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Live Performances and Social Occasions

As noted in my previous post, we were at Casa Bella for Opera Thursday the other night. Once again, we had a great evening. The program and the singers were especially especially talented. For me, the most important thing is that Kate thoroughly enjoyed it. I haven’t seen any signs that her love for live performances has lessened in the least. On the contrary, it seems to be one of the highlights of her life.

It was a good social occasion as well. By now, our connections with others who are in attendance as well as the servers and, especially, the couple with whom we share a table each time make for a good evening. Kate is not talkative at occasions like this. I think it can be challenging for her because of the number of people who are talking. Sometimes it calls for a little patience as well as assertiveness. The other night, for the first time, she became frustrated and displayed it.

Like most of those in attendance, Kate and I arrive about an hour before the musical program begins. That gives us time to have our meal and enjoy greeting others as they arrive. One of the other guests came to our table to speak to the couple we sit with. We got into a conversation about someone else who has just had heart surgery. When he walked away, the man and woman with whom we sit continued to talk about the man who had had surgery. Kate couldn’t understand what we were talking about but must have recognized it was serious. She tried to get us to explain, but the man and the woman at our table were both talking simultaneously. It really was hard to focus on just one. Kate shouted, “What’s going on. I don’t know what you’re talking about.” With all the conversation going on at other tables, no one else is likely to have heard her, just the couple we sit with. They couldn’t have missed it.

This is only third time that I can recall her doing anything like this. The two other occasions were with good friends and occurred about two or three years ago. In each case, our friends thought her response was more shocking than I did. They were both correct that her behavior was out of character for her. I would say her response at Casa Bella was stronger than the other two times. In this case, I think it arose because of the level of frustration she experienced when she couldn’t understand what we were talking about. I’m sure she could tell it was something serious and may have felt shut out of the conversation. The good thing is that after her remark, she was just fine, and we continued to enjoy the evening as though nothing had happened. Like so many other things, it does make me wonder if I am going to see more of this kind of reaction in the future.

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Another Marker

Even prior to her diagnosis, Kate was geographically challenged. In the years since her diagnosis, she has wanted me to walk in front of her to lead the way to when we get out of the car to go to a restaurant or when we are in a place with which she is not familiar. This can be dangerous. A number of times she hasn’t seen me make a turn and continued walking straight ahead.  I have to keep looking behind me to see if she is still there. She often says, “I’ll follow you.” In fact, she did that as we left Casa Bella last night. That was no surprise. What would have been surprising is if she had remembered where we had parked.

The surprise came when we got home. When we walked into the laundry room from the garage, she said, “I’ll follow you.” That is the first time she has ever felt the need to say that in our own home. I suspect she didn’t immediately recognize that she was home. Once she was further inside, she knew where she was. Until now, she has seemed to be very sure of herself getting around the house. She seems not to have a problem when she gets up to go to the bathroom early in the morning before daylight. She always seems to know how to get from room to room around the house even though she has some difficulty remembering where things are in a given room. That involves a little searching. This experience may seem a little thing, but I see it as another marker on our journey.

I found this disturbing because it comes amidst other noticeable changes that have occurred in recent months, all in the first three months of the year. I recognize that we have been very lucky in terms of the gradual progression of Kate’s Alzheimer’s, but it is still jarring to think that we are approaching the next stage of the disease. It’s the one that everyone most wants to avoid. We all know that day is coming, but we like to believe it won’t be soon. Of course we don’t know when that will occur. I don’t know either, but I do know the symptoms I am observing are significantly different from those of the past. It makes me sad. Not only that, I feel a certain measure of anxiety. Intellectually, I know that we will continue to enjoy life and each other to the extent that we are able. From an emotional standpoint, I am a bit uneasy.

That might account for the fact that the past two nights I woke up between 2:00 and 4:00 and had trouble getting back to sleep. I am sure my experience last night is one with which many caregivers can identify. When I woke up, I immediately started thinking about my various responsibilities involving Kate. It occurred to me that I hadn’t charged her iPad after she went to bed. I got up and went over to her side of the bed to find it. With only the night light from our bathroom, it was difficult to see. I got my phone and turned on the flashlight. I didn’t see it beside the bed. Then I started looking on the floor around her chair and the night table. In the fall, I bought a new iPad for myself, I have been letting her use it when hers needs charging. I decided to give up the search. In the morning, she could use mine. While searching for the iPad, I saw the pants and the shoes she had worn to Casa Bella last night. I had also neglected to put them away before going to bed. I keep them in my closet so that she doesn’t get them for everyday wear. That’s how I try to insure that she always has something clean to wear for somewhat dressier occasions. Those things taken care of, I went back to bed.

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A Thought About Caregiving

I am reading an interesting book on caregiving, I’m Still Here by John Zeisel. His primary message is that even though someone has Alzheimer’s, they are still people with feelings and abilities. They just aren’t able to do all the same things in the same ways they have done in the past.

I like this perspective and have tried to follow it though not always successfully. The underlying assumption is that it is the caregiver’s responsibility to adapt to changes; the person with the disease can’t do it. This is not a new idea, but it is another reminder to those of us who have assumed this role. It can’t be said enough. I suspect many of the frustrations we experience might be reduced if we kept this in mind when we relate to our loved ones.

Occasionally, I have told a few people that a significant part of a caregiver’s time is spent trying to prevent or to solve problems. For creatures of habit like me, it can be a chalengel to continuously adapt in order to fulfill these responsibilities. We won’t always succeed, but we can keep trying. Years ago, I knew a counselor who worked with parents of children with behavior problems. One of the things he told parents is that they may do the wrong thing one time, but there is always a chance to do the right thing the next time. Caregivers also get multiple chances to do what works best. Most of us don’t come to this role with all the knowledge and skills to be effective, and we don’t develop them by simply receiving instructions. It takes practice. We have to develop patience with those for whom we care. Just as important, we need to be patient with ourselves.

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Her sleep pattern keeps changing

For years, Kate has had a pretty predictable pattern of sleep. At least that is true since she started taking Trazadone. That was shortly after her diagnosis just over seven years ago. She used to go to bed between 9:00 and 10:00. She would wake up around 7:00 or 8:00 and get some juice and yogurt. Then she returned to bed and worked jigsaw puzzles. She would get tired and fall asleep for a little while and get up for good between 8:30 and 9:30.

Early this year, she gave up the juice and yogurt routine as well as going back to bed. Her morning routine was rather stable until she got the flu. It wasn’t long after that when she had a lingering cold. I think that upset her sleep pattern. Since then, there have been several times when she has slept close to noon. I woke her up one day about 12:20.

Until this morning, I thought she might be working her way back to a regular pattern. I woke her at 12:25. I’m not entirely surprised. Last night she didn’t get into bed until after 10:00. Once she was in bed, she was talkative. She was talking about how fortunate we are. As she and I often do, she talked about our marriage, our children, grandchildren, and her extended family. I suspected she might sleep a little later today. I just didn’t anticipate how late.

That’s not an unfortunate thing for me. I got in my morning walk and took care of a variety household responsibilities that I have been putting off for a while. Being a creature of habit, I’m just thrown off a bit when I can’t be sure when she will be up. One of the ways I have adjusted is not to schedule anything during the morning. That works well. It certainly did this morning. I’m glad I didn’t have to rush her. Next week we are going to Memphis to spend a couple of days with our daughter and her family. I decided to make it a very leisurely trip by stopping overnight in Nashville. That afternoon we will visit Kate’s friend, Ellen, who is still in rehab after a bad fall. The next day we will have a leisurely drive to Memphis.

Some things are more of a challenge. Two weeks from today, I have a routine doctor’s appointment. I am scheduled for my labs the day before. Because I’m not supposed to eat breakfast before hand, I try to schedule the earliest appointment of the day. That’s not a time when I have a sitter, and I don’t want to get Kate up early enough for us to make an 8:00 appointment. I have scheduled this one for 10:30 and hope that I won’t have any problem getting Kate ready. If it is a normal day, that should be no problem. If it’s a day like today, I may have a challenge on my hands.

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Special Moments Brighten Our Lives

Although I try not to deny the trials that accompany living with Alzheimer’s, Kate and I are quick to acknowledge how fortunate we have been thus far. Her diagnosis came at a time when I was able to retire, neither of us has had any other significant health issues, we have traveled, and we have remained socially active. In addition, there are always unanticipated things that happen to brighten our lives. I’m thinking of one of those right now.

For many years, Kate’s brother, Ken, has put together hardbound albums of family photos. These include ones that focus on particular trips or events as well as an annual volume that summarizes the entire year. Recently, he told me he was making an album of photos for Kate celebrating the many special people and moments of their lives. It is a full 140 pages of memories. It begins with their births and goes up to the present. He intends to surprise Kate with her own copy when it is ready in the next few weeks.

A few days ago, he asked me to look over the album and make any edits or suggestions that might be appropriate. I was overwhelmed and touched by what he has done. Kate has always valued her family and often speaks of what it has meant to her. As her memories fade, this will be a treasure for her, especially as it is such a personal gift from her brother. I will no doubt say more after she receives it, but I have a warm feeling of gratitude that Ken is doing this for his big sister. Living with Alzheimer’s doesn’t mean an absence of special moments like this.

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We’re off to a good start today.

After a somewhat rocky day yesterday, I wondered what might be in store for today. Kate often takes a while to fully wake. Sometimes it just takes longer than others. Yesterday was one of those. Today she surprised me when she was ready for her muffin at Panera before I knew that she was up. In terms of my own preferences, she was up at an ideal time. It meant no rushing to get to Panera and then for her to have lunch before the sitter arrives at noon. I can’t stress enough how much better she and I feel when she can take her time getting ready.

It has been a relaxing morning for the two of us. I have taken care of some email communications with Kate’s brother, Ken, met with someone who has given me a quote on a new water heater, arranged a phone call appointment for tomorrow, updated my file on the sitters, and the other things that my friend, Tom Robinson, refers to as his “morninglies.”

Kate has almost finished her sandwich, something she doesn’t always do. I don’t think I have ever commented on the way she eats sandwiches. Most of the time, she doesn’t pick up her sandwich and take a bite. She takes on the top slice of the bread and picks out the various items between the slices. I see that today she didn’t eat any of the slices of tomatoes or the lettuce. She did eat the slice of cheese and the turkey. She also finished the two slices of bread but left all the crust. She doesn’t like anything “crusty.” Lately she has been taking most of the breading off her fried shrimp and the fried chicken she gets at one of the restaurants we visit regularly. She does not eat the bacon if it comes on a sandwich. I have learned to order most sandwiches without bacon or lettuce. We’re always adapting to change.

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We had a good finish to a somewhat rocky day.

Just before 6:00, Kate came into the family room where I was listening to music and making some notes for my blog. She was ready to eat. She was Back to normal. When I asked about her leg, she said that it still hurt but that it wasn’t bad. We were off to dinner.

In the car I turned on some music that I know she enjoys. We didn’t have far to go, but she really appreciated the music. She was in good spirits throughout the meal. As we came home, I played more music. When we arrived, she looked at me as if to say, “What now?” as she often does. I told her we could relax in the family room and I would play some music. She liked the idea, so we did.

We spent almost an hour and a half there. She and I both were enjoying the music. She began to reflect on her mother and said how happy she was that we had been able to keep her in our home the last 5 years of her life. That led to other things about her family, our marriage, and children. This occurs regularly, and I am happy to support the conversation. We are both very grateful for our parents, our children, and our lives together. We often reflect on the many things we have been able to do over the past 55 years. About 20 minutes before we went to the bedroom to get ready for the night, I played a few pieces of music that she likes a lot. She was moved by the music in a way that I have observed a few other times recently. She became very teary as the music played. I was touched as well. Music as been very important to me. I am so glad that she is able to be moved by it as well. What had been a more difficult than usual day for us ended up on a very high note. I am grateful.

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After Lunch

Once we were back at the house, I suggested we change clothes and relax a while. She told me she didn’t want to change. I told her that was fine. I got her a Tylenol to help the pain in her knee, and we sat in the family room. I started this post, and she worked on her iPad. We have been here a little more than an hour. She has been working on her iPad steadily and peacefully all this time. I thought all was well. Then she said, “I’m ready when you are.” I asked if she wanted to go to Barnes & Noble. She said, “I’m just tired of the same old thing.” We went to Barnes and Noble and were there about an hour before she was ready to leave. During the time we were there, she seemed fine.

On the way home, I stopped by Walgreens and bought a sleeve for her knee. I had no idea whether or not it would help, but I didn’t think the Tylenol had made a significant difference. I was ready to try anything. When we got home, I put it on for her. She immediately felt better. I should add that she hasn’t given it a real test so far. She has been sitting in bed with her leg stretched out straight. We’ll soon be off to dinner. That will give me a better idea of how well it works.

I just checked to see how Kate is doing and was pleased to see that her mood had changed completely.

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At Lunch Today

They were having an Easter buffet today. We walked slowly to the tables where the food was displayed. I just got salad with the intention of going back for my entrée. It looked like Kate was doing the same thing. She only had salad items on her plate. She had no greens, but did have some boiled shrimp, a large helping of mandarin oranges, some black olives, and another generous serving of shredded cheddar cheese. On the way to our table we passed the desserts. She got a cupcake and two slices of pound cake.

When I finished my salad, I went back for a serving of roast beef and salmon and brought some back to Kate as well. As I was serving myself, I saw a server we knew had known for a long time. She asked how we were doing, and I told her about Kate’s Alzheimer’s. She asked where we were seated and said she wanted to speak to her.Then she asked if Kate would know her. I told her I didn’t think so, but she responded well socially and would enjoy seeing her. Before I got back to the table, the server met me and said she had spoken with Kate and that she had responded as I as said she would.

When I reached the table, I gave her a slice of roast beef and a some salmon. She started to eat the salmon with her fork, but she ended up eating it with her hands. This is not a very unusual thing for her to do. She usually does it discretely and doesn’t pick up the food with her hands throughout a meal. I do, however, wonder what may be ahead in the future. If that becomes a typical way to eat, that could affect our dining out though I would think it depends on how noticeable it is.

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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.