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Catching Colds

For the past several days, my nose has bothered me in the morning. Yesterday afternoon, I noticed that Kate was coughing periodically. After dinner, the coughing increased. By this morning, it was clear that we both have colds. So far, they both seem mild. I have been taking Benadryl for the past few nights. I wondered about giving it to Kate but was concerned about possible interactions with medicine she is currently taking. A quick Google search confirmed my suspicions. She takes trazadone. I have been aware that it is commonly prescribed for people with dementia. It is an antidepressant that is sometimes given as a sleep aid. When combined with Benadryl, it can augment the usual effects of these drugs. In Kate’s case, she doesn’t appear to have a problem with a runny nose. The cough, however, can be annoying to her and to those around her.

I find myself a bit irritated when I get a cold, but I try to remind myself how infrequently that has occurred over the past few years. In fact, one of the ways in which Kate and I have been fortunate is not having other illnesses to contend with. I can’t remember the last one I had, but I am sure that it is more recent than Kate’s. Since they seem mild, I am hoping we will be rid of the bug in the next few days.

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More Little Things

I continue to notice Kate’s checking with me to see if it is all right for her to do things that shouldn’t require my permission. Yesterday, we were leaving for dinner, and she asked if it were all right that she had left the drapery in our bedroom open slightly. She also asked about turning out the light in the laundry room and locking the door to the garage. Last night she put on her night gown, something she doesn’t always do without my prompting. This time she had also put on a top that she had worn all day yesterday. When she got close to the bed, she pointed to the bed and gave me the look that means she is asking a question. I told her it would be fine to get in bed, and she did.

My interpretation of these things is that she feels less and less sure that what she is doing is right. I also recognize my own OCD tendencies, and she definitely does. It appears that she is working harder to do everything the right way, but is also encountering problems at every turn. A moment ago, she asked me if I would refill her cup with iced tea. (We are at Panera.) When I brought it back, she was about to put the lid on upside down. Before she realized it, I told her. That irritated her because she had just realized that herself. Earlier this morning, I noticed that she had put her top on inside out. I mentioned that. She was glad that I did. When she took it off, it was all twisted. I started to help her. She didn’t want my help. In a minute, she called for me. She hadn’t been able to straighten it out. These kinds of things happen all the time. I know it must be discouraging to her. So being aware that she often makes mistakes and knowing that I am a bit particular, the safe way to adapt is probably to seek permission in advance. It seems to me, however, that the things for which she seeks permission are unnecessary. I wish I could help her overcome this feeling, but it is probably inevitable.

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Sign Language Can Be Confusing

Kate continues to use hand signals to ask some of her questions. Most of the time I understand what she is asking, but not always. Take this morning, for example. We were waiting at a stop light on the way to Panera when she looked at me and pointed in the direction of her cup sitting in the holder of the console. She also had the lid of the cup in her hand. I thought she was asking whether or not to take her cup into Panera, but that is something she is more likely to ask when we arrive at another restaurant. She gave me a disconcerted (irritated) look, and I told her I didn’t know what she wanted. That prompted another look. Then I realized that what she wanted was a napkin. I try to keep them in the car to wipe the saliva from her mouth. (She still doesn’t swallow her saliva.) When I realized that was what she wanted, I opened the console and gave her a napkin. Then I said, “I thought you wanted something to do with your cup.” She said, “Nice try, but I’m not going to let you get away with that.” I said, “Well, I usually do a pretty good job.” She smiled and said, “Yes, you do.”

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Losing Another Friend With Dementia

Over the course of the past few years, I have connected with several people whose spouses have had dementia. One of those was my former dentist whose wife was in the last stages of the illness when we first got together. He had in-home care for her round the clock. About a year after our first contact, he died of cancer. She died earlier this year following a year in a memory unit of a continuing care community.

Another man was a neighbor whose wife was between the middle and later stages. He cared for her at home until she experienced serious problems with anger. Then he had to put her in a memory care unit of a local facility. She died over a year ago.

One other person was someone with whom I had served as a volunteer in three different not-for-profit organizations. After his retirement, he and his wife moved to the coast of South Carolina. His wife had also been an acquaintance of Kate’s. Her dementia had already been diagnosed at the time of their move. I last saw them together in August 2016. She seemed to be getting along pretty well although I knew from her husband that she had had a variety of problems, both health and anger. A month after I saw them, she started a downward spiral that ended in early January. He was able to keep her at home for all but a period of a month or six weeks that occurred about a year before she died. He had help from his daughter and an agency that provided in-home care during the day.

Yesterday morning, I received a text from Nancy Hardwick telling me that Charlie, a former roommate at TCU, had passed away early that morning. Charlie had enjoyed attending an adult day care center for over a year. He died peacefully at home. I don’t believe Nancy had any help until hospice was brought in about a week ago.

That leaves me with only two other acquaintances in my shoes. One is a former member of my Rotary club and a neighbor, We periodically exchange email messages but haven’t gotten together because he can’t get away from the house. His wife won’t accept a caregiver, and he doesn’t want to leave her alone. I need to give him a call. He might like to have a little contact. I sense that he is substantially more isolated than I am.

The other is a member of our church. Kate and I see him and his wife at one of the restaurants we frequent regularly. I have talked with him two or three times on the phone. For a long time, he took his wife to work with him. He owns a large company and is retired but goes into the office daily. He has brought in a sitter for his wife within the last six months or so. I have the impression that he doesn’t feel the need or desire to establish any kind of regular communication. His wife is a little further along that Kate. The interesting thing to me is that our situations are very similar. His experience with her is very much like that of Kate’s and mine.

The deaths of these four people sensitized me to the fact that we are one day going to face this same thing. Even though Kate lives with little or no memory, I still feel her passing is years away. I read some caregiver’s forum messages that welcome death. At this point, we still enjoy life. I wouldn’t want it to end now. There is simply too much to live for.

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A Few Little Things; Do They Mean A Lot?

As a caregiver, I find myself trying to be attentive to changes in Kate’s behavior. It is often challenging to determine if the things I notice are a function of her AD or just part of the normal variation like all of us experience. Here are a few things I have noticed recently.

She is working outside for shorter periods of time than in the past. This could be related to the cooler weather although it is not as cool as other times when she has worked through very cold and very hot temperatures. It also could be related to the fact that she has pulled so many leaves off the shrubs that there isn’t much to pull. I have even heard her comment that she doesn’t have much but she wants to do a little bit.

She is also taking fewer showers. Part of this also results from the cooler weather. When she comes inside, she isn’t sweaty and in need of a shower in the way she is in the summer. On the other hand, she has been taking a shower in the morning and often another before we go out to eat. Now she is limiting that to just the morning, and sometimes she skips that. On a few occasions, she has come in from outside and said that she is going to take a shower and doesn’t.

She seems to be narrowing the choice of clothing she wears and frequently wears the same thing two days in a row and sometimes three days. I think this has developed because she has started undressing in our bedroom rather than in her room where she keeps all of her clothes. When she takes her clothes off, she throws them on the chair beside her bed or on the floor beside the bed. When she gets up in the morning, they are the first things she sees. She may just be taking the easy way out.

Along with these changes is something that I have mentioned a number of times over the past few weeks. She is significantly more cooperative. A good example of this occurred this morning when we returned from breakfast with a small group of people who work out at the Y.

She asked, “What can I do or not do now?” This occurred shortly after we decided to go to Panera. I said, “I thought we were going to Panera.” Then she said, “I could take just a little time to work outside.” I told her that would be fine. As she usually does, she expressed surprise that I was so agreeable to doing this. Then she said, “I’m going to use the clippers.” I reminded her that they were missing.

I went inside to take care of a few things while she worked outside. After 30-40 minutes I went outside to tell her that I was ready to go to Panera. That is when I saw that she was lying down in the flower bed pulling weeds. She was wearing a new coat that I had bought her about two weeks ago. I said, “Oh, you’re wearing your new coat.” She said, “It’s all right. I haven’t hurt it.” I started to respond to her but decided that wouldn’t help. In the past, this experience might have led to more irritation on her part. This time she simply got up and walked toward me. She asked, “Did I do something wrong?” I assured her that she hadn’t. We have a lot of moments like this. In the past she would have expressed stronger resentment of what she considers my pickiness. Maybe we are both learning how to handle things like this.

Are any or all of these things a sign of a more fundamental change? Does it relate to her AD? I still can’t answer these questions.

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A Very Nice Sunday

From start to finish, Kate and I had a nice day today. I was up just before 6:00, had breakfast, took a 2.5-mile walk, and returned home before she was up. I checked email and worked on preparing this journal to post online by the end of January. Kate slept a little later; so we didn’t get to Panera until almost 10:00. That had been a typical time for us until the past couple of weeks before Thanksgiving. I think she is still recovering from the trip to Memphis.

One of the things that may have accounted for such a nice day was our schedule. It was broken into small chunks of activity. We spent about an hour and a half at Panera and then went straight to lunch. We arrived back at the house just before 1:00. As she usually does, Kate asked if she could work outside for a while. I told her I would be glad for her to do so. She expressed surprise once again. Then she asked if she could use her clippers. That’s when I reminded her that we couldn’t find them yesterday afternoon. I bought 3 new clippers two weeks ago. They have all “disappeared” now. I came inside to catch portions of two different football games. She worked almost two hours before coming in.

When she came inside, she said she was going to take a shower and then pointed to the bathroom off the guest room, the one she usually uses. A few minutes later she appeared wearing a different top and was all ready to go someplace.I asked if she would like to go to Barnes & Noble. She said, “Anyplace.” Off we went. About 4:30, I suggested we go home. That would give us about an hour before going to dinner. She accepted that.

She worked outside for almost an hour before coming in. By then it was time for dinner. We went out and returned home by 6:45. I suggested that I make a fire and that we both relax for a while. We did. Brian called about thirty minutes later. We had a nice conversation with him. When we hung up it was about time for us to call it an evening. I took my shower. She got ready for bed and worked on her iPad for another hour. Then retired for the evening.

I am now catching a little bit of the Packers/Steelers game. It has been a good day. We didn’t do anything elaborate, but we enjoyed the day and being together.

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Confusion This Evening

Kate worked outside from the time we returned from lunch (about 2:00) until I called her in for dinner about 5:15. As she has done over the past few months, she came in right away. You may recall that getting her to come in had been a problem for a good while. It wasn’t that she objected. It’s just that she would forget to come in. As she came inside, I asked if she wanted to shower before going to dinner. She said she did. Then she asked by hand signals which bathroom to use. In a few minutes, she came into the family room where I was watching a football game. She said, “Shoes” and pointed to her stocking feet. I went to the garage where she had left them and brought them to her. It was obvious that she had forgotten about showering. Apart from a few soiled spots on the top she was wearing, she looked fine, and I didn’t suggest that she change.

While we were eating, I received a text from Jesse who was in Indianapolis with her family for the weekend. They are big Tinan fans and are attending tomorrow’s game with the Colts. She had attached pictures of her boys at Topgolf. I showed them to Kate, and she asked their names. When I told her, she gave her usual response, “I know that; it just wouldn’t come to me.” Then she asked, “Who is my daughter?” I told her, and she gave a similar reply. I said, “That’s all right. Sometimes names just don’t come, especially when you are tired. You lost some sleep over the past few days.” Then she said, “And when you are hungry.”

During the meal, I told her that I was sure that Kevin’s family was glad to have Brian home for the holidays. There a pause. Then she said, “What’s his name again?” I told her. Then she asked, “Who are his parents?” She has asked this question a lot over the past month or longer.

When we got home, I went to our bathroom to brush my teeth. She was coming out. I told her I would get her medicine. She said, “I want to brush my teeth, but there’s not any of the stuff in there.” I told her I thought there was. I went to the drawer where the toothpaste and her toothbrushes are kept. They were there as usual. She just didn’t remember where to look. She has toothbrushes and toothpaste in each bathroom. She must have forgotten where it is kept.

A few minutes later, she walked into the bedroom with her robe. This has become rather typical. She gets a robe instead of her gown. When I asked if she wanted me to get her a gown, she said she did. This is also her normal reply to that question. I still haven’t figured out why she does this. Her gowns and her robes are all together in her closet. It just seems like it is easier to find a robe.

Throughout all of these things she has been in a good mood. She is unusually cooperative these days and happy as well.

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Our Visit with Ellen

On our way home from Memphis, Kate and I stopped by for a visit with Ellen in Nashville. We continue to try to visit about once a month. This was the first time that she has been in bed when we arrived. She was surprised, but pleased, to see us. We always check with her daughter before each visit to make sure it is convenient. I am sure that her daughter told her. I find that I am always interpreting Kate’s behavior in light of her AD. I am probably doing the same with Ellen. Knowing that she is in a memory care unit, it seems like her forgetting is a pretty good bet. The only reason I make note of this event is that she has always seemed so sharp in the past.

When she got up, we found her quite talkative, a trait that has always been characteristic of her. The only complication now is her speech. I don’t think we could detect any change in that since last time. We could still only understand about 25% of what she says. Despite the speech problem which does make conversation a challenge, we stayed longer than on any previous visit, almost two and a half hours.

This time we stayed with her while she ate her dinner in the dining room. We didn’t intend to stay through her dinner, but she seemed like she didn’t want us to leave. At one point, when we said we needed to leave, she was ready to leave her dinner. We decided to stay a little longer for her to finish.

I have always been curious to see if Kate’s visit to the memory unit would have any impact on her. So far as I can tell, she hasn’t seemed to notice. I have been concerned that since most of the residents are rather non-communicative, it might make Kate think about her being in this same condition sometime in the future. I just don’t see any reaction. In fact, as we were leaving yesterday, she spoke to a resident sitting at the table next to us. She told the resident her name was Kate. As it turned out, the resident’s name is also Kate and she just beamed at the coincidence.

After leaving Ellen, we dropped by a local pizza place I had heard about. Then we headed back home. The trip home had been a smooth one. Kate was tired and very quickly got ready for bed. I have noticed that she has been tired after our previous trips, so it is not surprising to discover that she is still in bed this morning. That is quite a contrast to the past week or so when she has been getting up early enough for us to be at Panera by 8:30 or shortly thereafter.

Kate got along well on the trip, but being in different places is confusing for her. Several times while we were in Memphis and in Nashville she asked me, “Where are we?”

On the other hand, I am very happy that she still is able to handle herself well in social situations. She is quiet after a while. It is hard for her to follow conversations and to interject her own comments. Sometimes when she jumps in, she says something that is not related to what we are talking about. But she displays the poise she has always had when meeting people. I hope she retains that ability for a long time.

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A Nice Thanksgiving

We had a very pleasant Thanksgiving with Jesse and her family. Once again, we ate well. I suspect that is true for most of you reading this message. It was a relaxing day. The four adults were awake and downstairs before 8:30. The boys didn’t come down until a good bit later. Kate and I were mostly observers in the day’s activities. Jesse and Greg worked off and on the entire day. Jesse fixed everyone’s favorites. That meant mac ‘n cheese for Randy, bow tie pasta for Ron, and asparagus casserole for Kate and Jesse. The only sad part for me is that Kate no longer remembers that the casserole was a holiday dish that her mother made when she was growing up. She simply ate it without comment, and in the midst of all the activity, I forgot to tell her how much she had always enjoyed it. She loves reminiscing about her mother and would have liked thinking about other holiday favorites that she made for her family.

Like many families, we had the football games on all afternoon and into the evening. We didn’t sit down and watch any of them, but we kept up on the scores and periodically sat in front of the TV during critical portions of the games. After dinner last night, we watched Christmas with the Kranks. I hadn’t seen it before. It was one that Jesse’s family had seen before and loved. It was fun to watch as a family. Jesse and I were the primary viewers. Kate worked jigsaw puzzles on her iPad the entire time. She got in a lot of that yesterday. Greg had a football game on his the bedroom. Ron went back and forth from the movie to the game, and Randy was playing games on his phone. Despite the fact that we were not all watching the movie intensely, I felt it was a nice family time that allowed each person to pursue his personal interests while still being together.

As I have noted on other trips, large blocks of time can be a problem for Kate. She doesn’t like to stay in one place for an extended period of time. That is an issue whether at home or on the road; however, it is easier to change locations at home. For example, we can run to Panera or Barnes & Noble. She can work in the yard. We are always moving from one place to another. This desire to change locations is compounded when we travel because she is also confused about where we are and when we are going home. Early in the day yesterday, she asked me when we are going home. I told her we were going home “tomorrow.”

During the middle of the day we played Uno with Jesse and the boys. We had a good time and had a few laughs as well. I didn’t grow up playing lots of games at home, but I have come to recognize how good they are at facilitating group engagement. Everybody has fun most of the time except when someone loses too much. Playing with Kate adds a special dimension to games. She can’t remember the rules, and when I would try to help her, she would resent being helped. She had a real sense that we didn’t believe she could do anything right. At one point, we all knew that she had a “wild card” in her hand with a good opportunity to use it. We kept telling her what a wild card is and when to use it, but she never recognized that she had one in her hand. It was only one of three cards. She simply didn’t perceive it. Despite this issue, the game was a success.

Sometime during the night, Kate screamed, “Help!” I asked what was wrong. She said something about “her.” I asked, “Who is she?” She said, “My helper.” I had been thinking things were going so well with the sitter. Suddenly, I wondered if she had been afraid of the sitter. I asked if she had done something to make her afraid. She said, “No.” The she told me the sitter was with her. There was apparently something else that had scared both of them. I asked what had happened. She said, “I don’t know.” She mumbled a bit. Then for the next few minutes, she periodically said something about her (the sitter) as though she were concerned about her safety. I told her everything was all right, that it was just a dream. She said, “I hope so. I would feel better.”

Dreams like this are not typical for Kate, but she does occasionally have them. Fortunately, most of them involve her days in the classroom. She is always giving instructions to her students in a very kind way.

It is now 9:30 a.m. Kate has not yet come downstairs, and I want to leave in the next 30-45 minutes. I think I will go upstairs to check on her. Jesse has gone to work. The boys are still sleeping. It’s been another good holiday with family.

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Happy Thanksgiving

Kate and I are in Memphis where we are celebrating the holiday with Jesse and her family. It is a cold morning (26 degrees) but warming up to the mid-40s. The sun is shining brightly. I am in the kitchen where Jesse and Greg are making preparations for our Thanksgiving dinner around 3:00 this afternoon. They are cooking a turkey on the Big Green Egg. From past experience I know how good that is. Jesse is quite a cook. I probably haven’t mentioned that she is a vegetarian and has been for over 25 years. That makes it a little surprising that she cooks meat, but the rest of her family have never adopted her veggie habits.

Our friend Nancy Hardwick sent a text this week telling us that Charlie is now on hospice. He was diagnosed with dementia before Kate. When we visited them in Dallas last month, I never would have predicted this. He was very quiet at that time, but I observed no signs of his rapid decline. She said he started going down shortly after we left. He lost his mobility and has stopped eating.

Her message reminds me that there are many of you whose Thanksgiving will not be as joyful as our own. We are very grateful for all our own blessings and are mindful of those who are dealing with the more severe aspects of this disease. I also know that our time is still coming. I just don’t know when. I know it will be sooner than I want.