Little Things

As much as I have learned as a caregiver, I never fully recognize all the challenges that face someone with dementia. Two examples come to mind. One just happened. We are still at Panera, and Kate wanted to go to the restroom. She said, “Does this place have a restroom?” I told her it did. She said, “I’ll be right back.” From past experience, I knew that she would not remember where to go, so I said, “Let me show you where it is.” She said, “That would be nice.” I walked her to an area where you can see the “Restrooms” sign about 20 feet ahead. The sign had an arrow pointing to the left. I’ve learned that she has a hard time reading signs, so I thought about telling her to turn left. I immediately recognized that she would see the doors to both the women’s and men’s rooms. Again, she can easily miss the signs, so I walked to the door to the ladies’ room. Thinking she would no longer need my help, I started to walk away when I noticed that she started to push the door on the side where it is hinged rather than the other side with a brass plate. She was puzzled until I opened the door slightly, and she walked in. This is one more step in the learning process. I probably won’t assume she knows which side of the door to push in the future, but there is always something else I will assume she knows. I am always learning. These experiences make me more understanding of people who make suggestions that I will immediately know won’t work. To complicate matters further, if Kate does something at one time, that doesn’t mean that she will have trouble the next.

Yesterday, I was struck by something else one might not think of as a problem. Kate must spend at least 6-8 hours a day working jigsaw puzzles. I don’t think I have mentioned this before, but she often works the same puzzles over and over. She frequently works a puzzle again right after finishing it. I am not sure why, but I do know that she likes the colors of some puzzles more than others. She also likes puzzles with cats. She probably has 150 puzzles on her iPad, but she still works several of them over and over again. I make this point because one might assume that this repetition makes it easier for her to complete those puzzles, but I see no indication that is true. At Barnes & Noble yesterday afternoon, she ran into a problem and asked for my help. She had completed all but one piece of a 16-piece puzzle, but she couldn’t figure out where that piece went. I pointed to the empty space and then to the piece that went there. She didn’t initially understand, but she finally moved the piece into its proper place. Coincidentally, as I was writing the last couple of sentences, she had the same problem with two pieces left.  I am just glad that she doesn’t seem to experience much frustration when she has to ask for my help.

Another Early Start

This time last week I had assumed Kate would continue getting up late, but I was wrong – at least for the past four or five days. This morning I checked on her at 8:30 and discovered she was already in the shower. I put her clothes where she would see them when she walked out of the bedroom and started making a few preparations for the Trick-or-Treaters tonight. About fifteen minutes later, I heard her call my name. When I reached her, I found that she wanted help fastening her bra. This is clearly becoming a new morning custom. She also wanted help identifying the front and back of her pants so that she could put them on the right way. That is the only help I gave her this morning apart from selecting and putting out her clothes.

We arrived at Panera shortly after 9:00. I suspect we will stay here for another hour or so and then go back to the house before going to lunch. I much prefer this schedule because we get to spend some time together. It also means I don’t have to rush her to get ready for lunch and return home for the sitter who arrives at 1:00. Getting up early lets us enjoy a more relaxed morning. I tend to think that is good for Kate, but it really is good for both of us. We’re off to a good start. And, I didn’t mention that she is in a cheerful mood as she has been for at least five days in a row.

Increasing Dependence

I suspect becoming dependent on others is something most of us want to avoid. I find this is true among most of the seniors I know. Yet there is a certain inevitability if we live long enough. Alzheimer’s has been the big factor in Kate’s dependence on me. She got along reasonably well until she stopped driving. Since that occurred following an accident, she never fought losing her car. She was bothered, however, by her dependence on me to get her from place to place. Even though she was getting out, I think she felt tethered to the house. That may account for why she still doesn’t like to stay around the house for extended periods of time. She likes to be out, and I have enabled her to do that.

Of course, there are some things we are glad to let others do for us. Kate has never shown any concern about my taking care of meals or the laundry. Neither has she been bothered my role in giving instructions to our housekeeper. One surprising area in which she has not asserted her independence is shopping for clothes. I can’t remember the last time she expressed an interest or need to buy new clothes. At first, I would initiate a shopping trip. She found it confusing to look through so many different options. Sometimes she bought things that she never wore. Gradually, I started shopping without her. Now I buy everything online. It is easier for me. The only problem I’ve had is getting the right fit. It seems we have settled into the right sizes. That is working well.

I think that retaining independence is even more important when it comes to the many everyday tasks in which we are involved. That is especially true for those of a personal nature like getting dressed, bathing, and using the toilet. Kate has often asserted her independence in these areas. For a long time she resisted taking my hand when going up or down stairs or curbs or getting in and out of the car. Now she is inconsistent. Sometimes she welcomes my hand. Often she asks for it. I am accustomed to her saying, “Hand” as we approach a curb.

Right now we are going through a transition to her becoming substantially more dependent. Until the past six months or so, she has resisted my involvement with her clothes. By that I mean selecting or helping her select what she wears. We are now coming close to my picking out everything she wears. She seems to appreciate this. I think it’s a little like shopping. There are so many options that she gets confused.

The latest change that has occurred in the past week or ten days is her asking for and/or accepting my help with dressing. It is only in the past few days that she has asked my help fastening her bra. That looks like something I will be doing a lot of from here on out. For weeks or months, she has asked my help in determining which is the front and which is the back of her pants. Now she is asking me to help putting them on. The same is true for her tops, and yesterday, she gave me her socks to put on for her.

She has always been a little slow to wake up in the morning. That is even truer now. She often seems very confused. This morning I checked on her and discovered that she was awake but still in bed. I asked if she wanted to rest a little more or get up. She wanted to get up. She looked like she didn’t know what to do. I suggested she take her shower. She asked where. I told her in our bathroom. Again, she asked where. I pointed to it. Then she asked me to help her up. Once she was up she took my hand and wanted me to walk her to the bathroom. When we got to the bathroom, she said, “What now?” I told her to take off her gown, and I would start the shower.

At moments like these, she is almost completely dependent, but once she got in the shower, she got along all right. I should say until she got out. Then she wanted my help getting dressed. She still has some ambivalence about my help. Sometimes she will say, “I don’t really need your help, but I feel more comfortable (with it).” She often says the same thing when taking my hand going up and down curbs. As you can tell, we are entering a new stage that is different for both of us. We are both adapting.

An Early Start Today

I don’t know what has happened, but Kate was up early again this morning. At 8:35, I heard her say, “Hey.” I was in the kitchen. Before I could get back to her, she had said “Hey” a couple of other times. Note that this is a new way to call me. Until the past few days, she has called my name. It may be that she is substituting “Hey” because he doesn’t remember my name. She was standing in the middle of our bedroom and wanted to know what she should do. I asked if she were ready to get up. She said she was, so I told her she might want to take a shower. She said, “Where?” I pointed to our bathroom. Then she asked about her clothes. This was a morning I had slipped and not put them out for her. I said I would be glad to get them. She said, “That would be nice.”

Fifteen minutes later, I checked on her. She was sitting in a chair across from the bed where I had laid out her clothes. I asked if she needed anything. She said no. Then she asked, “Who are you?” I gave her my name and said, “I am your husband.” She gave me her usual look of surprise. My curiosity got the better of me, and I asked, “Who did you think I was? Your boyfriend?” She said, “I don’t know.” I went to the bathroom to brush my teeth. When I returned, she said, “Are you my father?” I said, “No, I am your husband.” This time she didn’t look surprised and said, “I guess I’ll get used to it.”

I checked on her again at 9:40, she was in bed. It is not uncommon at all for her to get back in bed. Normally, she does this before dressing. I could see her top and pants on the floor. I asked if I could help her. She said, “Get me some clothes.” That was not said as a command but as an answer to my question. I handed her the top and pants. I asked if she were wearing her underwear. She said no. I found them and gave them to her. Her shoes and socks were on the bedside table. I said, “I’m going to leave you and let you dress.” She said, “Don’t leave me.” This, too, was not said with the sound of an order but as a plea. It turned out that she thought I was going to leave the house, and she would be alone. That sent me an important message about the value of having a sitter. She may prefer having me to having a sitter, but she doesn’t want to be left alone.

Visiting the Zoo

I have been increasingly concerned about Kate’s mobility in recent weeks. She has been unusually slow getting into and out of chairs and the car. She is also slower going up and down curbs and stairs. Thinking it might be her arthritis flaring up again, I’ve asked her if she is experiencing pain. Each time she tells me that she feels no pain at all, that she is just being careful. I can’t help thinking this is a result of her limited physical activity. When she used to work in the yard, she moved around from place to place. It wasn’t like walking for exercise, but it was much better than remaining in a sitting or lying position all day.

Lately, I have thought about getting her to the zoo or to a couple of the museums in town. Yesterday was the perfect day to try out the idea. The temperature was in the lower-70s without a cloud in the sky. After returning home from lunch, I told Kate it was such a beautiful day that I thought we should get out. She agreed.

She didn’t ask where we were going. She just got in the car as though we were going to Panera or Barnes & Noble. When we drove into the parking lot at the zoo, she said, “Where are we?” I told her we were at the zoo. A number of times I have mentioned the possibility of going to the zoo, and she wasn’t interested. That is why I didn’t tell her where we were going until we got there. Even then, I told her that I needed to renew our membership. That was true. Then I said, “We might as well take a look around.” She followed me in without raising any protest at all.

We hadn’t walked far when she said, “I don’t want to walk much.” I told her we wouldn’t stay long. I went prepared to leave after a short time if that were necessary, but it wasn’t. We had gotten there about 3:30, and they closed at 5:00. That worked out well. She loved everything. You would naturally expect her to be taken by the animals, and she was. Given her experience with gardening and the fact that the zoo has invested heavily in landscaping, it was no surprise that she really loved the trees, shrubs, and other greenery.

One of the highlights, as it has been on previous visits, was the Lorikeet exhibit. As you enter the area with its net covering the entire space, you are given a small cup of nectar to feed the birds. Since it was late in the day, they weren’t as hungry as they usually are. Only two birds came to drink from my cup and one to Kate. Another bird accidentally got into the back of the top Kate was wearing. I didn’t see it happen. I only heard Kate shriek. The bird got out quickly, and everything was fine. We had a great time. Kate was like a little child. We’ll definitely go back while the weather is still good.

Hyper in the Morning. Mellow in the Afternoon.

Kate’s behavior was been a bit unusual yesterday morning. It started when she got up on the early side again. We even got to Panera in time to see some of our regular friends there. It had been almost two weeks since we had seen them. She was wide awake and seemed almost hyper. She was quite talkative, mostly kidding me about the usual things, my name, my nose, and my graying hair.

It started as we stepped from our laundry room into the garage. I handed her a sweater. As she was about to put it on, I said, “You could put it on before you get in the car.” She said, “Men.” She followed that with something like, “You say the dumbest things.” Once we were in the car, she asked my name. When I told her, she just laughed.

When we walked into Panera, we saw the group from the Catholic Church sitting across from the table where we usually sit. Normally, Kate would walk directly to the drink machine while I greet our friends. This time she said “Good Morning, Everyone” in a loud voice. Then she started talking about me. She was telling them that I am a big talker. They seemed surprised at the bold way in which she spoke since she is normally rather quiet.

Her talkative mood continued during lunch. Soon after we sat down at our table, she looked at me and said, “It’s a good thing you have a good personality.” I interpreted this to mean that I don’t look so good. As she frequently does, she commented on my nose and gray hair. We left the restaurant a little over an hour later. As we walked to the door, something unusual happened. Her mood changed dramatically. She gave me a serious look and said, “Are you going to divorce me?” I told her I love her and would never divorce her. In the car she said, “I want to thank you for your patience. You are very patient with me.” I am sure she had reflected on what she had been saying and was concerned about my feelings. It’s another good illustration of how well her senses are still working. The balance of the day she was in good spirits.

Examples of Confusion/Memory Problems

On the way home from dinner last night, Kate said, “It’s been a nice trip.” I said, “Yes, it really has.” She said nothing else the rest of the evening that she suggested she thought we were on a trip.

About 9:00 last night, I brought Kate her night gown and told her it was getting close to bedtime. I was about to put it on the bed where I usually put it, but she wanted me to put in on the ottoman near the chair where she was sitting. Fifteen minutes later, she got up and went to the bathroom to put it on. She came out in a few minutes with the gown in her hand and asked if she was to put it on. I told her she was. By the time she walked across the room to her chair, she had asked me three additional times if she should put it on.

Our Visit With the Robinsons

As I had expected, our visit with the Robinsons went very well. I received a call from them saying they were almost to our house as we were preparing to leave Panera. They arrived a few minutes before we did. It was just like old times. We came inside and chatted about fifteen minutes before leaving for lunch at Carla’s. We had a good lunch as well as conversation despite their having a very popular brunch that brought out a bigger crowd than we are used to on weekdays.

Kate handled herself well, but I suspect Angie and Tom noticed more changes in her behavior this time. Several times she asked who we were talking about because she had forgotten from moments before. She also asked to us to repeat ourselves a number of times as well. This could have related to the noise in the restaurant, but I know it is very common for her to forget who or what I am talking about within seconds. At times she was also asking because the conversation moved too quickly for her to follow.

I’ll have to hear from Tom about this, but they may have noticed more of her comments to or about me that are characteristic of her light-heartedness these days. At one point, she said something like “Men are like that.” I looked at Tom and said, “Remember that.” I will explain in an email to him later today. In recent weeks, Kate has made quite a few comments about men and women. They all tend to be statements about men’s views of women and the role women play in the world. I don’t ever recall her saying things like this at any other time during our marriage. Neither one of us has made sweeping generalizations about the other’s gender. It just hasn’t been part of our normal conversation. I’m not sure what has prompted this.

After lunch, we came back to the house. After a while, Kate’s eyes were closed as if she were napping. I see this as a normal response to the difficulty she has following conversations. It becomes too much for her, and she bows out for a while. I am glad she feels comfortable doing this.

After the Robinsons left, we went to Barnes & Noble. We were there two hours before leaving for dinner. Kate worked on her iPad without a break. She would have continued if I had not made early dinner reservations at Emilia. It’s a nicer place than most of the places where we eat on a daily basis. We enjoyed excellent meals in a quiet setting and then returned to the house.

At home, I watched part of the UT football game while Kate worked on her iPad. She was so engaged with her puzzles that she didn’t want to get ready for bed. She must have been well-rested from the previous two nights. I encouraged her to get in bed, but she said, “Let me finish this one.” She frequently says this, but she can never remember that she has said that, so I always have to stop her at some point. Last night, I decided she might come to bed if I got in bed first. That worked. We got to sleep quickly.

I was up at 5:30 this morning. Kate was up at 9:00 and has just finished her shower. This makes several days in a row that I haven’t had to be concerned about her sleeping too late. Funny how that happened just as I was ready to give in to her sleeping late. Now I wonder what will happen this week. One thing I know; it’s good to be flexible.

Another Nice Day. Confusion is a Constant

We didn’t do anything special, but yesterday was another nice day. Kate was cheerful all day. She got up rather easily around 10:00. I had turned on some music about 30 minutes earlier. I think she was awake most of the time between then and when I got her up. We got her muffin at Panera and then went to lunch at Applebee’s.

She was especially interested in my name, her name, and the names of her parents at both places. This was another of those times she was also confused about who I am and not just my name. This came up when she asked her name. When I told her, she said, “Where did Creighton come from?” I told her that was my last name and that she had taken it when we married. As on other occasions, she was surprised that we are married. This time she said, “Well, I guess it could be worse?”

Things went very well with the sitter. Mary was waiting for us when we returned from lunch. Kate asked who that was. I told her it was Mary who stays with her when I go to the Y on Wednesdays and Fridays. She didn’t express any displeasure at that. She greeted Mary warmly when we got out of the car. I set up YouTube videos of the Tabernacle Choir for them to watch. Kate was especially eager to watch them. When I got home four hours later, they were still watching. I was surprised. It is a very rare event if Kate remains in one place for four hours. I suspect she didn’t even go to the bathroom. Right after Mary left, Kate said, “I want to go to the bathroom. Where is it?” I haven’t mentioned this before, but on a number of other occasions she has asked the location of the bathroom. Once she called me as she was walking to the bathroom to ask if the toilet was working. That may have been prompted by a plumbers visit three weeks ago.

She got up on her own today. That enabled us to get to Panera at 10:45 for her muffin. I was glad we got off to a good start since Tom and Angie Robinson are coming in for a visit today. They should be here by 11:30. We’ll meet at our house and then go out to eat. We have been visiting back and forth for almost 50 years. We have experienced a lot of changes over the years. I remember when we used to pack up all the children’s paraphernalia and stay overnight. We simplified that later on. Now we just make day trips. We eat out, enjoy one another’s company, and return home. As always, I will be interested in how Kate handles herself. She has changed a lot since they were first aware of her Alzheimer’s, but she still seems to mange well in social situations. There will come a time when she doesn’t. I don’t expect that to happen today.

A Nice Day, But More Confusion

Right after we sat down for lunch yesterday, Kate said, “Who are you?” I told her, and she asked, “What’s my name?” Then she asked, “Are we related?” I said, “Yes, we’re married.” She looked at me in disbelief and said, “Married?” This led into questions about children. When I mentioned our having a daughter, she was equally shocked. She looked so puzzled that I was afraid to say too much. I thought that might be more disturbing than helpful. Most of the time we have this kind of conversation she simply accepts what I say. This was one of several times she seemed disturbed about not remembering.

We returned to the house after lunch. We had about an hour before her appointment for a massage. I thought she might work on her iPad during that time, but she was tired. She sat down in a chair with her iPad but immediately closed her eyes and went to sleep. That is something else that is not typical. She often rests but rarely goes to sleep, especially sitting in a chair. She usually moves to our sofa or to our bed.

We came back to the house after her massage. As we turned on to the road leading to our neighborhood, she said, “I used to live around here.” When we approached our house, she pointed to it. I said, “Does that look familiar?” She said, “Our house.” She said this in a way that made me think she knew it is where we live now. I pulled into the garage, and she saw her collection of Dr. Pepper signs and knick knacks. She said, “Oh, I remember these. I think I used to live here.” Once we were inside, she commented on the family room and said something about having lived here in the past. I told her it was where we live right now. She expressed some surprise but not the kind of disbelief she had shown in our lunch conversation.

I gave the iPad to her, and she took a seat in the family room. Instead of working on her iPad, she picked up her Big Sister photo book. She spent about ten minutes looking at it when she received a phone call from Meg Wright, a longtime friend from Dallas. She was a bridesmaid in our wedding. I had shown Kate the picture just before she called. That turned out to be a good opening for their conversation. She handled herself beautifully. She was very natural. If I hadn’t known better, I would have thought she was perfectly normal.

When she ended her phone call, she picked up the photo book again and spent another twenty minutes going through it. I have heard other people talk about the value of a memory book, but I am getting a better appreciation now. Going through multiple photographs of various family members jars her memory in a way that is much more powerful than my telling her about her father, mother and other members of her family. Once again, it reinforces the impact that her intuitive qualities have. I saw no sign of puzzlement as she leafed through the pages. She continues to identify specific pictures that she especially likes. They aren’t random choices. She keeps noting the same ones. She really connects with them.

We topped off the day with dinner at Casa Bella. This is the second week they are featuring music from Les Miserables. Since we had attended a performance last week, we ate in a separate dining room than where the music performed. We had a good meal, but I did find it sad that she is completely forgetting all of our memories of the years we have eaten there. She asked me the name of the restaurant, but the look on her face told me there was no recognition. During the meal, however, she did say, “I remember being here before.” When she asked about dessert, I told her we were going to have the Amaretto cheesecake. We’ve eaten this dessert 90% of the times we eaten there. She didn’t recall it, but she did love it.

When we got home, she picked up her iPad and took a seat in the family room. She continued working on it for over an hour before I told her it was time to get ready for bed. Earlier she had said she was very tired and wanted to get to bed early; however, she was so engaged with her puzzles that there is no telling how long she would have continued.

I got her a night gown and told her it was time to put it on. She took it and went to the bathroom next to our bedroom. I was working on this blog post when I realized it had been a while since she had left the room. I called to her. She responded but I didn’t see her. The lights were on in the bathroom and the room where she keeps her clothes. It was dark in the guest room. That’s where I found her. She was in bed under the covers wearing her clothes including her shoes and socks . Her gown was beside her on the bed. I told her I would like to have her join me in our bedroom. She got up, and we walked through the guest bath to the hallway to our room. She said, “I’ll follow you.” At that point, we were about 10-12 feet from the doorway to our bedroom. Even that close, she was unable to recognize where she was.

Once in the bedroom, I told her step by step what to do. She did, however, put on her gown without my help. She is sometimes unable to do that. That reminds me that this morning was the first time she has asked me to fasten her bra. I have been amazed that she has been able to do that until now. After putting on her gown, she went right to bed. She was worn out. I joined her in another fifteen minutes. She was asleep then. I hope that will make it easier for her to get up this morning.

As I say so often, it was a nice day; however, her confusion seems to get worse almost every day. She is fading away faster and faster, something I wish I could stop. I’m quite familiar with the last stage of this journey, but I don’t think there is a way to adequately prepare for it.