| A real-time account of Dementia Caregiving

April 11, 2018

When you run into a problem, you use whatever skills you have to solve it.

Kate and I stopped for lunch before our visit with Ellen. Shortly before we left the restaurant, she went to the restroom. Knowing she wouldn’t remember where we were sitting, I kept watching for her to come out. As I might have expected, she took a wrong turn to get back to our table. I saw her approach the entrance to the kitchen and thought she was going to ask for help. I got up from our table and walked toward her. She was talking with one of the employees. Before I reached them, they had turned and started walking back to the restroom. Kate saw me and said she would be right back.

I returned to the table and waited. All the while, I was wondering what had happened in the ladies room. I thought perhaps something wasn’t working or that Kate might have broken something. In a few minutes, Kate and the employee walked over to me. Kate said, “She is going to tell you something that I want to remember.” The employee told me that Kate had seen a quote by Eleanor Roosevelt that said, “A woman is like a tea bag – you can’t tell how strong she is until you put her in hot water.” Kate just beamed and said, “Isn’t that a great quote. Now make sure you remember that.” Kate thanked the employee and asked her to say it one more time.

As we walked out I saw the employee and went over to thank her myself and let her know about Kate. She was a very compassionate woman and had already guessed. Kate walked over and gave her a hug. It was one of those moments that hit me once in a while. Tears instantly welled up in my eyes, and we said goodbye.

As we continued our drive to Ellen’s, I thought more about Kate’s predicament. She saw the quote and must have read it several times. She wanted to remember it, but finally had to recognize that she couldn’t. She knew she couldn’t take me into the ladies room to read it and remember it. What does one do when caught like this? If its really important, you have to ask for help. She did just that, and she hit the jackpot. She found a caring person who was not just willing to help but to do so in such a sensitive manner.

I am also reminded of John Zeisel’s book, I’m Still Here. He makes the point that although the person with dementia may lose some abilities, they retain others for a long time. Kate is well into her journey. It’s over seven years since the diagnosis. By my own judgment, she is well into Stage 6 of the seven-stage model. Nonetheless, she retains amazing skills in casual social interactions. She has amazing insights about me and many social situations. In addition, she works hard to solve problems that would not have been problems before Alzheimer’s, like putting clothes on. It’s a challenge to distinguish the front and back of most of the tops she wears. Often when I start to help her, she stops me. She wants to do it herself. The saddest thing of all is when she has to give in and ask me for help. I’m beginning to think more about Eleanor Roosevelt’s quote about women and tea bags. Kate is in “hot water,” and she’s showing just how strong she is.

April 11, 2018

Off on a Short Trip

We left this morning for a visit with our daughter and her family for a few days. I am glad that it comes right now as she is having more difficulty remembering their names. I know it won’t last, but I want her to remember them as long as possible.

I am making this a leisurely trip. We stopped after lunch for a visit with Kate’s good friend, Ellen, in Nashville. Today was her last day at the rehab center. Tomorrow she moves into a new assisted living facility. It was a very good visit. She has improved physically since our last visit a month ago. Her speech is still a problem. I don’t know how much of that is a direct result of her stroke and how much it is now the vascular dementia that is creating the problem. At any rate, it is quite difficult to understand her. Given our long-standing relationship, we will continue to visit her on a monthly basis for as long as we are able to do so. Ellen’s condition and Kate’s are the determining factors in that.

After leaving Ellen, we drove to a B&B outside of town where we are spending the night. We are the only guests tonight and have enjoyed our time with the inn keepers. We asked them to recommend a place for dinner and ending up asking them to join us.

The travel itself went well. I am glad that I have broken up the trip. Since we don’t talk much while we are driving and Kate doesn’t like to work on her iPad because of the occasional bumps in the road, I worry that she must be very bored. She doesn’t say or do anything that suggests that. I just know that under the same conditions, I would be bored.

April 10, 2018

Forgetting Names of Family

I’ve heard the expression “bitter sweet” most of my life, but it has become considerably more meaningful since Kate’s diagnosis. I could apply it to many of the things we experience every day. Take today, for example. On the way to lunch, I mentioned that tomorrow is our grandson Taylor’s birthday. She said, “And who are his parents?” I told her Rachel and Kevin. Then she asked, “And, they are?” I told her that Kevin is our son and Rachel is his wife. Then she asked me to tell her their last name.

At lunch I told her we are going to be with our Memphis grandsons on Thursday. She asked their names. She followed that with “Who are their parents?” I told her Jesse and Greg. A few minutes passed, and she asked, “What is your name?” I told her Richard. She asked, “What else?” I told her. Then she wanted to know if I had another name. I gave her my middle name. She said, “That’s a nice name.”

I should add that she has been in a cheerful mood since getting up this morning. She has teased me a bit and was a bit playful. For example, in the car she asked if she could do something, and I told her that would be fine. She responded with, “Thank you, Master.” I said, “You must think I try to control your life.” I said, “I don’t think I control your life.” She smiled and said, “You don’t, but you try.” She said this without any sense of irritation. She was saying what she believes, but doing so in a very kind way.

Kate has been very childlike in her questions about names. I suspect she has had more trouble with family names for longer than I have been aware. She was just guarded about acknowledging it. Now she asks me the names of people and places all the time and does so without any effort to disguise her memory problems. When she asks me to help her with names, I feel she has opened herself to me in a tender way. At these moments, I feel very close to her. There is a sweetness about this experience that is hard to describe.

At the same time, there is also something very sad watching her lose the connections between names and the people she loves so dearly. It is a bitter sweet experience.

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.