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Predicting the Future: Part 2

Since writing Part 1 the other day, I had a conversation with someone who asked what I planned to do in the long run with respect to Kate’s care. I told him that was a good question and gave him the following answer.

My desire has been and still is to keep her at home. There are several things that have influenced me to feel that way. First and foremost is the fact that three of our four parents remained at home. After Kate’s father had a stroke, he required round-the-clock care. Kate’s mother learned of someone who could move into their home and provide that care. Her father only lived four months after the stroke. That arrangement worked well. Her mother had a series of TIAs that led to vascular dementia. That also led to the need for 24/7 care. Through their mother’s friends, Kate and her brother, located someone who moved in with her and supervised three shifts of people who provided the needed care. After a year or two, the friend who had moved in to serve as a supervisor had her own health issues. That is when Kate and I brought her to Knoxville to live with us. She lived with us five years and three months with round-the-clock care provided by shifts of CNAs we engaged through an agency.

During this same period of time, my mother was diagnosed with dementia. My dad did not have the same financial resources as Kate’s parents, nor did he have the inclination to have help in their apartment. My brother and I tried any number of times to engage in-home care or to move them to an assisted living facility. Dad tried in-home care but didn’t like it. He ended up caring for my mother at home the entire time. The only help he did accept was an adult day care center. He dropped Mom off every Wednesday morning so that he could attend his Kiwanis meeting and shop for groceries. I regularly brought in meals the last year or two. Before that Dad shopped and cooked on his own. I have a new-found respect for him now. He said next to nothing about any problems he had taking care of her. I was able, however, to observe the toll it took on him. I was quite relieved to discover that he bounced back after her death. He even had a significant other who developed vascular dementia and cared for her until her death. Dad lived 11 years after my mom died and 4 years after his significant other died. He was quite a man and caregiver.

With that background, I was naturally inclined to keep Kate at home. If Dad could do it, I could as well. Besides we have long-term health insurance that will cover a large portion of the financial costs. Dad didn’t.

Since Kate’s diagnosis, I have learned much more about dementia and caregiving. I’ve read a lot of books written by caregivers. I have also followed several different forums for caregivers of PWD. It has also been almost 7 years and 8 months since the diagnosis. I’ve had vastly more personal experience as a caregiver than I had with our parents. All of that gives me a better grasp of the challenges to be faced than I did before. For quite a few reasons I have mentioned previously, I’ve had the good fortune of having a load that is  lighter than that of many people in my shoes.

That leads me to an important conclusion. I don’t believe there is one approach to caregiving that works for everyone. I believe that each caregiver has to assess the numerous ways to provide care. What are the pros and cons of care at home? Care at a facility of some type? Having a good idea of the options that are available will help the caregiver and family determine what is most desirable.

Then it is time to get practical. Do we have the financial resources available to have most or all of the options? (That rarely happens.) How well-suited am I to play the role of a hands-on caregiver? If I want to bring caregivers into the home, should I go through an agency or try to hire and manage caregivers? In either case, what kind of manager would I make? Am I ready to have people in the home 24 hours every day. What about my own family situation? What other responsibilities do I have? Am I employed now, or will I have to continue working to meet expenses?

Caregivers also need to be honest with themselves concerning their own personalities and those of the person needing care. Some people are natural caregivers. Others are not. Most of us fall somewhere in between. I continually ask myself the questions above. So where does that leave me? My desire has always been to keep Kate at home for the the entire time. Am I beginning to have reservations as she enters the final stages of her illness?

My current answer to those questions is that I am still optimistic about staying the course. Nothing new has happened to change my mind. On the other hand, I continue to keep all my options open. I do that because I don’t know what lies ahead. Kate has been very easy to care for up to now. Based on the experience with my mother and Kate’s mother who were also easy to care for, I believe Kate’s attitudes and behavior will continue to be very much like theirs. I should also add that I have never thought of providing all of her direct care myself. I have always intended to work through an agency who will provide 24/7 care. Thus, I am optimistic, but I believe I will always keep an open mind concerning what is best at the time.

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Confusion in the Evening

As we were driving home from dinner last night, Kate said, “Everything looks so different to me.” I wasn’t sure if she just didn’t recognize what she was seeing or if she thought she was in some other place than Knoxville. It wasn’t long before I discovered she was mixing up Knoxville and Fort Worth.

When we drove up to our house, she said, “I remember this house.” I said, “It’s been a nice place for us to live.” That made me think she knew that we were home, but I wasn’t sure. After we were inside, she said, “I’ll follow you.” This is becoming a pattern. She is definitely unsure of herself in the house, that is, unsure of which room is which and where she should go. I told her to follow me and walked into our family room. She said, “It looks so different now.” I said, “So you think it’s changed.” She said, “Oh, yes.” Then she said, “This is a nice room.” She looked around the room as though it were a house we had lived in years ago and said, “This is a nice house.” I agreed with her.

Then she asked me what she should do. I told her she could relax in the family room for a while if she wanted and that we might watch a little of Fiddler on the Roof later. That seemed to suit her. She took a seat in the family room and picked up her iPad. I went to our bathroom to prepare her meds for the week ahead. When I returned with her evening meds, I found that she was not working on jigsaw puzzles but looking at photos. Recently, she has been accidentally touching the photo app as opposed to the puzzle app. She wasn’t unhappy about it, but she said she was trying to find photos of TCU. There weren’t any on her iPad.

I sat down with her and did a Google search for the photos she wanted. We looked at some of the recent ones. The she wanted to see old photos. I found a few of those as well. When we had finished, she said, “Sometimes I wish we had gone to school here.” I said, “Do you mean at TCU?” She said yes. It was then that I understood that she was confusing Knoxville with Fort Worth. She thought we were in Texas. I told her we had met at TCU. Then she said how glad she was about that. It wasn’t long after that when she said something about our living in this house. Once again, it seemed like she was responding to some aspects of her surroundings as though she was in Fort Worth and others as though she knew she was in Knoxville. This is another example of the kind of things that don’t make sense to someone who doesn’t have dementia but seems quite all right to a PWD. The best way I can think of it is to compare it to dreams we sometimes have. It is not unusual at all for contradictory or impossible things to happen in the dreams of normal people. This kind of experience seems to invade the world of PWDs.

There are moments, however, when I will say something that causes her to see that she has done something strange. This afternoon, for example, before we left for dinner, she had gotten an old Time magazine, a container of deodorant, a brass knick knack that looks like a business card holder, and a ceramic coaster to take with her. As she did the other night, she saw a picture of our son and asked about bringing it and a picture of her father with her. I asked where she thought we were going. Then she put the things down and said, “I can just leave them here.” This was said without any anger or disappointment. When this happens, it appears that she recognizes that she must be doing something wrong and stops.

Before going to bed, we had two other instances of her not being able to find me in the house. That wasn’t because I was in an unusual place. In fact, I heard her call me.  “Richard, where are you?” I said, “I’m in the bedroom.” She didn’t come in. Then I heard her ask again. This time she found me. I think she had picked up the direction by the sound of my voice and not by knowing where the bedroom is. This kind of confusion is opening a whole new experience that I hadn’t really thought much about. I wonder how she will handle such things with the sitter. Kate may not want to ask her where she “should go” or do. I plan to let the sitter know that she is forgetting her way around the house.

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A Very Tender Moment for Both of Us

People who know each other well often find that they understand the thoughts and feelings of the other without the expression of words at all. Last night, Kate and I had what I believe is one of those experiences. We went to our regular pizza place for dinner. We normally go on Friday night, but we went to a more special place that night. It is a much more romantic place than where we have our pizza. The pizza place is something of a dive, a really down home place where they specialize in all the Italian comfort foods – lasagna, spaghetti and meatballs, baked zita, etc. There is nothing romantic about it, but that is where we had a very touching moment.

We took a seat in a booth on the side of the dining room near the back. At first, Kate was quiet, not saying a word. Then with a touch of sadness she reached her hand across the table to me. I took her hand in mine, and she said, “Thank you.” I said, “For what?” She answered, “For taking such good care of me. You’re a good man.” At that moment, tears welled up in her eyes and in mine. I said, “We’re both getting sentimental, aren’t we?” She nodded. We didn’t say another word. We were silent for a few minutes. Then we went ahead as though that moment hadn’t happened.

I can’t be sure of exactly what was going through her mind, but here is what I think. She thanks me frequently, but last night was different. I believe she recognizes the fact that her memory is getting weaker and that it’s not going to get better, only worse. I don’t believe she remembers that she has Alzheimer’s or even remembers what that is. She only knows she is not functioning the way she should. I believe she knows our lives will not be the same again. Even if that is not precisely what she intended, I interpret her words as a way of saying goodbye.

Will I ever know what she was really communicating? Probably not, but it made me think of an experience our TCU friends Nancy and Charlie Hardwick had a few weeks before he died. He had shown signs of dementia a year or two before Kate. He looked up from his bed into Nancy’s eyes and said, “You know I’m dying, don’t you?” She did know, but she was surprised at his clarity in recognizing it himself.

I doubt that Kate goes so far as to see her present condition as a step in the dying process, but I believe she is coming to the conclusion that she won’t get better and is grateful that I am committed to caring for her whatever lies ahead. What makes me believe this? There are several things.

First, is that she has previously conveyed her awareness of her memory loss. Though it doesn’t happen often, she even says things like, “I don’t know what’s wrong with me?”  Second, she not only recognizes that she has a problem, she works hard every day to remember my name, the names of our children and grandchildren, what city we live in, the names of the restaurants we visit. She tries, often unsuccessfully, to repeat them as if she were trying to imprint them in her brain. She obviously cares. Third, although not all the time, she is bothered by her memory problem. Her two or three anxiety attacks have been ample evidence for me. Fourth, she frequently demonstrates an ability to correctly read what is happening around her. She understands matters of life and death and suffering. She is very responsive to news reports. While she can’t grasp the explanations of news, she frequently exhibits the appropriate emotional responses to them.

Finally, the emotional way in which she expressed her appreciation last night communicates that her sense of what is happening is far deeper than a casual instance of having a problem with one of her jigsaw puzzles and my helping her solve it. She knows she has a serious problem.

It wasn’t very long ago that I thought she would simply drift away without suffering any anguish over her illness. That is clearly not true. Now I am asking “How long will this last?” I really don’t want to see her enter the next stage, but I don’t like seeing her suffer.

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More Confusion

Today Kate has been in a very good humor but continues to display much confusion. That was evident first thing this morning. I always close the door from the back of the house to our family room when I leave the bedroom each morning. That way I don’t have to worry about the radio or my music waking her. I was in the kitchen when I heard her open the door. I looked up to see her poke her head out. Then she turned around and went back to our bedroom. I walked to the bedroom and found that she had walked over to the bathroom door. She always closes it when she leaves. She didn’t walk it. She looked in and turned around and called my name. I said, “Here I am.” She said, “I was worried. I didn’t know where you were.” (By the way, that is usually my line.) I told her I didn’t mean to hide from her, that I was in the kitchen. It struck me that the house is becoming much less familiar that she didn’t know where to look for me. She had probably looked in the other bedrooms and then quickly glanced at the family room without remembering that I am usually in the kitchen until she gets up.

That thought was reinforced when we got home after lunch. She just stopped as we walked into the family room and asked me where she should go. I suggested that she take a few minutes to brush her teeth and then meet me in the family room where we could relax for a while. I led her from the family room and told her she could brush her teeth in our bathroom or the one with the guest room. She chose the latter, a frequent choice.

Once she was settled in her chair, I put on some music I knew she would enjoy and returned a phone call to a friend in New York. It is a little windy today, and she enjoyed looking out the back at the gentle swaying of the trees. When I finished my phone call, I asked if she would like to get out of the house. She did. I suggested we go to Barnes & Noble.

Before leaving, she went to the back of the house. When she returned, she was carrying a tube of toothpaste, a tooth brush, a magnifying glass, a “snow flake” globe that was a souvenir from Glen Arbor, an old bra, and a small US flag for use as a table decoration. I said, “What do you have there?” She showed me each item and put the tooth brush on the table between our chairs and left it there. Before leaving the family room, she asked (using hand signals) if she should bring a framed picture of her father and another framed picture of our son. I told her I thought we could leave them.

After we had been at Barnes & Noble for a while, she said, “What’s the theme?” I didn’t know what she meant although the only association I had was the weekly theme at Chautauqua, but we’re in Knoxville. A few minutes later, she asked, “What day is it?” This is not a typical question. I told her it was Saturday. Then she said, “When does it . . .?” She didn’t (couldn’t?) finish the question. Again, I wasn’t sure what she was talking about but connected it with Chautauqua. I asked if that was what she meant. She did. I told her it was over for the summer. She said, “Oh” and something else I didn’t understand.

Several times very close together she asked where we are. A few minutes later she said, “That looks familiar.” She was looking at the parking lot in front of B&N. Shortly after that, she looked at several murals with famous writers on the wall and said, “I remember when I took pictures of those. I remember looking up some of these men. They were very distinguished.”

After that, she looked across at me and said, “You aren’t going to leave me, are you?” I told her I would never think of leaving her. I told her I loved her and said, “You know, when we were dating, I thought I couldn’t love you any more than I did then. I was wrong. I love you much more now.” She said the same about me.

Another few minutes passed. She looked a little sad. I told her it looked like something was bothering her. She nodded. I asked if she was worried about the two of us. She said no. I asked if it were our children. She nodded again. Then I told her I didn’t think she needed to be worried about them, that they were getting along well. A few more minutes passed. She still looked like she was thinking about something that bothered her. I said, “Do you remember that old expression ‘A penny for your thoughts?’” She did. Then I said, “I don’t think you want to talk about it right now.” She nodded. I told her I could accept that and let it go.

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A Few Moments Ago at Panera

KATE: What’s your name?
RICHARD: Richard Creighton.
KATE: Your full name.
RICHARD: Richard Lee Creighton.
KATE: Richard . . . (Trying to think of the middle name)
RICHARD: It begins with an ‘’L.”
KATE: (No response. Still thinking.)
RICHARD: Lee.
KATE: Richard Lee Creighton. That’s not so hard. (Puzzled look on her face.)
RICHARD: Not too hard.
KATE: What’s my name?

I can’t imagine what it must be like to work so hard day in and day out to know something as important to her as her husband’s name as well as her own. Fortunately, this is one of the times that she doesn’t seem very frustrated or disturbed about not remembering though her puzzled look suggests a bit of concern.

Just as I was about to upload this to my blog, she asked again.

KATE: What’s your name?”
RICHARD: Richard Lee Creighton
KATE: I knew that. (But meaning, “I just couldn’t call it at that moment.)

One of the clues that convey the importance of my name to her is that all this time she has been diligently (it appears) working on her jigsaw puzzles. Then out of the blue, she looks across the table at me and says, “What’s your name?” It is obviously on her mind a lot. She wants to get it right.

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The Rest of the Day

In my previous post, I said that Kate had slept late yesterday. Here is the rest of the story. Mary arrived right on time at 1:00. I told her that Kate was still asleep but would probably be up soon. Then I left for Panera to get a bite to eat before going to the Y. During lunch, I began to feel bad that Kate would wake up to find that I wasn’t there. I decided to go back home, wake her, tell her I was leaving for the Y, and that Mary would be with her. That made me feel better, but I realize that she probably forgot that pretty quickly. That was a few minutes before 2:00.

I took a short spin on the stationary bike at the Y and then went to Starbucks to meet my friend, Mark Harrington. We get together almost every Friday after I leave the Y. At 4:00, I got a call from Mary. She said they were at Panera and wanted to know what Kate usually ate.

I got home just before 5:00. Kate and Mary were in the family room. Everything was fine though I did notice a large stack of towels that Mary had put on the dryer. She had apparently picked them off the floor after Kate’s shower. When I went back to our bathroom I noticed two cabinet drawers were open. That’s where I keep our hand towels and wash clothes. There were none in either drawer. I did see one wash cloth and hand towel that appeared to have been used and thrown on the counter. In addition, I found a pair of my underwear and wondered how it had gotten there. Later, I noticed that the drawer where I keep my underwear was open. Underwear was missing. This morning as I was checking each bathroom for things I needed to wash I found another pair.

I’ll never know exactly what motivated her, but I think she was looking for her things and couldn’t remember where they are kept. Her memory of the various rooms in the house and the location of things within them is getting weaker. This can only get worse. It calls on me to be more aware of the time she gets up so that I can guide her where to go and where to find things. I had hoped that putting out her clothes on the chair beside her side of the bed would solve this, but she seems to forget and/or not see them when she gets up. It is also possible that she sees them, goes to take her shower, and forgets that her clothes were out.

Normally, we go out to a nearby pizza place on Friday. Sometimes we go shortly after I get back home. Other times it is as late as 6:00. It’s a popular place, and I try to beat the crowd. I thought about Kate’s having had breakfast/lunch after 4:00 and thought we might need to eat a little later than usual. Then I thought about the times she is ready to eat the next meal as early as an hour or two after the previous one. My next thought was “Why don’t we do something different tonight?” We have a very nice Italian restaurant not too far from us, but we don’t eat there often. I made reservations at 6:00, and we had a really good dinner. It was a nice change from our Friday night routine.

When we got home, I watched a little of the news while Kate worked on her iPad. Because Kate had slept so late, I thought she would have trouble going to sleep. I was wrong. I played a portion of our DVD of Fiddler on the Roof. She enjoyed it but was tired. She went to bed about her normal time. It had been a very short day for her, but she never realized it.

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Sleep Takes Over This Morning

I shouldn’t be surprised that Kate is sleeping late this morning. After all, she got up at 6:00 yesterday morning and didn’t rest at all during the day. This is a day for the sitter. I wanted her to get up so that we could have lunch together before Mary arrives. At 10:00, I put on some soft music to gently wake her. When she hadn’t shown any sign of life at 10:30, I turned up the volume a bit. At 10:45, I sat down on the bed beside her and rubbed her shoulder. She opened her eyes and quickly shut them. I stayed with her a few minutes and told her I would love to take her to lunch. She gave me a little smile. In another minute, she was frowning. I decided to let her sleep some more, but I left the music up. About ten minutes later, she came into the family room looking a bit confused. I asked if I could help her. She said, “What do I do now?” I told her she could take a shower. I walked her into the bedroom and showed her the clothes that she had picked out last night. Then she said, “I want to go back to bed.” I told her that would be fine. That is where she is right now. I’ll just let her sleep. Mary will be able to take her to lunch when she arrives.

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An Interesting and Very Nice Day

Despite the fact that Kate was up at 6:00 yesterday, she was in a very good mood all day. In that respect, she was nothing like she was the day before. In fact, except for a little normal confusion immediately after getting up, she displayed relatively few of the obvious signs of her Alzheimer’s the way she has done in the past. She did ask my name once or twice at Panera but not once the rest of the day. In addition, she also mentioned our grandson, Brian, by name in an afternoon conversation without my saying anything to prompt her. She didn’t asked me where we are or the names of anyone else. She did ask me the name of the restaurant where we had lunch two or three times while we were there.

Of greater significance, is that we had a very good conversation when we got home after lunch. This is one of those times I wish I had a better memory. I would love to tell you exactly what she said. I’ll do the best I can to capture the moment.

As we drove up to our house, she said, “I remember this place.” I couldn’t be sure of what she meant. Right before this, she was talking about Madison. Did she think this was our place in Madison or simply that she recognized the house we live in now. Once in the house my uncertainty continued. She said something similar about the family room when we walked inside.

She was especially drawn to the back of the house and the trees on the property of the neighbor who live behind us. We sat down in the family room. Each of us had an iPad, but she continued to talk. I wanted to listen and support the conversation. She talked about our years in Madison when I was a graduate student. She commented about it’s having had a great impact on both of us. She said it was a time when we both grew up. Much of what she said comes from things I have said to her in the past, though not recently.

As in most other conversations, she talked about our marriage and how fortunate we have been, but there was something very different. In recent conversations, she has sounded like a nervous talker, just chattering away. This time she was so very normal and thoughtful as she spoke. There was no sign of concern or worry or fear about her memory loss. In many respects, she seemed quite normal. There was one difference that has become more common recently. The struggles with finding the right words to communicate what she wants to say. Often she says, “You know what I mean.” In most cases, she hasn’t told me enough for me to know. I find myself guessing what it was she wanted to say. More than half the time I guess after a few attempts. Other times, I don’t. Then she either drops the point she wanted to make or she goes on with the larger message she is talking about.

I found the conversation to be as rewarding as I found other recent ones to be sad. It was a good reminder that changes are not usually abrupt. They are gradual. They begin with something that happens on a single occasion and gradually become more commonplace.

We ended the day at Casa Bella for jazz night. We both enjoyed ourselves though as on other occasions, Kate was very quiet. There were six of us at our table, and four of us are talkers. Kate and one other woman tend to be on the quiet side.

I would love to see another day like that today.

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Off to an Early Start

I’ve spoken a lot about Kate’s sleeping late over the past few months, so I should let you know that she was up at 6:00 this morning. That itself is not unusual. She often gets up between 5:00 and 7:00 to go to the bathroom and then back to bed. Today was different. I saw her getting ready to shower. I told her what time it was and that she could go back to sleep if she wanted. She indicated she was ready to get up. I got her towels and clothes ready for her and left her. She was ready for Panera before 7:30.

We surprised everybody at Panera. We had never arrived so early. We even beat the group from the Catholic Church who stop by for coffee and pastries after mass each day. The two people working the front counter commented on our early arrival, and one of the managers came to our table to say she had missed us lately. We have seen several others we know. It was like “old home week.”

Being so early led to a humorous moment. About 9:00 (an hour and a half after our arrival), Kate gave me a look that I recognized as “I think it’s time to go.” We got things together and said goodbye to our Catholic friends. When we got outside, Kate said, “Now we can get some lunch.” I told her it would be a while before lunch and asked if she would like another muffin. She said she would. We turned around before getting into the car and took our place at the table we had just left. Our friends at the “Catholic table” chuckled and welcomed us back. They all know about Kate, and are very understanding.

When we came back in, I set up Kate’s iPad while Kate went over to get a drink. I noticed that she was a little unsure about what to do and asked if she would like me to get her drink. She said she would. Then she asked me where I wanted her to sit. At that moment, we were standing beside our table with her iPad opened to her puzzle. She rarely sees it without my pointing it out to her.

A little later we received a phone call from our daughter. That, of course, was a bright spot in our morning. Before going back to our table, Kate responded to a woman seated near us. It was someone whose husband had been a friend of my dad’s. Both of them died five years ago. It had been that long since we had seen her. We had a nice conversation with at her table. When we were through, Kate asked for my help in getting back to our table that is about 12-15 feet away.

It is now 10:45. It looks like we will be here until we leave for lunch. I’m not sure about Kate, but it’s been a very nice morning for me. I think it’s been good for her. Although she doesn’t talk as much as I do, I think she benefits from the stimulation of being with people. All the encounters are pleasant ones as well. I think it’s good for both of us.

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Not Quite Herself Yesterday

When I got home yesterday afternoon, I was eager to see how things had gone with the sitter. Kate seemed so disoriented that I hated to leave her. I left a DVD of Les Miserables for Mary to use if they wanted to watch it. They did watch it, at least Mary did. She said that Kate watched a while and then took a nap. They had just returned to the family room from our bedroom before I arrived. Mary said that Kate seemed to enjoy it before deciding to rest.

After Mary left, Kate said she was glad to see me and then asked my name and her name. Then she asked if we had children. When I said yes, she wanted me to tell her about them. We continued the discussion as we drove to dinner. I mentioned something about our grandchildren. When I told her their ages, she was floored.

We Apart from asking questions about us and our family, she was rather subdued today. She didn’t say much at dinner nor after we got home. The DVD of Les Miserables was still in the player, so I backed it up and played the last fifteen minutes for her. She continued working on her iPad without showing much emotion. I have tried to be very upbeat with her, and she has responded momentarily. It didn’t last, however.