April, 2018 | - Part 3

April 9, 2018April 10, 2018

Kate’s Fourth Trip to Panera Today

After our two back-to-back trips to Panera this morning, Kate and the sitter went again this afternoon. Kate was resting on the sofa in the family room when I got home to relieve the sitter. Her behavior after the sitter left makes me think she may have been either tired or bored. Typically, when I return home, she gets her iPad and is ready to go to either Panera or Barnes & Noble. She didn’t do that today. She continued resting.

I decided to look over the tax returns I had picked up from the accountant after leaving the Y. I went to the back of the house for something and stopped at the sofa where she was lying. She asked what she could do. I mentioned several possibilities, one of which was Panera. She jumped on that. She said, “I just want to get out of the house.” She put her coat on and walked into the kitchen where I was putting my laptop in its case to leave. Apparently, she had forgotten about Panera. She asked again, “What can I do?” I told her I was just getting ready to take her to Panera. Then she asked, “Are you going to stay with me?” I said, “Of course, I will be with you.” She seemed relieved. This is another of those times when I have the feeling that she may not be enthusiastic about the sitter. I’m not sure this is true because of the way she greets the sitter when she arrives. Kate seems very comfortable and at ease with her. It may be that she thought that I might be leaving her alone.

We’ve been here over an hour now and will leave shortly for our Monday night Mexican meal at Chalupas. When we left home, she seemed a little down, not as cheerful as she was this morning. Perhaps that was because she had been resting a while. Now she is perfectly fine.

A moment ago, she asked for my help getting back to the right place for her jigsaw puzzles. She occasionally hits a wrong button that takes her to the store and doesn’t know how to get back. That had already happened a couple of times since we arrived. This time she said something that warms a caregiver’s heart. She thanked me for helping her and said, “You know what I like about you? You don’t treat me like I’m stupid. You just show me again how to do it.” I am not only touched by her sentiment. I am also struck by the fact that she realizes that she is asking me over and over to do the same thing. Her expression of appreciation makes it much easier to keep helping her. I know, of course, that she is not remembering other occasions when I may demonstrate less patience than I did today. Nonetheless, this is another of many reasons I believe Kate and I have been very fortunate living with Alzheimer’s. I know many couples are not so lucky.

April 9, 2018April 9, 2018

Living with Alzheimer’s often involves a bit of “Recalculating.”

Years ago when GPS devices were first on the market, I bought one for my car. I found it can be quite valuable, but sometimes I would take a wrong turn. When I did, the woman’s voice would say, “Off route. Recalculating.” She was determined and wouldn’t stop repeating herself until I followed her instructions.

I’ve always found that a metaphor for life. Everyone has had the experience of heading in one direction (a career goal, a financial goal, personal goals, big goals and small goals) when something happens, and find himself “off route.” Then it is time to recalculate, or, as some would say, “It’s time for Plan B.”

That is a message with which every caregiver for a loved one with Alzheimer’s can identify. It might be especially so for someone like me who is such a creature of habit. We are always encountering surprises and recalculating. We learn to be flexible or simply suffer. I like to choose flexibility. Let me give you several little examples from yesterday and this morning.

For the past two years, Kate and I have eaten almost every Sunday meal at Altruda’s, a local Italian restaurant. We split one of their chicken entrees each week. They have four that we choose from and rotate from week to week. We never have dessert although we both love them. Over the past couple of weeks, I have eaten a little more than I normally do and picked up a couple of pounds, so I decided to watch more carefully what and how much I eat. The server knows us well, specifically that we never get dessert, but yesterday she asked if we wanted one. I promptly told her no. When I did, Kate said, “Well, I do.” We asked what they have. The server showed us the menu but told us that they had a special dessert that was not on the menu – banana pudding cake. It sounded very rich, but I told her to bring us one. It was a bigger piece than I expected. In addition, it had a very thick, calorie laden icing, banana pudding between two of the layers, and icing on top of the bottom layer. So much for my watching what I eat. As I think about the future, I don’t want to look back and wish that I had not worried so much about my weight and put the emphasis on enjoying the experience with Kate. I believe I made the right decision.

Before going to bed last night, I picked up two glasses in the family room, took them to the kitchen, and put them in the dish washer. Last night I had put Kates meds in a small glass and water in another larger one. I noticed that all of the pills were gone from the small glass, but there was a milky colored liquid in the bottom of the other glass. It was obvious that she had dropped some of her pills in the glass of water. A little later, I gave her a Tylenol for some pain in her knee. I put it in a small cup and gave her a larger glass with water. She started to drop the Tylenol in the water. I decided giving her two glasses was confusing her. I won’t do that again. I had only done it because she has been dropping some of her pills and thought putting them in a small glass would prevent that. Solving one problem often introduces another.

Kate has surprised me twice this morning. I didn’t realize it, but she had gotten up while I was taking my morning walk. (I suspect that one of the pills that had dissolved in her glass last night was her Trazadone. That makes her sleep a little longer.) I walked into the kitchen and booted up my computer to check email, Twitter, and Facebook, and to write the story above. Before I got settled, Kate walked into the kitchen dressed and ready for Panera. I told her I would need to change out of my walking clothes and get her morning meds, and we could go.

That’s what we did. We arrived somewhat earlier than usual. After an hour, she was tired and wanted to go home. When we got inside, she went to the bathroom. In the meantime, I started to boot up my computer and turn on some music thinking we might go the the family room and enjoy a quiet morning. Remembering that she was tired, I went back to the bedroom to see if she was in bed. She was looking for her iPad, and said, “What can I do?” I asked her what she would like to do. She thought a moment and said, “Panera.” We had been home less than ten minutes. So here we are again. She is eating a sandwich. We’ll leave in another twenty minutes so that I can get ready for Rotary and the Y this afternoon.

Kate is especially cheerful this morning. It’s been a good morning. Recalculating has worked.

April 8, 2018

Life can be so confusing.

I often try to imagine what a day like today must be like for Kate. I know she can’t remember what city she is in, and I mean right here at home in Knoxville. She doesn’t know what restaurant we are in or what she eats even though I usually order the same thing for her. When we are headed someplace in the car, she never knows where we are going even though I have told her. I do know that she is often curious about where we are because she asks, “Where are we?” When I tell her something, she sometimes says, “I’ve already forgotten.”

Today was a typical one until 2:00. Kate woke up a little earlier, and we arrived at Panera shortly after 9:30. She was feeling a little tired, so we were back home at 10:45. She went to our bedroom to rest. I don’t think she fell asleep but she was in bed until I got her up for lunch shortly after noon. Then we were off to lunch.

We were back home at 2:00. I told her we were going to a visitation for a friend and would need to change our clothes before leaving. She couldn’t remember who had died even though he was the spouse of someone with whom we have had a relationship since I was on the UT faculty in 1971. I asked if she would like me to pick out something for her to wear. She said that she would appreciate that. I got her a pair of pants and a top with an attractive cardigan sweater to wear over it. I brought them to her and laid them out on our bed. I went to the bathroom to brush my teeth. When I came out, she had thrown the pants and sweater on her chair. I found the top on the floor. I said, “You didn’t put on your clothes.” She said, “Where are we going?” I told her again and showed her the clothes she was to wear. I went to the closet to get something for myself. When I came out, she was about to put on her cardigan sweater (no buttons) without her top. I told her to put on her top before putting on the sweater. She looked confused. Then I told her that first she should take off the top and pants she was wearing. When I said that, she congratulated me by saying, “Now that was clear.” That was all it took. She got dressed, and we left. I think I should say now that I was very cool during this process. I didn’t want to prompt a panic attack. I do everything I can to avoid those.

In the car, she asked me where we were going. It was then that I told her that we were going to a memorial service for someone I know from the Y and then we would go to the visitation for our mutual friend. I knew when I said it that was too much for her to grasp though I don’t think I could have prevented it. As it turned out, I didn’t see anyone that I know at the service. Of course, Kate didn’t either. She was incredibly patient throughout.

After the service, we headed to the visitation. Several times on the way over, she asked questions about who had died and the person’s connection to us. When I mentioned our mutual friend who had also been a professional friend with the school district, Kate couldn’t remember her. When we arrived at the funeral home, she asked if it were a church. She asked the same thing inside and as we got to the car afterward. She also asked who had died. The whole afternoon must have been a very confusing one for her. I really felt sorry for her, but she handled herself beautifully. I was the only one who knew just how confused she was.

Once inside, she told me she remembered being there before. She pointed to specific parts of the hallway that she recalled. As you might have guessed, we had never been to this funeral home. It is a fairly new one.

We waited in line for about twenty minutes before seeing our friend whose husband had died. Kate asked if she could walk around a room on the other side of the hall where we were in line. I told her she could and pointed to the chapel that was adjacent to the room she wanted to see. I noticed that she stepped into the chapel and looked around before returning to the line. As we were preparing to leave, we walked by the room, and I pointed to the chapel again. She was completely surprised and wanted to look at it again.

We spoke with our friend in the receiving line and then moved to the end of the room where they had set up a television with a slide show of pictures of our friend’s husband. While I was chatting with a woman that had been standing in line with us, Kate went to an adjoining room where they had some light refreshments and a display of various pictures and mementos of the deceased. When I got to the room, she said she wanted to show me a picture of someone who looked like her mother. She couldn’t remember where she had seen it, but I saw a picture that included someone I thought had to the one she was talking about. I showed it to her, and she confirmed it. Shortly afterward as we were nearing the exit of the funeral home, we got engaged in a conversation with the owner. Kate said she wanted to see the picture of “her mother.” She couldn’t remember how to get there. I pointed in the direction of the end of the hallway and said, “Turn right and it’s the first door on your left.” I knew she would not be able to find it, but I also knew she couldn’t go much further and get lost. Then a friend who was there offered to take her. I accepted. In a few minutes, I met her in the room with the picture. I took her over to the picture. It became obvious that she thought it was her mother. She looked very teary. In situations like this, I always have to decide whether to let it go or to tell the truth. In this particular case, I told the truth. I said, “It looks a lot like your mother, but she’s not. She accepted that without a problem. I am glad. I would have felt very guilty if she had been hurt by the truth.

Then we walked toward the exit. As we did, I saw one of our friends’ son and pointed him out to Kate. When I mentioned our friend, she had forgotten that our friend, as the wife of the deceased, had been the first one in the receiving line. We had already seen and spoken with her, but she said, “I want to speak to her.” In this case, I didn’t tell her the truth. I just said, “Let’s go back to the room where she was before and see if you can speak to her.” By this time, most of the crowd had dispersed. We found her talking with a member of the music faculty. Our friend’s husband had served as department chair for almost 30 years. It turns out that the faculty member with whom she was talking was also our son’s piano teacher during his junior and senior years in high school. We had just seen him at dinner the night before. We walked over to join them. Kate greeted our friend as though it had been years since she had last seen her. Our friend is aware of Kate’s diagnosis, so I don’t think she thought much about it.

It has really been a good day. I am glad that we went to both the memorial service and the visitation. I wish that it had not been so confusing for Kate, but she seemed to get along pretty well even in her confusion. In addition, the pain in her knee has been worse today. She has walked even more slowly than usual and took a good bit of time getting into and out of the car as well as her chair in a restaurant. She hasn’t complained, only acknowledged the pain. She is remarkable.

April 7, 2018

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.

April 6, 2018April 7, 2018

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.

April 6, 2018

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.

April 5, 2018April 5, 2018

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.

April 4, 2018

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.

April 2, 2018

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.