| A real-time account of Dementia Caregiving

April 18, 2018April 18, 2018

Another Marker. Something New on Forgetting.

Not long ago I wrote a post entitled “What does it mean to know someone?” I was trying to differentiate forgetting people’s names from remembering them (something about them, one’s connection to them, etc.). Those of us without dementia are familiar with this. Everyone has had the experience of forgetting the name of someone we “know.” When a person with dementia (PWD) does the same thing, there is a tendency to believe that means the PWD has totally forgotten the person. Often, however, it is just the name that has slipped, perhaps temporarily, from memory. Thus the PWD is able to interact quite naturally with that person in social encounters without the person’s even realizing her name was forgotten. Again, this is a common experience among those of us without dementia.

I have mentioned this with respect to Kate’s not remembering our children’s names. Much of the time she can’t remember their names, but she really remembers she has children and proudly talks about them. For that reason, I was surprised by something she said at lunch today. She looked at me across the table and asked, “Do we have children?” She said that in the same manner that a stranger might have asked us if we have children. Then without giving any sense of surprise on my part, I answered her very much the way I would have answered that stranger. I said, “Yes, we have two children, a daughter and a son.” From there, I gave her their names, where they live, and their spouses as well as their children. I even told her a few things about each of our grandchildren. I stopped because I could sense that I was providing more information than she could digest.

Her failure to remember that we have children represents yet another marker in her journey. I know that this is likely to have been an isolated moment in which she forgot, but it is a sign of the progressive nature of this disease. As always, I reflect and wonder about the future. When she will completely forget that we have children? I’m afraid that day is coming altogether too soon.

April 17, 2018April 18, 2018

The Struggle for Independence

Kate has never liked being dependent on others, not even before Alzheimer’s. Of course, none of us is ever completely independent. All of us depend on others in one way or another. We generally pick and choose those things we will do for ourselves and those we would prefer for others to take car of for us.

The first big blow to her independence came when she stopped driving. That was four years ago this past December after an accident in which she totaled her car. You might think that she would be used to being without a car by now. Not so. She still occasionally says, “How would you feel if you had to depend on me to take you everywhere?” That happened just today.

I am reminded that her initial desire to keep her diagnosis private was largely motivated by her not wanting to be treated as a patient. She wanted to be treated like anyone else. In a way, that was an expression of her desire not to be dependent on others.

There are areas where she has worked hard to assert her independence. Among those, the one that is most noteworthy involves her clothes. Within two or three years of her diagnosis she was not selecting clothes that she would have worn before her Alzheimer’s. At that point, I was new to dealing with such things and would let her know that what she was wearing was either soiled or inappropriate for a particular occasion. She often resisted my suggestions. I have learned to be more accepting, but I still intervene depending on just how soiled or inappropriate her attire. Over time we have both done some accommodating, but she has done more. That means she has become more dependent on me.

This dependence has evolved and has often been her own choice and not mine. There are now times she specifically asks me to get her something to wear. This seems to occur when she has looked for something but hasn’t found anything she thought was right. It is almost as if she has been overwhelmed by the choices. There are a lot of clothes in her closet. Although I have gotten rid of many things that no longer fit, I have also added many new clothes. Whatever the cause, it is clear that she sometimes wants my help.

The same thing is true about dressing. I would never have thought about helping her dress until she has struggled with getting them on. I generally ask if she needs help. Often she says she doesn’t. Other times she says she does.
One other area in which she asserts her independence involves my taking her hand when we go up or down stairs or curbs. Sometimes she wants my hand. Many times she does not, and she often refuses sternly. I always do what she wants, but I try to watch her closely in these situations to see if she needs help.

I see other signs that she may be working hard to maintain a sense of independence. For example, she is more careful now than three or four years ago when it comes to maintaining a measure of order with her clothes. She no longer lets her clothes accumulate on the furniture and floor of the bedrooms. In addition, she is trying to make up our bed each morning. It’s not done quite the way she would have done it before her Alzheimer’s, but it is immeasurably better than in the past few years.

As time has passed, she has become increasingly unsure of what she should do and depends on me to guide her. This almost never involves what she should wear. It does involve things like “Should I get ready for bed?” “Should I go to bed now?” or “Should I take my cup into the restaurant?” It also includes some things for which I would never think she needs my guidance or permission. These include things like “May I use my iPad?” and “May I take my shoes off?” All of these questions are usually asked via hand signals rather than spoken words. The latter two questions occurred just a few minutes ago.

Forty-five Minutes Later

I took a break to take a shower. Before I did, Kate said she was going to bed. Then she said, “What should I wear?” I said, “Would you like me to get you something?” She said yes. In this particular case, I know she is tired and believes it is simply easier for me to get something for her than to do it herself. In other words, this is a time when she would rather be dependent. She is working hard to retain independence related to things which she believes she can do and wants to do. This is not really any different than what each one of us does. We pick and choose, but we don’t want to feel dependent.

That raises a related question. How we feel about these changes? I must confess that I really don’t know how she feels. Since she doesn’t like to discuss her Alzheimer’s and its consequences, I can only infer from what I observe. That said, I believe the change to greater dependency is more difficult for her than for me. I say that for two reasons. First, she reacts so strongly when I attempt to help her with something that she feels she can and wants to do for herself. Second, I imagine that if I were the one giving up my independence in the same way, I would hate it.

As for me, her becoming more dependent actually makes it easier for me to take care of her. There is less hassle when I am in control. On the other hand, I don’t like seeing her becoming more dependent. It makes me sad each time I recognize that she has crossed another marker on her journey. I would much rather deal with the stresses of caregiving than experience the sadness that accompanies Alzheimer’s. Losing one’s spouse is really losing a part of oneself. Next month we will celebrate our 55th wedding anniversary. We were so innocent as we faced the future together. Like other couples we were wildly enthusiastic about the future; however, we couldn’t begin to imagine the abundance of joy and good fortune that lay ahead. I am satisfied that we have invested wisely in the time we have had together and confident that, together, we will weather the storm that awaits us.

April 17, 2018

Our Trip to Memphis

Kate and I returned from Memphis on Sunday. With each trip we take, I watch to see how she is adapting. I know that at some point, we will have to discontinue travel. I am glad to report that everything went well. Of course, we had the same kind of experiences we have at home, but they did not minimize the pleasure we had. For example, several times she asked, “Where are we?” She also asked me to tell her Jesse’s name as well as those of her two boys. I am optimistic about our upcoming trip to Texas a little over three weeks from now.

Breaking up our trip with an overnight stop in the Nashville area turned out to be a good idea. Kate normally spends so much time working jigsaw puzzles on her iPad that I sometimes worry about her being bored while we are in transit. She finds it difficult to work them in the car because of the frequent bumps in the road. The surprising thing is that she seems to get alone fine without her iPad.

The trip back home was a different story. We encountered bad weather off and on most of the way. The eastbound lane of I-40 was closed about twenty miles east of Nashville. The last mile before we had to exit took us an hour. The detour took another 30-45 minutes, so we were about two hours later getting home than I had expected. We were both glad to get home, but Kate took it all in stride. I am encouraged about additional trips like this one.

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.