Confusion/Anxiety

I checked on Kate about 9:30. She was still in bed, but awake, and looking a little confused. I walked over to her and ask if she were getting up. She said, “I don’t know.” I could tell by the tone of her voice that she was confused. She seemed a bit calm, but she was similar to other times she has had an anxiety attack. I got into bed with her and asked if I could hold her. She nodded but didn’t say anything. I told her my name, that I was her husband, and would take care of her. I also said, “You are Kate Creighton. You and I have been married 55 years.” Not wanting to overwhelm her, in bits and pieces I also told her the names of her parents, her brother, and our children. I also mentioned our courtship and my working at the funeral home. Nothing clicked. Periodically, she asked my name and hers.

Then I put on some soft music. She said, “I like the music.” She didn’t say anything more and went back to sleep. I got out of the bed and told her that I would be back in a few minutes. I let Kevin know that I was going to be with her a while longer. It is approaching 10:30. She seems to be sleeping soundly. I have turned up the volume on the music. I’ll give her a little more time to sleep. Then I will see if I can gently wake her up.

No Serious Consequences, Just One of those Little Things

Last week while we were in Memphis, Jesse took us to a restaurant located in an old gas station. As we were leaving, Kate wanted to stop at the restroom. The rest of us waited in the reception area. It is not unusual for her to take a long time, so I didn’t worry when she didn’t come out in, what for most people, would be a reasonable time. In a few minutes, another customer approached the door. Discovering it was locked, she wited for her to come out. She got tired and went in the men’s room. Finally, I decided to check on her. I knocked on the door and asked if everything was all right. It was difficult to hear her through the door. She began to jiggle the door knob. I heard her say it wouldn’t open. I saw that it was the type of knob on many home bathroom doors. It had a pinhole in the center of the knob to allow a sharp object to go through and unlock it. I went to an employee who gave me a spindle that I thought would work. I was on the way back to the women’s room when I saw Jesse and Kate. It turns out that Jesse had been able to communicate to Kate and explain how to unlock the door.

We have a similar lock on a laundry room door that leads to our garage. Kate often locks it when we come home at night. In addition, she obviously locked the door when she went in. For this reason, I was a little surprised that she couldn’t figure out how to unlock it, but this is a good example of the kinds of inconsistencies that occur with great regularity. It is also a good example of my own misjudgment in not trying to explain to her how she could unlock it. My first thought was what can I do to get the door open. I believe I was influenced by my past experience in which explaining things can be very difficult. Jesse came at this with a fresh eye. She did the straightforward thing. She asked Kate if she could see the “thing” in the center of the knob. Kate said she could. Jesse asked her to turn it. She did. It was that simple.

It is always interesting to me how at ease Kate is under somewhat trying circumstances like this. I have lost her a number of times over the past few years. She has never panicked but responded very calmly to the situation. In this particular case, one might have thought she would bang on the door or call for help. She did neither. I’m just glad that the restrooms were right off the reception area where we were waiting. If we had remained at our table, we might have let more time pass. Then she might not have been as calm.

Our Clothes Saga

This may say more about me than about Kate, but I believe that issues involving clothes have been among the most frequent issues with which I have dealt during her 7-year journey with Alzheimer’s. In the early years, the problem centered on the fact that she didn’t hang up or put away her clothes. At one point, we had three bedrooms with her clothes stacked on the beds, furniture, and floor. For quite a while, I didn’t say or do anything to change her behavior. It was frustrating for her and for me. She couldn’t find anything to wear.

At the same time, she was eating more than she used to and gaining weight. That meant a lot of her clothes no longer fit. My response to that was to buy new clothes. What I didn’t count on (but should have), was their getting lost as quickly as the old ones. During one year, I bought her almost 20 pair of pants. She still couldn’t find something to wear. (Yes, I’m a slow learner.)

I decided the way to tackle the problem was to take pictures of the new clothes. I thought that would at least enable me to find them more easily. It worked for her tops, but her pants looked alike to me. They were either black, tan, or brown. I still had a hard time identifying the new (the ones that fit) from the old (the ones that didn’t). Gradually, I got better at identifying the different labels and sizes.

That prompted me to start getting rid of the clothes that didn’t fit. As Kate tried these clothes and tossed them aside, I would come behind her and take them to my closet. Little by little I gave them to our housekeeper whose church collected old clothes for those who needed them.

My problem was still not solved. Clothes were still scattered among our two guest rooms and a bedroom we call “Kate’s room.” That’s when I decided to reorganize her closet. I began to locate clothes that fit and started hanging them up. I put all of her tops on the left as you enter her closet and arranged them by color. On the right, I put all of her pants, also arranged by color. That has proven to be useful to me, and at one point, I think it helped her as well. I’m not so sure now.

To make my system work demands that I regularly pick up clothes that she has thrown on the floor or furniture and replace them on hangers in the closet. I frequently do this in the morning before she gets up. That way I can make sure that there are things she can wear that day.

One day a strange thing happened. Kate must have gotten so frustrated with clothes scattered everywhere that she started picking up her clothes and putting them in her closet. That was about two years ago. Since then, she has done a remarkably good job of not letting the rooms return to their previous unkempt appearance. That does not mean that she puts her clothes away after she wears them although she often does. Typically, she takes off her clothes in our bedroom and throws them on the floor or the chair on her side of the bed. They often stay there a day or so before I pick them up and put them away. At any rate, we do much better keeping her clothes straight and having clothes that fit.

Another clothes issue has been keeping them clean. There have been two separate parts of this problem. The first involves what she wears when she works in the yard. For three years or so after her diagnosis, she continued to wear her “yard clothes” when she was working outside. As her Alzheimer’s progressed, she started wearing her “good” clothes to work in. That was, and is still, not a problem for her, but it was for me. I wanted to know that she had clothes that she could wear to the various places we go on any given day. I didn’t want them messed up. That was especially true if they were brand new. I responded to this by giving up my efforts to get her to wear her yard clothes. That means her clothes get more messed up than I would like.

The second aspect of the clean clothes problem is keeping them clean with ordinary wear. It seems that it is next to impossible for her to wear something for even a short time during the day without getting it soiled. Almost every time she brushes her teeth she gets toothpaste on her clothes. When we are eating, she often drips food or drink on herself.

One of the things I have done that seems to have worked with these issues is to buy multiple pairs of LL Bean pants with an elastic waistband. I keep them on hand in different colors, and I can easily wash them at home. They have helped me a lot. Nowadays, I buy virtually all her clothes online. That has been a great convenience, and I have spent less money than what I was spending going to the local dress shops where she had shopped for years.

There are still other issues involving clothes that come up. They are ones that I simply accept. One of those started within the past year. For some reason, she started wearing 2 tops with her clothes, not always but most of the time. I know that layering can be a trendy thing, but Kate seems to pick tops that don’t match or complement each other. For example, this morning we attended church for the first time in quite a while. I have regretted this because we have both been so active in the church for as long as we have been members and believe it is an important connection to maintain. At any rate, I picked out something appropriate for her to wear. It is a very nice heavy knit shell and sweater combination and was pricier than things I usually buy. After we returned home from lunch, I suggested that we brush our teeth, change our clothes, and go to the Barnes & Noble Café. She liked that idea except that she didn’t see why she needed to change. I told her she was a little dressed up for a casual afternoon at Barnes & Noble. What I didn’t say was that I didn’t want her to get her good clothes messed up. She agreed to change and went back to her room to do so. When we she was ready to go, I mentioned that she hadn’t changed clothes. She said, “Oh,” and once again returned to her room. When she came back, she still had not changed. She had taken off the outer sweater but was wearing the shell with a casual tee shirt over it. The tail of the shell extends below that of the tee shirt. She was still wearing the same slacks and the shoes she had worn to church. I decided not to push it.

It turns out that she also was carrying two additional tops. She had taken one of them with us when we went to Panera the other day and simply put it on the table. She brought both of them with her in the car and took them into Barnes & Noble. She put one on the table and dropped the other on the floor.

Considering everything, I find that we have fewer problems with clothes now than in the past. I think there are three things that have made the difference. First, some of my organization has helped. Second, Kate has been more compliant when I suggest she wear something different. Finally, things are better because I don’t work hard to achieve my own goals regarding her clothes. I mostly let her wear whatever she wants. That is probably the most sensible thing I could do.

Difficulty Using the iPad

October 14, 2017

I have mentioned several times that Kate is having difficulty when she works on jigsaw puzzles on her iPad. At first, she tended to think there was something wrong with the iPad itself. Over time she has come to realize that “operator error” is involved.

The problem she experiences is that hits a button on the screen that takes her to options to buy more puzzles. She seems to recognize this is not something she wants to do. Her initial response was to close the iPad and put it down on the table when we are at Panera. Then I ask if I can help. She doesn’t answer. I pick up the iPad and get her back to the puzzle she was working on or a new puzzle if the problem occurred after completing her puzzle.

For months, I have encouraged her to simply ask me to help, and I would be glad to do so. This morning, for the very first time, it appears that she may be giving in to that. It occurred when she encountered a slightly different problem. She had almost completely finished a puzzle when she couldn’t see any more pieces. That was because there is a button at the bottom of the screen that removes all the unused pieces from the board when you hit it, something she had obviously done. When you hit it the next time, the pieces reappear. I showed her the button. Then I said, “But I want you to feel free to simply ask me to fix the problem if it happens again.” She said, “I will.” I said, “That makes me feel good. It makes me feel needed.” She smiled and went back to her puzzle.

I know that this doesn’t stop her from incurring any future problems. I do hope that it is one small step in strengthening her view of me as a willing helper when she encounters problems.

A Bad Experience with the New Sitter

As I probably conveyed in my earlier posts, I have been elated over the new sitter who has been with us twice. Today she failed us. I had planned two meetings this afternoon specifically because we would have a sitter. The first was with my friend, Mark, who is serving as an editor of my journal and uploading it to my blog. The second was a meeting I had arranged three weeks ago with our accountant.

Kate was tired this morning. She got up and had some juice and went back to bed. When she was still sleeping at 10:00, I was not worried and decided to let her sleep as long as she wanted. By 11:00, I felt I had to wake her up in order to permit her time to get ready for lunch and for us to go to lunch before we came back to the house in time to meet the sitter at 1:00. I try not to rush Kate and have found that this prevents problems. I checked on Kate shortly after 11:30. She wasn’t ready and asked me not to rush her. I went back one more time which irritated her. We finally got to lunch at 12:15. We had our meal at 12:28. I had to rush her to eat, and we left for home at 12:50. We were home at 12:55.

The sitter had arrived on time on her previous two visits. Today she was late. When she hadn’t arrived by 1:15, I called the agency. They tried to reach her unsuccessfully. I told them I could easily cancel the first meeting but that I really need to make the second one. They arranged for a replacement who arrived about 2:20. That gave me a short time to brief her before I left.

Kate had gone directly outside after we returned home from lunch. When I saw her working in the driveway about the time the sitter was to arrive at 1:05, I asked her to move to another location because I didn’t want to risk the sitter’s driving in the driveway in a hurry and hit her. Kate decided to come inside and got in the bed. She was resting when the replacement arrived. After giving her a short briefing, I got Kate up and introduced them to each other. Kate was just a little big groggy and not as awake as I would have liked, but I had to go. Kate decided she would go outside and was headed there when I left.

When I returned close to 5:00, the sitter was in the family room. Kate was in our bedroom working on her iPad. I thought that was fine but was a little disappointed because she had remained in the family room with the previous sitter even though Kate was resting on the sofa. It made me think that she had not been enthusiastic about the new sitter. After the sitter left, I was eager to hear what Kate thought about her. I went back to the bedroom where she had picked up her iPad. I said, “She seems nice.” She said, “Very nice.” That was all we said, but that was enough. I had feared that she might have had a negative impression. Even if she was not as enthusiastic as I had hoped, it was a positive response and definitely not negative.

I actually like the new sitter. Her name is Mary, and she is older than the one she replaced. Her husband is retired from the UT Medical Center. She has a daughter in college and a daughter in high school. She has been working for the agency since 2004. She is scheduled to return on Friday, but she is not available on Mondays at all. That means we may end up with at least two different sitters, one for Monday and another for Wednesday and Friday.

I will call the agency in the morning to discuss where we go from here, but it was a great disappointment that the original sitter did not show up. The agency told me that they would have to let her go for that. I have mixed feelings about that because I really liked her, but I also understand that the agency cannot accept “no shows.” It is a good illustration of what happens when trust is broken. I hope we can soon work out the kinks we are running into.

Salivation Problem

This afternoon Kate and I went to a movie, Columbus, at The Flick. This is the second time at there this week. Two days ago is when I made the entry about her being angry with me over not recognizing her salivation issue that lasted for the entire movie. Today I went with a minor concern over whether or not she would like the film, not thinking about salivation. After picking up our tickets and ordering soft drinks, we started to enter the theater when Kate asked for a napkin. I went back to the lobby and picked up several of them knowing that one would never be enough.

We went through the introductory video with recognition of the donors and some advertising as well as the previews. She used one napkin and asked for another about the time the film started. That left me with only one. At that point I knew she would not have enough to get through the movie, but I didn’t worry because she doesn’t usually have napkins throughout a movie. Today I was more sensitive to her salivation than two days ago. She was obviously struggling. She burped out loud a number of times and had used up her last napkin. I was getting concerned about burping and the possibility that it was loud enough to be annoying to others. I asked her if she thought we should leave. She nodded. We got up and left. As we walked to the car, I asked if she could explain what she was feeling. I asked if it seemed just like ordinary saliva. She said it was. I then asked if it was coming up from the throat or within her mouth. With her hands, she indicated that it was coming up from the throat. I then asked if she were able to swallow the saliva. She tried and was successful. I told her to keep doing that and see if that helped. She did. I didn’t say anything more.

She continued to have the problem all the way home but did not burp again. She did stop swallowing the saliva and kept a napkin to her mouth until we reached home. When we got home, she wanted to know if she could work outside. I told her that would be fine. As she is accustomed to doing now, she asked if she could use the clippers. Then she asked me where she could go. I told her she could choose to start any place she would like. She said the thought she would start out front and looked to see if that were all right. I told her that would be fine. We were now back to normal.

I should comment on what I mean by normal. It still appears that she doesn’t swallow her saliva most of the time. As I noted a week or two ago, she does periodically stop. I suspect that when for some unknown reason she thinks about the salivation, she stops swallowing. In the case of the movie, she is very inactive and, perhaps, that heightens her awareness of salivation. Then she has a reaction like many I have witnessed before. The interesting thing is that she uses paper products to wipe away the saliva all the time; however, she doesn’t always have the negative emotional response that she had on Wednesday and today. I don’t yet have an explanation for that.

Another First (or Second) with Anger

Kate and I went to dinner and a movie tonight. The latter is a rarity for us now. I have not been scheduling anything at night beyond dinner for several months now. This time, however, The Flick, our favorite theater, had a Thai film that started at 7:00. It sounded intriguing, and I thought it was worth a try. During dinner, I was thinking about how well the visit with the sitter had gone. I also felt I should add another journal entry specifically about how good-natured Kate has been today. Right now I want to make it clear that she seemed remarkably agreeable and at ease. It was not only how she received the sitter but also how she responded to my help on getting her clothes to wear out this evening.

What I didn’t anticipate was how radically her mood would change as we left the movie. On the way to the car she mentioned how miserable she had been in the movie. I thought that was because she didn’t like the movie. It turned out that it was the result of not having paper napkins or some other paper product to Wipe the saliva from her mouth. I discovered this when I inquired as to why she had been so miserable. She let me know it was because she didn’t have any napkins. Then I made the fatal error of telling her that I wish she had told me because I had taken several napkins into the theater with me just in case she needed them. To my surprise that angered her because I had not offered them to her. I told her that I didn’t recognize that she had been miserable. She said I must not care for her very much if I didn’t notice her misery. I gave her a couple of napkins. “Too little, too late.”

In the car on the way home, she said in a very angry tone of voice, “And I have never exaggerated.” I told her I hadn’t said that. She said, “You certainly did just a little while ago.” I let it go because I could tell this was one of those instances in which she had had some kind of misperceptions (delusion) that I had done so, and it would do no good to argue. Later at home she expressed the strongest anger I have ever heard from her. Unprompted, she said, “I have never exaggerated about anything.” I told I knew that she never exaggerated. She didn’t say anything for a while. My impression was that she had gotten emotional over her salivation. She was burping and making other noises. In a few minutes, she came out of the bathroom with some toilet tissue that she was holding to her mouth. I told her I wished there were something I could do to help her. She looked at me and spoke in a gentle kind voice, “Oh, I’m fine.” She seems to be back to normal right now.

Déjà vu

It has been a good while since I mentioned anything about Kate’s Deja vu experiences. I am only doing so now to indicate that they still continue. For example, as we sat at a stop light coming to Panera this morning, a man walked across the street in front of us. Kate said, “There he goes again.” She also continues to see people she “remembers” at the restaurants we frequent. I typically say, “So you’ve seen him/her/them before.”

Speaking of things that continue, Kate is still not swallowing her saliva, and I have not heard from her doctor’s office since I left an email message for the doctor. I have called the office and left a message for the doctor’s nurse. She called me about 3-4 weeks ago. I explained my attempts to contact the doctor. Two weeks ago, I sent a letter to the doctor who started her practice. In that letter I told him about the events that had transpired since the end of June. I have not heard from him or Kate’s doctor. Something is really wrong with respect to communication. I am only glad that it does not appear to be a significant problem. It was a year ago this fall that I first mentioned the problem to Kate’s original doctor who is no longer in the practice.

The Sitter’s First Full Visit

I have often said that we worry about lots of things that never happen while we are surprised by things that we never anticipated. That certainly applies to the first full visit of our sitter for Kate.

Kate went outside about ten minutes before the sitter was to arrive at 1:00. I told her that I was going to the Y and asked if she remembered Brittany who came to our house the other day. She didn’t remember at all. I would have been surprised if she had. Then I told her that Brittany would be here while I was gone. Kate asked why she was coming. I told her what I had said before her visit on Wednesday. I told her that I was just feeling bad about leaving her alone when I go out. Then without any coaxing she said okay. I was thrilled. It was so much easier than I had expected. I had worried about something that didn’t happen. At the same time, I interpreted this as another indication of the progression of her illness. I told her I wanted to give her a hug before I left. I did so and told her I loved her. I held her tight and tears welled up in my eyes. We kissed. Then she went outside to her yard.

The sitter arrived a little late (1:06 instead of 1:00). I started to tell her that I was a stickler for time, but I decided not to make anything of it. I could just wait and see if it is a habit. Kate was working in a flower bed in the back yard. I thought that worked out well so that I could show Brittany around the house and tell her a little more about my expectations. I reminded her that Kate has no short-term memory and would not remember her. I also told her that I thought the most important thing she could do was to make friends with Kate, “just get acquainted with her and also let her know more about yourself.” I told her that Kate could stay outside as long as she likes but to keep an eye on her.

It was 1:30 before I left for the Y. I left there at 3:45 and went to a Panera store in a different location from the one we usually visit. I did so to buy a gift card for the sitter to use if they went there sometime while I was gone. It was almost 4:30 when I got home. Brittany was sitting in the family room watching TV. She told me Kate was still outside. I looked and noticed that she was in almost the same place as when I left. That is the longest Kate has spent outside since the spring when the weather was cooler. Today is one of the most pleasant days we have had.

I went to the bedroom to take my gym clothes out of the bag and put them in the clothes hamper. Then I went to the closet and opened my top drawer to return the Y membership card that I had taken out of the drawer right before I left for the Y. I noticed that the top drawer was in more disarray than usual. I can’t claim that it is usually or ever neat, but I know where things are and can see them pretty easily. At first, I wondered if I could have messed up the arrangement of things in the draw that much when I took the Y card out. Then I opened the top draw to the right of the one where I keep my keys, wallet, and some cards. When I opened that drawer, I immediately saw that the contents were very differently arranged than usual. I use a microfiber cloth to clean my glasses. I keep it on top of the other things. It is a good size cloth and covers almost the full width of the drawer. I could only see a trace of it under several envelopes and cards. It was obvious that someone had gone through the contents. The last time I opened the drawer was yesterday morning. I went into the family room where Brittany was watching TV. I asked if she was sure that Kate had not come inside while I was gone. She said she was. Then I asked if she could have gone into two of my dresser drawers. She said she hadn’t. I didn’t push it. I didn’t expect her to say she had. It was still about 15 minutes before time for her to leave. I told her she could go. Then I went back to the bedroom to see if there were any other unusual things. The only thing I noticed was that a top drawer to Kate’s dresser was pulled out slightly. I think Kate has completely forgotten about having anything in it, and I have never opened that drawer at all.

I can’t be sure that Brittany was the one who got into the dresser drawers. It is possible that Kate had done it. I just think that is very unlikely. I have known her to go into one of the other drawers that has socks in it, but not the top two drawers. Despite not being sure that Brittany did it, I just didn’t feel comfortable having her back again. I called the agency immediately. They apologized and jumped right on a replacement for Monday. They seemed very pleased with this person who has worked with them a while. They said that everyone has liked her, and the person for whom she had been carring had died and would probably be available on a permanent basis. I shall look forward to meeting her on Monday.

Salivation

I am still in a quandary concerning Kate’s salivation problem. I have new information that gives me another slant on things but no solution. Yesterday at lunch and again at dinner, Kate had the “reflux/salivation” problem. At dinner, as she was trying to calmly wait it out, she said, “There it goes again. I asked her what she was talking about. She told me, “A hiccup.” I was surprised at the answer because I wasn’t hearing any noise that would suggest a hiccup. That led to my asking, “Do you mean that it was like a hiccup, or did you really have a hiccup?” She told me she really had the hiccups.

To me this really sheds a different light on the situation. Even though I have felt she wasn’t showing clear signs of reflux, I have given her omeprazole and Gascon which are intended to address reflux. No wonder they haven’t stopped the problem. I noticed something else last night. She had only taken only one or, possibly, two bites of food before encountering the problem. That alone made me question whether it is reflux.

As was the case on Sunday night, Kate went to bed after taking her evening medications. She seemed rather calm and went right to sleep. She slept well and is fine this morning. That makes me wonder if the hiccups induce some measure of anxiety that makes it hard to stop it.

The real question is what is causing the hiccups. I did an online search about it. Although hiccups are an annoyance, it doesn’t appear that they represent a serious medical issue. I noticed some of the old home remedies for hiccups. I got her to hold her breath as long as she could. I also got her to drink some water. Those didn’t work.

This morning I sent another message to her doctor telling him about the hiccups. Maybe he will have a thought about it.

Now I am wondering if the salivation and the hiccups could be a result of a common cause, or are they unrelated. It seems to me they are different issues altogether. I say that because she seems to have the salivation at all times of the day. The hiccups only seem to appear at meal time.