A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

The Cold on Day 8

I am gaining a better perspective on the lives of other caregivers who deal simultaneously with dementia and other health issues at the same time. To be sure, I am getting only a small taste of what others live with, but it does reinforce what I have said before. Kate and I have been fortunate in many ways since her diagnosis. The fact that both of us have been healthy is one of those. Both of us have had colds before, but it is more challenging at this stage of her Alzheimer’s. In the past it was easier for her to manage her own care with limited help from me. The only thing she can do now is blow her nose and spit out the phlegm that accumulates in her throat.

Despite this, her cold has not been especially serious. Her cough is still infrequent. She coughed just after going to bed and didn’t cough again until 1:45. She coughed on and off for about fifteen minutes and stopped. I haven’t heard any coughing until a few minutes ago, and it is now 9:30. What I do hear is her nasal congestion, but it is not constant. I’ve mentioned the sensitivity of the audio from the video cam monitor. Depending on the volume of the music I am playing in the kitchen, I can hear her breathing. When she coughs, I can hear it over any of the music I might be playing.

Apart from the cough and nasal drippage, the only sign of how she feels is that she seems more tired than usual. As I mentioned in a previous post, she slept until 2:00 on Tuesday. Yesterday, I woke her up at noon because she had a massage at 2:00 and a haircut at 3:15. She got along fine. When we returned home, she rested an hour and a half before I got her up for dinner.

She had more trouble working her jigsaw puzzles last night. Part of her problem is visual. Even when there is only one piece left, she has a difficult time locating where to put it. Each puzzle is on a solid-colored background. When the pieces are scattered, the background color is displayed where the pieces go. Thus, when there is only one piece missing, there is a picture with a rather glaring space colored like the background. To any of us, it would be immediately obvious where the last remaining piece should go. It isn’t obvious to her at all. Even when I put my finger on the piece and then on the spot where it goes, she often doesn’t know where to put it. One additional problem that is easier to understand is that she sometimes puts a piece in place but not precisely in place. Kate can’t tell that, and the app does not indicate that the puzzle is complete. Then she calls me. I locate the piece that is causing the problem and push it into place. Then she goes on to the next puzzle.

When she started working her puzzles a few years ago, she chose those with 42 pieces. Over time, I have selected the number of pieces for her. I dropped the number to 25, then 16. I think it is time to go 9 pieces. That’s the fewest available with this particular app. I hope that it will be easier for her after her cataract surgery on February 12.

A Day of Ups and Downs

It’s impossible for me to describe yesterday in a single word or phrase. A lot of things were going on. I believe and hope the overriding issue was Kate’s cold which had gotten worse during the previous night. The specific symptoms were, at least initially, her cough and her spitting up phlegm. In the middle of the night she had a coughing spell. She had been pretty much cough free during most of the day. I thought maybe lying down might be a problem and wanted to elevate her head with a larger pillow. It gave me my first glimpse of what it is like trying to help someone with Alzheimer’s. She doesn’t grasp instructions and gets more confused as you try to explain what you are doing or want her to do. It was a bit frustrating for both of us. This didn’t last long. It may have been less than thirty minutes. She and I went back to sleep.

A number of times I have mentioned ways in which Kate and I have been fortunate. One of those is that neither of us has had an illness that has made dealing with her Alzheimer’s more difficult. My experience that night gave me a sense of what some people deal with all the time. It also confirmed for me that as Kate continues her decline, I might very well want help during the night in order for me to get the sleep I need to care for her at other times.

I let her sleep yesterday morning. I felt that rest might be the best medicine. She awoke about 7:00, went to the bathroom and went back to bed. From the video cam I had noticed her getting out of bed and went to the bedroom. Her head was more stuffed up than the day before, but she was more clear-headed than usual.

About 11:00, I noticed she was stirring. I went to the bedroom. She seemed wide awake but relaxing in bed. I mentioned going to lunch and asked if she were ready to get up. She said she was. I didn’t push her. I let her take her time. She got her shower and got back in bed. I decided to forgo our usual lunch plans. At dinner the night before she coughed quite loudly a couple of times. I didn’t want to disturb anyone at our usual restaurant that is somewhat quiet and reasonably active on Sunday. I decided to get a quick lunch at Panera.

Before we were ready to leave, two things happened. First, Kate started coughing. Second, as I tried to get her dressed and take her medicine, I rushed her. I also had to correct her on several things. For example, it took a while for her to take her meds. She would take one and leave the others. I had to remind her several times she had more to take. Finally, she broke down. She said, “I just can’t do anything right.” She was also miffed at me for rushing her. Seeing a panic attack coming, I shifted into a more conciliatory style. That may have prevented a more serious attack, but it didn’t immediately stop her emotional reactions.

By this time, I felt it was best to get a to-go order at Panera and bring it back home. The two of us went in the car and brought our lunch back home. It was an interesting change. I think we have only eaten a meal at home two or three times in the past four or five years.

We had a very pleasant time at home between lunch and dinner. We relaxed in the family room while Kate worked on her iPad, and I read some autobiographical materials that a former roommate at TCU had sent me. Kate didn’t have any problem coughing and seemed to be getting along well.

I felt better about taking her out for dinner. We went to a small Mediterranean café near our home. I knew there wouldn’t be a crowd on Sunday night. Kate was very relaxed and talkative. Soon after we ordered, she said she was glad we had come back. She thought we were in Texas. I made no effort to correct her. She commented about the restaurant and liking it. Then she began to talk about “the girls” and also language differences. Pretty quickly I recognized she was having the same experience she had had a few days ago when she had her massage. At that time, I sensed that she was talking about being at a school in a foreign country. This time it started with a belief that we were in Texas. The rest of what she said was very similar in both experiences. One thing was different. The other day I speculated it might have been the cold medicine that was responsible. That was not true yesterday. She hadn’t had any.

Her remarks were not continuous. She didn’t constantly repeat the same things over and over, but she kept bringing them up as though she were continuing a conversation with me. This was something of a challenge. I didn’t want to tell her she was imagining everything. I also didn’t want to make up things to add. I simply acknowledged what she said and agreed. When she said “the girls are smart,” I said something like, “They really are.” This went on until after we were back home.

At home, Kate saw her iPad and said, “What’s this?” I told her and said she could work puzzles on it. She was confused about how to open the cover. I showed her. She said, “I hope I know how to do this.” She was confused about how to begin. I showed her and got the first puzzle up. She didn’t know what to do when the pieces were scattered. I ended up completing one puzzle myself just to show her. She worked them for a while before getting frustrated. I decided it might be time for some music therapy.

The previous night I received a phone call from another TCU friend and housemate. He follows my blog and is aware of our use of music videos on YouTube. He told me about a two choirs in Lincoln, Nebraska, that I might want to check out. One of those choirs is the Wartburg College Choir. After dinner last night, I found one of their videos of a concert tour in Germany in connection with the 500th anniversary of the Reformation. It contains beautiful music along with correspondingly beautiful churches and other notable sites. It was a wonderful way to end our day. It was like having an hour-long period of meditation.

As I helped her into bed, she said, “Richard, it’s been a frustrating day. <pause> I’m so frustrated.” I assured her that she could count on me to help her. We didn’t say anything more. This was one more reminder that Kate still recognizes that she has a problem even if she doesn’t know what it is or where it leads.

The Sitters, Music, and YouTube

What Kate and the sitters do has changed since I first engaged them a year and four months ago. That was a time when Kate and I were accustomed to going to Panera more frequently. We went almost every morning and some afternoons. When I arranged for a sitter, I bought a Panera gift card and told Kate and the sitter that they could go to Panera anytime they wanted. I remember how Kate’s eyes would light up when I said that. She looked at Panera as an outing. That was true even when it was just the two of us. With the sitter, I think it was also a way of breaking up the time until I returned.

That worked beautifully for almost a year. It began to change when Kate started sleeping later, and we weren’t going to Panera as often. I might have guessed that would make an afternoon trip even more appealing, but it didn’t. Like many things, I am not sure why. When I returned home, I often found that Kate was resting or had rested a lot while I was gone. That bothered me because I felt she wasn’t getting enough stimulation.

At the same time, I was looking for other ways to entertain Kate in the evening when we returned home from dinner. Our regular routine was for me to watch the evening news while she worked jigsaw puzzles on her iPad. I wanted her to have something else to entertain her, especially since she was beginning to have difficulty working her puzzles. I bought about ten DVDs of musicals that I thought she might enjoy. We would watch about an hour a night. Watching musicals like Les Misérables and Fiddler on the Roof could easily take us six nights. Kate loved it. She clearly has favorites. We watched Les Misérables seven times in one seven-week stretch last summer.

As I became more concerned about Kate’s time with the sitter, I decided to try the DVDs when the sitter was here. That also worked well. It was entertaining for both Kate and the sitter. I liked the idea of their engaging in something together even if it was a passive activity.

Gradually, I expanded the musical performances we watch at night by going to YouTube. Their selections are endless and growing all the time. The key is finding something that Kate will enjoy. During the fall, that meant a lot of Christmas music. I also discovered that The Tabernacle Choir seems to have one of the largest libraries of music videos. There are plenty of others as well. I often search for a particular singer, for example, Julie Andrews, Barbra Streisand, Sarah Brightman, Andrea Bocelli, The Three Tenors, etc.

My next step was to set up the YouTube videos for the sitter and Kate to watch. That has also worked well. One time during the Christmas season, I had set up one of the Christmas videos by the Tabernacle Choir. It was about an hour in length. I told the sitter she could turn it off at the end of the program. I also mentioned that if she didn’t, it would continue with other videos. When I got home four hours later, they were still watching Tabernacle Choir videos. They hadn’t stopped the entire time I was gone. They were both happy.

Since then I have been preparing something for them to watch at least once a week, sometimes more. Yesterday was one of those days. I selected a Bill Moyers documentary about the hymn “Amazing Grace.” It was about an hour and twenty minutes. As I have done before, I told the sitter that she could turn off the TV after the program was over or let it roll over to other videos. When I got home, they were both still watching the videos. “Amazing Grace” was over long before. They were now watching musical flash mobs. This is something I hadn’t thought about. If I had, I would have probably searched for them. Instead, they had simply come up according to the algorithm used by YouTube.

Mary told me that Kate rested a couple of times during the videos but kept coming back. I suspect that was a result of her liking some more than others. The important thing is that I have found a source of amusement for Kate apart from her iPad. The bonus is that it also helps her pass the time while I am gone. At the moment I am not planning to have a video every time the sitter comes, but once or twice a week might work well.

Telling the Truth (or Not)

Telling the truth is among our most universal moral/ethical values. Parents teach their children to be truthful very early in life. In addition to the family, our social institutions (religion, education, economy, and politics) support the truth in one way or another although we usually think of the family and religion as having the greatest role to play.

Despite this kind of cultural and social support for the truth, we all know that lying is quite common. We also know that it may not always be best to tell the truth. In everyday life we are often untruthful because we want to protect someone. We see that most easily when a child scribbles a picture and gives it to her mother on her birthday. We expect the mother to say, “Thank you. It’s beautiful.” Even when it isn’t beautiful at all.

With this in mind, it would not be a surprise to learn that caregivers face many situations in which they make a decision not to be truthful with their loved ones. We do that in those moments when we “live in their world,” and it’s very similar to my example of the child’s gift to her mother. Several months ago, I had one of those with Kate when we arrived home, and she thought we were revisiting either a house that we had lived in years ago or the one in which she had grown up. It was such a surreal experience I was never clear. I do know that I made a conscious decision to go along with her and not destroy what was such a beautiful emotional experience for her.

Late yesterday after the sitter left, she had a similar, though less intense, experience. I didn’t immediately recognize it because it began with something that is now so normal. She got ready for us to leave for dinner. She was carrying her house slippers, a tube of toothpaste, and her toothbrush. As we walked through the family room, she said, “Don’t you like this room?” I told her I did, and we stopped to look around the room while she commented on things she liked. I still didn’t think much of what was happening. I am accustomed to this. Once we were in the car, she put her right hand in one of the slippers as though it were a glove. Then she started to put the other slipper on the other hand when she ran into a problem. That slipper held the toothpaste and toothbrush. She decided not to wear either of them and put them in a side pocket in the door.

As we drove out of the driveway, she talked about the neighborhood and how much she liked it. Then she surprised me by saying, “I’m glad we don’t live here anymore.” I could easily have said, “But we do still live here.” I didn’t. I said, “But it’s a nice area.” Then she said, “Yes, but it’s such a big city.” I didn’t say anything else, nor did she. As we had gone a little farther, she commented on all the lights. That is something she usually talks about in a positive way. It was beginning to get dark and rush hour. This time she was bothered by all the lights from the cars.

This is restaurant week, and the restaurant was quite busy. It was noisier than we would have liked, but we saw several people we know. There was a group of six or eight who are members of our church choir including the wife of our former choir director. She was the first to arrive and came to our table and chatted for a few minutes. In a little while, a couple we know from the opera nights at Casa Bella arrived and stopped by the table to say hello. Finally, we saw someone I used to see at the Y. I was a little surprised that Kate did not respond with more recognition of these people, but I think she may have been distracted by all the activity and the noise level.

It wasn’t until we had finished our dinner and were about to leave that she said, “Where are we going from here?” I answered automatically, and truthfully, “We’re going home.” She said, “Oh, we’re that close?” I told her we were just about ten minutes away. In a moment, she said, “I’m glad we don’t live here anymore. It’s too busy. I like living in a smaller place.” I didn’t say anything. I did begin to suspect that her bringing the slippers, toothpaste, and toothbrush was rooted in her belief that we were leaving our “old” house and woudn’t be back.

I wondered how she would respond when we got back to the house. She didn’t say anything about the house or the neighborhood or being glad we didn’t live here anymore. In fact, it almost appeared that she didn’t remember the house at all. When we walked out of the family room toward our bedroom, she pointed down the hallway to her right and said, “What’s there?” I told her that was a bathroom, and she decided to use it.

In a few minutes, I saw her start to close the two doors leading to the family room and told her it was all right to leave them open. Later, when I went to get her night gown, I noticed that she had closed the doors to the other bedrooms. I don’t know what prompts this, but it is not unusual.

Yesterday’s experience of playing along with Kate was an easy one. I never felt I should be truthful and point out that we were currently living in the house she thought was a former house. Neither did I feel any necessity to correct her when she thought we now live in another town. Some situations require more thought.

Several of those occurred a few months ago when she had several anxiety attacks and didn’t know where she was or who she is. Twice when she said, she didn’t know what was happening to her, I reminded her that she has Alzheimer’s. The first time she seemed to be a bit relieved. She said she had forgotten she has it. She accepted this very naturally. Of course, she forgot it. The second time it didn’t seem to mean anything to her, and I chose not go any further. I wouldn’t want her to think about the future and what she will experience. My only reason for telling her before was to relieve her anxiety about what was causing her memory loss. Although the truth didn’t cause a problem in those instances, I need to think of a less truthful but satisfying response.

There is one other situation that comes up much more frequently that I am beginning to wonder about. That involves the death of her parents. Up until now when we have talked about them, I have spoken about them in the past tense. Most of the time that is just fine. Sometimes, however, she is sad when she learns they are gone. That hasn’t been a problem so far, but I know that it could be sometime in the future. For that reason, I am becoming more sensitive when I talk about them. I can easily see my reaching a point when I always speak of them in the present tense.

Giving Out My First “Alzheimer’s Card”

About a week ago, I mentioned ordering small cards with a message that I could discreetly give to people in a public situation. The message says, “My wife has Alzheimer’s. Sometimes she may say or do something unusual. Your patience and kindness are appreciated.” This afternoon we took my car to have it serviced. On the way, Kate noticed a TCU alumni magazine on the floorboard of the passenger side. She had left it there on a previous trip and hadn’t remembered seeing it at all.

When we arrived at the dealer’s, she took it inside with her. As I was talking with the service rep, she kept interrupting to show me pictures and articles. She also commented when she would see “TCU” in a headline. She didn’t recognize that it was a TCU magazine. Several times she asked, “Who is that?” All of them were faculty, students, or alumni. In one case, she asked the rep if she knew the person. When she didn’t, Kate said, “I think she’s a celebrity of some kind.”

While we were in the office, the sales rep from whom I had purchased my last two cars walked in to say hello. That led to a brief conversation about new cars and the new safety features, specifically the indicator that lets you know when a car is in your blind spot. Kate didn’t understand and asked, “What in the world are you talking about?” We tried to explain, but she couldn’t understand “blindspot.” When the service rep took us to our loaner car, Kate seemed confused about which side of the car she should get in. I felt this was a perfect time for such a card. I took one out of my wallet and handed it to the service rep and took Kate to the passenger’s door. When I returned to the driver’s door, the service rep gave me a smile of acknowledgement. I wonder how many of these cards I will distribute.

A Lesson for Alzheimer’s Awareness Month

One of my fascinations is the way people generalize and differentiate the qualities or characteristics of other people. One of the most relevant examples would be the way we look at people of different racial or ethnic groups. We are generalizing when we say that “Italians are such and such.” We are differentiating when we recognize that some Italians (or whatever group) are like the stereotype but many are not. Pollsters often find that large percentages of people hold negative stereotypes of politicians and lawyers but when asked about their own representatives or lawyers, they have favorable views of them. That is differentiating.

This normal process of both generalizing and differentiating applies in many other situations, and it is something we do without even thinking about it. My personal view is that we tend to generalize more quickly when we know little about a subject. The more we know, the more we recognize the variation that exists apart from the generalization.

So what has this got to do with Living with Alzheimer’s? Well, January is Alzheimer’s Awareness Month. Established by Ronald Reagan in 1983, it is a month in which organizations and professionals in the field of dementia attempt to increase awareness of the disease and improve the public’s understanding of it. That has not been an explicit purpose of this blog, but I do hope that readers gain a better grasp of what the disease is like through our experiences.

Most of all, I hope our experience will counter a generalization about dementia that is quite misleading. When most people hear that someone has dementia, they immediately think of the latter stages of the disease. That is a time when people with dementia (PWD) have very little awareness and are unable to enjoy life the way they could at an earlier point in their lives. The truth is that dementia involves a long span of time. Some estimates suggest it may be as long as twenty or more years. During most of that time, it is possible for PWD to live a full life. We have a growing number of PWD like Kate Swaffer (@KateSwaffer) and Wendy Mitchell (@WendyPMitchell) who are actively speaking out and writing about this.

Professionals who study Alzheimer’s are also making an effort to communicate this message. It’s important one for those receiving a diagnosis and their family members. It is a helpful message at a time when our stereotype of the disease can easily lead to a sense of hopelessness. That is good news. In addition, there is a wealth of information that offers guidelines and advice for making the most of the quality time available after diagnosis. There is reason to hope.

I didn’t recognize that when Kate was diagnosed. I couldn’t imagine how much joy we would have experienced since then. There are some things that we have done to make it easier for us to live with Alzheimer’s, but I also recognize that there have been important things beyond our control that have helped us significantly. They include the fact that I was able to retire so that we could spend more time together, that neither of us has had any other health issues to contend with, that Kate has not experienced some of the more challenging symptoms of the disease, and that we have not had any special financial burdens.

We have been especially fortunate. Thus, I don’t want others to generalize from our experience and believe theirs would be the same. The most important lesson I have learned came from The Dementia Handbook by Judy Cornish. I believe it applies to many other families. She suggests that caregivers and family of PWD learn to accept the “rational” abilities that are lost through dementia and emphasize the “intuitive” abilities that remain. The latter can make a big difference in the quality of life for those living with Alzheimer’s. It has worked for us. My wish is that it might work as well for others.

Update on Clothes

I recently mentioned the number of recurring themes in my posts. From very early, one of the most persistent ones has been Kate’s clothes. When I say “clothes”, I really mean a variety of issues that involve clothes. At first, it was simply finding clothes for Kate to wear. She didn’t hang them up after wearing them. They were scattered on the floors and furniture of three bedrooms. The problem was exacerbated by her gaining weight and not fitting into her clothes. That led to issues of buying new ones. We went to the stores where she had shopped for years. They tended to stock nicer lines of apparel than suited her needs. They were also expensive. She still wanted to be actively involved in the purchase decisions. She selected things that she wouldn’t wear every day, and she attended fewer special occasions. She was becoming less and less attentive to soiling her clothes. Over time, she started wearing her good clothes to work in the yard. At first, I would get her to put on her yard clothes, but later I gave in.

One of the big steps forward was Kate’s cleaning up the mess in the three bedrooms. We never talked about it. One day she just started picking things up. As she did, I starting discovering the ones that fit and giving the ones that didn’t to our housekeeper. Then I arranged the clothes in the closet she used most often. I put all the tops on the left side arranged by color. I put all the pants on the right side, also arranged by color. Until recently, that had kept me busy because Kate never hung them back in the places I intended.

Kate continued to gain weight. That meant I had to buy larger sizes than in the past. I finally resorted to catalog shopping. That worked very well. I have bought pants, tops, sweaters, jackets, underwear, shoes, and socks. I had to experiment a little with the sizes. That meant a few returns on some of my first orders and off and on since then. I have found several brands to choose from. I have also settled into pants that stretch at the waist. I also buy at least two and sometimes three identical pants in the same color. Online shopping has certainly made my life much easier.

She was still picking out the clothes she wore each day six to eight months. That meant that she sometimes picked out something that was not quite right for either the weather or the occasion. Neither of us liked my having to be so involved with her daily attire.

Now everything involved with clothes is easier except for keeping them clean. The problem isn’t getting her clothes soiled from working in the yard. She no longer works outside. It arises from toothpaste she gets on her tops and food and sauces she gets on tops and pants. That has me washing a lot more now than in the past. OxiClean and I have become good friends. The washing itself isn’t a big problem. In fact, I find that washing and folding clothes are almost therapeutic. That has surprised me because I resisted taking over the laundry responsibilities for a good while. Initially, I tried to prevent as much soiling as I could. Of course, that was a battle I couldn’t win. It’s still hard for me to deal with her clothes getting dirty so quickly. It is not unusual for me to get her a clean top to wear and discover it has toothpaste across the front of it before we leave the house. That’s the OCD in me coming out and is my problem, not hers.

Issues surrounding her clothes present very little problem now. She has things that fit. I know where they are. When she needs something new, I know how to get it without leaving the house. Some of this has come at a cost. The major reason some things are better is that Kate is now more dependent on me for help. I determine what she wears day and night, and I am increasingly taking more responsibility for getting her dressed. I don’t mind any of those things; however, I wish for her that she were able to do more for herself. That’s a sad thing.

Not Everything Goes As Planned

As someone who likes to plan ahead, I may inadvertently convey that everything goes more smoothly for us than it does. Let me assure you that it doesn’t. I plan, but my plans don’t always work out. I am reminded of a cartoon that I saw on our church bulletin board years ago. It said, “God’s response to a five-year plan: Ha. Ha. Ha.” When my plans go awry, it is sometimes not my fault. Other times, it is. As my caregiving responsibilities increase, I notice that it is more the latter. Here are a few examples of the kind of things that I am slipping up on.

As you know, Kate and I go to Casa Bella the first three Thursdays each month. Because we are regulars, we don’t make reservations. We only call if we are not going to be there. The first Thursday in November I slipped up. We were just finishing dinner at another restaurant when I received a call asking if we were still coming. We rushed over and enjoyed the program.

This past Tuesday I was to “attend” a conference call meeting for a committee on which I serve. Although it was on my calendar, I forgot it.

Early last week I received a package with a cardigan sweater that I ordered online. I tried it on to make sure it fit. It did, but I had a little difficulty getting the zipper to work. It took me a couple of tries. It wasn’t until yesterday that I decided to wear it. This time I was unable to zip it at all. Now I need to send it back. In the meantime, I had thrown out the package and accompanying label and instructions should I need to return it. In this case, I didn’t create the problem with zipper, but I normally hold on to packaging and other materials just in case. For some reason, I didn’t follow my normal procedure. It’s not a big deal to correct the problem, but it creates an extra task that I could have easily avoided.

A week ago the father of someone with whom I have worked professionally died. His service was yesterday afternoon. I hadn’t worried about our making it because I had written it on my calendar for 2:30. That should have given me plenty of time to get Kate ready and to have lunch before leaving. Kate has been tired this week. It was just after noon before she got up. This required me to rush her a little more than either of us wanted. She got ready quickly, and we left for lunch right after 1:00.

Knowing that the service was 25 minutes away and that we didn’t have a lot of time to eat, I decided to stop by Panera. When we arrived, it was unusually busy. We couldn’t park as close as we usually do, and it was cold and rainy. Once inside I discovered a long line waiting to order. There were very few seats, so we sat at a community table. Kate is a slow eater. In fact, she does everything more slowly now. It was 1:50 when we left for the church. We arrived with six or seven minutes to spare only to discover that the service was over. It was a short service and started at 2:00, not 2:30 as I had entered on my calendar. That left us with a long 25-minute drive home.

These are all things that anyone could do, but they are not typical for me. I take this as another sign that being a caregiver has an impact in ways we may not perceive or expect. It is easy to become distracted. As we left Panera yesterday, I extended my hand to help Kate step off the curb. As I did, I was carrying an unfinished cup of coffee in my other hand and spilled it on my coat and shirt sleeve. So much for having everything perfectly under control.

A Case of Caregiver Error

I feel like I do a good job caring for Kate, but like everyone, I make mistakes along the way. That happened yesterday. In an earlier post I mentioned that I was going to my doctor’s office for my labs prior to an appointment next week. I knew I needed to allow sufficient time to get Kate ready without rushing her. Since she had gone to bed at 7:30 the night before, I hoped it would be easy to get her up. I was wrong about that. The big problem, however, is that I was writing a post yesterday morning and let time get away from me. I looked up and saw that it was almost 9:30, and we needed to leave shortly after 10:00 in order to be on time. I went to the bedroom. Kate was sleeping soundly. I tried to be very careful in waking her. I didn’t want her to feel rushed. I sat down on the bed and put my and on her shoulder. When she looked up at me, I told her I was sorry to wake her and explained why I was doing it anyway. She didn’t say much and made no effort to get up. When it was just before 10:00, I told her I really needed her to get up, so she did.

The problem then was that she had a mild panic attack. It has been a long time since this has happened. This reminded me of why I work so hard to avoid rushing. I think the problem is that she wants to please me. When she has to rush, she can’t think clearly at all and panics. In this case, she appealed to me for help. She wanted my help getting her out of bed. She held my hand all the way to the bathroom. She wanted to shower but didn’t know what to do. I helped her and then walked her back to the bedroom to dress.

We were ready to go by 10:30. It had only been an hour since I first tried to wake her. That was a record, but it came at her expense. I felt bad about it. She was calm when we left the house. I apologized to her on the way to the doctor. By then, she had forgotten everything. She tried to make me feel better. She said I hadn’t rushed her at all. She was just fine. I appreciated that. I still felt bad because I could have avoided the whole thing.

The rest of the day went well. The Bluefish Grill is located near the doctor’s office, so we went there for lunch. When we got home, we had about thirty minutes before Kate’s appointment for a massage. After that we spent a couple of hours at home. She was tired and asked if she could take a nap and wanted to know where she should go. I told her I would be in the family room and suggested she join me and rest on the sofa. She rested until it was time for us to leave for opera night at Casa Bella. It was a good night for music and conversation. It was decorated for Christmas, and everyone seemed to be in the Christmas spirit. The crowd was a good bit louder than usual but was respectfully quiet during the program. We both had a good time and went to bed right after returning home. It wasn’t another night of “pillow talk.”