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Becoming Needy

As a caregiver who is regularly trying to assess where Kate is on her journey and the significance of the changes I observe, I also recognize the impossibility of define clean breaks representing the transition from one stage to another. There is just too much overlapping. I think what happens is that I have to notice a variety of specific things before I have a sense that she has made any significant changes. That is what has happened over the past few months including the past few days.

When I think about the specific things she has done, they aren’t sufficient by themselves to make me think we are at a new stage of our journey. I have commented on Kate’s increasing dependence on me, but it seems like it’s more than just dependence. She seems to be entering a stage in which she is needier than she has been in the past. I say that based on the increasing number of questions she asks. They aren’t simply about people’s names. For example, yesterday she got a glass out of the kitchen cabinet and wanted ice. She couldn’t remember where to go for ice. At the time, we were standing at the island directly across from the refrigerator where she has been getting her ice for 21 years including a few hours before. As with the loss of names, this doesn’t mean that she has forgotten and will never remember how to get ice again. It begins with one instance and gradually becomes worse. She also shows signs of forgetting which light switch to use to control a specific light or fan. Within the past couple of days she asked me where to turn off the light in a hallway to the bedrooms, a switch she has used multiple times each day for 21 years.

Another indication of her neediness, occurred yesterday when she told me she was glad to see me after I returned home from the Red Cross. It was just saying it. It was the sound of her voice that conveyed how much she meant what she said. It is also in the frequency with which she tells me how glad she is that we met at TCU.

One more of many examples is something that happened last night. As I got ready to take my shower, she called to me. When I reached her, she said, “What should I do?” I told her it would be a good time to get her night clothes and relax a little before going to bed. She looked a little puzzled. I asked if she would like me to get her night clothes. She said she would. Then she followed me to her room where I saw a gown on the bed where our housekeeper had folded it and left it for her. I asked if she would like that one. She said yes, and we went back to our bedroom. A short time later, using her hand signals, she asked if she could use her iPad, something that she needn’t ask at all.

About thirty minutes ago, I took her to the hairdresser. When we left, she was carrying a pair of pants and a wash cloth with her. When we arrived, she asked (again with hand signals) if she should take them in. I told her she could leave them in the car.

All of these things tell me she is not only more dependent, but feeling confused and needy as well. As these changes take place, I feel an increasing desire to help her. That seems like a pretty natural feeling to have after fifty-five years of marriage.

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Unusual Behavior Continues

Late this afternoon, I decided bring Kate’s extra clothes from the car. They included the the pair of shoes she had taken with her yesterday as well as the robe, night gown, shoes, socks, and the baseball cap. It was then that I discovered a pair of garden shoes she sometimes wears, and another 4 pair of socks. I was especially glad to see the socks as they seem to disappear over time. From time to time, I discover them in various places around the house, often just one sock.

As I would putting a pair of underwear back in its drawer, I noticed something that is not unusual (at least any more). All of the underwear I had carefully folded after washing them on Saturday were all messed up. Not a one was left undisturbed. As I say, this happens after every time I wash. Another unresolved mystery.

After coming home from dinner, Kate went brushed her teeth. She took much longer than I had expected. When she came to our bedroom, she was carrying a stack of books. One was on grandparents. Another was a book of editorial cartoons from our local paper. She also had a kaleidoscope that her brother, Ken, had given her quite a few years ago. It is made in the shape of a old airplane. She hadn’t remembered that it is a kaleidoscope. She put all of them on the night table beside the bed.

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More Unusual Behavior

When Kate was ready for Panera this morning, she was carrying a night gown, a pair of pants, and a pair of shoes and socks. To be clear, these were in addition to those she was wearing. On the way to the car, she picked up a baseball cap and took it with her. She left the clothes in the car but brought the cap inside with her. She hasn’t put it on. It is just sitting on the table.

Yesterday she had an extra pair of shoes with her. I asked if she were going to take them with us. She said, “I might want to change.” Once in the car, she did change. The others are still there. She and I forgot to take them in last night. Now we have two extra pair of shoes.

There are so many things like this that those of us without dementia can’t understand, but they must make sense to her.

Postscript at 2:30 p.m.

I am at Whole Foods waiting for Kate who is getting her monthly facial. I thought I would add something to my earlier post. We came back to the house after lunch. We had just enough time for a short break before leaving for the spa. When I went to the back of the house to see if she were ready, I noticed that she had put on another top over the one she was wearing earlier. She had a pair of underwear in one hand and another top in her other hand. She held the underwear up and looked at me as if to say, “Should I take these with me?”  I told her I thought she could leave them. Then she held up the top. I told her I didn’t think she would need that either. She left both of them without questioning me at all. Apparently, she was just wondering if she should take them. I answered her question, and that was that. What will remain unknown is what made her wonder about that in the first place. So many mysteries.

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Strange Behaviors

Tonight Kate came into our bedroom carrying a night gown, a heavy knit sweater, and a tee shirt we had bought on a trip to Africa. It reminds me of similar things she has done in the past. For example, as we left for Barnes & Noble this afternoon, she picked up two framed photographs to take with her, one of her father, the other of our son. A few days ago, she took a pair of underwear and socks with her when we went to dinner. She left them in the car, but several months ago she took an extra pair of socks with her into a restaurant and just put them on the table.

As I was entering this post, she asked me for help. She wanted something to wear for tomorrow. I think she must have intended the tee shirt and sweater to be for tomorrow. I asked if she would like me to get her something. She said she would. I took the tee shirt and sweater back to her closet and brought her something else that I thought would be more appropriate for tomorrow. She was happy to have help. Sometimes she goes for what is easy even if it means sacrificing a measure of independence.

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Another Surprise

I keep noticing and mentioning things that Kate does that come as a surprise given that her memory is so weak. She is now in bed with her iPad. I have a James Galway album playing in the background. A moment ago, she said, “I love this.” It was Sondheim’s “Send in the Clowns.” The recording she has heard most often is a vocal rendition, especially one by Barbra Streisand. As she listened, she said, “This is one without the words. They’re both good just different.” It surprised me that she was able to make the distinction and to express it. She has never been able to distinguish her iPad in its red cover from mine that has a black cover and is the larger version. This may be another way in which a person with dementia is able to respond appropriately to music.

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A Humorous Moment, But a Good Example of Everyday Life

We arrived at Panera about fifteen minutes ago. I forgot to charge Kate’s iPad last night, so I brought my old one for her. I turned it on and set it up for her puzzles while she got herself a drink. I placed my own iPad, the larger 12.9” model, opposite her chair. Then I went to the counter to order her muffin and our drinks. When I returned, she was trying to figure out to get her puzzles on my iPad. She couldn’t do it because she didn’t have my password. It did not surprise me that

What I think is interesting about this is that the iPad I put right in front of her was all ready to go. I thought I was making this easy for her. Instead, she chose my iPad across the table. This is just one of the many mysteries surrounding the way the brain works for someone with dementia. It is also a good example of the many daily experiences in which a caregiver attempts to prevent a problem or make things easier for her loved one only to discover it didn’t work the way you intended.

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More Surprises

The life of a caregiver and the person with dementia is full of surprises. I tend to think all of the surprises are ones that take the caregiver off guard. I know that can’t be the case. With the increasing loss of memory, the life of someone with dementia must be filled with surprises all day long. I can’t speak to those, but I can tell you what surprised me this morning.

I returned from my walk just before 8:00. I noticed quite a few leaves from a neighbor’s loquat tree on our driveway. That looked just like something Kate would have done. She has always liked to pull leaves from her shrubs and those of our neighbors when they hang over into our yard. I was surprised because she has been sleeping so late recently. When I got inside, I met her coming into the family room ready for Panera. She was dressed in a pair of pants from my gym suit. They were a little long for her, so she was walking on them. She was wearing an old top that I had put with a few other old clothes in the back of my closet. When I got back to the closet to change, I noticed that some of my things appeared to have been rifled the way a thief might have done. She had gone through my underwear drawer and a shelf at the back of the closet that had a stack of my tee shirts. They were simply thrown to the floor of the closet. When I went back to the family room, I found that she had moved two chairs from their usual spots and placed them side by side in a different place than where they had been. Later today when we got home from lunch, I decided to take in some of the things she put in the back seat of the car yesterday. They included a heavy fleece robe, a pair of shoes, one of her tops, and a pair of my socks.

Because she was up early, we had plenty of time to get to church, something that doesn’t happen frequently these days. We got to Panera by 8:30 and came home to change clothes for church around 9:30. It is difficult for her to participate in the service because she doesn’t understand a lot of things. It is also hard for her to read. She can’t read the bulletin or the lyrics of the hymns. There are some things that are still in the recesses of her memory. I watched carefully this morning. She remembered the Apostles Creed, the Lord’s Prayer, and some of the lyrics for one of the hymns.

I should also mention that on the way to church she talked about her time as the volunteer church librarian. She served in that capacity for 19 years. She is proud of the contribution she made and was able to point out some of the ways she helped members locate the materials they needed. She has a reason to be proud. She worked a lot for a volunteer. As she said to me this morning, it was something she enjoyed doing. She was a natural for the position. She and her family were very active in their church. She was very familiar with church life. She has a master’s in library science and 13 years experience as a librarian in the public school system. She also has the right personality for a position like that. She has excellent social skills and an eagerness to serve those who enter the library. I remember many times when we were traveling, and she would make long distance calls to various members following up on their requests for information. Frequently, she had picked up those requests on her voice mail after we were out of town. Despite the unusual behavior this morning, I am pleased that she is happy and remembering these things from the past.

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We’re back at Barnes & Noble

It’s a little over an hour after my postscript to the previous message. We spent a pleasant 45 minutes in the family room while she worked on her iPad, and I folded the clean clothes. Then she was ready for a change. Before leaving the house, she went to her room for something. When she returned, she had put on a new top over the one she was already wearing and carrying a heavy cotton robe and a pair of shoes. As she walked by the coffee table, she picked up a wash cloth I had just folded. I didn’t say anything. I just waited to see if she were planning to take them with her in the car. When we walked into the kitchen, I noticed that her top was on backwards and mentioned it to her. She took it off. Then it was inside out. She recognized that and started to fix it. Then she stopped and put it under her arm and picked up the robe, shoes, and wash cloth and took them to the car. I never asked why. I have done so on a few occasions, and she hasn’t been able to say. She didn’t bring them into Barnes & Noble. I would have said something if she had done that.

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Changes in Sleep Pattern

I was expecting (hoping?) Kate to be awake a little earlier today. I had a special interest. A man with whom I have had a friendship going back more than twenty years died this week. His service was at 11:00 this morning. At 9:00, Kate had gotten up to go to the bathroom. I thought that was a good sign. That would give her ample time to be ready to leave by 10:30. I told her about the funeral, and she asked if she could sleep a little longer. I told her she could. She got back in bed and was quickly sound asleep. Shortly after 9:30, I had dressed for the funeral. I knew time was getting short for her to get ready and asked if she thought she could get up. She really wanted to sleep, so I changed clothes and let her sleep.

About 11:30, I went back to the bedroom with the intention of waking her. I found that she had gotten up. We were definitely too late for the funeral, but we got to lunch at Bluefish close to our normal schedule. We ordered our usual meals, the salmon for Kate and a salad with a cup of shrimp and andouille sausage stew for me. Our regular server was out. She had cut her hand shortly before we arrived, but we were served by someone else who was as friendly as our regular one. We chatted with her about her educational and career plans. She hopes to start college in the fall.

We came directly back to the house after lunch. Kate brushed her teeth and went to the guest room where she is taking a nap. She is lying down on a love seat. That is a bit unusual for her. She has napped many times in the guest room but it has always in the bed which for me would be much more comfortable. This continues the change in her sleeping that I have been following the past several days. I intend to let her sleep as long as she feels the need. Since her diagnosis, it has not been unusual for her to take an afternoon nap, often right after lunch. Generally, she is up within 30-45 minutes. I am eager to see if she sleeps any longer today. I am hoping not.

I should say that I have not given her Trazadone since Monday night, so I can’t blame her sleeping on that. She hasn’t gotten to bed any later than usual. Everything seems to suggest that she may be entering a new stage. That would fit with some of the other changes that I have observed over the past week or two.

P.S. 3:04

Af few minutes ago, Kate walked in. She must have rested about 45 minutes. That’s not bad. I asked if she would like to join me for a while. She said, “For a while.” I take that to mean that she’ll want to go out sometime in the next hour. That would work out pretty well. We could go to Barnes & Noble and then to dinner. In the meantime, she is content with her iPad. I don’t know what we would do without it.

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Miscellaneous Happenings

I don’t make any effort to write about everything that happens in a day. I tend to post items that in one way or another seem noteworthy to me. I should add that there are simply too many things to comment on in a given day. I can’t remember them all. I tend to pick up on things that are either typical or unusual. The things I noticed yesterday fall in between these two extremes.

We began the day with conflicting signs of Kate’s expressing independence or dependence. That started with getting dressed. Normally, I am in the kitchen (my “office”) when she gets up, takes her shower, and dresses. This morning I went back o the bedroom to check on her, she had just gotten out of the shower and was beginning to get dressed. Before walking into the bathroom to brush my teeth, I noticed that she was about to put on her pants. She was looking carefully to see which was the front and which was the back. On quite a few occasions, I have noticed that her pants were on backwards. A few times I have told her and given her the choice as to whether or not she takes them off and puts them back on the right way. This was my first time to watch her work so hard to get it right. It took a while. She ended up taking them off and putting them back on. She must have put them on the backwards. This is a situation in which she could have asked for my help. She didn’t, and I thought I should give her a chance to do it herself. I believe I made the right decision. She had to work, but she got. That is always best.

I put her morning meds on the island in the kitchen. A little later she walked in dressed and ready for Panera. I told her the meds were on the island. She said, “I can see that.” This is an instance in which she felt she didn’t need or want my help. From past experience, I know that she often doesn’t see them.

I noticed that she was carrying a pair of socks that are not the ones normally kept in her sock drawer. As we got ready to leave, she asked with hand signals if she should take them with her. I told her that would be fine. I didn’t even try to imagine why she wanted to take them. She was already wearing socks. Once we were in the car, she stuffed them into a side pocket of her door.

Before getting out of the car at Panera, she said, “I’ll get a table, and I’ll let you take care of everything else.” Of course, this is what I do every morning except that I also get the table and put her iPad at her place. She occasionally does something similar at restaurants. She says, “Order for me.” Once again, I always order for her. I was surprised the other night when the server told us the entrée special, and Kate immediately said, “That’s what I want.” It was a good choice too. I wish I had gotten it myself.

Only one thing at lunch was particularly worth noting. As we were eating, she had made a comment about being glad she had married me. Then she asked, “What is your name?” I told her. Then she asked, “What is your last name.” That was followed by asking me her father’s name. She didn’t say anything following these questions and their answers. This has happened a number of times. At first, I thought she was joking. Now I think the link between my name and me is beginning to weaken. Clearly, she still knows me and that we are married, but the label is not as strong as it used to be.

As we got in the car after lunch, she got her socks out of the pocket in the door as well as some used paper towels and said, “Are we turning the car in?” I told her no that this was our car. A few minutes later, she unfolded the socks she had carefully folded earlier and said, “I want to take these with us?” I can’t be sure, but I think she meant “when we move to Texas.” She still brings that up periodically even though we have no plans to move. Then she told me they were winter socks and would need them.

Just before we arrived at home, she told me that she was going to take a nap if that was all right with me. I told her that would be fine. Then she told me not to let her rest too long because she wanted to be able to go to sleep tonight. A few minutes later we drove into our driveway. She asked me to stop and let her out. She wanted to work in the yard. She said she wouldn’t stay long. That means no nap today. That is no problem. I don’t think she needed it anyway. Besides that, she doesn’t usually go to sleep.

She worked outside for about an hour. Periodically, I looked out to see what she was doing. I noticed that she was pulling leaves off our Japanese Red Maple from which she had not pulled off all the leaves before winter. It was coming back nicely. Like last week when she worked in the yard for the first time in months, I had very mixed feelings. I was glad to see her enjoying herself outside. Over the years, this has been her most enjoyable activity. On the other hand, I love the tree and hate to see it denuded in the same way as the rest of our shrubbery. The good part is that it is tall enough that she can’t reach most of the leaves.

After coming in the house for a few minutes, she was ready to leave again. I packed up my computer and her iPad and got cups for each of us, and we were off to Barnes & Noble. When we drove out of the driveway, I looked at the Red Maple. She had removed all the leaves on the lower branches.

On the way to Barnes & Noble, I turned on a Ronnie Milsap album. Sometime in the 80s, we attended a concert of his. Kate had enjoyed him, and I bought the CD. I reminded her of this. Moments later, she asked me his name. I told her, and she said, “I’m sorry; I know I keep asking you this?” I told her she could ask me as many times as she wants, that I am glad to be able to answer her. She thanked me.

Tonight, after returning home from dinner, she sat in her chair in our bedroom working on her iPad. I had turned on a recording of CBS Sunday Morning. During one of the segments, she stopped and watched the TV. When it was over, she asked if she could use her iPad. As always, I said yes. Later, she asked if she should get ready for bed. I told her that would be fine. Once again, we had had a good day.