I can’t prevent attacks of anxiety, but they don’t last.

When I went to the bedroom to wake Kate yesterday, I found that she was having another anxiety attack. She was frightened and looking around the room for something that seemed familiar. I recognized the problem without her saying anything. I said, “I’m sorry I didn’t know you were already awake. I’d like to help you if I can.” She said, “Where is my maybee?” I told her I didn’t understand. She realized she wasn’t using the right word and tried again. Then she said, “My mother.” I said, “I can tell you about your mother.” She said, “Do I have a mother? I want my mother.”

We talked a few minutes about her mother. Then she wanted to know where her clothes were. I brought her clothes to her and told her I would help her dress. I suggested that she first go to the bathroom. As we walked to the bathroom, she asked again about her clothes and said, “I see other people, and they all have clothes on. I want my clothes.” I said, “You are right. You’ll want your clothes when we go outside.” She said, “See. I’m smart.”

This was one of the many times I wish that I had recorded or could remember exactly what she said. I can only try to capture the sense of what happened. It is not unusual for her to tell me she is smart. Although sometimes she makes it clear that she wants me to understand that, I believe she is also telling herself that she is smart even though she recognizes her problems. In this particular conversation she commented on understanding a word I had used and also one that she had used herself. I don’t recall either one, but she said, “See, I remembered that.” She was also proud that she put her top on the right way.

When she was dressed, I told her I wanted to take her to lunch. She said, “I want to go home.” She says this occasionally when she wakes in the morning. I usually tell her she is at home, and she accepts that. Sometimes she doesn’t believe me, and I try to redirect her attention to something else. In this case, I told her I would take her home, but I wanted to show her something before we left.

Then I went through the same routine I had done the day before with photos of her family. Once again, she noticed Pepper, the ceramic cat, as well as the flowers on the patio. She asked if we could walk outside to get a better look. We took a few minutes to do that and then left for lunch. She no longer showed any signs of anxiety. She didn’t, however, know who I was. When she was dressing, she asked if I were her daddy. I told her I wasn’t and that I was her husband. She didn’t believe that. I said, “Let’s just say I’m a friend.” She liked that better.

On the way to lunch, I played an album of music by a group that had played the Four Seasons in Jersey Boys. She enjoyed the music and clapped her hands on her legs and also moved her hands around the way she might have done if she were dancing. She had a good time.

She was talkative at lunch. It wasn’t long before we began to talk about our relationship. She specifically said something about our being married. The rest of the lunch and the day went very well. She showed no anxiety or doubt about me and our relationship. I will say, however, she often slips back and forth between knowing our relationship and not. I don’t quiz her all the time to know when she knows and doesn’t know. I almost always make a judgment based on the way she relates to me. During the afternoon and evening, it seemed like she did know me as her husband. Once again, we had moved from a moment of anxiety to feeling at ease. This reinforces my belief that she just needs to be exposed to things with which she has been familiar. Then the anxiety disappears.

Is our glass “half-full” or is it “half-empty”?

When I began this journal (now a blog), I wanted to create an account of our lives since Kate’s diagnosis. That is the reason for my providing so much information about our daily activities. In a way, I wanted my posts to paint an accurate picture of the struggles we have faced and how we have adapted. Looking back, I think I was expecting more problems to deal with and fewer moments of happiness. As it has turned out, it is the “Happy Moments” rather than struggles that have filled our lives.

I often worry that whatever I say will lead some to believe that our lives are either “good” or “bad.” The reality is that our lives are a complicated mixture of both. Even now, the good far outweighs the bad. I do understand, however, that the way I have adapted to Kate’s changes permits me to see it that way. If I were looking at our lives today through the lens of 2011, I would be depressed. I am not depressed today. I have learned to appreciate many little things that I previously would have thought either insignificant or sad.

Let me give you a few examples of happy moments we have shared in the past few days. As we walked out of the bedroom the other day, she noticed a picture of our daughter, Jesse, in her wedding dress. It sits on the dresser, and Kate frequently stops to look at it. During the past two or three years, I don’t ever recall her recognizing that it is Jesse, but that doesn’t stop her from appreciating it. When I told her it was her daughter, she was moved to tears. She commented on the smile and her eyes, something that draws her attention in all photos. She asked her name. After I told her, she wanted to know more.

We spent at least five minutes or more looking at the picture. Then I told her we had a picture of Jesse’s twin boys in the family room and motioned her to follow me. This is another of her favorite pictures. She was thrilled to see it. She wanted to know their names. She got the impression they were her children. I told her they were Jesse’s boys. Then she wanted to know about their father. It wasn’t long before I was giving her far more information than she could digest. We went away without her ever having the understanding she wanted, but she had enjoyed herself. And I loved showing her the pictures. We do this regularly now. It’s not something we did much before, but it means much more to her now. I get a special kick out of her interpretation of the personal qualities of Jesse and the boys.

As we walked through the family room, she was captivated by the beauty of the flowering plants on the patio and the trees behind our property. She said hello to the ceramic cat that sits on the floor before we enter the kitchen. She looked at the photos of our son and her father that are also part of her daily ritual. This is always a good way to start the day.

During dinner, she said she wanted to tell me something. She said, “I know how much you do for me, and I want to thank you.” This began a series of comments that continued when we got in the car after dinner. She conveyed that she couldn’t live without me. She said some nice things about me to our server. As we left the restaurant, she said, “I wanted to tell you something else. I don’t know where all this is going. I wonder if we should get married.” I said, “I would love to marry you.” She said, “You would? That makes me happy.” I walked around my side of the car. We didn’t say anything more about marriage, but we talked about our relationship all the way home.

These are just a few of the many experiences we have on a daily basis. I would been sad if they had occurred eight years ago, but I have always wanted her to be happy. That is especially true now, and she is almost always happy. What I didn’t know then that I know now is that happiness is possible even after memory disappears, and I don’t have to look far to find things that make her happy.

I wish Kate had all of her rational abilities back – her memory for people, places, events and how to accomplish the many daily tasks of living. That’s not going to happen. From that standpoint, life is not going well for us now. On the other hand, being happy is of primary importance for both of us, so Kate and I would say that our glasses are still quite full.

Early Morning Conversation

Kate wanted to go to the bathroom just before 6:00 this morning. As I took her back to bed, she said, “You’re a nice guy. What’s your name?” I said, “Richard.” I helped her in the bed. She said, “I want to thank you. You’re a really nice guy.” I said, “That’s because you’re a really nice gal. I love you.” She said, “I love you too. We’re a good ‘two.’ (I think she meant team. That is something we often say.) <pause> What’s your name?” I said, “Richard.” She said, “What’s my name?”

No wonder I want to do the best I can for her. We love each other, and she needs me.

Yesterday was a good day.

After the challenges of the past week, I’m glad to report that Kate didn’t have any signs of anxiety yesterday. She wanted to sleep longer when I got her up but was cooperative. She was happy to see the sitter and didn’t give any indication that she was sorry for me to leave. She also got along well without me while I was away.

The only problem of the day involved her iPad. That is one I don’t think I will solve. This is a direct result of the progression of her Alzheimer’s. I just hope she will be able to continue for a little longer.

Unpredictability

Yesterday started out early – about 8:30. What was even better is that Kate was cheerful and showed no signs of anxiety. She was quite confused and was especially dependent on me to tell her exactly what to do when she went to the bathroom and then dressed.

Because she was ready so early, we went to Panera for her muffin rather than going directly to lunch. We were there shortly after 9:00 and stayed for an hour before returning home. She was quite tired and immediately lay down on the sofa. It wasn’t long before she was asleep. (I wasn’t surprised. The night before she woke up around 2:00. She was confused about where she was. We talked for almost an hour as I tried to tell her about us and our children. She was awake for a while around 4:00 as well. When I got up at 6:30, she wanted to go to the bathroom. Then she went back to bed until 8:30 when she got up for good.)

About 11:15, she opened her eyes. I thought that was a good sign that she might be ready for lunch. In some ways it was. She let me help her into a sitting position right after I mentioned lunch. Very quickly I realized that she didn’t seem fully awake. She was in more of a fog than she is most mornings. She said, “I don’t know what’s wrong with me.” After she was on her feet, she asked if she could stay at home. I told her I thought she just needed a little time to wake up and might feel better if we went ahead to lunch. She didn’t protest. After we were in the car, she asked again if she could stay home. I reassured her she would feel better when we got to the restaurant.

When we walked in the restaurant, the server had just put our drinks on the table. She walked to us and gave us a hug. As she and Kate broke their embrace, I said, “I think she really appreciates that hug today.” That led the server to give her another hug. This time when they released the hug, Kate started to cry. It was over quickly, but it was a good indication of her emotions for the next couple of hours. Near the end of lunch, she reached out her hand to me and asked me to hold it. I said, “Sometimes it’s just nice to touch someone you know who loves you.” She had tears in her eyes and nodded.

On the way home, she started to whimper and said, “I don’t know why I am crying. I don’t feel sad.” I suggested that sometimes either happy things or sad things can prompt cause us to be teary. I also told her that at our age we begin to recognize that we are much nearer the end of life, and we realize how . . . I hesitated a moment. She said, “How precious?” and I finished the sentence “our time is.”

I didn’t say what else I was thinking. She may feel happy, but I see signs of sadness. I try not to read too much into this, but I know she recognizes that she has problems that are well beyond what is normal. I experience sadness myself when I see her decline. I see my losing a little bit more of her each day. During her attacks of the past week, she has looked like someone in her last days on hospice.

She was very tired after we got home and wanted to rest. She rested the balance of the afternoon. She may have slept a little, but most of the time she was awake with her eyes closed. I suggested we leave for dinner. She asked where we were going. I told her, and she said, “I don’t have any money.” I told her that was no problem. I would pay for it. She said, “Well, I’ll pay you back.” At the time, I thought she must remember that I am her husband, but I didn’t say anything to be sure.

Before leaving the house, she mentioned another two or three times that she didn’t have any money. Each time I assured her that was no problem, but she wanted me to know that she would pay me back. I finally said, “You don’t have to pay me back. We are married. The money belongs to both of us.” She gave me a mildly defiant look and shook her that meant “We are not married.” I didn’t pursue it anymore.

After we arrived at the restaurant, she thanked me for helping her from the car and seating her. I told her I liked caring for her and mentioned that we had been together a long time. She asked how long. That led me into telling her the story of our meeting, our courtship, marriage, and having children. As I did this, she began to recognize me as her husband. She didn’t make any specific reference to things she could recall, but she asked me questions and reacted positively to my answers. She didn’t question anything I said.

I thought that would have cleared things up for the remainder of the day, but I was wrong. She was tired when we got home and wanted to rest again. We decided to go to the bedroom. She wanted to undress, so I took this as a good opportunity to get her ready for bed.

After brushing her teeth, she struggled for more than an hour over what she thought were bugs that get on her body and in-between her teeth. She worked to brush them off and to clean them from her teeth. She kept talking about how smart they are and that they know when you are looking at them. She asked me to look over her body and see if I could find them. I didn’t see anything. She had gotten wet while brushing her teeth and tried to dry herself off. She felt she wasn’t succeeding and was concerned that the bugs (she never referred to them as bugs) liked wet areas. She wanted me to help her get dry. I tried with a towel. Then I got the hair dryer. She felt dry, but she was still concerned about “them.”

All the time this was going on she periodically thanked me for being patient. She actually called me by name several times. At one point, I got the floss and tried to make sure there was nothing between her teeth. I never found anything. Finally, I think she must have gotten tired and quit. She said she wanted something to “read.” I gave her a photo book and her iPad. She chose the iPad, but she never opened it. She continued to pick at her teeth and her fingernails in an effort to get rid of the bugs. Once asleep, she slept until I was getting up at 5:45 this morning. She wanted to go to the bathroom.

She was very confused and frightened. She wanted to know where she was and who I was. I gave her my name and told her she was going to be all right, that I would help her with anything she needed. When I got her back to bed, she was still uneasy. I asked if she would like me to get back in bed with her. She did. I put on some soothing music. We talked a little while and I held her in my arms. Within thirty minutes she was calm. I asked if she was all right. She said she was. I told her I was going to get up unless she needed me. She said that would be fine. She is sleeping now, but I don’t know what lies ahead when she wakes up.

Another, But Milder, Morning Experience

It was a week ago yesterday that Kate experienced an intense and long-lasting (an hour) attack of anxiety. She had milder experiences four other mornings during the week as well as Friday afternoon’s experience while the sitter was here. That brings us to yesterday.

I was just finishing up a blog post when I noticed that Kate might be getting up. I went to the bedroom and found that she was having another attack. This time it seems to have arisen from either a dream or delusion. She apparently thought someone was in the house. She asked if they were gone. Rather than correcting her, I decided to go along, and I told her they had left. The problem with these fibs is that they often lead to further creative responses. In this case, she asked what they had said as they left. I told her they just said goodbye. Then she asked who they were. I said, “I don’t know, but they are gone now. Nobody is here but the two of us.” She was relieved, but I was concerned that she might still be a bit uneasy. I asked if she wanted me to sit with her in the bedroom. She did.

I remained with her for another two hours. She slept well and got up cheerfully for lunch. We didn’t have any other problems the remainder of the day.

Trying to Understand Kate’s Expressions of Her Feelings

Kate had another anxiety attack yesterday. This time it occurred in connection with a different kind of feeling. She wasn’t frightened by not having any memory. She was worried about being separated from me while the sitter was here. Here is the way the day unfolded.

We had a good morning. Unlike five other days in the past week, Kate showed no signs of anxiety at all. She wasn’t eager to get up for lunch, but she did so without any resistance. She was very comfortable with me. I like to think that she knew my name and relationship, but she didn’t say anything specific to confirm my suspicion. We had a nice lunch and were able to get back home in plenty of time to meet our sitter with ten minutes to spare. As I left, I told her I was going to the Y. She didn’t express any reservations about my leaving. She was tired and was resting on the sofa in the family room.

When I returned home almost four hours later, I encountered a very different situation. I heard Mary say, “There he is.” Kate said, “Where?” Then I walked into the room. Kate was seated on the sofa. She had a very worried look on her face. Mary said, “She’s been stressed.” When Kate saw me, she gave a big sigh of relief. I walked over to her. Even though she was relieved to see me, she remained upset. She said, “Are you my one?” She’s never referred to me that way, but I assumed that the word “husband” or “friend” wouldn’t come to her. I said, “I am your one.” She said, “I didn’t know where you were? I was worried.” She was more emotional than she had been when she experienced her attacks earlier in the week. I sat down beside her and tried to console her. She was appreciative, but it took her a long time to calm down. In fact, she repeatedly said, “I couldn’t imagine where you were. I knew you wouldn’t leave me.” It was thirty minutes later before she was calm again. I was surprised that she could retain a memory of her feelings for such a long time.

The rest of the evening was uneventful. As I have reflected on a number of recent experiences, I see a common thread. Her intuitive side is more “alive” now than in the past. Her feelings don’t seem to be different in kind than they were in the past, just more intense. I see that in her appreciation of music and beauty. It is very evident in her reaction to sudden noises, especially those that occur when we are in restaurants. The screams of babies and the noises of dishes as they are removed from tables by the wait staff cause her to make louder audible responses than ever before. She complains about the brightness of the sun when we walk from the parking lot into a restaurant and back again. She is bothered more than usual by the heat anytime she is outside. She is irritated by waiting. That happens at restaurants and also at the doctor’s office the other day. At several of our recent music nights at Casa Bella, she has been uneasy when seated at a table with more people than usual. She is also more easily irritated by things I say or do. She is very sensitive.

I am now connecting her anxiety attacks of this week as part of the same pattern. The loss of her rational abilities leaves her with only her feelings. While that is what provides her with a great deal of pleasure, it also brings with it a greater amount of pain than it would have in the past.

This is just one more thing that I didn’t fully anticipate. I have always tried to keep her safe and happy. This change is one that requires me to be more attentive to those things that are uncomfortable for her and minimize them as much as I can. I definitely need to work with her sitters to enlist their help when I am away from the house.

Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

The Fading Allure of the iPad

I made the following entry seven years ago on August 18, 2012.

Thursday afternoon I bought Kate an iPad since her computer is in the shop again, and it seems that her computer is really a lifeline for her. When she is not working on a particular task like photo albums, she likes to play free cell. She also likes to get her email. I keep thinking that an iPad will be easier for her to use since she likes to use the computer in bed which can cause some problems with the connection to the power cord. 

Until I checked my old journal entries this morning, I hadn’t realized that Kate had been using her iPad for so long. At the time I got it, her primary “self-initiated” sources of pleasure were working in the yard (as much as six hours a day) and working on her computer. It’s been five or six years since she gave up the computer. It had become too difficult for her to operate. For a while the iPad was a mere adjunct to her yardwork. It’s been almost three years since she gave that up. That wasn’t because it was too hard. It related to the fact that she had pruned all the shrubs so severely that there was little for her to do. That was the major part of her yardwork although I have recently discovered that she must have been weeding as well. I say that because weeds had never been a big problem until the past two years. She obviously had been keeping them at bay.

When she stopped working in the yard, she was left with the iPad as her only source of amusement. The only thing she uses it for is to work jigsaw puzzles. She has used it morning, noon, and night. I haven’t kept track of the time, but I know that sometimes she must have spent as much as eight hours a day working puzzles.

I charge the iPad every day for her, but it is only in the past week or ten days that I have been especially attentive to the battery life left when I start the charge. My guess is that the average battery life has been somewhere between 25% and 45%. Sometimes it has been totally exhausted. Recently, the figures have been 89%, 88%, 45%, 91%, 75%, 45%, 92%, and 65%. That is a clear indication that she is using the iPad less now.

There are two primary reasons for the change. The first is that she is having increasing difficulty operating the program. The most common problem is that she gets into the store to buy more puzzles when she completes a puzzle. Just this morning, I taped a piece of paper over the upper right hand corner of the display. That is where the icon for the store appears. Like so many things, that could create another problem, but it should be one for me and not her. On other screens there is an “X” icon to exit that page and go back. I don’t believe she normally gets to one of those pages. If I can address that problem, it should make Kate’s life and mine a lot simpler.

There are other problems that I can’t prevent as easily. One of those is forgetting what to do with the scattered pieces. Thus far when this happens, I have been able take care of it by telling her just to put the pieces together to form a complete picture. Another involves her eyesight. She can’t see the lines of the frame against which the edge pieces should be placed. She seems to get there by getting near the line. When she is close enough, the piece will lock in place and can’t be moved. The other issue is that she is unable to associate similar colors or shapes to figure out where a given piece might go. She just seems to keep trying until she gets it right. Similarly, she can’t distinguish between the background color and design to identify places a puzzle should go. I have worked with her enough on this issue to conclude that is impossible for her to learn because of her poor vision.

Last night was particularly frustrating for both of us. I am surprised she persisted as long as she did. In fact, she only stopped working her puzzles because I suggested that she might be getting tired, and it was time to get ready for bed. Prior to that, she had worked on her iPad more than an hour. I was watching (trying to watch) the evening news. Throughout that time, I got up and down from my chair every few minutes to address a problem.

As you would expect, I am concerned about her giving up the iPad. That would create quite a void in her life. It would also add greater responsibility for me to keep her entertained. She does enjoy her family photo books, but they provide a different experience. They are not something that holds her attention as long as jigsaw puzzles. The puzzles also have the advantage of being more interactive. They require her to think more. While I can’t know for sure, I have an idea that she derives some sense of satisfaction from completing them. In addition, she likes the beauty of the puzzle pictures themselves.

One thing I know is that I won’t be able to control much of what happens. It will be helpful if my taping over the store icon works, but the other problems are more a function of the disease itself. I’ll just have to wait and see what happens.

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.