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Everyday Life

At Rotary yesterday, several people asked me how Kate and I are getting along. My answer is very much the same as it has been as long as I can remember. I say “remarkably well.” I believe that is just as true as it was when I adopted that as my standard answer. Recently, I have modified it slightly to say that over the past few months she has declined more significantly than in the past. Depending on the situation and the person I am talking to, I may say something like “She is now having trouble remembering my name as well as her own.” Then I add that we continue to be active and are enjoying ourselves. I think that is a reasonable summary of where we are right now. It just doesn’t fill in the details of what is going on. I try to do that in this blog.

I think yesterday presents a good picture of our daily lives. It was our day for the sitter, and Kate slept later than I would like in order for me to take her to lunch before the sitter arrived. I tried to get her up at 9:30. She seemed very tired, but she was ready for lunch around 10:45. That made it easy for her to have her lunch and get back home. She was neither very cheerful nor grumpy and not very talkative. Shortly after sitting down at our table, she asked my name. I told her. Then she said, “Wait, a minute. Say it again.” I did. She repeated it. Not five minutes later, she asked again. I told her. Over the course of the next few minutes, she asked another two times.

I told her that I would be going to Rotary and that Marilyn would be with her while I was gone. She asked me several times in a row to repeat Marilyn’s name. She wanted to know her first and last name. She was never able to remember it, but she did not express any concern about not being able to remember or the fact that I would be leaving her. Marilyn was already there when we drove up. Kate greeted her cheerfully. We chatted a few minutes. Then I told Kate I was going and would be back later. She asked what she could do. I told her she could stay at home and work on her iPad, talk with Marilyn, or look at some of her photo albums. I also mentioned Panera. That seemed to interest her. When I said goodbye, Kate gave me a dirty look.

When I got home, they were in the family room where Kate was working on her iPad. Marilyn said they did not go to Panera. She mentioned that they looked at the photo book Kate’s brother had made for her and that Kate had also taken a nap. After Marilyn left, I walked over to where Kate was seated. She said, “I’m glad you’re back.” I said, “I’m glad to be back. I like being with you.” She said, “I like being with you.” She placed emphasis on “you” as if to say “and not the sitter.” I said something about Marilyn’s being nice. She said, “She’s all right.” I didn’t pursue the discussion. I think we’ll just have to live with this a while.

The highlight of our day occurred later that evening. I should point out that our time together late in the day until we go to bed seems to be the most consistently good time we have. That may relate to the fact that I am more relaxed. By that time our routine is consistent, and I don’t have to think too much about entertaining her. We have a pleasant dinner. We come back to the house where I usually watch the news while she works on her iPad. Then I put on a DVD of a musical or something similar. Last night, I decided to go to YouTube for some of their musical performances. That turned out to be a real winner. Kate loved it. When I decided it was time for us to call it a night, she said, “It’s been a great day” several times. I also thought we had been well-entertained, but I especially liked seeing Kate’s response. We sampled an assortment of music and performers starting with the video of Kevin Spacey and Billy Joel and “The Piano Man” that I had played for Ellen on Sunday. Then I played about thirty minutes of Andrea Bocelli followed by The Three Tenors (Pavarotti, Domingo, and Carrera).

Kate’s confusion seems to be getting worse. That was expressed in a number of ways yesterday. As we prepared for bed, Kate said, “Where are we exactly right now?” At first, I said Knoxville, but she wanted a more specific answer. I told her we were in our house. She reacted with surprise. She seems to be putting more emphasis on knowing where we are now. She has asked that a long time, but it seems to be more frequent now. I can tell by other things she says that she often thinks we are out of town. At dinner last night, she said, “Are we in Fort Worth?” I mention this as another illustration that she is frequently confused, but it doesn’t keep us from experiencing enjoying life. We’re getting along “remarkably well.”

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Adapting to Change

None of us escapes change. It’s all around us. For those of us living with Alzheimer’s it’s the same. The difference is the source of those changes. In our case, it’s the plaque and tangles that keep growing inside the brain. We’ve learned to expect some changes. Others are unexpected. Regardless, we adapt.

Our weekend trip to Nashville causes me to reflect on a minor change that I experienced in connection with travel. By itself, it is really unimportant, but it is illustrative of the required adjustments that we continually face. It relates to my personal morning routine.

I have always gotten up earlier than Kate. I also like to eat breakfast shortly afterwards. It had been my custom to get up, shave, dress, and go to breakfast while she slept. I have followed this same routine when we are traveling. In the rare event that she woke up before my return (I’m not aware that it ever happened), she understood where I was and didn’t worry. I felt there was no reason to hurry, so I left with my computer or iPad and took my time getting back to the room. Later on, I began to be concerned that she wouldn’t remember where I was. I started leaving a sign that said I was at breakfast and would be back soon. In addition, I took the words “back soon” seriously and didn’t stay any longer than necessary to eat breakfast. I ate quickly and went back to the room. When we are in Lubbock we stay in a Residence Inn where they have a buffet. I request a room on the first floor so that I can get to breakfast and back easily and also take something for Kate. That has worked well for quite a while.

Saturday night in Nashville we stayed in a Marriott and were on the fourth floor. My concern about leaving her has increased significantly during the past few months. Before making the trip, I decided that I would request room service so that I didn’t have to leave her at all. For me, that represents quite a change. Eating breakfast in the semi-darkness of a hotel room is not my idea of the best way to enjoy breakfast. The only other time I recall ordering room service was in 1976 when our family was in Medellin, Colombia. Our children were 7 and 5 at the time, and I am sure that was motivated by convenience.

As I look ahead, I believe our travel is coming to an end. We do have a trip scheduled for Thanksgiving with our son and his family. In that case, our room is likely to be on the first floor again. That should enable me to slip to the buffet and bring breakfast back to the room.

This is hardly the most serious problem involved in our travel. lf it were, I would happily go without breakfast at all (if necessary, of course <g>). The most serious issue is losing her. That has happened several times. Another is getting through airports. Going through security is more challenging. Use of restrooms is another. Regardless of how serious the potential problem, each one requires changes from the way we used to do things.

As I mentioned at the beginning of this post, much in life is changing, and all of us are adapting. There is a significant difference in caring for someone with dementia, and I am reminded of the words of the serenity prayer. “God, grant me the serenity to accept the things I cannot change, courage to change the things I can, and wisdom to know the difference.” As caregivers, we cannot change many of the things we face. That leaves us only one option. We must do the changing ourselves. Those for whom we care cannot.

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The Rest of the Story

Kate got up about 45 minutes after her confusion reported in my previous post. I am especially glad to report that she did not show any of the previous confusion. She didn’t ask my name or who I am. She was a little bit grumpy until we got to lunch. It was one of our days for a sitter, so I left for the Y about thirty minutes after we returned home. When I said goodbye, Kate looked a little disappointed and asked what she could do. I told her she and Mary could go to Panera or stay at home where she could work on her iPad. She said she would like to start by staying at home.

When I returned four hours later, Kate and Mary were in the family room. Kate was sleeping on the sofa. Mary said they had stayed at home the entire time. She said they had talked a little while, and Kate rested off and on. I was disappointed they had not gotten to Panera. I continue to think she feels more comfortable getting out with me than the sitter. I thought Kate would wake up when we were talking, but she didn’t. After I brought in a few things from the grocery, I went over to her. She opened her eyes. I asked if she would like to get up. She said she wanted to rest a little longer. After another thirty minutes, I asked if she would like to get a pizza. She did.

After dinner, I watched the news while she worked on her iPad. Then I played a portion of a DVD of My Fair Lady. She continued working on her iPad but seemed to enjoy the music. She went to bed shortly after 8:30. I was surprised after she had such a good rest during the afternoon.

It is now 9:00. She is still sleeping. We are going to Nashville today to visit our friend, Ellen Seacrest. She is in a memory care facility and has been declining very gradually over the past three years. Her most notable problem is her speech. It has been increasingly difficult to understand her. The last two times we have brought music into our visits. She responds positively to that. I may try that again this afternoon.

This time we are staying over night so that we can have lunch with a longtime friend from West Palm Beach. He is in Nashville for his brother’s 80th birthday celebration tonight. After our lunch, we’ll return to Knoxville. It should be a good weekend.

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Morning Confusion

About fifteen minutes ago, I thought I heard Kate and went to the bedroom to check on her. She was still in bed but awake and saw me as I walked in. She had a puzzled, even a bit fearful, look on her face. I sat down beside her on the bed. She said, “Where am I?” I told her she was in bed in our home. Then she asked, “Who are you?” Sometimes she asks and really means, “What is your name?” This time I sensed that she really didn’t recognize me. I told her my name and that I am her husband. She looked shocked. She said, “I don’t even know who I am?”

I told her I could help her. I told her that she was from Fort Worth and that her parents were Elizabeth and Charles Franklin. This was unlike other situations in which she was confused in that nothing I said seemed to make sense to her or to jog her memory. I continued to talk about family. I mentioned our children and a grandson who is now a student at TCU. The only thing that drew a spark of recognition was the mention of a couple of her aunts and one cousin. Her response seemed like something you might see in a movie when someone with amnesia is told about her life and doesn’t remember it. She didn’t say, but I imagined that Kate was thinking, “What’s wrong with me? I don’t remember any of these things.”

I asked if she wanted to get up and take a shower or to rest a little longer. She chose to rest. I told her I would come back to check on her. She said, “Please do.” Despite the fact that she didn’t know me, she seemed to trust what I was telling her. I believe that is another illustration of the power of her intuitive abilities as opposed to the rational ones she has lost. I am glad about that.

As with other signs along the way, I believe her not knowing any of her loved ones this morning is something that will not be true when she gets up or tomorrow. I do believe, however, that it is a sign of things to come.

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Changes Abound

After a rough start yesterday morning, we had another pleasant day with Kevin. Kate was a little harder to wake. That may have been a result of her getting up early two days in a row. When she did get up, she was a bit grumpy. She seemed more herself at lunch, but when we got home she was tired. I made a trip to the bank. When I returned, I suggested that we watch a little of Les Miserables. I was hoping that might perk her up. It didn’t work. That was the first time I had seen her react with so little interest. She finally got in bed, and I turned it off. That gave us another thirty minutes to get ready to leave for dinner.

The highlight of the day was having a birthday dinner with friends from church. One of them had been involved with the youth program when Kevin was in high school. He has kept up with her over the years. We have gotten together with her and her husband several other times when Kevin has been with us. We had lots of laughs and good conversation. Kate felt very comfortable and participated in the conversation to the extent possible. Several times she had to ask us who or what we were talking about. It is very difficult for her to follow conversations as they flow quickly from one person to another. I was glad to see her asking for us to clarify things. That is something I have never her seen her do with the people we sit with at Casa Bella on our music nights. There she remains silent and never understands what we were talking about.

As she changes, I am adapting as well. Knowing that she might wake up and not realize where she is, I started leaving the doors open into the family room. Previously, I have been sensitive to waking her and tried to minimize any noise and light from disturbing her. Now I believe it is more important for her to hear me and know where to find me. I am also going to be checking on her more frequently. I’ve also thought about putting a monitor in her room connected to a speaker in the kitchen so that I might hear her more easily if she should call me. It’s not that I have tried to pay close attention to her in the past. It’s just that I feel a need to increase the attention as her memory gets worse.

Over the past week or so, she has become even more dependent on me to help with her clothes. For the past four or five days, I have been getting her clothes out for her and sometimes helping her put them on. One of her biggest problems is remembering where her clothes are. I put them on the chair beside her bed. That is what she had been doing before I took over.

Sometimes she doesn’t notice them at all. More frequently, she sees them but moves them to a different place and often separates them. Then I have to help her find them. When she can’t find then, and I am not there, she goes to the drawers in my bedside table and/or to my closet where she gets into a variety of my things. I may have mentioned that the other day she had put on a pair of my winter pajama pants and was going to wear them instead of the ones I picked out for her. I came in after she had them on and showed her the ones I had chosen.

I see significant changes that sadden me. At the same time, I am glad that we have so many happy moments. I know there are more sad ones coming. We are both adapting. I am glad to say that I am not yet overwhelmed by the changing responsibilities, but I know I will need to have extra help at some point. That may come sooner than I would like.

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Our son is observing more signs of Kate’s Alzheimer’s.

It was sometime after Kate’s diagnosis that I learned what it meant to “lose one’s filter.” My own interpretation would be that people, especially those with dementia, fail to consider their audience when expressing themselves and can easily say things that might not otherwise say. I can’t say that this has been a special problem for Kate, but she is definitely more likely to express her honest thoughts now than before Alzheimer’s.

During Kevin’s visit, I have seen new evidence of not filtering what she says. Up until now, it has only been with me that she has expressed her memory problems. Yesterday she did the same in his presence. Twice she asked my name. She also asked, “Where are we?” In the afternoon, we attended a stage production of West Side Story. Before the show, she asked me someone’s name. She immediately forgot it and then asked again. This is the kind of thing about which she once would have been careful not to do in front of someone else.

During the morning, there were other signs of her Alzheimer’s. I had asked Kevin to lock his bathroom door because Kate often uses that one rather than our own. I made sure that he had clean towels and that the bathroom was in order. I had everything ready for Kate to shower in our bathroom. Kevin had breakfast and went back to take a shower. He came back to the kitchen in a few minutes and said that Kate was showering in his bathroom. We waited for her to finish. Then I went to check on the bathroom. I found that she had used both his bath and hand towels plus at least two other towels she had thrown on the floor. I was surprised because she was up so early and that she had had to enter the bathroom from Kevin’s bedroom because he had locked the bathroom door as I had suggested.

At church they served communion by intinction. For those who may be from another tradition, members of the congregation form a line and go to one of several stations where one person holds the bread and another a cup of the wine. I knew Kate would not remember what she should do and asked her to watch me. It was a little too much for her to absorb. I had to coach her quietly, and it worked out fine. It just took us longer than everyone else. I am sure the people behind us wondered about her. I am also sure that some of those are aware of her Alzheimer’s and recognized the problem. That was one of the few times she has done something in public that might cause people to suspect. That is remarkable given how long it has been since her diagnosis. She continues to get along well in public situations. That is a major factor in our ability to continue so much social activity, another thing for which I am grateful.

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More Good Times

It’s 10:15, and were sitting here at Panera. Kate was up early enough for us to get here by 9:30. Of course, that makes me happy because today is another day for the sitter. I want to spend as much time with her as I can. To top it off, Kate is in a very cheerful mood. That certainly gives me a boost. It continues to amaze me how much that offsets the sadness that I might otherwise feel when I see all the changes that accompany this stage of her Alzheimer’s.

Some of those changes make caring for her easier than in the past. In particular, I am thinking about managing her clothing. She is much more compliant than in the past. That relates to her increasing dependence on me. For example, we got home from Panera around 5:00 yesterday afternoon. I planned for us to leave the house for dinner at Casa Bella at 5:30. The attire for their music nights is informal, but I felt that both of us should change into something a little nicer than what we had been wearing all day. Past experience led me to be concerned about suggesting that she change clothes. That was especially true last night. I wanted her to change her top, pants, and shoes. I approached this carefully saying, “We have a little time before we leave for dinner. I thought it might be nice if we changed clothes.” She said, “Okay” without any concern or question. I had already picked out what I wanted her to wear and brought it to her. She changed clothes without a problem. She looked terrific. The top I had picked out was one I had bought several months ago. I had tried to get her to wear it previously, but she thought it was too dressy.

Our dinner and the music was terrific last night. Kate enjoyed herself although she is talking less and less in situations like this. We were seated at a table for 8. When the singers were not on, the conversation was lively. I didn’t see any sign that Kate was bothered by this. I think the music made the difference. If we had been at dinner for 2 ½ hours without it, she would have been very bored. I wouldn’t have blamed her. I would feel very alone if I were in a group of people I didn’t know and couldn’t remember anything to talk about.

This makes me think of my mom who had dementia. My dad took her with him almost everywhere long after she engaged in conversation. I didn’t really think about it then. I know much more now that I wish I had known then. I do believe we treated her the right way. We expressed our love for her, and we considered her a part of all gatherings up to the time of her death. Today is their anniversary. Sixteen years ago, we celebrated their 70th anniversary at our home. She died less than a month later.

I also think of my dad. I have done that frequently as I have learned to care for Kate. He was quite a model of a husband who devoted himself to caring for his wife. He did it with very little help. He took her to day care every Wednesday morning while he attended Kiwanis and ran errands. The only other help was from me. That was primarily remaining in almost daily contact and providing evening meals. Otherwise, he was on his own. I should add that it was his own choice. My brother, Larry, and I tried to bring in help or get him to move to assisted living. He fought it and won.

Now Kate and I are traveling the same road. I think we are also handling the situation well. I am comforted by the belief that we will continue to enjoy the days ahead even as life changes for us. Already I am beginning to adapt to Kate’s not knowing her way around the house. It was somewhat shocking when I noticed the first signs. Now, it is becoming routine. When we got home last night, she very naturally asked me where the bathroom is. Just as naturally, I took her.

Before leaving the house this morning, I went to our bathroom to brush my teeth. When I returned, I couldn’t find her. I called her name, and heard her respond but didn’t immediately locate her. I followed the sound of her voice and found her in the living room. She was waiting for me. That is unusual. Like many people these days, we almost never use our living room and keep the doors to the front of the house closed most of the time. She obviously didn’t know where to go and wandered there waiting for me to find her. That is a change from her usual behavior. Normally, she goes to the car and waits for me there.

Her loss of memory for the rooms in the house is sad, but as I said before, her cheerfulness and the good times we have more than balance the sad times.

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Reaction to My Leaving Her with the Sitter

Sometimes there are dramatic moments that one can recall as a point when life changed. The moment Kate’s doctor delivered the news of her diagnosis was one of those. It was mid-day on January 21, 2011, exactly one week after Kate’s 70th birthday. That was a clear marker in our lives. Most other changes are less defined. They just creep up on you. That has been the pattern for Kate and me the past 7 years and 8 months.

Although our changes have been very gradual, I frequently wonder if we are entering a new phase when I notice any difference in Kate’s normal pattern. The changes in her sleeping late in the spring made me think that a signal of an important change. Of course, I couldn’t be sure at the time. Looking back, it appears I was right. Since then, Kate’s changes in memory and confusion have increased more significantly than at any other time since her diagnosis.

One of those changes has been her behavior in connection with the sitters. For months, she happily greeted them. That made me feel good as I left her. Over the past few months, I’ve noticed less enthusiasm when the sitter arrives. On several occasions, Kate has asked if she could go with me. She seemed disappointed when she couldn’t. Along with that reaction, there have been some occasions when she and the sitter didn’t go to Panera. She is also spending more time resting while the sitter is here.

During this same period of time, she was growing more dependent on me. I have mentioned several times, once in the last day or two, that Kate has told me she likes being with me, that she feels safe with me. She hasn’t said this around the time the sitter has been here, but I have always wondered if there might be a connection. An experience yesterday strengthened that suspicion.

We arrived at Panera for lunch a little later than I had wanted and called the sitter to meet us there rather than at home. A few minutes before Mary arrived, I reminded Kate that I would be going in a few minutes and that Mary would take her home. She gave me a big frown. I said, “Do you feel like I am deserting you?” She said sternly, “Yes, and I don’t like it.” All of a sudden I felt like a parent leaving her young child on the first day of school.

When I got home, Kate was resting on the sofa in the family room with the sitter who was watching TV. I walked the sitter to the car and asked if they had stayed long at Panera. She told me they stayed “a little while.” She said Kate had wanted to go back home where she rested for a while. Then she got up several times and returned to the family room. She worked on the iPad a little but also rested a good bit.

In our conversation, I suggested that if this happens again that she might take her back to Panera. She seemed a little surprised. I told her it is not uncommon for us to go back more than once in a day or to Barnes & Noble. I also told her that Kate gets bored staying at home for long stretches and that we are rarely home for more than 2-3 hours in a day. I will convey this to our other sitter the next time she is here. I am hoping to work with the sitters to address the issue. I feel that is a better direction than reducing the sitters’ time.

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Waking Up This Morning

Kate was sleeping soundly when I woke her this morning. I put on some music, but she continued to sleep, so I went into the room and sat down on the bed beside her. She opened her eyes but didn’t say anything. I asked if she would like me to take her to lunch. She nodded. I sat there a few moments. Then we had the following conversation.

KATE:  “What’s your name?”

RICHARD: “Richard Creighton.”

KATE: “Richard Creighton.” (pause) “Say it again.”

RICHARD:  “Richard Creighton.”

KATE:  “Richard Creighton.” (pause) “Who are you?”

RICHARD: “I’m your husband.”

After another moment or two:

KATE:  “Where am I?”

RICHARD:  “At home in your bed.”

KATE:  “Where’s my home?”

RICHARD:  “Knoxville, Tennessee.”

Shortly after that, she got up and is now taking her shower.

I relate this incident to convey just how much of her memory she has lost in the past few months. There is something else. I am amazed at how well she adapts to having so little memory. Except for several attacks of anxiety mentioned in other posts, I haven’t noticed any display of anguish. That doesn’t mean I haven’t observed anything else that might be a symptom of her concern. Day before yesterday, she was quiet most of the time I was with her (until bedtime when she was talkative). When she has her quiet moments, I wonder what she is thinking. Is she thinking about herself and what she can’t remember? Is she wondering what is the matter with her? I suspect so. She is very perceptive and insightful. I am still surprised when she makes comments about me that are very much on target. She can’t remember my name. Sometimes she doesn’t recall that I am her husband, but she has a good grasp of who I am in terms of personality. She knows my OCD tendencies. She has always been a good observer of her own qualities. That makes me think that she may be suffering more inside than she lets on.

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More on Insecurity

It was just two days ago that Kate got up and was worried because she couldn’t find me. I had been in the kitchen, and she hadn’t done a lot of looking. She was still in the back of the house when I found her. What was important was that I hadn’t seen her react this way before. Although I haven’t walked for three weeks because of a pinched nerve, I decided the days of my morning walk are over. I also wondered how soon it would be before I saw other signs of her insecurity. I didn’t wait long.

This morning I left the door open from the family room into the hallway where our bedroom is located. I have been closing it for years so that I might not disturb her while she was sleeping. I thought leaving the door open would help her find me the next time she is looking.

When I checked on her about 9:00, she was just getting out of the shower. I left her with the clothes I had laid out for her last night. A little after 9:30, she walked into the family room. She was wearing the pants I had put out for her but with her night gown instead of the top I had put out for her. She said, “Oh, there you are. I couldn’t find you.” Unlike the other morning when she seemed a little worried but still calm, she was definitely more concerned and said, “Don’t ever do that to me again.” When I told her I wouldn’t ever leave her, she said, “Promise? Promise?”

When I was assured she was all right, I went to the bedroom to get her top. I gave her it to her, and she asked (using hand signals) if she should take off her gown. I told her she should. Once she had the top on, we were off to Panera.
From there, we went to lunch. As we walked along side the restaurant, I walked ahead of her. That is has been her preference for years. That seems to be the most comfortable way for her to know where she should go, just follow Richard. I was about 8 feet ahead of her when I heard her call my name. I don’t ever recall her doing that before (that is, while following me). I stopped to let her catch up. Then I turned around. When I reached the corner where we would turn toward the entrance, she called again rather sternly. I stopped and waited for her. I was going to do that anyway. I have learned the hard way that she loses me when I turn left or right. I don’t recall exactly what she said, but she almost seemed frightened. I apologized, and told me she needed me to stay with her.

There have been several times over the past few years that I have lost her. Each time was when we were traveling, and each time she was very calm during and after the time she was missing. Now she is expressing a degree of fear of being lost, and not just in “foreign territory” but right here at home. The changes seem to be occurring with greater frequency all the time.