. Nicole, who runs May's wing, looked at her and said "What are those tears?" May answered, "Where's my grandma?"

The words were coming out differently--slower, flatter, barely audible. Her posture was different--pitched forward, no swivel to her head, as if she could not look to either side. The mood was desperate.

A few weeks ago, while cleaning out all the hats and gloves that had piled up over time on the shelves by the back door, I came across a cap that stopped me in my tracks. She used to hold it up and say, "I just love this cap." Yesterday was the day I finally remembered to take it to her. I asked if she remembered it and she said, "Yes." She put it on her head and I asked if it still fit and she said, "Yes." There was almost a smile, but not quite.

I went back again this morning to see if yesterday was an outlier or the beginning of something. She didn't cry, but her condition was only marginally better. We walked outside, and then I took her back in for lunch. She seemed confused about where she was, but she sat down when I asked her to. At this point, she usually says, "When will I see you again?" Today she just stared at my face in silence.

On the way out, I buttonholed Max, the activities director. "How long has his been going on," I asked. "It started this week," he said. "She still comes to every activity, but I can't get her to engage. There's no energy in her voice or her body language. That forward lean is new. Mentally, it's like she's trying to figure something out, she can't get an answer, and it frustrates her."

For me, it was if Max knew the answer, and didn't want to tell me.

When I first started going there last November, a woman named Arlene used to walk the halls saying "Where's my mother?" A few months later she would lurch along saying, "Food ... food ... I need food." Now I don't see her anymore.

I gave my leave to Max and turned toward the door to the lobby.

"The cap," he said, "where'd the cap come from? She won't take it off."