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Thoughts on Dependence, Appreciation, and Responsibility

Yesterday was another very nice day for Kate and me. It was just one of many. It was also a day when I was a little more mindful of how dependent she is. Like other days in recent months, she looked to me for guidance on things you might not expect. For example, she asked me if she should take a tube of toothpaste and her hair brush with us when we went to Panera yesterday morning. After returning from lunch she asked me where she should go to rest. I told her she could lie down on our bed or the sofa in the family room. She chose the bed.

We don’t normally think about it, but our rational thought processes guide us most of the time during a given day. We remember that we have an appointment at a specific time and understand how much time we have to prepare before leaving. We remember the rooms in our homes and where we sit when we want to relax, and where to lie down when we are tired. When people with dementia lose these abilities, they don’t know what to do next. That is where Kate finds herself much of the time. It’s hard for those of us without dementia to fully understand what this is like.

Thursday is the only day of the week we don’t have a regular place for lunch. Since she was up early, and we had gotten to Panera and had no other commitments until haircuts at 3:00, I took her to a restaurant we’ve visited only a few times. It’s almost a twenty-minute drive, but it’s a nice place and worth it occasionally. We had a very pleasant lunch. Just before we left, she asked me if I thought she should use the restroom before leaving. We decided that was a good idea, and I walked her to it. As I often do, I waited outside the door just in case she needed something. It turned out that was a good thing. When she came out, she had a paper towel in her hand and didn’t know what to do with it. She hadn’t noticed the trash container inside. I took the towel and put it in the trash. Then I noticed a roll of toilet paper on the floor. I picked it up.

As we drove away, she said, “You know, when I’m with you I feel at ease. I know I’ll be all right.” I said, “Do you feel uneasy when I’m not around.” She said, “No, I can handle myself all right. I just feel better when you are with me.” I’ve often heard her say things like “I’m glad you’re driving. I could get home by myself, but it might take me a while.” She recognizes she has a problem with tasks like these, but she also likes to think that she can really take care of herself if she had to. I am glad that is something she can hold on to.

Kate has always been appreciative, but she is becoming more so as her dependence increases. She thanks me for specific things like helping her find the bathroom or getting back to bed. She also thanks me at times when I haven’t done anything. I occasionally read several online message boards for caregivers. I realize that many caregivers don’t receive this kind of gratitude and, because of that, sometimes feel resentful. That’s not an experience I’ve had. That makes caring for Kate easier than it would otherwise be. In fact, her decline and her appreciation act together to give me a greater sense of responsibility and determination to see that her needs are met. Like other caregivers, I am guided by two broad goals – to keep her feeling safe and secure and to keep her happy. Her response to my efforts reinforces that commitment to her.

That reminds me of something else that is true for all successful marriages. Marriage involves two people working together. Kate and I are still partners. Her dependence doesn’t mean I am working alone. She’s unable to do much for herself now, but she is still doing what she can for me. She does that with her expressions of appreciation. That makes all the difference in the world. When she was first diagnosed, we said we would face this challenge together, and we are.

Thirty minutes ago, Kate got up to go to the bathroom. I went to her. She asked me where the bathroom was. I showed her. When she came out, she asked if she could go back to bed. I told she could and that I would let her know when she needed to get up for her eye doctor’s appointment at 10:30. She thanked me. As started to walk away, she said, “What is your name?” I told her. She said, “What is my name?” She said, “And what is your name?” I told her again. She said, “What is my name?” She repeated both questions one more time. She didn’t ask out of fear or anxiety. She simply wanted to know our names. She looks to me for help with things like that. I’m glad to be here for her.

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What a Difference a Smile Makes

Several times I’ve mentioned Kate’s smiling as I enter the bedroom to check on her in the morning. I love that smile. It reminds me of those days before Alzheimer’s. Even now as I understand that the smile doesn’t mean that she remembers my name or that I am her husband, her smile gives me a good feeling. I think “What a great way to start the day.”

It’s not always that way. Take yesterday for example. She wasn’t smiling. Instead, she looked as though she wished I hadn’t come in. Now that I am more aware of her ability to learn intuitively, I suspect she knows that when I walk in, I am probably there to get her up. Yesterday she told me she wanted to stay in bed a little longer, perhaps a lot longer. So it is understandable that she didn’t smile. It was only when I told her Mary, our sitter, was coming and that I hoped I could take her to lunch that she decided to get up. As usual, she was appreciative and thanked me for helping her get to the bathroom and dressing, but she expressed her independence and was irritated at my attempt to help.

She joked with me as we prepared to leave the house. It was one of those times when her jokes had a little bite to them and, of course, at my expense. I didn’t joke with her. Kate has never been one to joke. I have often joked with her. Like all jokers, I sometimes go too far. A year or two ago, I felt our joking with each other was getting out of hand. I stopped. I started responding more lovingly all the time even when she joked with me. I think that had a great impact. She still likes to kid me, but it seems less bitter.

She didn’t say much as we drove to lunch. As I helped her out of the car, she said, “I love you.” For the balance of the day, she was just fine. When we went to bed, she said, “It’s been a wonderful day.” I agreed. I like her smiles. Even when she doesn’t begin with a smile, she ends with one.

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A Tender Moment This Morning

I looked at the clock. It was 5:45. As I rolled over to get up, I heard a soft chuckle. Kate often does this when she recognizes that I’m awake. I think it’s her way of saying, “Hello, I’m awake too, but I’m not ready for conversation.” I reached over and touched her arm. She pulled my arm around her. It was a loving response. She didn’t appear to be afraid. She just wanted to be held. Neither of us said a word. I held her until 6:15 when I got up.

As I was finishing up in the bathroom, she came in. When she was ready to go back to bed, she said, “What do I do now?” I told her it was still early and that she should go back to bed. She said, “Where is it?” I walked her to the bed. She sat down and said, “Thank you.” I said, “I love you.” She smiled and said, “I love you too.” Then, as so often happens, she said, “What’s your name?” This is just another example of the loss of her rational abilities while retaining those that are intuitive. In this case, her feelings for me. Tender moments like this continue to sustain me as her life and mine keep changing in ways I wish I could stop.

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Relieving Confusion

Kate seems to be entering a new state of confusion. For months, I have noted that she sometimes forgets I am her husband. In the past few days she has more frequently asked if I am her daddy. I believe this represents a further step along the way to totally forgetting who I am.

It also requires me to think more carefully about telling her who I am. I believe when she asks, she really wants me to tell her the truth. I’m not going to correct her if she calls me “Daddy.” On the other hand, I will continue telling her the truth when she asks unless or until I see any harmful effects. Even though she is usually surprised to find out that we are married, she hasn’t seemed especially disturbed. Yesterday morning she even reacted positively. When I told her I was her husband, she had a funny look on her face. I asked if that bothered her. She said, “No, I like that. You’re a nice guy.” I intend to watch carefully for any change and make adjustments accordingly.

So far I have been encouraged by my ability to lead her out of confusion. This morning’s events are a good example. I didn’t see or hear her when she got up at 7:30 to go to the bathroom, but I heard her say, “Hey.” I found her in a hallway where she had just come out of the bathroom. She asked me what she should do. I wasn’t quite sure what to say. Except for her reliance on me to tell her what to do, she seemed much more alert than usual. It looked like it would be easy to have her take a shower and get dressed. The fact that it was so much earlier than she usually gets up made me think she should rest a little longer. I suggested she do so. When I pulled the covers over her, she said, “What do you want me to do now?” It didn’t sound like she was ready to go back to sleep. I decided to get her up for a shower.

She got up right away and wanted to know where to shower. I walked her to the bathroom. In keeping with her previous line of questions, she wanted me to tell her each step to take.

After her shower, she went back to bed and fell asleep. I got her up shortly after 11:00 so that she would be ready by the time the sitter arrived at noon. Since she was waking up from a sleep, I wasn’t surprised that she was just as confused as she had been earlier. I went to the family room and brought back the “Big Sister Album” Ken had made for her last spring. She took one look at the cover picture of her and her brother. She smiled and commented on the smiles of the two children. She loves that picture. She asked if that was a picture of her. I told her it was. She wanted to know who the boy was. I told her it was her brother Ken. Then I suggested we go to the family room, and I would show her pictures of her mother and father. She liked that.

As we looked through the pictures, she seemed to gain a better sense of who she is. She still had trouble remembering the people in the pictures, but she recognized some of them. As she did the last time we looked through it, she recognized her grandmother, calling her Nana. In contrast, she repeatedly asked me her parents’ names.

This experience and others like it have made think once again about rational and intuitive abilities. Looking at the pictures didn’t help her identify the people (rational ability); however, it did eliminate her confused feeling (intuitive ability). She seemed to have a sense of connection to her family that was calming. She is especially sensitive to the smiles in all the pictures. As we move from picture to picture she says things like, “Oh, look she’s smiling,” “She’s not smiling,” or “Look at his smile.” The smiles have a real impact on her and bring smiles to her face.

My original intent was to let the sitter take Kate to lunch, but I didn’t have Rotary and decided to go with them. That gave me an opportunity get a little better acquainted with her since this was her second time. I had the same good feeling about her that I had last week. Kate did as well. Before leaving, I put in a DVD of Fiddler on the Roof for them. When I returned they were watching.

Kate was tired and wanted to rest a while. When she got up, she wanted to know what she could do. I told her she could work puzzles on her iPad. She didn’t know what an iPad was. She forgot the name of the iPad quite a while ago and often doesn’t know what it does when she sees it. I got the iPad and gave it to her. She sat down and asked me where we were. I told her we were in Knoxville. She said, “Good. I thought we were in New York.” I said, “I thought you loved New York.” She said, “I do, but I like it here. We come here a lot.”

An hour later we left for dinner. Friends we met at Casa Bella had invited us to dinner at an Italian restaurant near their home. We’ve gotten together several other times and enjoyed being with them. We had a good meal and pleasant conversation. As usual, Kate handled herself quite well.

It is becoming increasingly difficult for her to follow conversations. A number of times she stopped one of us to explain something she missed or didn’t understand. I think the problem occurs with the shift of conversation from one person to the next. It’s just too fast for her.

I’ve noticed other things like that. Increasingly, she wants me to simplify things I tell her. It’s confusing to say, “Here are your clothes. Put on your top and pants.” When I do that she says, “Tell me one thing at a time.” When looking at photos, I might say, “Look at this picture of your daddy.” It takes her a while to locate her father even if my finger is on the picture. It’s as though she sees a vast array of stimuli and doesn’t know where to look.

From the time the sitter arrived until we went to bed, Kate didn’t show any unusual signs of confusion. I don’t mean that she didn’t experience any confusion. For example, she never knows where she is and usually doesn’t know my name or hers. What I mean is that she didn’t show any signs of being disturbed by her memory problems. I didn’t specifically ask, but I think she knew I was her husband. I know that sometime during the late afternoon or at dinner she mentioned our two children. Her day was highlighted by her “Big Sister Album” and having dinner with friends. It was a good day.

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“Are you my Daddy?”

After being up at 1:30 and again at 7:45 yesterday, Kate got up for good before 9:30. She seemed rested and didn’t show the same degree of confusion she had shown earlier. She still didn’t recognize me as her husband but wasn’t disturbed by it. She was very much like she was the previous night when she thought of me as a good friend.

We made it to Panera for a muffin just after 10:00. Soon after getting into the car, she asked if I were her daddy. I told her I would be happy to be her daddy. She frowned and said, “So you’re not gonna tell me.” I said, “Do you think of me as your daddy?” She said she did. I said, “Well, I am.” We had a similar exchange at Panera. When I told her I would be happy to be her daddy, she said, “You’re not my daddy.”

A little later at lunch, she said, “What is your real name?” I told her and she said, “You could be my adopted daddy.” I said, “I like that.” She asked my name again. Then she told me that she could introduce me to our server as her adopted daddy. That didn’t happen. By the time the server came back she had forgotten altogether. My interpretation is that she was accepting that I was not her daddy, but she didn’t think of me as her husband. To her it must have seemed appropriate to think of me as someone close enough to be her daddy, hence the idea of her adopted daddy. That may be a nice transition from being her husband. I could live happily with that.

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Thoughts on Telling the Truth (Again)

The issue of telling the truth to a person with dementia is an ongoing conversation. It comes up periodically on the various message boards as well as social media sites like Facebook and Twitter. There seems to be almost universal agreement that caregivers will find that telling the truth can actually be harmful. That happens because people with dementia often live in their own reality. They may believe that deceased parents are still living, that they themselves are living in another place than where they really live, or that someone other than one’s spouse is her spouse. To tell a person that her mother is dead can be hurtful. When a loved one asks where her mother is, it may be much better to say something like “She is at home.” The idea is to keep the answer to something that is brief and clear. There is little need for embellishment.

Up to this point, I’ve been telling Kate the truth except about her diagnosis. I haven’t mentioned her having Alzheimer’s since last summer when I did so on two separate occasions. Neither case created a problem. As time passed, I have been less willing to take a risk. I have been helped by the fact that, until this morning, she hasn’t had a serious concern about why her memory is so poor.

While I agree with the consensus that not telling the truth is often the right thing, I haven’t felt the need to apply that with Kate. That may be because she often asks me where we are, who I am, who she is, etc. It only seems natural to tell her the truth. That has worked well, but recently I have seen signs that I may need to be less truthful with her than in the past. One of those occurred last night.

As we walked from the car to the restaurant for dinner, she called me “Daddy.” Then she asked if I were her daddy. I told her I was happy to be her daddy. She pushed for the truth and asked if I were. I told her I was her husband. Once at the table, the subject came up again. This time when I told her the truth, she looked skeptical. She told me she thought of me as a good friend. She said she liked being with me and felt safe with me. What she said was especially interesting since she had said similar things to me when I assumed she recognized me as her husband. It gave me a different perspective about the things she says about me. I’ve always interpreted them as words that she would only use for a husband, but it became clear to me that there may have been many other times that she has thought of me as a good friend.

To date, I don’t think the truth has caused any problem, but another incident at lunch yesterday came closer to being just that. In that case, she brought up her mother and wanted me to tell her something about her. I began with “She was . . .” Kate quickly said, “Was?” In an attempt to soften the impact of what I had said, I explained that her mother had died thirteen years ago. Then I told her that she had done a really good thing for her mother. I told her that she had cared for her mother the last five and a half years of her life with the help of six or eight paid caregivers. Kate was very sad and teary. As I told her a little more about her mother, she recovered, and all was well. It did make me think about whether to tell her the truth again. She seems to want the truth, but I don’t want to hurt her. Knowing when it is best not to be truthful can be tricky.

Early this morning we had an experience that was a precursor to the one I wrote about in my earlier post. At 1:30, I started to get a cramp in my leg. I got up. When I got back in bed, I noticed that her eyes were open. She looked like she wanted something. I asked if she wanted to go to the bathroom. She did and wanted to know where it was. I told her I would show her. We walked to the bathroom. I asked if she wanted fresh underwear. She did. She thanked me. Before returning to the bedroom, she said, “You must have a wonderful wife.” I told her I did. She said, “She’s very lucky to have you. What’s her name?” I said, “Kate.” As we walked back to the bed, she kept thanking me. She said, “I don’t know what I would have done without you.” Before getting in bed, she asked where we were. I told her Knoxville. She said, “I mean where are we right now.” I said, “We’re at our house.” She said, “We are?” She didn’t press me for any further explanation. I was glad. At that time of the morning, I didn’t want to test my judgment about telling or not telling the truth.

Once in bed, she thanked me again. She seemed a bit nervous, not quite shaking but uneasy. I said, “You’re going to be all right. You are safe. I am right here with you. I’ll always be with you.” It wasn’t long before she said, “I feel better now. Thanks to you. <pause> What’s your wife’s name?” I told her. In a few minutes, she asked again. This time when I told her, she said, “That’s my name.” She was relaxed and soon asleep. I got up to record our conversation and returned to bed at 2:35.

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A Confusing Start

About 7:45 this morning, I saw on the video cam that Kate was getting out of bed. I walked to the bedroom and saw her standing at the foot of the bed. She was glad to see me, actually relieved though I didn’t realize it until a few minutes later. I asked if she wanted to go to the bathroom. She said she did and asked where it was. I walked her there. I left her in the bathroom and went back to the kitchen where I could watch the video cam to see when she was ready to go back to bed.

It wasn’t long before I heard her say, “Hey.” She had cracked the door open. When I got to her, she wanted to know what she should do now. I told her it was still early and that she should rest a little longer. As we walked, she thanked me for helping her. She said, “I don’t know anything. I don’t know what to do.” I told her I would help her. She thanked me again and said, “You’re so nice to me. You make me feel better.”

After she was in bed, she said, “I don’t even know where I am.” I explained that she was in her very own home in Knoxville. She said, “I am?” Then I told her it was our home. She was surprised and couldn’t understand how that had happened. As we talked, she began to relax. I told her I was going back to the kitchen and that she could call me if she needed anything. She asked my name. I told her and said, “Just call my name.” Then I said, “Or you could just say, ‘Hey.’” She repeated “Hey,” and I told her that was all she needed for me to come back. Before leaving, I asked if she would feel better if I sat in my chair beside the bed. She told me I didn’t need to do that. She thanked me again, and I left the room.

This was a moment in which I felt her complete dependence on me. She said it was frightening. I can’t imagine what it must feel like, but frightening seems to come close. Her memory is flying away, but she still retains the ability to recognize she has a problem and can’t understand why. It was a similar experience last summer that led me to remind her that she has Alzheimer’s. I chose not to tell her this time. I decided to focus solely on being compassionate in the words I spoke and in the tone of voice I used. I told her she was going to be all right, that I was with her and would help her. That seemed to work.

I wonder how she will feel when she gets up. It’s quite possible that she may not feel the same level of confusion. On the other hand, I know that someday the confusion will not go away. By then, she may not realize she has a problem at all. I don’t want that nor do I want her to suffer from recognizing how little she knows or understands. What I wish for most is something that can’t be. I wish she didn’t have this disease at all. Like all caregivers in my position, I have to focus on what I can do – make her life as pleasurable and frustration free as possible. That has served us well up to this point. I trust that it will carry us through to the end.

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A Winning Streak

We often hear about winning streaks in sports, but all of us have streaks in our everyday lives. We just don’t keep statistics in the same way. In the first place, we don’t usually categorize the various aspects of our lives. In sports we have such categories as consecutive wins, completed passes, passes without an interception, games with a hit, etc. Even if we did, we don’t go to the trouble of keeping records.

I’m thinking of streaks right now because Kate and I have had a streak of good days for over a week since she got over her cold. She’s still asleep, but I am optimistic that we will continue that streak today. A lot of little things make me feel a day has been good. Her happiness is probably at the top of the list. Something that goes along with that is the nature of our relationship. I work to avoid days when I have to push her to get places. Fortunately, she is good-natured. We work together well. Each of us wants to please the other.

The other day I saw something on Twitter that suggested a caregiver would do well to foster a sense of teamwork between himself and the person for whom he cares. I think that is very much the way Kate and I have worked together. When I push too much, she resists. She has her own sense of time and cannot hurry no matter what. Two days this past week, she had appointments with her ophthalmologist at 11:00 or shortly thereafter. For months, getting up that early has been a problem for her. This week I had no trouble at all. She was very cooperative even though she couldn’t remember why she had to see the eye doctor.

In addition to being cooperative, she is most appreciative. Those qualities are great reinforcers for me since I want to make her life as happy and trouble free as I can. Twice during the night we had experiences that illustrate how well this can go. The first occurred at 10:45 when she got up to go to the bathroom. I got up with her and walked with her. Then I did something that I haven’t done before and won’t do again. I usually wait with her. This time I decided to wait for her in bed. I didn’t expect to go back to sleep before she was finished, but I did. At 11:00, I looked up at the door to the bathroom and noticed that the door was closed. I got up to see if she was still in there. She wasn’t. I found her on the sofa in the family room. She couldn’t have been there long and was still awake. She was very glad to see me and said she didn’t know where to go. I said, “You must have been scared.” She said she was and thanked me. As we walked back to the bedroom, she thanked me again. All of this happened in the span of fifteen minutes, but it was an emotional experience for each of us. Each was glad to see the other, and we were happy as we got back in bed.

She got up a second time just before 6:00. I had just waked up myself and was about to get out of bed. I helped her to the bathroom and got her back to bed. As she always does, she repeatedly thanked me for showing her the way, helping her, and getting her back to bed. As she continues to decline, she is developing a greater sense of dependence on me. Her appreciative response makes me want to do the very best I can to make her life as easy and frustration free as possible.

So, after a string of good days, I don’t see any signs that it should be any different today. I won’t be keeping any statistics. They don’t really matter. What matters is that we are working together to make the very best of a diagnosis that no one wants. We’ve been successful thus far. I plan to keep that in mind as we approach the remaining part of our journey.

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A 3-Card Day

I let Kate sleep until 11:30 yesterday morning. I wouldn’t have gotten her up then, but we had an appointment at 1:30. Here are her first words as she got out of bed.

Kate:             “Who are you?”

Richard:        “I am Richard Lee Creighton.”

Kate:             “What’s my name?”

Richard:        “Kate Franklin Creighton.”

Kate:             “I guess that means we’re married.”

Richard:        “Yes, we are.”

Kate:             “What’s your name?”

We were a little pushed for time, so I decided not to go our regular place for lunch and just get a sandwich at Panera. I didn’t tell Kate where we were going but was surprised that she asked what we were going to eat. I don’t recall her ever asking that before we have even left the house. I told her a couple of the sandwiches she usually gets. Several times before we got there (a 4-minute drive including a stop at a traffic light), she asked again what we were going to eat and if I thought she would like it.

When we arrived, she looked up at the building and said, “What’s that?” After seating her at a table and setting up her iPad, I brought her a muffin. She got started on that while I waited for the meal to be ready. When I brought her lunch, she had one tray with the muffin to her right. I put the tray with her food on her left. After she had eaten half of her sandwich, she went back to her muffin. In a few minutes, she pointed to her sandwich and apple and said, “Is this ours?” I told her it was. She took a bite or two and then another couple of bites of her muffin. Then she looked at the plate with her sandwich and again asked if it were ours. Once again, I told her it was. She finished her muffin and asked one more time about her sandwich before eating the rest of it.

Before we pulled out of our parking space, she looked at the building and asked, “What’s that?” I told her it was Panera and that it was a place to eat. She said, “Oh,” but she didn’t remember that we had just eaten there. As we drove out of the parking lot, I turned and drove by the front of Panera. She looked at the building and said, “What’s that?”

We went straight to Barnes & Noble from lunch and arrived a few minutes before the man we were meeting. I was in line to get a cup of coffee when he arrived. I hadn’t met him before. He works for the development office at the University of Wisconsin. Kate was sitting at a table working on her iPad. I introduced him to her. Then we had a good conversation. I started by asking him if he had been a student at UW. It turned out that he had not and had only worked for the university six or seven years. That led to a conversation about his past experience and happenings on the campus. That was mixed with my telling him about our own experiences there and what I had done since leaving Madison.

We talked for over an hour. Kate was never a student at UW but did work on campus. He and I made numerous references to people or events that she could not recall. In almost every instance, they were things that he must have been surprised about. For example, very early in our discussion I said that we had moved to Madison for me to get my PhD. Kate said, “Really, what in?” I mentioned that Kate had worked for the director of graduate admissions for the English department and who, coincidentally, had later married a friend of hers from TCU. She said, “Who was that?” I also said something about our going from Madison to Raleigh where I taught at NC State. Kate looked surprised and said, “What did you teach?”

This was one of those times when I thought about the little cards I carry that say, “My wife has Alzheimer’s . . .” I slipped it to him after several of her questions. I am sure that helped him understand when she asked other questions. I’m realizing the value of having them with me.

We came back home after lunch. Kate started working on her iPad but soon put it down and rested for over two hours. When I told her we would soon leave for dinner, she sat up and said, “Who are you?”  I gave her my name. She asked her own name. Then she wanted to know my relationship to her. As usual, she was surprised, but this was different. She was very firm in expressing that this couldn’t be. I asked if she would like to see our wedding pictures. She did, and I picked up “The Big Sister” album her brother Ken had made for her last spring. I sat beside her on the sofa and flipped over to the section that had some of our wedding pictures. At first, she had trouble recognizing everyone. After I identified the people, she began to recognize them in other photos though she was far from perfect. She did, however, become quite engaged with all the pictures. Her skepticism about my being her husband was completely over.

As we pulled out of the garage on the way to dinner, she asked my name and her name again. On the way, she asked where we were a couple of times. When we arrived at the restaurant, she asked its name. I told her it was the Bonefish Grill. Once inside, the hostess walked us to a table in the very back of the dining room. I followed the hostess but not too closely. Kate walks very slowly, and I didn’t want to get too far ahead of her. As the hostess and I stood at the table waiting for her, I said, “Have I told you that my wife has Alzheimer’s?” She said I hadn’t. When Kate approached the table, she looked at the hostess and said, “What’s the name of this place?” Kate didn’t understand her. Both the hostess and I repeated the name and looked for a sign on the wall, but there wasn’t one. I should add that we eat at Bonefish every Tuesday night and know the hostess. I am glad I had mentioned Kate’s Alzheimer’s.

Once the hostess left, Kate heard the toddler behind us making some happy noises. She turned around and asked her how old she was. The mother, who was holding the child, said she was three. Then Kate asked the mother, “How old are you?” The mother was taken aback and said, “Thirty-seven.” Kate said, “You’re young to somebody like me.” The woman and her daughter were seated with a group of five other women who would have been about the age of the woman’s mother. A few minutes later, I pulled out another one of my cards, walked over to the woman and gave it to her. As I sat down, she looked at me and smiled. Then she passed the card around to the others at her table.

When our server came to the table for our drink order, Kate said, “What’s the name of this place?” The server, whom we also know, looked surprised. I got another card out of my pocket and slipped it to her. Periodically throughout our dinner, Kate talked about the attractiveness of the restaurant. For her, it was just like the first time she had ever been there.

I wish I could know how you as a reader are responding to what I have written. This was clearly a day when Kate’s memory was at its worst. It is a definite sign of further decline. From my perspective, however, it was a good day. Kate was happy. She was talkative. She was inquisitive. We enjoyed our time together. It saddens me to see her so lost in this world, but that burden is eased when I know that she is happy. There is nothing I can do to change the symptoms that accompany Alzheimer’s. I can, however, see that her quality of life is the best it can be under the circumstances. Days like this reinforce my commitment to do just that.

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Signs of a Cold or Alzheimer’s?

Kate’s cold and accompanying cough continued yesterday. I believe it was somewhat, but not dramatically, improved. It’s been an interesting cold in that her symptoms have been pretty even over the course of the past week. She hasn’t had a fever, and she goes long periods (an hour or two or more) without coughing. She doesn’t go quite as long without blowing her nose, but that also comes and goes.

Her overall behavior, however, suggests she has not been herself. She has been more confused and dependent. She has had greater difficulty working her jigsaw puzzles. She has actually had moments when she didn’t know what she should do with pieces once they were scattered across the screen of her iPad. I don’t mean she didn’t know the exact place to put them; she didn’t know what to do at all. She has also had several hallucinatory experiences. Two of those were a week ago, and one occurred last night.

We stopped at a traffic light on our way home from dinner, and she said, “Is there anything I can do to help you?” This came out of the blue for me. I didn’t know what she might have been thinking and said, “What made you ask that?” She said, “You’ve been going through so much.” I was still confused but decided not to question her. I simply assured her that I was getting along well. I told her that she had always been my support, that she should just continue that. She appeared relieved.

As usual, she worked on her iPad after we got home from dinner. She couldn’t remember how to start, that is, to open the puzzle app. This was not the first time. I showed her as I have done before. Once it was open, I showed her the various options she could choose. I walked away, and she immediately ran into a problem. She hit an arrow at the top left of the screen that took her to the store instead of selecting one of the puzzle options that filled the rest of the screen. That, too, was not the first time, but it is becoming more frequent. When she went back to the puzzles, she worked them for about an hour. Our son called as she was getting started. She said hello with her usual enthusiasm, but then quickly returned to her puzzles. While I was on the phone, she asked me for help several times. Her attention was clearly on the puzzles and not the phone call from Kevin.

When I got off the phone, she wanted to get ready for bed. First, she walked over to me and expressed her concern about me. She made reference to “that man.” I asked if she meant Kevin. She didn’t, but she was unable to tell me who “that man” is. I did grasp that she was again worried about me and the load I am carrying. One might think she was talking about my role as a caregiver, but it was not. I got the distinct impression that it had something to do with my work or volunteer activities. Interestingly, they are minimal these days; however, I am sure hallucinatory experiences often relate to distant memories.

She was tired and went to bed a little earlier than usual. She had done the same the night before. I think this could be related to her cold. After thirty minutes or so, she appeared to be asleep. I joined her thirty minutes later. When I did, I discovered that she was awake and whimpering. I asked her what was wrong. She didn’t (couldn’t?) explain but said, “The babies.” I told her I didn’t understand but wanted to help her. She went on to say, “I do want a baby, maybe two.” I mentioned our having had two babies who were now grown up. She was startled, not about having babies, but that she and I had babies. I told her I was her husband. She strongly denied it. I knew I needed to go in a different direction.

This was another time I felt explanations were irrelevant; she needed comfort. I told her just that and said, “I love you dearly, and I want to comfort you.” She said, “I know you do. I can tell by your voice that you’re not just saying that.” That began what may have been close to an hour of conversation during which she talked, and I gave supportive responses. I never fully understood what it was that prompted her worry. At one point, I asked her if she were afraid. She said she was. I was never able to discover why.

What I do know is that she thought she was young and unmarried. A couple of times she said, “I can have a child. I have one now.” One of those times she put both hands on her stomach as she said this. That may have meant she was carrying a child now. She also responded to me as if she knew I were her husband. I told her I loved her, and she said she loved me. Despite this, I don’t believe she ever recognized that I am her husband. I was just someone she felt very close to. She was very comfortable talking with me. Finally, she relaxed, and we both fell asleep.

It was a week ago yesterday afternoon that I noticed the first sign that she was getting sick. She coughed a few times, and it didn’t sound like a normal clearing of her throat. The next morning it was obvious she had a cold. It was that afternoon that she had an hallucination that involved our working in some kind of education project in another country. At the time I wondered if that could have been a side effect of the Robitussin DM or Zyrtec, the cold itself, or her Alzheimer’s.

One thing is clear. She has been noticeably different this week. I have eliminated the Robitussin and Zyrtec. I am left with the possibility of the cold itself or Alzheimer’s. At the moment, I believe Alzheimer’s is the primary cause and that the cold may have aggravated the situation. Time will tell.