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A Montage of Surprises, Confusion, and Frustration, But a Good Day

People who know me well understand that I like routine and predictability. For more than six months I have been looking for Kate to get up on a schedule. I would definitely like it to be somewhat early. Around 9:00 would work well for me. Since I get up between 5:30 and 6:00 most mornings, that would give me plenty of time to myself and also allow me to spend time with Kate. For a while it looked like she would sleep as late as 11:30 to 12:30. Within the past two weeks she surprised me by getting up between 9:00 and 10:00. More recently, she has slipped back to sleeping late again. That has made me think she is settling into late pattern rather than an early one. But is she really settling into a pattern at all?

Figuring I had plenty of time this morning, I was slow getting Kate’s clothes ready for her. When I checked on her shortly before 9:00, I found that she was up and looking around for clothes. She was confused and had been going through a closet in a guest room where she keeps her dressiest clothes, the ones she never wears these days. She was glad to see me and wanted my help. I took her to the room that we call “Kate’s room.” We used to call it her office, but she gave up any activity of the kind that she would do in an office. It has the closet where she keeps all her everyday clothes. I grabbed one of the new sweaters I had bought the day before along with a pair of pants and walked her back to our bedroom where she could take a shower in our bath.

Her confusion continued. She wanted me to tell her what she should do for each step. As I was doing this, she said, “Who are you?” I said, “Do you mean ‘What is our relationship or my name?’” She wanted my name. I went back to the kitchen while she showered. When I returned fifteen minutes later, she was in bed. She almost always gets back in bed after her shower. Since she had gotten up earlier than I expected, I decided to let her relax a while.

I returned forty-five minutes later. I assumed she would still be in bed, and she was. When she saw me, she said, “Are you my daddy?” I told her I was her husband. She was surprised but didn’t challenge me. I told her I would like to take her to lunch. She gave her customary response, “Where are my clothes?” I showed her and then helped her put them on.

We ate at the Tupelo Grill for lunch. She wasn’t talkative, but we had a nice time. It was three weeks since we had been there, so we had conversation with our server about our respective Thanksgivings. A little later we had another conversation with her about our Christmas plans.

On the way home I turned on the radio. George W. was beginning his remarks at his father’s service. She listened attentively. When we got home, she wanted to stay in the car to listen to more. I told her I would turn on the TV, and she could watch the rest of the service inside. She liked that and quickly became engaged. She especially liked the music, but she was trying to follow everything. She was still watching when the sitter arrived. I was pleased to see that she gave the sitter a warm welcome before leaving.

When I got home, she and the sitter were seated in front of the TV though Kate was working on her iPad. They had not left the house at all. Apparently, the service and follow up afterwards had held her attention. That was a rare event. I was glad to know that she showed such interest. I am sure she couldn’t follow much of it, but she could sense the emotions of the moment.

After coming home from dinner, she started working on her iPad. Several times she asked for my help. At least one of those times, she had accidentally opened a different app. The others, however, involved her having trouble putting the pieces in place. Once was when she first opened a puzzle. The pieces were scattered across the screen, and she didn’t know what to do. This was not the first time this has happened; however, it always surprises me. Since she works puzzles six to eight hours a day and had just finished a puzzle, it seems like her “autopilot” would take over when a new one is opened. She encountered another problem that also seems surprising. There was only one piece remaining. It was the bottom, left hand corner piece and was clearly visible (to me, at least). She couldn’t figure out how to finish the puzzle. I showed her the piece and then showed her the place where it was to go. A few minutes later, she became frustrated and asked me if she could go to bed. It was just before 7:30. I told her that would be fine and got her night clothes for her and helped her get into them. I am hoping this will make it easy for her to get up in the morning. We will need to leave for my doctor’s office by 10:00.

Tomorrow I have my labs in advance of an appointment next week.

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A Good Experience with a Sitter

Next week it will have been a year and three months since I first engaged the services of an agency that provides in-home care. I arranged for a sitter to come for four hours three days a week, Monday, Wednesday, and Friday. Things have gone pretty well for the most part. The first couple of weeks we had a couple of sitters that didn’t work out. Since that time we have had the same sitter on Monday and the same one on Wednesday and Friday until recently when our Monday sitter had her own health problem. We had someone who took her place for two or three weeks before she also had health issues and won’t be back.

The agency sent a new person today. She is to serve on an interim basis until they can locate someone to be with us regularly. I didn’t get word about this until just before leaving for Thanksgiving, so I was a little uneasy about having someone new without my having met her previously. I suggested that they send her an hour early so that Kate and I could get to know her a little before I left for Rotary. I was prepared to skip Rotary if I felt at all uncomfortable.

My next concern involved getting Kate up in time for me to help her dress before the sitter arrived. She had gotten to sleep late last night. That made me think she would sleep late this morning. I was pleasantly surprised when I discovered she got up early. She was still getting ready when the sitter arrived. That gave me time to give her a brief orientation to Kate and her needs and routine. When she walked into the family room, Kate reached out to give her a hug before I could introduce two of them. Kate and I liked her very much.

Since it was time for Kate’s lunch, I suggested that the three of us go over to Panera. We went in two cars so that I could go directly to Rotary from there. I ordered Kate’s lunch while the two of them took a seat. When I got to the table, the sitter told me she liked the name Jesse. I was surprised that Kate had remembered our daughter’s name. That doesn’t happen often. I left for Rotary, and they were talking just like they had been longtime friends.

I called the agency from the car letting them know that I was pleased. I told them I would like to have her on a regular basis if that were possible. They are going to let me if if they can work that out. I certainly hope so.

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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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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.

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Very Chatty in the Afternoon

Yesterday afternoon, Kate took a nap and slept almost two hours. I think she was catching up for lost sleep over the past few days. She was definitely wide awake when she got up. We decided to go to Panera. In the car she said something about being very independent. We didn’t get very far before she recanted and said, “Well, you do drive me places, and shop for groceries, and take me out to eat, and take me to far away places.” When she finished her list, she said, “And, I don’t even know your name.” I told her. Then she said, “I knew that. It just wouldn’t come to me.” I said, “That happens sometimes.” I was interested that this occurred without her showing any signs of concern, anxiety, or fear.

When we got out of the car, she asked, “Did you know my mother?” I told her I did. Then she said, “What is her name?” I told her her, and she said, “You got it.” Once inside, I opened my iPad to write another post about a conversation we had had at lunch. Before I wrote anything, she asked me how many children her father’s parents had. When I told her, she wanted to know who they were. I went down the list of the 8 children who had lived. The first died in infancy. She began to reflect on all her aunts and uncles. That began a conversation (with her doing most of the talking) that continued for almost fifty minutes. It was interesting because she really couldn’t remember any specific facts, but she could remember qualities about them, at least how she remembered them. My only part in the conversation was answering her questions and agreeing with her memories.

In the course of our conversation she periodically said, “That goes in the book.” This is a photo book that she started to work on 5-7 years ago. For a couple of years, she edited photos on her computer, but she never got around to assembling them into a book. About three years ago, she stopped using the computer. She never said, but I think it just got too difficult for her. Her intention to create the book never ceased and continues to this day.

This time she talked more earnestly about the book. She noted that she had said she was going to write the book before. Then she said, “This time I’m going to do it.” She paused a moment and added, “And you’re going to help me do it.” I know it will never happen, but I believe it is good for her to have something for which she can aspire.

We finished the day with an evening of jazz at Casa Bella. It was an especially good evening. The vocalist is a member of our church, and we saw several other church members there. Kate didn’t participate much in the conversation at our table, but she enjoyed the music.

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People Make a Difference

I have often mentioned the importance of our eating out as a way of minimizing the social isolation that is often a side effect of a diagnosis of Alzheimer’s. That and our regular visits to Panera and Barnes & Noble go along way to keep us socially active. The beauty of these social encounters is that they are not lengthy ones that place any special demands on Kate. One might think of them as very superficial and unimportant, but I have found them of significant value. Yesterday, we had three that were especially nice.

The first occurred at Panera. As Kate was getting something from the drink dispenser, I put our things down at the table where we often sit. I was opening Kate’s iPad and the jigsaw puzzle app when I noticed a young woman with her laptop at another table. We exchanged “good morning” greetings. Then she told me that she had seen us a number of other times and was struck by what a loving couple we seemed to be. She had noticed my setting up Kate’s iPad, getting her a muffin, and helping her coming in and out of the restaurant. I thanked her and I told her that Kate and I have been married 55 years and about her Alzheimer’s. I hadn’t remembered seeing her before. It was a short encounter, but I was touched by her words and the way she expressed them. She probably doesn’t think did anything of importance. For me, it was an great way to start our day.

The second experience was having dinner with a couple with whom we have shared a table on several occasions at Casa Bella’s Broadway nights. They called on Monday and asked us to have dinner with them last night. Kate, of course, could not remember them, but I told her she would recognize them. Several times, before meeting them she had me repeat their names and try to remember them. It was impossible. It’s one of those times I try to imagine what it must be like for her, not remembering the names of anyone around her. It turned out to be a good evening. They are very easy to talk with, and Kate was not put on the spot in any way. They had remembered Kate’s drinking iced tea and brought her a box of tea to take home with her. We had a good time. I don’t believe they invited us thinking that they were doing something special for us. It was just a simple invitation for dinner, but it’s just one more uplifting social encounter.

We bumped into someone who stopped us on the way out. She had remembered me from my visits with Dad when he was in a nursing home. Her father sat at the table next to him. We often chatted, especially with her little boy. We talked with her family and her for about ten minutes. It turns out I have another connection to the woman’s husband. I had worked with his mother when her company was a client of mine quite a few years ago now. It’s been five years since I had seen her. She said her father, who was a good bit younger than my dad, is still there. It was another unanticipated encounter that was meaningful to me. Kate had not known the woman, so I know it didn’t mean much to her, but she enjoyed seeing her son. Children always brighten her day.

Once we were home, we watched a little of South Pacific. It was interesting to see that Kate was familiar with all of the music and some of the words. It was another good day and one that illustrates the power of both people and music.

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A Nice Day, But More Confusion

Kate surprised me by getting up early yesterday. She has always been slow to wake up, but I notice more confusion upon waking now. I walked in while she was brushing her teeth. Her first words to me were, “Who are you?” I gave her my name. Then she said, “What’s my name?” When I told her, she said, “You got it.” Then I wasn’t sure if she was just playing with me or if she really didn’t remember her name.

I think her confusion is why it takes her so long to get ready in the morning. Just taking a shower (usually short) and getting dressed sometimes takes over an hour. It often takes her longer to dry off after a shower than to take it. Since I am selecting her clothes, that doesn’t require much time except when she decides to wear something other than what I have chosen. The difficult part is getting the clothes on the right way. In the morning, I usually let her do that on her own. At night, however, I am usually with her when she undresses and puts on her night gown. It is not unusual for her to ask for my help. I see how challenging that is. That leads me to imagine greater difficulty getting fully dressed. I have started checking on her when she is getting dressed and ask if she would like my help. Sometimes she says she would. Most of the time, she likes me to leave her alone to take care of it.

Because Kate was up early, we got to Panera for the second day in a row. We were a little late, however, to see many people we know. Only two of the group from the Catholic church were there. They told us they had had a big crowd that morning.

At lunch, I said something that I wish I hadn’t. Our server asked us if we had done anything special during the week. At first, I said no. then I said, “Well, we watched Les Misérables for the seventh time in about seven weeks.” Kate was surprised. After the server left, she asked, “Did we really watch it seven times?” I told her we had. Then she said, “How could I forget that?” I said, “I don’t know.” Nothing more was said, and I saw no sign of any lingering concern on her part. I do wish I hadn’t said that. I don’t like to do anything that might cause her any additional anguish.

During our meal, Kate said she was tired. I thought that she might rest when we got home, but she didn’t. We spent the afternoon there. Late in the afternoon, we called our oldest grandson, Brian, who was 20 yesterday. Before we placed the call, Kate said, “I’ll just let you talk to him.” I don’t ever recall her saying anything like that before. I suspect it is another reflection of her insecurity. She is quite aware that her memory is poor. It does make conversation more difficult for her. We had a nice conversation with him and then talked with our granddaughter as well.

After the called ended, I asked if she would like to go to Barnes & Noble. She said, “What would we do there?” I told her she could work on her iPad. She didn’t want to go. Now that I reflect on it, I suspect she had forgotten that we normally go there to pass time in the afternoon. She seemed a little bored, and I thought it would be good to get out of the house. Instead we remained at home for another 45 minutes and then had an early dinner.

She wasn’t as chatty at dinner. She didn’t even ask my name or where we were. She was also little confused at home. She is clearly getting mixed up on the rooms and where she is to go. The previous night we had finished most of Les Miserables. I put it on and backed up about 45 minutes that we had watched earlier. Once again, she was enraptured right away. When it was over, we were off to bed. It was a little earlier than usual, but I thought that might help in getting her up this morning.

Just before 7:00 this morning, I heard her and went to the bedroom. She had just come out of the bathroom. I asked if she needed anything. She said she didn’t know. Then she said, “I think I’m supposed to go someplace.” I told her I couldn’t think of anything. She said, “I think it was to get my hair done.” I told her that wouldn’t be until next week and that it wasn’t yet 7:00, so she could rest a little more. About thirty minutes ago, I started some music. She hadn’t stirred, so I sat down on the bed. She looked up, and I told her I would like to take her to lunch. She said, “Okay.” I went back again at 10:35. She was awake but still in bed. I told her again that I would like to take her to lunch. She said she would like that. Then I said, “Of course, you would have to get up.” She said, “What will I wear?” I pointed to the clothes I had put on the chair beside her bed. I told her I had the shower all ready for her and pointed in the direction of our bathroom. She looked puzzled and said, “There?” I said yes. She didn’t look like she believed that was the bathroom. I told her to come with me, and I would show her. She got up and must now be in the shower. We’re running a little late, but we will make it. I’ll probably ask Anita to meet us at Panera.

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Last Night and This Morning

I was glad to see Kate get to bed a little earlier last night (9:00). That is something I am trying to encourage as a way of getting her to wake up earlier in the morning. I joined her about 45 minutes later. The other day, she told me the Russian choral music I like was beautiful. That and the fact that she was still awake led me to play that album as we went to sleep. It is very relaxing. I often play it while I meditate. I don’t know how long it was before we were asleep. I know that we only heard a portion of the album and that Kate mentioned several times how beautiful the music was.

This morning Kate gently opened my closet door where I was getting dressed. She was a bit groggy as she usually is when she gets up. She was looking for the bathroom. This is the first time I have been aware of her not remembering where the bathroom is. Of course, I am usually in the kitchen when she gets out of bed, so I wouldn’t know. Anyway, she was very confused. She was still dressed in her night gown but carrying the top she had worn yesterday. She said something about getting dressed. I told her it was still early (6:30) and that she might want to go back to bed after using the toilet.

I wondered how long she would sleep. It wasn’t long until I knew. She was up about 8:30. She had already taken her shower when I asked if I could help her. She told me I could get her something to wear. I put her clothes on the bed and showed her where they were and left her to get dressed. She was ready to go about 9:45 wearing exactly what I had picked out except for the shoes and socks. I considered that a small victory.

She has been in an unusually good humor this morning. As we drove away from the house, she said, “You’re a good guy. And you’re a good husband.” The she added, “What is your name?” When I told her, she said, “I knew that.” Then she asked my full name. I said, “Richard Lee Creighton.” She started to repeat it. Then she asked me to tell her again. When we arrived at Panera a few minutes later, she said, “Richard Lee Creighton.” She was beaming. We’re off to a good start.

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Kate and Music

Yesterday’s musical experience with Ellen had gone so well that after we got home last night, I turned on our TV to YouTube. I did a quick search of several other types of music videos we might enjoy with her or just for ourselves. I noticed a performance of Dvorak’s “Symphony from the New World” by the New York Philharmonic. I’ve loved it since I was introduced to it in our high school band and orchestra. I turned it on while Kate was working jigsaw puzzles on her iPad. In a few minutes, I noticed that she had put the iPad down and was absorbed with the music. It was 43 minutes long, and she watched the entire performance and loved it.

I’ve often mentioned that music has played an important role in our marriage starting with our first date. I don’t believe I have ever said that Kate’s musical tastes have always been narrower than my own. She has always enjoyed some classical music, but it has been limited to a few familiar works. We have had season tickets to our local symphony since the late 1980s. She has always attended because I was drawn to the music. She was not. In recent years, she has been even less enthusiastic. I think we attended only one concert this past year. The primary reason is that she is often tired after dinner. Except for our music nights at Casa Bella that start at 6:00, we haven’t scheduled anything at night in a long time.

Given that she hasn’t enjoyed classical music as much as I do, I’ve been somewhat surprised and pleased that she now seems to enjoy a much broader range of music like the Dvorak symphony she watched/listened to last night. Even more surprising is her appreciation of some of my favorite sacred choral music. She has never liked what she refers to as my “monk” music. Just yesterday, I played an album of sacred music by a Russian choral group and asked how she liked it. She said, “It’s beautiful.” I couldn’t believe it.

I’ve begun to wonder why the change. Could it be that its because she has heard me play so much classical music over the years? That would be a reasonable guess and, perhaps, the correct answer. On the other hand, could it have something to do with her Alzheimer’s. Maybe she has become more dependent on music as she has lost her ability to engage in other types of pleasure like working in the yard or working on photo albums on her computer.

I don’t think I will ever know for sure, but I am inclined to think that our binging on music since her diagnosis has led to a greater appreciation of a broader range of musical genres. We’ve been attending opera night at Casa Bella for most of the time since her diagnosis. The same is true for attendance at both the Live in HD at the Met productions and live opera performances as well. In addition, as part of my own therapy, I play music virtually the entire time I am at home. Thus, she has been exposed to music more than ever before. To me, the “why” is not so important. It’s just something I wonder about. The best thing is that we are enjoying more music together than every before.

I should also add that she doesn’t like all music. She frequently comments about the music we hear in restaurants. She tends to prefer softer more melodic music. That includes a lot of older songs and ballads and songs from popular musicals. I am sensitive to these preferences in my own musical selections. It seems to work for both of us.

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Music Comes to the Rescue Again

About an hour before we went to bed last night, I played another portion of Fiddler on the Roof that we had started Sunday night. I thought about taking it out and going back to Les Miserables which has been a clear winner every time I have played it, but Fiddler has been her second favorite as well as mine. I am glad to say that she enjoyed it once again. This is the movie version in which Topol plays the part of Tevye. She really likes him and often expresses it in the different scenes in which he plays a central role. She also comments on particular songs, saying something like “Oh, I like this one.” It is always a pleasure to see her enjoying herself in this way.

It is interesting that she continues working on her iPad while watching. That is her typical way of watching all of the musicals except Les Miserables. Any time I put it on, she drops her iPad at the first sound of music and doesn’t pick it up again. I’m not entirely sure why she finds Les Miserables so gripping. Clearly, part of it is the music. Part of it is the acting. I think it is also the fact that this one is a concert and not the stage production. That puts greater emphasis directly on the music as well as the singers. There are lots of close up shots of the singers who are very expressive as they sing. Kate finds them very moving. Whatever the reasons, she is absorbed by this particular production. It has been good therapy, and I plan to continue using it.