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I spoke too soon.

Not long after uploading my previous post, I went back to the bedroom. I saw that Kate was awake and walked over to her. She was having a similar, but milder, attack like those she experienced the past four mornings. I said, “Are you all right?” She said, “I think so. I don’t know.” I told her I would like to help her if I could. I asked if she would like me to bring my laptop to the bedroom and stay with her. She nodded. I returned and put on some music.

She never went back to sleep. I doubt that she had been to sleep since getting up to go to the bathroom at 7:45. Around 9:30, she sat up on the side of the bed. She was still confused, but she didn’t seem to be troubled the way she was earlier. She said, “What now?” I told her I thought it might be good for her to get dressed and get her something to eat. I mentioned getting a muffin. She didn’t say anything, but she looked as though she had never heard of a muffin.

I helped her to her feet and told her I wanted to show her something. We walked hand-in-hand to the hallway outside our bedroom. We stopped at a picture of her grandmother. I told her this was somebody very important to her. Then I explained that she was the first member of Kate’s family to attend TCU. She was pleased about that. I was glad to see her response because a few days ago I mentioned TCU, and it didn’t mean anything to her. That was a first.

After talking with her about her grandmother, I focused her attention on the next photo. It was her mother when she was around 19 or 20. Kate didn’t recognize her but was taken with the picture. As she often does, she noted her mother’s eyes and smile. She commented more extensively than usual on this and other pictures that I showed her. I can’t remember exactly what she said, but she interpreted her mother’s personality based on what she saw in her mother’s face. By this time, she seemed just fine.

We went on to two other photos, one of her grandfather on her father’s side and then her father. From there we walked into the family room where I showed her a picture of our daughter’s twin boys when they were about 5 or 6. As we entered the room, she said, “You’re really helping me.” She always likes children whether in person or photos. Thus, she was enthralled at the twins’ picture. Again, she tried to interpret their personalities from what she saw.

I took her to the sofa and asked her to sit down so that I could show her something else. I picked up the “Big Sister” album and called her attention to the cover picture. This time she didn’t recognize either herself or her brother, but she was taken with the children, especially their eyes and smiles.

We talked about them for a few minutes. Then she said she was cold. She was still in her nightgown and bare feet. I suggested we get her dressed. I helped her stand up and, as we walked to the bedroom, she said, “I’m bouncing back thanks to you.” I was particularly struck by her recognition that she was “bouncing back.” It had been thirty minutes since she had gotten out of bed. I was surprised that she could remember how she felt that long ago. Once again, we had found our way out of what might have been a crisis. It’s a relief when this happens.

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Another Morning of Anxiety

As I have described the past three mornings, yesterday Kate’s memory was almost completely blank again. In some ways this isn’t unusual. Over the past year she has often not known where she is or who she and I are when she wakes. The difference the past few days is the anxiety that accompanies it. In the past, I would tell her. Then she seemed to be all right even though she might ask the same questions again right away. During each of the past few days she has been more concerned, even frightened, about not knowing these things. The first experience on Saturday was the most intense. It also lasted an hour.

Her experience yesterday was different in that it was milder and shorter in duration. She was very sleepy. I didn’t attempt to show her any pictures of her family. I focused primarily on comforting her. I did play the same music I had played the previous days. I got in bed with her. She began to relax and fell asleep within fifteen minutes. I brought my laptop back to the bedroom and stayed with her until it was time for lunch. She was fine when I got her up.

We met one of our associate pastors and his wife for lunch at Casa Bella. Kate has always liked him and his wife. She wasn’t talkative, but she enjoyed being with them. They probably would never have imagined the state she was in a little earlier. Her ability to bounce back is another way in which we have been fortunate.

This morning at 7:45, she started to get up. I went to the bedroom. She was unusually alert and seemed like she didn’t need my help. I walked her to the bathroom and back to bed. She thanked me and said, “You’re really a nice guy.” She is asleep again. We’re off to a good start. I’m hopeful that she will be fine when I get her up for lunch.

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Not our Best Day: Kate’s Most Intense and Long-lasting Anxiety Attack

Yesterday started out well. I slept until almost 6:00, had breakfast, took a forty-minute jaunt around the house, watered plants, and wrote a new blog post; however, the pleasantness of the morning ended abruptly when I went into wake Kate for lunch. She had her worst anxiety attack. It was more intense and longer in duration than the earlier ones – about an hour.

She was frightened and unable to explain what she was experiencing. On the previous occasions, she has said things like “I don’t know where I am or who I am or anything.” This time the only thing she said was “I don’t know what’s going on.” She was shaking. Not surprisingly, she didn’t know my name or our relationship. I asked her if I seemed familiar to her. She said I did. I held her hand and said, “I hope you think I’m a nice guy.” She said she did. Despite letting me hold her hand, her attitude toward me was one of “approach/avoidance.” At one point, I started to put my arm around her. She resisted. It was as if she weren’t quite sure about me, but I was the only “thing”/person she recognized. There was no one else she could trust.

During the hour she and I were in bed, she repeatedly asked my name but couldn’t remember it. Only a few minutes passed before I put on some music by the Susquehanna Chorale. I selected some of her favorite pieces, “Shenandoah,” “Danny Boy,” “Loch Lomond,” “Deep River,” and “Swing Low Sweet Chariot.” I followed that with a series of John Rutter arrangements that were very soothing. I talked to her as the music played. I tried to speak slowly in a comforting voice. I mentioned many of the things that I know she likes – our courtship, marriage, and family.

Thinking that it might help to trigger a few memories, I encouraged her to get up and let me show her the house and take her to lunch. Each time she would clutch herself and tell me that she was scared and didn’t want to get out of bed. I’m not sure whether the music or my talking calmed her, perhaps both, because she gradually felt more comfortable. After a while, I asked if she would like to go to the bathroom. She did. Within moments of getting up she seemed to be better. The crisis was over.

When we got home from lunch, Kate was tired. She rested for over two hours. During that time, I asked if she would like for us to look at one of her photo books or go to Barnes & Noble. She said she just wanted to rest. About an hour before going to dinner, I picked up her “Big Sister” album that her brother Ken had made for her. I walked over to the sofa and showed her the cover picture. She didn’t show the usual excitement. I pointed to the picture of her and asked if she knew who that was. She gave me a faint smile and pointed to herself. Then I said, “Don’t you like the smiles?” She did.

I was standing in front of her and turned the book so that I could leaf through it. I turned to the first page that has a photo of Kate with her mother and father. I said, “Here’s a picture I like.” I showed it to her and said, “Why don’t you sit up and let me sit down beside you. We can look at some of the pictures together?” She still didn’t express any enthusiasm, but she agreed. By the time we got through a couple of pages, she finally responded the way I had hoped. She was getting into it. Her mood began to shift toward cheerfulness. We spent almost an hour going through the book. She was fine again, and we went to dinner. She remained in a good humor after that although she was tired and went to bed a little earlier than usual.

It was just over a year ago when Kate had her first anxiety/panic attack. Since then she made have had three or four more. Thankfully, they don’t come often. Each time one occurs I am a little surprised because I haven’t been able to see it coming. I think all but one of them occurred after she had been sleeping or resting. The one yesterday was the most intense and long-lasting. I don’t like seeing her suffer in this way and hope she doesn’t have another experience like it. I’m just glad that I am still able to find ways to “bring her back.”

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Confusion, but in a Good Mood

Yesterday morning was a time of significant confusion for Kate. It was similar to several other moments when her memory seemed to be completely blank. She was concerned but showed no signs of the panic she has had in similar situations. I was in the kitchen when I heard her call my name over the video cam. Yes, she did remember my name. This was one of those times the camera paid off. Kate called to me in a somewhat soft tone of voice, nothing like a shout or scream. The microphone is very sensitive. I heard her immediately and went to her.

At first, I didn’t sense the degree of her confusion. As she does so often, she asked me where we were. I told her we were in Knoxville. She looked puzzled. She asked why. I explained that we live here and that “this is our house.” Then I said, “You look like you are a little confused. What could I do to help you?” That opened the door to an hour-long conversation during which she asked questions (often the same ones over and over) and I gave her the answers. We talked about her parents, my parents, and our children and grandchildren. The topics also included how we had met, places we had lived, her work and mine, and other special things we have done.

Several times, I asked if she might like to get up. She declined saying, “I would rather hear you tell me about my family.” The last time I asked, she agreed it was time to get up. She took a shower and got back in bed for another hour. When I got her up for lunch she was fine.

I don’t know how confused or clearheaded she was about our relationship. I only know that she called my name when she wanted me. She was in a pleasant mood throughout the episode and for the balance of the day. This is another good example of the transition she can make extreme confusion to a more normal state. It seems clear to me that when she wakes up most of her connections to the world around her are dormant. As she receives the information I give her and as she directly experiences more of her everyday life, she feels more at ease.

That doesn’t mean she knows where she is or the people around her. Increasingly, she thinks we are staying in some other place than our home. That was true when we got home last night. In the car she asked where we would be staying. I told her we would be in our very own home. She asked if it was very far. When we drove up to the house, I said, “This is where we will be staying.” She admired everything she saw and never realized we were at home, but she was happy.

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Kate’s Mood and Happy Moments

As Kate continues to exhibit more of the symptoms associated with dementia, I find myself entering a new phase myself. I’m not sure what to call it. I could say it is just adapting, but that isn’t precise enough. It involves accepting her decline for what it is – the loss of all her rational abilities. I can’t change that. I can feel sad as I often do, but I want to do something more constructive. That leaves me to focus on making her happy. I’m not always able to do that, at least in a very short span of time, but she is content and happy most of the time. That is particularly true after we get by the “waking up period.” That remains the most challenging time. In most cases, by lunch she is in a better mood. Afternoons and evenings almost always go well.

Yesterday was a perfect example. She was up before 8:30. She appeared to recognize me as her husband, but she was a bit confused about where we were. I had gone to her room when the video cam alerted me that she was beginning to get up. When I got to her, I said good morning and asked if I could help her. The first thing she said was, “Yes, get me out of here.” Then she said, “Where are we?” I told here we were in our house and that she would recognize it when she was a little more awake. She didn’t show any excitement or interest about being at home. She was still too confused for that and wasn’t in a happy mood.

After her trip to the bathroom, we went back to the bedroom to dress. She was very cooperative in getting dressed. She still shows some signs of independence, but she likes some kinds of help. She prefers that I put her socks on for her. I suspect that is motivated by convenience. She doesn’t have to lean down. She just sticks her feet out like a child, and I slip them on. When she has taken a shower she likes it when I help drying her back and legs and blow drying her hair. Sometimes she wants me to brush her hair as well.

When we were about to finish, she asked, “Who are you?” I gave her my name and said told her I was her husband. She didn’t believe that. I said, “Just think of me as a friend.” She liked that better. I brushed her hair. She thanked me. Then he said, “Of course, you get paid for this.” I said, “I do?” She said, “You should.” In a few minutes she made another reference to my being paid for helping her. Could she be thinking of me as a paid caregiver?

At lunch, she said something I thought was funny. Without making any reference to what we had said earlier, I asked if she knew how long we had been married, She immediately said, “Too long.” I said, “Good reply. You’re funny.” She said, “I learned it from you.” Her mood had changed. She was happy.

After lunch, she wanted to rest. That was no surprise since she had gotten up at 8:30. The sitter arrived while she was resting but not asleep. I didn’t say I was leaving until after Mary arrived. When I mentioned I was leaving for the Y, Kate didn’t act alarmed nor did she say anything like “Why don’t you stay with us?” She stood up and greeted Mary warmly.

When I returned, Kate was still on the sofa. She smiled when she saw me and was very happy. She told me she was glad to see me. I said I was glad to see her as well. After Mary was gone, she repeated multiple times how glad she was to see me. We got ready to leave for dinner. In the car, she again said she was glad to see me. By this time, she was in a very good mood. That continued for the balance of the evening. I didn’t have to work at keeping her happy. It’s just that rough edge that we sometimes have at the beginning of some days.

Her mood when she wakes is something I can’t control, but I can focus on what happens after that. So far, her mood has always improved in a relatively short period of time, and the afternoons and evenings are the most predictable Happy Moments. Maybe I should think of this as a “Mood Management Phase.” That’s what it’s all about now.

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Communication and Kate’s Health and Wellness

A week ago, a Twitter friend posted something that caught my attention. She emphasized how important it is that caregivers are mindful of the signs of health issues our caregivers experience as their communication skills deteriorate. That was relevant to me right now.

Among the many reasons that Kate and I have gotten along so well since her diagnosis is that neither of us has faced any other serious health problems. That has enabled me to give my full attention to her Alzheimer’s. When either of us has had colds, I have been more aware of how even that can impact our normal routine.

As my friend’s tweet suggests, my awareness of other health concerns is hampered by Kate’s inability to tell me anything about her symptoms. When she has had colds, I have always noticed before she did. Fortunately, neither of us has had many colds. Recently, however, she has encountered at least three new issues that concern me.

The one that has bothered me the most has been her eyesight. When she looks at her photo books, she often sees one person but fails to see the person next to her. It occurs frequently when there are three people. She sees the first person on the left. If I ask her who the next person is, she often skips the second person and goes to the third person. When she gets all the jigsaw pieces in place but one, she seems unable to see the blank spot where the last one goes. She walks to and from our car in a parking lot, much like a person who is blind. I know she isn’t, but she is very unsure of herself.

I have tried to get her to tell me what her vision is like and test her when we are at home, but she isn’t aware of a problem and/or can’t express what her experience is like. Since she has regular eye exams twice a year, I hadn’t been worried about any serious vision problems until recently. I attributed everything to her Alzheimer’s. Some of that seemed obvious to me. For example, I do know that some people find that people with dementia don’t want to walk on a black doormat because it is perceived as a hole in the floor. Kate is sensitive to contrasts in flooring or pavement. When she encounters them, she holds up a moment and wants to hold my hand. Last night as we left Bonefish Grill, she saw black spots on the sidewalk and asked if they were holes. That is probably related to her concern about color contrasts on pavement.

Yesterday I spoke with the nurse assistant to Kate’s ophthalmologist. I called to see if her doctor thought Kate’s vision problems could be something more serious, possibly macular degeneration. The doctor said it was unlikely since she had not seen any signs of that at the time of Kate’s last appointment five months ago. The next appointment is in three weeks. We decided to wait until then to see if there are other problems. The doctor thought Kate’s Alzheimer’s is to blame. I suspect she is right but will be eager to see if there is more that we should be concerned about.

Another problem is her hearing. That, too, is something that may be a result of her Alzheimer’s, but she has always had a problem with wax buildup in her ears. We have periodically had them flushed by a doctor. I have tried at home without much success. The last time they were flushed was about six months ago. We have an upcoming appointment with her doctor next week. They should take care of that for us. Kate has said almost nothing about a problem but did mention it within the past week. This is something else to which I need to be attentive.

The problem we may have the most difficult time addressing is her physical mobility. I think that is one that I may have to adjust to. Once again yesterday, she rested the balance of the afternoon (about three hours) after returning from lunch around 2:00. The good news is that she has gotten up earlier in the morning several times in the past couple of weeks. That enables us to get out of the house a little more. That is the only way she can get any exercise. We have an appointment with her doctor next week and will talk about that. I have already started a letter updating the doctor, so she will be prepared when we meet. I wonder how much of the problem is arthritis. It is interesting that she doesn’t complain of any pain; however, it sounds like she is in pain when she gets out of a chair or bed. When I ask directly whether she feels any pain, she says she doesn’t.

One thing that Kate is very aware of, but cannot explain to me, is a dental problem. She brushes her teeth a lot and also picks at her teeth. She feels like she has something caught between then. When I help her floss, I don’t see anything that should make her feel that way, and the flossing doesn’t solve the issue. She also rinses her mouth out multiple times when she brushes. She rinses, spits out, rinses, spits out, rinses, spits out. As she does this, it appears that there is something stuck in her mouth that she wants to get out but can’t. I have been giving her mouthwash to see if that might help. So far I’ve had no luck.

I wonder if this is related to her salivation issue that has never ceased since it started during the summer of 2016. She still does not swallow her saliva. She goes through a lot of paper napkins and paper towels. Often she wipes her mouth with her hands an wipes them on her clothes. That has had an effect on how often I wash. Both her doctor and dentist have suggested that she is bothered by what is a common problem among seniors. There is a collection of phlegm in the throat. I do recall that with my dad. It was through his speech therapist that I first learned of this issue. In Dad’s case, it did not keep him from swallowing. Kate, however, seems to be bothered by the idea of swallowing it.

For the moment, we don’t have any skin problems. The squamous cell growth on her lip is completely gone. Our next appointment with the doctor is in November. I’m not concerned about anything now, but it is one other thing for me to watch.

My Twitter friend was right. A caregiver definitely has to be observant when caring for someone who can’t communicate or effectively explain any problems. Otherwise, things could get out of hand quickly.

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Kate may be unsure of who I am, but she believes I am important to her.

I don’t have a clear idea how often Kate remembers that I am her husband. I know it is often enough that I have grown accustomed to her not remembering. For most caregivers this is one of the saddest things that happens as one’s spouse reaches the late stages of Alzheimer’s. That is particularly true the first few times it occurs. That has been my personal experience.

By now I have adapted and accept it. I take comfort in the fact that Kate still recognizes me as someone with whom she is familiar and is important to her. Not a day goes by without my having experiences that tell me that is so. Here are several that happened during the past forty-eight hours.

Night before last when I told her it was time to get ready for bed, she wanted to know where the bathroom was. During the past six months or so, I can’t remember a time when she didn’t ask me that. I led her to the bathroom and pointed out the toilet. I was about to leave her when she told me she wanted me to stay. This, too, is something that is becoming common. She is very unsure of what to do each step. She often asks me, “What next?” I stayed. Before washing her hands, she motioned me to come closer and whispered, “Does she know I’m a woman?” I told her I didn’t know who she was talking about but she and I were the only ones in the house. That worked; she didn’t say anything more. Sometimes she seems to recognize quickly that she has believed something that wasn’t so.

This was another time when she couldn’t understand my instructions about washing her hands. I put soap in her hands and washed them myself. This is just another illustration of her dependence. It’s not consistent, but it is increasing more rapidly than in the past.

After she was in bed, she told me that she was glad I was with her. She thought we were in a strange place and said it was a nice room, but she was feeling better knowing I was there. She began to “work” on her hair, pulling stands from her scalp to the ends. She asked me if it was all right for her to start on the right side and then do the left side of her head. I said, “That would be fine.”

I told her I was going to the family room for a few minutes and that I was not leaving her alone. As I started to walk out the door, she said, “What should I call you if I need you?” I told her my name was Richard. She said, “Okay, Mr. Richard.” I said, “You don’t have to call me mister. You can just call be Richard. She said, “What will he say?” I asked who she was talking about. She said, “You know – the other man.” I told her we were the only people in the house, and it was all right if she just called me Richard. She said, “Okay.” As you know this was far from the first time she had forgotten my name and no doubt our relationship, but over the past week this seems to have occurred for longer periods of time.

When I got into bed a little later, she was still awake. We talked for a few minutes. Then I told her I was going to sleep and said, “I love you.” She laughed. From past experience I knew that she didn’t realize that we are married, just friends. I said, “You usually say you love me too.” She said, “I’m not ready for that.” I said, “You would rather that we just be friends.” She said, “For right now anyway.” We talked a little longer. Then I told her I was ready to go to sleep. I paused and said, “Good night, I love you.” She laughed again.

Yesterday was a day for the sitter. I was relieved when she got up about 8:30. I didn’t have to worry about getting her up. She went back to bed after taking a shower. I let her stay there until 9:30 when I got her dressed. Then we went to Panera. I think this was the third or fourth time in about ten days. We arrived home just ahead of Sandy. I hadn’t said a word to Kate about my leaving. When I got my things together, I told her I was off to Rotary and the Y. She said, “How long are you going to be gone?” I told her it wouldn’t be long, that I was going to Rotary and then to the Y.” She said, “We’ll see.” She wasn’t making much of a protest, but I knew she wished I would stay.

When I go home, she was seated in a chair with her iPad, and Sandy was standing beside her. Kate said, “Oh, good.” It turned out that she had gotten into the store again and Sandy was about to help her get back to her puzzles. Sandy had probably helped her with this a number of times while I was gone. It happens frequently, and Sandy knows how to solve the problem.

Kate is almost always glad to see me. What was interesting this time was just how relieved she was. She breathed a very loud sigh of relief. Then she introduced me to Sandy as her cousin and said, “His name is Richard.” I was a bit surprised that she got my name right after slipping on our relationship. When Sandy left, she said, “I’m so glad to see you.”

Last night we had an experience like the one the previous night when she didn’t realize we were married. We were talking after I had gotten in bed. She said, “This is a nice room.” I said, “I think so too.” Then she said, “I’ve seen worse.” I chuckled. It wasn’t long before we said good night, and I said, “I love you.” Then we had a repeat of the previous night, but she did say, “You’re a nice guy. I like you a lot.” I said, “So you’re glad I’m here.” With emphasis, she said, “Definitely.” That will carry me a long way.

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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.

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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.

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The Intensity of Kate’s Intuitive Abilities

I have often mentioned how much pleasure Kate and I receive because of her intuitive abilities. Recently, I indicated that they seem even more intense now than they used to be. Several things have happened in the past few days that reinforce my belief that they really are more intense now than before. All of them involve behaviors I have previously observed, but they were so much stronger than normal I wanted to pass them along. They are all experiences that involve her emotional response to visual stimuli.

Many of them involve her feelings about trees and flowering plants. She seems enraptured wherever she sees them. The plants on our patio and the trees on the neighbor’s property behind our house get most of her attention. She stops to look at them almost every time she passes through our family room. It also includes the flora she sees whenever we are in the car. This occurs even in areas that I wouldn’t say are especially beautiful, like some of the areas on either side of a highway. One of those instances happened at Chalupas Monday night. As we entered the restaurant, she saw two large pots with a grassy plant similar to liriope. They looked desperate for water. She immediately reacted to them and told the server who greeted us how beautiful they were. They have been in the same place for as long as I can remember, but this was the first time she has reacted to them.

The strength of her feelings is illustrated in a variety of other ways. She bought a ceramic cat many years ago that she used to keep in the bath off our our laundry room. It was something of a surprise to visitors who saw it at the base of the toilet. I moved it to the family room sometime in the past year or so. It now resides on the floor near the doorway from the family room to the kitchen. We pass by it every time we leave the house. It is only recently that she has taken special notice of it. Now she stops and says hello each time she walks by. A couple of weeks ago, she said we ought to give him a name. The next time she walked by him I told her his name is Pepper for Dr. Pepper since that is her favorite drink. She can’t remember the name, but she always likes it when I tell her.

She also takes greater interest in family photos each day. Two of those are of our daughter in her wedding gown that sit on a dresser in our bedroom. They catch her eye every morning. She doesn’t remember they are of our daughter, but she loves looking at her and her smile. The other pictures are grouped together as we leave the family room. Two of them are of our son when he was a child. Another is a picture of me when I was about twelve. There is one more of her father. It has become a ritual to stop and look at these photos each time we go out. She surprised me yesterday morning when she saw her father. She said, “I know who that is.” I said, “Who?” She said, “My father.” That was the first time I recall her recognizing this photo of him. On several occasions recently, she has picked up the photos of our son and asked if she could take them with us. I let her take them to the car. Once we are in the car, she usually gives them to me. I find a secure place to put them and return them to the house when we get home. The walk through our family room is turning out to be something that energizes her as we leave.

Night before last, she went to the bathroom before we went to dinner. She noticed a ceramic container with artificial flowers beside the sink. She had purchased it on our last trip to Fort Worth. Until last night, I don’t remember her saying anything about it. But she brought it to me. She said she loved it and asked if she could take it with us. I told her she could. It remained in the car until we got home when I brought it inside and put it back where she had found it. She not only received pleasure from seeing it but also being able to take it with her.

Another example occurred after lunch yesterday. As I turned into the driveway, she was puzzled about why we were here. I said, “This is our house. You’ll recognize it once we are inside.” I gave her a tour of the house similar to what I have done a couple of times in the past but much shorter. I pointed out a portrait of her grandfather and another of her mother, wedding photos of her and our daughter Jesse, and other artwork. She raved about everything she saw but never responded as though she had ever been here before.

When we circled around to the family room, she wanted to rest. She lay down on the sofa looking toward the backyard. She responded to that with enthusiasm. In addition, she looked around the room, and commented on how much she said she liked it. She said, “This is beautiful, and I haven’t even seen the rest of the house.” I told her I would be glad to show it to her. She said, “Not right now. Maybe tomorrow. I just want to rest.” And that is just what she did for the next three hours. She started working on her iPad but put it down after a few minutes. She was never asleep. I offered to go through family photo books, but she preferred to lie there. Like the day before, she was content. By the way, the battery on her iPad was at 81% of capacity this morning when I brought it to the kitchen to be charged. That makes three days in a row that the iPad hasn’t seen much use.

Experiences like these are not only important for her, but they are for me as well. It is sad that the tour of half the house did not jog her memory at all. On the other hand, she enjoyed the house tour. It’s an illustration of how each of us is still able to provide pleasure for the other. At this stage of her Alzheimer’s, that is priceless.