Uprightness

They think her extreme forward lean may be a side-effect from one of her medications. They have made a dosage adjustment, and when I saw her yesterday, I thought she was a little more upright. Here's what she takes:

Abilify

Acetaminophen

Benztropine

Donepezil

Lexapro

Lorazepam

Trazodone

A happy event

She doesn't talk much anymore. But she's glad to see people she knows, and she shows it by walking up close to them, leaning forward, and just smiling at them. She smiles with her whole face -- forehead, eyes and mouth. And she can stand there for a long time.

All the other families know her by name. As they pass by on their way to see their own loved one, they say "Hi May." She's a little slow on the uptake, but she stops and smiles back in their direction as they walk on.

Tuesday night I was a speaker at a dinner event for people who were beginning to consider their next step for a loved one with Alzheimer's. One of the other speakers lit up when he heard I was May's husband. "May looks after Lillian," he said. "She calls Lill her baby. They're really good together." The marketing director said May had helped her fold the napkins for our dinner. I wondered if I would get to see her, because the residents were in their dining room when I arrived.

Most of them start getting ready for bed as soon as they eat, but May was attracted by the hubbub in the Activity Room and came to check it out. The first person she saw was Mel, Lillian's husband. She walked in and stood in front of him and grinned broadly. People were trying to direct her toward where I was sitting. When she finally looked my way, she smiled anew and started shuffling toward me. She sat down next to me and someone brought her a dessert. She stayed for the whole meeting. I spoke first and then went back and sat next to her. She slept through the third speaker, while I rubbed her back with one hand and held her up with the other. She was happy to be there, smiling in her sleep.

'you can't really figure out why...'

A friend sends me a clipping about a study in which Alzheimer's patients were shown sad movies and happy movies. Long after the patients had forgotten what movie they had seen, they still felt happy or sad, depending on the group they were in. And they felt their happiness or sadness more intensely than a control group of individuals with normal memories. "Because you don't have a memory," says the lead author of the study report, "there's this general free-floating state of distress and you can't really figure out why."

I think that's what was going on back in July when May was so agitated: she thought she was supposed to do something, and she didn't know what it was, and she fretted about it with no let-up day after day -- the anxiety living on for days after the cause had been forgotten.

She's been easier in her skin lately. The smile is back. She moves more slowly, and finds it harder to carry on a conversation, and I often find her asleep sitting straight up in her chair, but the edge has been rounded off.

In seven weeks, she will have been living at the residential facility for a year.

Two hairs past a freckle

I was sitting with May in the activities room, watching an episode of I Love Lucy. After a while, she reached haltingly toward my thigh. I looked at her and she said, "I just need to see what time it is." I scooted my chair closer to her. She reached down for the hem of my pants, lifted it up, and stared briefly at my ankle. Then she nodded, put my pant leg back in place, and went back to watching Lucy and Ethel.

Notes-to-self

There was a phase of May's disease during which she bought a hundred or more notebooks with the expectation that they might serve as a surrogate memory. Most of them were never used. But as I was cleaning out a file cabinet this week, I came across a series of reminders spread across three different notebooks. They all involved socks for our daughter Keely, both sending and receiving. 

The first four entries below were from consecutive pages in a large memo pad, and last two were stand-alone entries in a logbook and a small note pad. I look fondly on the brackets, arrows, bullet points, boxes and cloud patterns -- a penchant for organization that is gone forever, now.  

Fearful

Walking our usual route today, she was afraid of a fake house plant in the northeast turn of the corridor. "That scares me," she said, shying away. Walking in the garden outside, she stopped short and said, "They don't want us here." Passing by a room where other residents were playing BINGO, she turned her head and said, "Don't make me go in there." She's starting to pick out patterns in the carpeting that need to be carefully walked around. Not many smiles today. I talked to the site manager about it. She said everyone was aware. "It's the disease," she said. "She has entered a new phase."

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."

Earl news

I stopped in to see May today and everyone was out on the patio, taking in our first day over 60 degrees in a while. May was sitting on one bench with Eleanor, and Earl was sitting on another bench with Paul. Carmen, the afternoon activities staff person, looked at me and said, "She tells Earl, 'I have a HUSBAND!' She gets mad and walks out of the room. Been doing that for three or four days."

Earl was glaring at Carmen. For some reason, she pointed to me and said, "That's her husband!" I think she wanted to see a rumble.

Behavior change

I haven't been writing much lately -- mostly because we've been in the longest period of stasis I can remember since this whole deal started about six years ago. That still seemed to be the case when I visited her this afternoon. She smiled and laughed. But I was summoned to the nurse's office and asked to okay a new medication. The nurses looked worried. They said May has been attacking the staff. When I asked what that meant, one of them said, "Like she turns into Mike Tyson." I asked how she was at night and they looked at the night nurse -- she said it happened at night too. It's a form of anxiety, they said, like she wants to get out of her skin. They're going to try an anti-anxiety drug. Several of the residents are on this same med, they said, but the look on their faces was not reassuring.

Earl

It's been coming on for a while.

Whenever I would visit during a group activity, May and Earl would be sitting together. May would greet me enthusiastically, but Earl would look jilted. If we went for a walk, Earl would soon catch up with us. On the last few visits, I noticed that the staff would spring into action, as if to protect me from the truth. "Come on, Earl," they would say when they saw me coming. "Come with me, Earl." Earl never wanted to go. I felt bad for him, and would always try to include him.

Today when I got there, May was nowhere to be found. The staff flitted around nervously. I told them to relax, that I was sure I could find her. But she was in none of the usual places. Carmen, who runs the afternoon activities, offered to help. I said, "You don't suppose she ran off with Earl, do you?" Carmen looked at me seriously and said, "How do you feel about that?" I told her I was fine with it. "Come on then..." she said and made a beeline for the residential wing that Earl lives on. I told her I didn't want to walk in on anything...

She insisted that I follow her. We got to the living area of Earl's wing just as Earl was coming out of the bathroom. May was at the dining room table waiting for him. She was glad to see me and headed back to her end of the building with me. I felt bad for Earl again, but it didn't take long for him to catch up with us. When May saw him coming she whispered, "That's my guy..." We were a threesome for afternoon BINGO.

So it's all out in the open now. The staff seems relieved. It must have been really hard on them, the coverup and all...

Unwanted attention

She stopped me on our walk today and pointed toward the Foosball table. "Wait," she said, "I need to tell you this -- one of those guys thinks I'm cute, and I don't want to have anything to do with that." She put her hands out as if to ward off something bad, and stepped away from the table.

"One of the Foosball players thinks you're cute?" I asked. She nodded yes, and made a face.

"Well you are cute, but you don't need that kind of attention from a Foosball player?"

She shook her head, like no possible good could come from that.

Bogart & Bergman

I was telling her goodbye, and that I would be back. "Not tomorrow, but soon..."

She interrupted to say: "Maybe not today, maybe not tomorrow, but, uh..."

Amazing. With all that has been lost, the script of Casablanca is still in there!

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."