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Tired, Confused, but Enjoying Life

Our lives now are a interesting mixture of good and bad things. As I have said in earlier posts, Kate has been getting up earlier the past few days. That was true again yesterday. For me, that is good news. It gives us a little more time together which I feel is especially important on the days we have a sitter. The flip side of that is that she has also been tired during the day. The past two days she has gone straight to bed upon returning home from lunch. I’m not sure how long she rested (slept?) on Wednesday, but yesterday it was almost two hours. She might have rested longer had I not waked her.

We went to Barnes & Noble where we had another one of those confusing times when she didn’t realize I am her husband. She was on her iPad. I was on my laptop. I reached over and put my hand on her arm. She said, “Are we friends?” I said, “Very good friends.” She gave me a skeptical look. At first, I thought she was playing with me, but it became clear that she was not. I said that we had been married 55 years. She looked surprised and said, “Let’s talk about this later.” That comment suggests that she expects us to be together even though she is unsure of who I am. It also suggests a certain comfort level in being with me. These moments tend to catch me off guard. My rational mind leads me to think that she either knows me or not, and that would cause her to behave in different ways. Instead, she acts like everything is normal. Then she says something that doesn’t match what I would expect. There is so much that I don’t understand.

I am just now beginning to understand that when she asks where we are “right now,” she often thinks we are out of town, almost always in her home town of Fort Worth. As we were coming home from lunch yesterday, she said, “Well, it’s been a nice trip.” On the way home from dinner last night, she said, “Where are we going to stay tonight?” I told her we were in Knoxville and would stay in our own house. She liked that. This confusion might account for the fact that she frequently picks up things to take with us when we leave the house. Often it is a tube of toothpaste and one or two toothbrushes. I have started suggesting that she won’t need them wherever we are going and might as well leave them at home. That has presented no problem. She is becoming very compliant. I suspect that she recognizes she gets confused and trusts me to keep her straight.

The change in her desire for help with her clothes has been dramatic in the past week. It was just a few days ago that she first asked for help with her bra. She has wanted help each day since. She was glad to hear that I have ordered new bras designed for seniors that fasten in the front rather than in the back. I’m not sure that will enable her to do it herself, but I thought it was worth a try.

Last night, we went to Casa Bella for opera night. It was another good evening. Kate expressed a good bit of enthusiasm after each song. Fortunately, the rest of the crowd did as well. She expresses her pleasure audibly during the music. It isn’t too loud. I doubt that anyone other than those sitting at the same table realize it, but I wonder if this could become a problem later on.

She went to bed right away after we got home. That is unusual and is an indication of how tired she was. This morning she got up to go to the bathroom shortly before 6:00. I got up when she came back to bed. As she got under the covers, she said, “Let’s not do this again.” I had no idea what she meant. When I went to the kitchen for breakfast, I noticed that she had not used our bathroom but the one off the laundry room. I am guessing that she forgot about our bathroom. That is not unusual. She has always used the other bathrooms more often than our own.

Despite all the confusion and the changes, we are still enjoying ourselves. I am amazed and happy. That is something I never expected this late in our journey.

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Halloween on Our Street

Kate and I moved into our present house 21 years ago this past July. Not long after that, I chatted with some neighbors while I was out walking. They asked if anyone had told me about Halloween. I told them I hadn’t, so they proceeded to inform me. I don’t recall any specific numbers, but I was surprised to learn that we get a lot of trick-or-treaters. We got very few at our previous houses, and the last one was only a quarter of a mile from the new house.

Since that time, we have discovered just how big a deal Halloween can be. During our first year or two we had around 200, but each year it has grown. Last night, we set a new record with almost 850 children who stopped by the house before we ran out of candy at 8:15. You might think that’s a lot, but it’s far from a record on our street. Our neighbor across from us said they had around 1200. They had more candy and continued until after 9:00.

We may not have the highest total number of trick-or-treaters, but we’re the only ones serving water. Yes, that’s right. I said “water.” This is something about which Kate has taken great satisfaction over the years. As we were making plans the first year, she said, “I’ll make sure to have plenty of water.” I said, “Water? I can’t believe kids would like that. They’re after anything with sugar in it.” She insisted. We had water, and to my surprise, it was well-received. As the number of visitors increased, I decided to buy a 5-gallon cooler for the water. Even with that, we have to refill it once or twice. After running out of candy last year, we had up to 20 people at a time waiting in line for water. That would have happened last night if we hadn’t run out of cups, 350 of them. We refilled the cooler twice. We dispensed about 11-12 gallons of water, so I am acknowledging to all that Kate was right. There really is a market for water – even on Halloween night. You don’t suppose that it was Kate who provided that knowledge to all those companies that bottle and sell it everywhere we go?

As you might expect, all this requires a little planning and coordination. Our first year in the house, I realized we were going to run out of candy very early and quickly went back to Target for more. We still didn’t have enough. We also learned that it made no sense to stay in the house and wait for the doorbell to ring. We found it much easier and efficient to sit outside. Kate tends to the water and I give out the candy. Of course, there are times when I have to go back inside to replenish our supply. Sometimes Kate would be alone for a few minutes when a large number would arrive at the same time.

Although it’s been almost eight years since Kate’s diagnosis, last year was the first time I felt that she had any trouble with her role as the “Water Lady.” I suspected then that this year would be different, and it was. For several months, I had planned to get someone to help me and just let Kate enjoy the children. About six weeks ago, I discovered that a couple that has been helping us with some landscaping goes all out for Halloween. The husband told me he and his wife had heard about the large turnout we have on our street and wondered if his wife and daughter could come to the house to see first hand what it is like. I told him that would be great and that I could put them to work. That worked perfectly. The daughter took charge of giving out the candy, and  her mother assisted with the water. Kate started out the evening by filling the cups with water. She was very slow. Ultimately, I started filling the cups. I was also in charge of replenishing both water and candy as needed.

Kate got cold and wanted to go inside. That left my two helpers and me to take care of things which wasn’t a problem. It’s just that I was hoping Kate would derive more pleasure from being with us. I felt this was her last time to be a part of things. I doubt seriously that she is likely to participate at all next year. Perhaps, the saddest part for me is that she never seemed to recognize that she was behind our having water in the first place. She used to have fun reminding me that it was her idea, and that I was wrong about its popularity. Last night she expressed very little enthusiasm for the entire affair. She did enjoy seeing the children for a while but tired of that much earlier than I would have expected.

So it was a successful night for trick-or-treating but also sad to think that this long-standing tradition will not be the same again.

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Dinner with Friends

Two weeks ago, I got a call from Marvin Green. Kate and I met him and his wife, Angela, ten or fifteen years ago when they joined our church after his retirement as a Methodist minister. Their daughter and her husband, both Methodist pastors, married our daughter and her husband 27 years ago. Marvin served as my backup Sunday school teacher when I was out of town and also led my dad’s memorial service. We have gotten together with them periodically for lunch or dinner since Kate’s diagnosis. It had been a while, and he was calling to see about our getting together. We did that night before last at Bonefish Grill.

We have always enjoyed socializing with them. This time was no exception. We were in such active conversation that we never got around to what I had been most interested in hearing about. They recently returned from a trip to Ireland during which they hiked from one town to the next during the day and spent the night in B&Bs. I guess that provides a good excuse for getting together again soon.

While Kate was not an active participant in our conversations, she got along well. I suspect Angela and Marvin didn’t notice much, if any difference, since the last time we were together several months ago. In addition to our own conversation, we saw two church members who were leaving shortly after we came in.

Toward the end of our meal a woman approached me, and said, “I know you, but I can’t recall from where?” I’m not sure what prompted me except that she is a very humorous and talkative woman, and I answered, “I was your first husband.” That led to an extended conversation. I told her our real connection was at Casa Bella on one of their music nights. Every time she speaks to me, she asks me to guess how old she is. I always guess around 70. She is actually 87 but turning 88 today. She is also the daughter of a man who had operated a clothing store that was well-known by folks who grew up in the city. It made for a fun way to end our evening.

I mention this because experiences like this do a lot for both Kate and me. As I have noted elsewhere, eating out has been valuable in preventing any feelings of isolation, something that often accompanies couple who travel this same road. It is even more than that. The experience of eating out with friends adds an extra measure of pleasure to our lives, and we are especially grateful for those occasions.

Our dinner with the Greens came a few days after the Robinsons visited us for lunch on Saturday. Since our relationship extends back to our undergraduate days at TCU, maintaining that connection is especially important. There are only a handful of couples we can say that about. As the years go by, the value of these friendships becomes increases. That is especially true for a couple living with Alzheimer’s.

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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.

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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.

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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.

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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.

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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.

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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.

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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.