Insecure, Confused, but Happy and Appreciative

It would be quite an understatement to say that Kate is changing more now than at any other time since her diagnosis. Day before yesterday was a good example. Just as I have been adapting to her getting up late, she has surprised me several times over the past week. That morning she was up at 7:30. That’s at least three hours earlier than when I usually begin to wake her. It was also a day when she seemed comfortable with her surroundings. She acted like she knew I was her husband but didn’t. She was very dependent. She wanted my directions on almost every step from getting out of bed to where to go when I got her dressed. She was eager to have a shower, something I was happy about. She often resists.

We made it to Panera before 9:00 where she worked happily on her iPad an hour. Then I noticed that she was not working her puzzles, just sitting and looking a little discouraged. It was obvious she was frustrated. When I looked at what she had done, she had completed all but two pieces and couldn’t figure out where they went. I showed her, but she couldn’t understand. I put them in place for her. I felt sure that she was tired from having gotten up so early. It was early for lunch, but I decided it would be better than going home where she might nap and then have a hard time getting up.

She was quiet on the way to the restaurant. As I was helping her out of the car, she said, “I want to thank you. I feel better.” I told her I didn’t think I had done anything special but that I want to do anything I can to help her. She looked at me very seriously and said, “You do. You have no idea how much.” I am still not entirely sure what she was thinking about. It might have been the way I responded to her when she was frustrated over her puzzle. It could also have been that she imagined something as we were driving to the restaurant. As we walked to the entrance, she stopped as she always does to look and comment on the flowers just outside the door. When our server greeted her and asked her how she was doing, Kate said, “I’m doing much better now.” That’s exactly how it seemed. She was fine the rest of the day.

Eating early allowed us to get back with plenty of time before the sitter. I felt sure she would immediately head to the sofa for a nap. Instead she started working a puzzle on her iPad and continued until just before the sitter arrived. Then she decided to rest on the sofa. That’s where she was when Mary came. She greeted Mary with enthusiasm. When I told her I was leaving for my platelet donation, she smiled and said goodbye. She didn’t look at all unhappy to see me go.

When I returned, she was seated on the sofa looking at a photo book. She said, “We need you.” I took note of the fact that she said “we” and not “I.” Then Mary told me that she had not napped and explained that Kate had wanted to go outside. She stooped down to look at something in the yard or near a shrub, lost her balance, and couldn’t get up. Mary helped her but said it was difficult. I know what she means. I find that it is getting a bit challenging to get her into a sitting position when she is lying on the bed.

From what Mary told me, Kate had been a little upset and confused, but she was calm when I got home. The only problem then was that she was hot from being outside. I got out a small floor fan and used it to cool her off. Fifteen minutes later, she was fine again and ready for dinner.

At dinner we encountered something that is becoming a regular part of our dining experience now. She has difficulty knowing where she should sit. I always walk to her chair and pull it out from the table. I use my hand to direct her to the seat and say something like, “Sit right here.” Almost without exception, she interprets that as my chair and goes to the chair across the table from me. Sometimes I accept the chair she has chosen. When I have a specific reason for choosing a different chair, I may simply take her hand and guide her to the chair I selected. This, and the fact that she is very careful as she takes her seat, means that it takes longer for us to be seated than most hostesses are prepared for. Most of them seemed to be trained to remain at the table until you are seated. Of course, since we are regulars at all the places we visit, the hostesses are well aware of Kate’s diagnosis and are very understanding.

During dinner, Kate talked a good bit about what I do for her and how much she appreciated that. I told her our son was coming for a visit the next day. During our conversation, we spoke very naturally about our marriage. She commented on how happy we had been and then said, “What’s your name?” I told her, and she asked her own name. I am still amazed at how casually she does this. It’s the kind of experience that is both happy and sad. I am happy that she doesn’t seem frustrated, but it is also sad that she can’t remember. It makes me think about all the things she must not know if she is forgetting her own name and mine. What is it like to look around and not know who or what anything is? The good thing is that she still responds intuitively to people and things around her and still likes so many things. She continues to get pleasure out of life. That is something that may be hard for people without dementia to understand.

Later that night when we were in bed, she mentioned how good she feels when she is in Texas. I could tell by the way she said it that she thought she was in Texas at that moment. I didn’t say anything to dissuade her. She was happy. That’s a good way to end the day.

The Interaction of Kate’s and My Moods

Yesterday afternoon I read the following tweet posted by Chuck Fiello Jr. (@OrangeChuck).

When mom isn’t feeling well, she can’t tell me she’s sick anymore so I have to watch for clues. Is she eating less but more tired? Is walking more difficult? When mom eats, she won’t say she’s hungry or full…she just stops eating/slows down or starts to fall asleep.

I replied that I felt the same way about Kate. If you regularly read this blog, you will recall that I have said many times that “When Kate is happy, I am happy.” That doesn’t mean influence of mood moves in only one direction. I make a difference in her mood as well. Recently, I have cited occasions in which I have been able to make her happy with music, family photo books, or simply talking with her gently about her family, our marriage, and/or our children and grandchildren.

It is very clear that there is an interaction of our moods. Once again, the writings of Judy Cornish (@theDAWNmethod) have drawn my attention to something I hadn’t fully appreciated before – the power of caregivers to influence the moods of those for whom we care. More specifically, she has talked about the sensitivity of people with dementia to pick up on the moods of their caregivers. Thus, when a caregiver is feeling tense, frustrated or depressed, that mood can cause their loved ones to feel similarly.

Until day before yesterday, I had never written about ways in which my negative mood and actions led to that same reaction from Kate. Before that, I always reported on ways in which I was able to turn her around if she was confused, frustrated or depressed. That is mostly because I think of myself as being rather even-tempered and upbeat. That wasn’t the case two days ago. I was tense and frustrated as I tried to get her up, dressed, and to lunch before I left her with a sitter so that I could get to the Red Cross on time for a platelet donation.

There was an obvious interaction of our moods. I don’t know exactly why, but she was unusually slow in getting ready even with my help. Looking back, I think she may have been more confused than usual though she didn’t express it verbally. That’s how I normally would recognize it. (Her difficulty understanding how to wash her hands should have been a clue.) I was frustrated and became tense because I was on a time schedule and wanted to follow it, something she can’t do. I tried not to show it, but she can read my emotions quite well. I found that we weren’t working together in the positive way we usually do. Both of us were frustrated. That continued through lunch. As usual, I finished my meal long before Kate. The difference was the tension I experienced in my effort to get home and then to the Red Cross. Nothing I said (the words, that is) should have conveyed the way I was feeling; nevertheless, I suspect she sensed my mood because she was not her happy self.

It wasn’t until the sitter came that she seemed to be more normal. This was a time she didn’t balk when I said I was leaving. She was probably happy to spend some time with the sitter. When I got home, she and Mary were having a good time looking at one of her family photo books. I was happy to see that, and the rest of the day went well.

Yesterday was a more typical day. We had no obligations before 3:00 that afternoon when we had hair appointments. She awoke unusually early, about 7:50. She was a bit groggy, but not in a bad mood. I told her I was glad to see her. She said she was happy to see me as well. We were off to a good start. Of course, we started that way the day before, but it didn’t last.

I thought she just wanted to go to the bathroom but soon discovered that she was ready for the day. She took a shower, and I got her clothes ready for her. When she was finished, she wanted to lie down again. That is not unusual, and since we were under no time pressure, I told her that would be fine. I said, “I’ll be in the kitchen. Just call me if you need me.” About forty-five minutes later, I heard her say, “Hey.” I went back to her and found that she was ready to get up and wanted her clothes. For the past couple of months, I have been laying them out at the foot of the bed on the side that is close to the bathroom. I do that so that she might notice them after her shower. I don’t think she has ever seen them. She asked where they were and I said, “I’ve got them right here.” And pulled them closer to her.

I remained with her the whole time she dressed. She wanted to do everything by herself but needed my help with every item of clothing. In contrast to the previous day, I wasn’t tense or frustrated at all. We had plenty of time and no time constraints. She was even glad for me to help with her hair. That is becoming increasingly frequent. I think she likes it. I know she likes it when I blow dry her hair.

After her morning meds, we were off to Panera arriving before 10:00. We were both relaxed when we got there. She took a few minutes to enjoy the flowers in a couple of large containers beside the door. I didn’t push her to move on any sooner than she wanted, as I did the previous day. We were there an hour while she worked jigsaw puzzles on her iPad, and I checked email on my laptop. Then we stopped by the house for about thirty minutes before going to lunch. We had established a leisurely style and a corresponding relaxed mood that lasted the rest of the day.

Very early after Kate’s diagnosis, I learned that she is very uncomfortable when I rush her. On several occasions, she had panic attacks when we were running late to an event that had a specific start time. That is when I first started experimenting with soothing music to calm her. Music has served us well since that time, but it is only more recently that I have focused on my own mood. I am generally even-tempered so I have thought of my mood as being helpful. I am, however, very sensitive about punctuality. I know she is able to sense the tension I feel when we run late. She has said as much on many occasions when I felt she was misreading how I felt. I thought I was disguising it. Now I am being more thoughtful about my own mood and its impact on Kate. My experience of the past two days shows what a difference mood can make. I know there will always be situations that produce tension for one or both of us, but I will be more mindful of its impact and do my best to control it more effectively.

Frustration

When I got up this morning, I was wondering how I would start this post. Then I checked in on Twitter and saw the following tweet from @theDAWNmethod (Judy Cornish).

One of the most frustrating things about having #dementia is waking up one day and finding yourself unable to perform a task or use a skill that has been effortless since you were a child.

It closed with a graphic that said, “Be Kind – Everyone You Meet is fighting a battle you know nothing about.”

Nothing could have been more appropriate for me to hear. It was a day for the sitter. That meant I was going to be concerned about getting Kate up and dressed in time for us to have lunch together before my appointment to donate platelets at the Red Cross. I started the process with a little soft music for about ten minutes. I had washed clothes and made a couple of trips to the bedroom to put them up. I noticed that Kate’s eyes were open, and she was in a good humor. I was encouraged.

When I had finished, I went to her bedside and told her I would love to take her to lunch. She said she would like that. Everything was going so well. I got her to the bathroom. After using the toilet, I told her to wash her hands and brush her teeth before getting dressed. She walked to the sink. She started to wash her hands without soap, something that is becoming a habit. I put some soap in her hand and told her to wet her hands and wash them. She didn’t know what to do. I tried to show her by motioning with my own hands. She still couldn’t understand. Finally, I washed them for her. It was only later that I began to think about the frustration that she must have felt. My instruction to “wet her hands and wash them” was itself confusing. It involved two separate steps. I know that is too much for her. In my haste, I forgot.

In the process, I showed my own frustration as I tried to get her to understand. I don’t recall what she said, but she snapped at me. Just as quickly she apologized; however, our frustrations weren’t over. She was much slower getting going. That meant getting dressed took longer than I had anticipated which added to my frustration. She wasn’t eager for my help, and I left her for a few minutes while I went to get a few things done before leaving. I noticed on the video cam that she had gotten back in bed. I rushed back to the bedroom and reminded her that we getting ready to leave for lunch. Although I tried to hide it, she sensed my frustration. That upset her. We rushed more than either one of us wanted and were later getting to lunch than I had intended. I called the sitter and told her we were running late. She was waiting for us when we got home. Then I rushed to brush my teeth and leave for my appointment. The good thing is that Kate seemed glad to see Mary. When I got home, they were seated on the sofa in the family room looking at one of her family photo books.

Lesson learned: She needs more time to get ready now. I have to get her up a little earlier.

Something else happened at dinner last night that also relates to the tweet I quoted above. She had tortelloni. The server brought her a cup of Parmesan cheese. Kate loves lots of it. The first thing she usually does is pick up the cup and pour its contents over her pasta. Last night she didn’t. I said, “Wouldn’t you like some cheese on your tortelloni?” She gave me a blank stare. I picked up the cup and said, Just pour this on your pasta.” She couldn’t understand. I did it for her.

She is increasingly forgetting the names of common things. I sometimes experience a moment of frustration when she doesn’t remember something she ordinarily would know. I have a momentary sense of disbelief that she can’t remember. I want to say, “You know, you just . . .” Then I have to tell myself, “Of course, she doesn’t know. She has Alzheimer’s.” Can you imagine what it must be like for her living in a world in which there are so many strange things and ways to use them? Living with Alzheimer’s presents continual moments of frustration for both the person with the disease and the caregiver. I am constantly learning and need to be a better student.

Confusion and Frustration

Yesterday was unusual in that the day began without a lot of apparent confusion. I mean that she was happy from the start and didn’t ask my name or hers or where we were the entire day. On the other hand, she experienced a good bit of confusion and frustration late in the day.

As often happens, she asked what she could do when we got home from lunch. I gave her the usual options of working on her iPad or looking at her photo books. She chose the iPad and walked over to the sofa. She asked if she could lie down. I told her that would be fine. Then she wanted to know if she could take off her shoes. Again, I told her that was fine.

This was about 2:00. She spent a little over two hours resting. I believe she was awake most of the time. At least once, it looked like she was asleep. Shortly after 4:00, she looked over at me. I asked if she would like to go out for ice cream. I was sure she would say yes, but she said no. She wanted to continue resting.

After another ten minutes, I asked if she would like for us to look through one of her photo books together. She liked that, and we spent the next forty-five minutes looking at the album of her mother’s family. This time was different. She was really working to remember who each person was as well as all the accompanying information as if she were preparing for a test. Since she was unable to remember any of these things for even a few seconds, she kept asking me to repeat what I had just told her. We spent a good ten minutes just trying to learn the names of the four members of her mother’s family whose picture was on the cover. I think we only got to move forward because I flipped to the opening page, and she focused on it. Despite the trouble she was having, we went through the entire book before I suggested we go to dinner.

After dinner, she usually wants to remain in the family room for an hour or so before going to our bedroom. Not so last night. She wanted to go directly to the bedroom where she began to work on her iPad.

She quickly ran into problems. Usually the most common problem is her getting into the store when she wants to get a new puzzle. She has a hard time remembering that all she has to do is touch one of the puzzles that are pictured. Instead, she touches a button in the top right-hand corner of the screen. That takes her to the store. This happened several times, but the bigger problem was simply figuring out how to put the pieces in their proper places.

We both became frustrated when I couldn’t explain that some pieces have a flat side that goes next to the edge that defines the area where the pieces should be placed. I was never able to get her to understand. When I tried to show her the line that makes a frame around the space where the pieces are to go, she simply couldn’t see it. This is another instance in which her vision is a major part of the problem. It was more than that, however. She couldn’t grasp that the flat side of a puzzle piece must go along the edge of the frame/border. Finally, I suggested she look at one of her photo books.

I went to the family room and brought back the “Big Sister” album. It has always been a winner. Kate’s interest begins with the cover photo. She recognized the two children as her and her brother Ken. I thought we might be off to a good start except that she didn’t comment on their smiles. They are normally the major drawing point for her.

She looked at the picture a moment. Then she asked me what she was supposed to do with it (the photo album). I said, “Just open it and look at the pictures.” She said, “How do you do that?” (She occasionally gets confused about books or magazines. She thinks they work like her iPad. Sometimes she is confused about opening her iPad as well.) I opened the book. She asked, “What do I do now?” I said, “This is a book of family photos. You just look at them and then turn the page to get other pictures.” She said, “Show me how.” I knelt down beside her chair and asked her to look at the pictures on that page. She looked, but she had a blank stare on her face. I couldn’t detect any sign of recognition or interest. It was as though all she could see was a page with a bunch of stuff on it, something I understand is a common experience for someone with dementia.

She wanted my help, and I proceeded to express the comments that she usually make when she has looked at the album on previous occasions. I was careful to talk about the smiles or the photos where there were no smiles. I identified each of the people in the pictures. As we focused on each picture, she kept wanting to touch the picture the way she touches the screen of her iPad. She couldn’t understand that the pleasure she could get from the photos was just looking at them. I tried to help her for about ten minutes before she said she was tired and suggested she might be able to understand better in the morning.

I helped her get ready for bed and put on a Barbra Streisand album that she likes. I left the room for a few minutes. When I returned, she said something about the woman. I would have thought that she was talking about Streisand because she often asks who is singing, but it sounded like she was talking about a woman who was in the house. I asked her what woman she was talking about. It was Streisand after all. She told me she had been talking to her. It is not unusual for her to ask me if I am the one singing when she hears a man’s voice. I guess she thought Streisand was in the room with her. I didn’t try to get her to explain any further.

The experiences of the day were further evidence (as though I needed it) that Kate is on a steeper decline than in the past. I was quite troubled by her difficulty with her puzzles and the photo book. These have been two great sources of entertainment for her. I am sure that working on the iPad will be a thing of the past in the upcoming weeks or months. I hope I am wrong. I am more optimistic about the photo books. As she uses the iPad less, she may experience less confusion about what to do with her photo books. In addition, I expect her interest in family will continue a long time to come.

Kate’s Feelings about Things that Require “Rational Thought”

I have commented many times about the fact that people with dementia lose their rational thought processes. They gradually lose their memory of names, places, and procedures. On the other hand, they retain their intuitive abilities. They are able to enjoy music, beauty in nature and art, eating favorite foods, and socializing with friends and family. Kate and I have gotten along happily by focusing on her intuitive abilities and have minimized the importance of the rational ones that have diminished so greatly. Over time, I have begun to notice an interesting intersection of rational and intuitive thought and have been struck by this connection. Let me give you a few examples.

At lunch earlier this week, Kate and I talked about a friend of mine. She asked where he lives. I told her Columbia, South Carolina. She was curious about the name and wondered about its origin. I told her it was named after Christopher Columbus. She said, “Who is he?” I explained that he is often thought of as the one who “discovered” America. She was puzzled. That led to my trying to explain his attempting to find the East by sailing west. I mentioned that people used to think the world was flat. As you might expect, she was quickly overwhelmed by information and asked me to stop. Her rational thought processes were unable to absorb what I was telling her.

We had a similar experience another day this week. She said something funny. We both laughed. Then I said, “You can really be funny. I’ll be your straight man. We could put this show on the road.” I got a puzzled look. I could tell she didn’t know what I meant by “straight man.” Then I tried to explain it. I didn’t get very far at all. I told her about comedians who worked in pairs and that one would appear to be more serious and would say things to prompt the other person to respond with something funny. Then I foolishly mentioned Abbot and Costello, George Burns and Gracie Allen, and Dean Martin and Jerry Lewis. Naturally, she didn’t remember any of them. I told her we would look at some YouTube videos to help her understand. That diverted her attention, and we went on to something else. The important point is that she has an intuitive sense that leads her to want to know the answer to a question her rational thought can’t handle.

The jigsaw puzzles she works on her iPad represent the most relevant example in our lives. She loves working her puzzles. She often asks me what she can do after we come home from lunch, dinner, or other outing. I give her the same choices almost every time. No matter what options I give her she almost always chooses the puzzles. Once she starts them, she inevitably runs into a problem. Every problem arises from a failure of her rational ability. One of the most frequent ones is getting stuck in the store to buy more puzzles. There is a small green button with a shopping cart in the upper right-hand corner of the screen. She frequently touches it instead of the button that will take her to select the next puzzle. Similarly, when she is on the screen with the choices for her next puzzle, she often forgets that all she has to do is touch the puzzle she wants to work. She often asks me how to get to the next puzzle. Other times, she chooses the “Store” button instead.

This can be frustrating for her. She wants another puzzle, but she can’t remember how to get it. In other words, her intuitive thought exhibits a feeling of desire for a puzzle, but her rational ability doesn’t function well enough to do it consistently.

Another incident illustrates this intuitive desire to know without the rational ability to remember. Not long ago, she couldn’t remember my name. I said, I said, “That’s not important. You know who I am.” She quickly responded. “It is important. I should know your name.”

Now let me return to my comment about an intersection of rational and intuitive thought or abilities. It has been almost a year since I first read The Dementia Handbook in which the author, Judy Cornish, defines these concepts and explains their relevance for people with dementia and their caregivers. When I first learned about these concepts, I thought of them as completely independent abilities unrelated to each other. I am now discovering that is not so.

My error was failing to recognize an important intersection between the two. Our intuitive thought leads us to get the answers to questions or problems. That’s something every parent and school teacher observes on a daily basis. Very early infants and toddlers use their intuitive abilities to explore the world. Think about a young child who picks up an object, looks at it, puts it in his mouth, and/or bangs it against the floor. In each case, he is learning something about the world around him. The curiosity of children always intrigues me. Everything is new. They have very little in the way of rational abilities and want to learn about everything. Our rational abilities develop over a lifetime, and much of learning involves our intuitive thought that tells us this learning is important or interesting or both.

Kate was an English teacher for three years and a librarian for the balance of her career. Like other educators, learning (and this means a lot of rational thought processes) is something she values highly. She admires and respects people who have achieved high levels of knowledge in any field of study. Even at this late stage of her Alzheimer’s, this feeling about knowledge is strong. She expresses it when she overhears a report on the evening news and wants me to explain it. The sad part is that she is no longer able to learn the way she did before. The surprising thing is that she isn’t frustrated all the time.

Another Dementia Test

Yesterday a nurse contracted with our long-term care insurance company came by the house for a periodic check up on Kate’s condition. I spoke with her in advance to let her know that Kate no longer remembers that she has Alzheimer’s and that I don’t want to remind her. She was mindful of that, but the test itself was a struggle.

There seems to be no way around some of the things that are required of the people who check on the insurance company’s clients. When the nurse came in, the first thing she did was show us her photo ID. She explained that she was there in connection with the in-home care Kate is receiving and mentioned the name of the company that provides our sitter. I don’t believe Kate has understood that she has in-home care from an agency. I have only told her that the sitter is someone I have asked to stay with her while I am gone. Kate accepts that because she doesn’t want to be left alone; however, I don’t believe she thinks of herself as having a caregiver. I know she recognizes that I do just about everything for her, but I don’t think she sees me as a caregiver or that she needs one.

At this stage, I suppose none of this matters since Kate doesn’t remember that the nurse came by at all, much less what she said or asked. Nonetheless, I felt uncomfortable for Kate throughout the thirty-five-minute interview. By far the worst part was observing her miserable performance on the “test.” The nurse handled it well by explaining that there are no right or wrong answers. She was very encouraging when Kate struggled for her answers. Several times she said, “This is ridiculous.” I should add that she also said “Thank you. I appreciate your understanding.” when Kate tried very hard to remember something and couldn’t.

The test seemed rather long to me. That may well have been because Kate was only able to answer one question, and that one surprised me. The nurse asked, “Where are we right now?” Kate hesitated a moment and said, “Home.” I was ready for her to say, “Texas.” Here is a sample of questions she couldn’t answer: Her date of birth, her age, the state where she lives, her address, the President, any president, as well as the month, date, year and season we are in. The nurse also pointed to her watch and asked Kate to tell her what it was. Kate said she couldn’t see it. The nurse got up, walked over to Kate, and let her hold the watch. Kate couldn’t think of “watch.” That was one of two of Kate’s answers that surprised me. The other was correctly identifying where we were. Near the end of her questions, the nurse asked her if she thought she had any problems with her memory. She didn’t hesitate and said, “No.”

By this time, Kate has had quite a few such tests. I suspect I am not the only spouse or child to feel uncomfortable watching his loved one go through this process. Although I am concerned about the next one, I suspect that she is now reaching a point when it may not frustrate her. I know this has to be done, but it runs counter to the way I try to relate to her.

An Unusual Expression of Frustration

Last night was opera night at Casa Bella. We sat at our usual table with the couple who used to operate the restaurant before their daughter and her husband took over. A new couple joined us. We were seated with the three women on one side of table each one across from her husband. Kate and I were in the middle. The conversation was going on in several directions. At one point, Kate got my attention and asked me to tell her where we live. The woman to her right had asked her, and Kate didn’t know the answer. I said, “Knoxville,” but she wanted to know the part of Knoxville. I told her. The conversation continued. Then Kate wanted to know where she is from, that is, her original home. At that time, the person to her right was talking diagonally across the table to the person on my right. I looked at Kate and asked her to wait just a minute in order not to interrupt them. Kate was frustrated. When she wants something, she wants it right then. In a loud voice she said, “Richard, where am I from?” It wasn’t loud enough to be heard around the room where the rest of the crowd was involved in their own conversations; however, it was obvious to each of us seated at our table. I told her Fort Worth. Since the man to my left had a friend in Fort Worth, that opened another conversation. We went on without showing any sign of Kate’s outburst. It would have been a good time for one of the cards I am having printed just for this purpose. They will arrive sometime next week. That’s good. We could be reaching the time where they might come in handy.

Frustrations of Caregiving

Since Kate’s diagnosis, I have read a good number of books written by caregivers. I have also checked a variety of message boards like those on the Alzheimer’s Association’s website and groups on Facebook. I’ve read enough to appreciate the broad range of frustrations experienced by caregivers. Most of these are directly related to the behavior of their loved ones, but some of them involve family and friends who offer their own views concerning what their loved ones need. The volume of complaints and expressions of despair have led me to spend less time on message boards. I don’t mean that I am unsympathetic to their frustrations, but I quickly found that spending much time with them conflicted with my own experiences.

My experiences with Kate have been much more positive than those of other caregivers. At least one experience we have in common is one that has not been a problem for me. Like other people with dementia, Kate repeatedly asks the same questions. “Where are we?” “What is his name?” “How many years have we been married?” I know that this is very annoying to many caregivers. This doesn’t bother me at all, and I don’t know that I have a good explanation for why we respond so differently. I can only say that I just recognize that it is impossible for her to remember. It seems hard to imagine my being annoyed with her for something that is so far beyond her control.

This doesn’t mean that I am not frustrated by other things that she does. I started to use the word “annoyed” rather than frustrated, but that suggests an irritation with Kate herself. That’s not it. It’s a frustration that I haven’t been able to accomplish what I had intended. Most of the time, I even see humor in these frustrating experiences. Let me explain.

If you are a regular reader of this blog, you know that I readily acknowledge having OCD tendencies. I like order and regularity. People with loved ones with dementia will immediately recognize the potential problem. That means Kate and I are like polar opposites. Each day brings a host of things that don’t match my plans or desires. Let’s look at a few examples.

A year and a half ago, I had our master bathroom remodeled. The motivation was to make it more handicapped accessible. Since the remodeling, Kate has showered mostly in the bathroom of our guest room. She does often brush her teeth in our bathroom. I don’t know how it happens, but she frequently spatters toothpaste on the mirror above her sink. She also leaves water on the counter around the sink. When she uses a wash cloth and towel, she rarely hangs them up. They are just thrown on the counter.

On those occasions when she showers in our bathroom, she leaves her night gown that is thrown on top of a cabinet for our towels. She normally uses at least two bath towels, sometimes three. In addition, the bathmat is wet as though it might have been used to wipe up the floor. When she leaves the bathroom, they are almost always thrown on the floor. When I see them, I clean things up. I do notice these things and prefer they didn’t happen, but I think of them as trivial. I am not seriously bothered. In a way, it really is comical. Think of The Odd Couple.

There are two other things that have caused more angst. One is my car. I try to keep all my belongs looking as new as I can for as long as I can. My car is a little over 6 years old, but I would still like it to look like new. It doesn’t. I have accepted the fact that with Kate, it puts too much emphasis on something I consider far less important than the quality of her life. That doesn’t mean that I don’t notice things. I keep a hair brush in the car for Kate. The other day she started pulling out the accumulated hair in the brush. She simply pulled it out and dropped it on floor board at her feet. I am sure she felt better having a brush that was free of hair but never gave a thought to the fact that it was now on the floorboard of my car.

My number one frustration occurs with her clothes. I have many specific examples, but I will pick the one that bothers me most. Friday morning in Asheville, I got out a brand new pair of stone colored pants and a nice casual top that she had worn only a couple of times. They were topped off with her nicest casual shoes. This is what she was wearing when we arrived home and she decided to work outside. About fifteen minutes later, I looked out. She was sitting on the ground pulling weeds. Two or three years ago, I would have suggested that she change into her yard clothes if she wanted to work outside. Over the years, I decided to accept her natural inclination. She has worked in her regular clothes ever since, and I have become more appreciative of Oxyclean. I recognized that I was fighting a losing battle. She couldn’t adapt to my way of doing things. I needed to adapt to hers. Today, I believe we are both winners. More than anything else, I want her to enjoy herself and be happy. She can’t do that if I try to force her to live like me. I am convinced that I made the right choice to adapt rather than fight.

Problem Finding Clothes

In my earlier post today I neglected to say that we got off on a bad start when Kate was getting ready to go with me to the Y breakfast. She got up early (5:30) and had plenty of time, but she stayed in the bedroom on her computer and or iPad until 30 minutes before our departure time. Then she had a hard time finding clothes to wear including undergarments. This frustrated her but led to her feeling frustrated with her Alzheimer’s symptoms.