Our Most Painful Moment

After coming home from dinner last night, Kate and I spent almost an hour in our family room relaxing. As usual, she worked on her iPad. I took the time to play a variety of music to see how she would react to a broader variety of music than I usually play for her. I (we) were having great success. That was followed by a very nice phone conversation with our son, Kevin. I think we may have talked almost an hour. When the call ended, Kate said, “Aren’t you proud of him?” I said, “Very proud.”

Shortly after Kevin’s call, we decided to get ready for bed. As I got up from my chair, Kate asked, “Where do we keep our clothes?” I said, “Let me show you.” This was the first time she has ever asked that, but it was consistent with other signs of confusion that I’ve observed recently. I took her back to the room where she keeps her clothes and helped her get a night gown. Then I went to take my shower, and she came back to the bedroom where she got into bed with her iPad.

Just before I got to get into bed, she looked up at me and asked, “What is your name?” She started to repeat it and then asked again. After I repeated my name, she said it. Then she asked, “What is my name?” I told her, and she said, “I don’t know why I am so confused.” This was the third time in the past few weeks that she has said this. The first time I told her she had Alzheimer’s. She told me she had forgotten she had it. The next time was during her first anxiety attack when she couldn’t remember who she is or where she was. That time I skirted the issue of Alzheimer’s and focused on calming her. At the time, I didn’t think there was anything to be gained by bringing up her diagnosis. I felt the immediate need was comfort.

Last night, I chose not to say anything about Alzheimer’s and seek to comfort her. This time, however, I was really torn between telling her about her diagnosis and not telling her. I said, “It is very common for us to have memory problems as we age. I think that is what you are experiencing. Whatever, I want you to know that I love you and will help you every step of the way.” She said, “That makes me feel better. I know I’ll get better.” I tried to avoid telling her she would get better and saying that whatever happened I would be with her. She said, “They say you shouldn’t rush it. If we just take it a little at a time.” We talked another 15-30 minutes. I lost track of the time. She repeatedly said she felt better knowing that I would help her. “I know it won’t happen right away. The doctor says we shouldn’t rush.”

Of all the things that might bother me in connection with caring for Kate, there is no question that seeing her suffer is far and away the most painful thing I can experience. I found this excruciating. Here she is 7 years and 8 months since her diagnosis and 12 years since we saw the first signs of her Alzheimer’s. She doesn’t know it is Alzheimer’s, but she truly knows that something is wrong with her, and it’s painful for her. I hate seeing this. Even recently, I had thought we might escape this part of the journey.

This experience and the earlier ones have caused me to reflect on the best way for me to handle them in the future. One thing is clear. I have been successful in addressing her immediate concern. In each case, I have been able to console her and make her feel better. I am still torn between being more honest with her about her Alzheimer’s and not. She is not the kind of person who wants to be deceived. She is the one who wanted to get the diagnosis in the first place. She even said that she was relieved with the doctor gave her the news because it helped her understand what was happening to her. Over the course of her illness, we have periodically talked about death. Both of us accept death as a part of life and don’t fear it or try to avoid conversations about it. In other words, she is not one to avoid the realities of life.

On the other hand, I believe in the importance of hope. I hear her, say things like, “I feel better now. I know you will help me. I’ll get my memory back. It just takes time.” Then I feel she has a hopeful approach that is healthy. I don’t want to risk destroying that sense of hope by telling her she has Alzheimer’s.

I’ve wrestled with this dilemma a good bit this morning. At this moment, I am leaning toward telling her but in a gentle way. In fact, I am thinking about utilizing what I have learned from Cornish’s book, The Dementia Handbook. Her main point is that we should accept the fact that the rational abilities of people with dementia no longer work the way they used to do. Instead, we should emphasize all of the things that they are able to do. Those are all things from which we derive direct pleasure through the experience of our senses. We have done just that throughout our journey, and I hope that we will continue for a good while longer.

Thus, I am thinking of telling Kate that her memory problem is a result of Alzheimer’s but that the good news is that we can continue to enjoy life the same way that we have done in the past – spending time with friends, attending musical events, theater and movies. In addition, I will be her helper when it comes to things that she needs to remember.

The counter argument is that we have been successful by emphasizing Kate’s intuitive abilities. It seems like trying to give a rational explanation runs counter to what she may need most, the knowledge that I will comfort her whatever happens.

I don’t intend to say anything until (unless) she has another episode like last night. Right now, she is up and seems not to have any memory of last night. I would have been very surprised if she had. Waiting to say anything will give me additional time to reflect on my decision. I don’t believe there is any way to determine in advance which is the right way to go. To tell or not to tell. That is the question.

Another Attack. Sundowners?

We had had a very pleasant evening after dinner last night. We were in the family room for over an hour listening to music. Naturally, Kate was working on her iPad. I was writing this morning’s post. About 8:30, I told her I was going to take my shower and that we might watch the last of Sound of Music when I got out. She liked the idea. When I got out of the shower, she came back to the bedroom. She didn’t seem to know what to do. I suggested that she get her night clothes on before watching the movie. She went to her room. When she returned, she had taken off her clothes but didn’t bring her night gown or robe with her. She seemed confused and wanted to take a shower. I helped by walking her to our bathroom, turning on the shower, and getting a couple of towels for her.

After her shower, she started to put on her night gown. I got her “night-time” underwear. I went back into the bathroom to get my nightly medications. When I returned, she hadn’t put on the underwear or her night gown, and I couldn’t find the underwear anywhere. I still haven’t. I just got another pair. She seemed anxious as she tried to dress for bed. That ultimately developed into something more emotional.

She wanted me to dry her back which I did. I asked if she wanted me to help her get dressed. She said she did. Then she said she couldn’t live without me. As she often does, she added, “No, I really mean it. I couldn’t live without you.” I don’t remember her exact words, but she said she couldn’t do anything right.

Although it crossed my mind, I didn’t say anything about her having Alzheimer’s. Instead, I spoke very calmly to her and told her I was going to help her. I put my arms around her and said, “Let’s just relax a minute. Take a slow, deep breath. You’re going to be fine.” After holding her for a few minutes, I asked if she would like to watch the Sound of Music. She said she did. First, I helped her with her night gown. Then I suggested we get into bed and watch the movie. She said she wanted to sit in her chair and work on her iPad. She said, “That relaxes me.”

Right after that, she picked up her iPad and got into bed and started to work on a puzzle while I started the movie. Very quickly she became engaged in the movie and put the iPad down on the bed. We both watched the remaining part of the movie, almost an hour. She relaxed and enjoyed it. The attack was over.

The first time this happened I wondered if this might not be an example of sundowners. Now I have a stronger suspicion that might be what is happening. That doesn’t really explain it. It just gives the behavior a name. If this becomes a habit, it will make a radical change in our evenings. That has been the best time of day for us for several years. I think it is because we have no further obligations after dinner than relaxing and getting ready for bed. We are both very much at ease during that time. That is a time I don’t want to surrender easily. If this occurs again, I plan to do the same as last night. I will respond very calmly and with compassion. That seemed to do the job last night. That along with music might carry us a long way.

It looks like another marker on our journey, and it involves clothes.

This past week Kate’s doctor had asked if she needed any help with dressing. Kate was offended by the suggestion, and I confirmed that she dresses herself. That was only a half-truth. She does need help in putting on the right clothes for a specific occasion as well as selecting clothes that are not too soiled. This morning we may have crossed another marker. She needed my help getting dressed.

We ate lunch at a nicer restaurant than those at which we usually eat. It is also Easter Sunday, so I knew people’s attire will be a little dressier than usual. With that in mind, I carefully chose everything for her and put the clothes on her bed. I even included the specific shoes along with appropriate hosiery.

When I was aware that she had gotten up, I went to her room where she was just getting out of the shower. I told her good morning, reminded her about our lunch plans, and said that I had put her clothes on the bed. I came back in about ten minutes and found that she had selected different clothes and was just about to put them on. I explained once again that she would need something a little dressier and that I had put out the clothes for her. At that time she was sitting in a chair that was only two or three feet from the end of the bed where I had put her clothes. She seemed a little irritated that I was helping. I told her I would get out of her way and let her dress.

In a few minutes, she came out ready to go, but she wasn’t wearing a single item I had picked out. She was also wearing black shoes that didn’t match. I said, “You didn’t put on the clothes I picked out.” Having said that, I quickly realized that wasn’t the best response I could have made. Fortunately, it didn’t seem to bother her. She just said, “Where are they?” I took her back to the bedroom. Her clothes were still there, but I noticed that the shoes were not. I showed her the clothes and started to look for the shoes. She asked me not to leave and said, “I don’t know what to do.” It was painful to see. She was so confused that she didn’t realize that the top I had given her and was in her hand was what she should put on. I couldn’t find her shoes or the hose I had gotten out for her.

After she was dressed, we went back to our bedroom where I had seen a pair of shoes she had worn yesterday. I knew they would be a good substitute for the ones I had originally picked out. She put on the shoes, and we were on our way.

The next issue we faced, and one that continues, is the pain in her knee. I have been unable to tell if the Tylenol has helped. One thing for sure is that she is indicating more pain today than I have observed in the past. Again, it makes me wonder if this isn’t something more than a case of arthritis.

Getting ready did not lead to a panic attack, but Kate was definitely experiencing more emotion as a result of learning she had put on the wrong clothes and having to change. I think that is what caused her to be so confused as she was getting dressed. It was about 20 minutes before we needed to leave for the restaurant, and I didn’t think it was worth it to drop by Panera. I suggested we go to the family room and relax a few minutes before leaving. I gave Kate her iPad and put on an album of soft cello adagios. That seemed to work. She was calm by the time we needed to leave.

When we got in the car, I played the second movement of the Brahms Violin Concerto in D. That is another piece of music I have found to be very relaxing. I have played this often when she has had an actual panic attack. We didn’t speak on the drive to the restaurant. When she got out of the car, I could tell the pain in her knee was bothering her. I parked in the closest place I could, and we walked very slowly to the restaurant.

Conversations

If you are caregiver for someone with dementia, you may relate to an experience Kate and I had last night. From the time of her diagnosis, we have spoken very little about her Alzheimer’s. Most of that came in the first year. Since that time most of what has been said is Kate’s saying that she thinks she is getting along pretty well and my agreeing.

In addition, conversation itself has been different. In the early years, we took time for conversation over many other things. We started regularly sitting down and talking on the patio or in our family room over a glass of wine. The conversations themselves often gravitated to the many memories of our lives together. Somewhere along the way we talked specifically about how fortunate we have been.

Over time, Kate’s memory has waned. That makes conversation for her more difficult. Most of our time together is spent in silence. I have to say this has been something of a challenge for me. I grew up with a mother and father who talked continuously. I am a big talker myself. It actually feels awkward for me to sit across the table from her at a restaurant in silence. Kate is gifted when it comes to ordinary social conversation but is not as driven to talk as I am. During our marriage, I have learned to appreciate her need for private time. Thus, I haven’t been surprised that with her Alzheimer’s, she often tells me not to talk or to “tell me about it tomorrow.” That is my intro to last night.

After we returned home from dinner, Kate dressed for bed and worked puzzles on her iPad. I turned on the TV to one of the football games. About an hour later, Kate said she was going to call it a night. She closed her iPad and went to the bathroom. In a few minutes, I heard her saying, “Oh . . . oh . . . oh . . .” I have never understood this, but it is something she says periodically. When I ask, as I did again last night, she says that nothing is wrong.

As she left the bathroom, she stopped in front of me and told me she loved me and how much she appreciated everything I do for her. Then she got into bed. As she lay there, I could hear her whimpering. I went to her and sat by her on the edge of the bed. I asked her if she were sure she was all right. Again, she said she was fine. I left her a moment and went to the bathroom where I noticed that she had hung her underwear on a towel to dry. I assumed she had had an accident. I went back to her and tried to comfort her. She couldn’t tell me anything except to say she had been reminiscing. I turned off the TV, turned out the lights, and got into bed with her. For the next 30-45 minutes, we talked about our lives together, our honeymoon, the places we had lived, our children and grandchildren, and our travels. It was a very special moment. I hadn’t heard her talk that much in a very long time. As we talked, she calmed down, and we fell asleep.

I’ll never be sure how to explain what happened to bring this on. I suspect, however, it is one of those times when she realizes how much she is declining and losing control. My own feelings were very mixed. I loved being able to have such an easy flowing conversation with her. On the other hand, I can’t help feeling sad to think of her recognition of her current state.

Today should be another bright spot in our Christmas season. We are driving to Asheville where we are going to see the musical Annie. We’ll have a couple of nice meals and enjoy another stay at the Haywood Park Hotel.

A First

Kate and I were to attend a program of our music club this evening. Although its members are involved in a wide variety of musical genres, there is a heavy orientation toward classical music that is reflected in our programs. Kate, whose taste in music is more in the direction of popular music and popular classics has never been as taken with the club as I have. For that reason, she hasn’t attended a meeting in over a year. Last year, I left her at home by herself. I haven’t felt comfortable doing that this year. Since the Christmas program is always a choral group that sings a variety of Christmas music much of which is well-known, I thought I might take her to this one. I am the treasurer, and I needed to deliver a couple of checks as well.

Suspecting that Kate would not be excited about going with me, I decided to test the water by telling her of the meeting several times over the past three days. Each time she had forgotten, and each time she groaned. Then I told her that I thought she would like the program and that we would not stay long and come home right after the program ended instead of staying for the reception afterwards. Each time she agreed to go.

Late this afternoon, I mentioned it twice, once at dinner and once again after we got home. Once again she was not happy about it but said she would go. I picked out her clothes and laid them out on her bed. She was happy about that. I left her to get dressed while I wrote out a couple of checks. About ten minutes later, she came out in a night gown. I said, “You’re in your night gown?” She looked at me with great surprise. I reminded her of the meeting. She had completely forgotten. I brought her clothes back to her. Then she said she didn’t want to go and wanted me to go without her. I told her I didn’t feel comfortable leaving her alone. I probably could have coaxed her into going. I didn’t want to do that. I told her we would stay home but we would have to take my checks to someone else to deliver to the correct parties, and that is what we did.

On a number of occasions Kate has not wanted to go somewhere, and I have made the same decision. The difference tonight was that I had a responsibility to deliver the checks and had told several people that we would be there. In addition, we are supposed to let the secretary know if we cannot attend. The assumption is that the RSVP would come earlier than the time we now had before the meeting.

There is really no great loss in our not having gone, but it was a program I believe Kate would have enjoyed. I know that I would have. I also felt that this was likely to be the last time we attended as a couple.

It is also an indicator of Kate’s continuing downward spiral. In the future, I will need to arrange for a sitter the evenings the club meets. That is only four times a year, only two of which remain in this year. At times like these, I try to be thankful for how slowly she has progressed to this point. I never thought when she was diagnosed seven years ago that I would even have considered her going as a possibility. I am both sad and grateful.

More Frustration, Boredom, and Discouragement

Kate was up early again this morning and ready for Panera. She is not in a good mood. She is depressed. As usual, she won’t talk about it at all. She just shrugs her shoulders when I ask what is wrong, how I can help, etc. We spent an hour and a half at Panera before she wanted to come home. She is in bed resting. I am going to get her up in a few minutes to take her to lunch.

I have also bought tickets to a movie at 3:00 this afternoon. This is a movie she told me Friday she didn’t want to see. I am going to try it anyway as a diversion, a way to get her someplace other than home or Panera or one of our restaurants.

Coupled with her boredom this week has been more irritability than usual. In fact, I have observed what I take to be less humor in responding to me and a more genuine expression of irritation with me.

I can’t recall a week during which she has been this way before. I must admit to being discouraged this moment. I am hoping she bounces back soon but also worried that I am seeing signs of a further transition.

Frustration

We are sitting at our usual table at Panera. We arrived early today. Kate was up before I returned home from my walk at 8:00. She was not dressed for church. I reminded her this was church day. She gave me a dirty look and groaned. I hesitated a moment and started to encourage her. Then I decided not to push her. I know she often feels pushed. We decided to come over to Panera for her morning muffin.

She has been trying to work jigsaw puzzles on her iPad, something that has been one of only two things that occupy her time. She has occasionally been frustrated while working the puzzles. I don’t believe it is associated with any difficulty finding and placing the puzzle pieces themselves. Rather, it is that she occasionally hits a “button” that take her to a new screen, and she doesn’t know how to get back to her puzzle. In addition, there are times that the app itself offers an opportunity to do something else. She doesn’t know how to “cancel” and get back to her puzzle.

This morning has been especially frustrating for her. Over a 5-10 minute period, she repeatedly lost her puzzle. Each time I helped her get another one. She did not ask for my help. She simply put the iPad down on the table and, a couple of times, she closed the iPad as though she were ready to go home.

A number of things have happened this week that make me think that Kate is moving closer to another stage of this illness. She hasn’t been staying outside as long, and she hasn’t been working on her iPad as long before wanting to switch to something else. I dread the day that she loses interest in these two activities. They are her life right now and have been for several years.

I should say that last night she turned on her computer for a few minutes. I don’t know what she did, but it wasn’t long.

Boredom but Reluctance to do Some Things

Yesterday a representative of the Chautauqua Foundation, visited us in our home. We had recently made a financial contribution to the Foundation. He was calling on several families in the Carolinas who has made gifts for the renovation of the amphitheater. I had mentioned his coming to Kate several times, once a couple of weeks ago when he first contacted me by email and again the day of his visit. She told me I should meet with him by myself. I told her that he was coming to thank us and that it would be nice for her to be included in the visit. She reluctantly agreed. This is a good illustration of her not wanting to engage in a type of social interaction from which she could and does benefit.

When he arrived, she was quite cordial and engaged in conversation. There were times that I held back saying something because she wanted to talk. The important point is that she was enjoying herself. She got to talk about Chautauqua with someone who represents that institution. This was right up her alley. If I hadn’t pushed her into being a part of the visit, she would have missed a rewarding experience. Of course, I am sure that today she does not remember anything about it. From my standpoint I just like to see her days filled with as many moments of pleasure as possible. Sometimes I give in to her wishes. I just did that about an hour ago.

She had been resting since we returned from Panera earlier this morning. She told me she wanted to go outside. I told her that was fine. She asked if she could have a Dr. Pepper. I told her that she could do and have whatever she wanted. Then I told her I was thinking of our doing something different this afternoon. I told her we would go to lunch and then I thought we would go to the zoo to see the major updates that had made. She just shook her head “no.” I encouraged her and said that I would really like to go and would like her to go with me. She shook her head again. She seemed sufficiently resistant that I said, “That’s all right. I won’t make you go.” I gave her a hug, and she went outside where she has been for just over an hour.

For quite a long time I have tried to keep her involved in social activity. The one that works best is eating out. In that case, she is attracted by the need to eat. A different kind of example involves my volunteering to the Visitation Committee at church. I did this about two years ago. It turns out, however, that she doesn’t care for this particular social activity. Now I am going by myself
I have also explored the possibility of our volunteering to do something involving Children’s Hospital. I was thinking that she enjoys children so much that visiting with the children might be something she would accept. I have taken any action beyond initial exploration. I have been afraid that she would not want to carry through and that would be a problem for the hospital and the children. They need someone they can count on.

Crisis, Come and Gone, Only to Return Again?

Late yesterday after my entry indicating that Kate’s crisis was over, it appeared that everything was fine again. Then as we prepared to go to dinner, she asked was looking for shoes to wear. I told her I thought they were in our bedroom where she had been resting and then using her iPad. I went to the bedroom and brought them back. Before I left her in her bedroom, I heard her becoming frantic and starting to cry. By the time I returned with the shoes, she was in tears again. I put my arms around her. Through her tears she said, “I can’t find anything.” She continued to be distressed when we got in the car to go. I put on the second movement of Brahms’s Violin Concerto which is a soothing piece of music that I regularly play in the car to calm her. In a few minutes, she said, “I really could not live without you.”

When we got to the restaurant and sat down, I could see that she was depressed even though the tears had stopped. I reached across the table and grasped her hands in mind and said something I intended to be comforting. She said, “I am just a little low right now.” I, of course, was thinking this was an expression of her continued frustration over misplacing things. Then she said, “To say that about my mother.” Then I knew that she was thinking about believing that someone had said something about her mother. I started to say something. She stopped me and said, “And I know it’s not a dream.” That is something I have suggested following previous occurrences. Moments after this, she smiled and said, “I’m over it now.” Then she was fine for the balance of the meal and the evening.

What concerns me is the intensity of her frustration. If it is at this level now, it is bound to get worse before it gets better. She is really suffering pain even though I don’t think it weighs on her mind all the time. Since she can’t remember things from one minute to the next, she always has to face not being able to find something she wants or needs. I wish I could relieve her of the problem.

Boredom

After a couple of good days, Kate has fallen back into her slump. She has been spending almost all of her time on her iPad. I don’t think I have seen her on her computer for several days. When we have gone to Panera the past few times, she has not taken her computer, something that she has routinely done up until now. I may ask her about this. I suspect that she must have found that she is not able to work with it as well as she has done in the past. If she loses the ability to work on her photos, that is another low blow. I want to put together a photo album of our marriage and have asked her if she could help with that. She indicated that she would. I may suggest that we do a little of that this morning or afternoon. I am also going to call a couple in my Sunday school class and see if we can visit with them this afternoon. He is on dialysis and doesn’t get to visit us much. He has been with us only a couple of times in the past year.

’Kate’s mood affects me. When she is up, I am up. When she is down, I am down. I am going to have to work harder to occupy her in meaningful things. I have a list of things I am going to attempt. These include involvement with the Shepherd’s Center, a seniors educational program that meets at a Methodist not too far from us. I am also going to see if there are some volunteer activities that we might do together.