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Things Turned Out All Right Yesterday

After a rocky start yesterday, Kate awoke around 10:45 and was perfectly normal. I didn’t test her to see if she knew our names or our relationship, but she acted as though she did. Before I reminded her that I would be going to Rotary and that the sitter was coming to take her lunch, she was prepared for us to go out together. I thought my telling her I was leaving might change how well things were going. Fortunately, that wasn’t a problem. I suggested that she work on her iPad a few minutes until Cindy arrived. She arrived about ten minutes later. When Kate saw her, she said, “It’s good to see you.”

After Cindy left, Kate was ready to go. It was too early for dinner. We went to Panera for an hour and then to dinner. She was quite tired when we got home. She actually rested a while before going to bed. I think she had not had her afternoon nap. She was in bed by 8:00 although she was awake when I got to bed at 9:30.

Around 4:00 this morning, I felt her move in the bed. She seemed uneasy. I wasn’t sure she was awake, but I asked if she was all right. She said, “I don’t know.” She seemed like she may have been dreaming and that something had disturbed her. She moved closer to me and held my arm tightly. I thought she was frightened and asked if she was afraid. Again, she said, “I don’t know.” This reminded me of the way she was when she got up the first time yesterday morning. She didn’t say anything more. I said, “I am right here with you. You’re going to be all right. I’ll see to that.” She still didn’t say anything. I held her for the next forty-five minutes before she said, “Do we have a wedding?” I told her we didn’t. Then she asked if we have a daughter. I told her we do and that she was already married and had two children. She said, “So we don’t have a wedding?” I told her we didn’t and didn’t have anything she needed to be worried about. I was asleep shortly after 5:00. I’m not sure she was really awake at all during that hour.

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Not a Good Way to Start the Day

“It’s a New Day,” but I’m not “feeling good” this morning. About 7:15, the video cam alerted me that Kate was about to get up. I went to the bedroom to find her confused. I told her good morning and asked if I could help her. She said, “I don’t know. I don’t know what’s going on.” As in most of the other occurrences like this, she wasn’t having a panic or anxiety attack. She just looked puzzled about not knowing “what’s going on.” She was never able to say more than that. Based on past experience, I am sure it was waking up and not knowing where she is, why she is here, and who she is. She didn’t ask, but I gave her my name and hers and told her that she was in our house in Knoxville. I added that she was in her very own bed. She didn’t challenge any of that, but it didn’t seem to reduce her confusion.

She asked me what she should do. I told her that she usually liked to get up to go to the bathroom about this time. She asked where the bathroom was and asked if I would show her. I did and then took her back to bed. She was still puzzled. I told her I thought she just woke up and was groggy. I pointed out the window to our back yard. I reminded her of how often she looks out the window and comments on “all the green.” She seemed to recognize the yard. After getting in bed, she asked where I was going to be. I asked if she would like me to sit in my chair beside the bed. She said she would, and that is where I am right now. It sounds like she has gone back to sleep. There is a good chance that she will be fine when she wakes up again. I’ll just have to wait and see.

Moments like this always bring back memories of my mother. She used to say, “I don’t know what’s wrong with me.” That was when I first recognized how wrong people can be when they say things like “Well, at least she doesn’t know.” It was clear to me that my mother knew something was wrong with her. I can say the same thing about Kate. She understands and is disturbed by what is happening. I am grateful that this is not a constant pattern. Most of the time she simply asks where she is, who I am, and who she is without a hint of fear or anxiety. I think I handle the responsibilities of being her caregiver reasonably well. The part that is the biggest problem for me is seeing her when she is disturbed. I hope we are not in for much more of this.

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A Special Moment to Start the Day

Being Kate’s care partner brings with it the full range of emotional experiences from joy to sadness. As I have said so many times, we have been fortunate to share far more of those at the joyful end of the scale than the other end. Sometimes joy and sadness are intertwined. We had one of those moments a few minutes ago.

I was in the kitchen (my office) when I heard her say, “Hey.” I looked up at the display on my iPad. I didn’t see any sign of her. Then I heard a louder “Hey!” She wasn’t in the bedroom at all. She had gotten up without my seeing her on the video cam. I walked to the back and said, “Where are you?” She said, “I’m here. Where are you?” I walked down the hallway and heard her say, “Here” just before I saw her coming out of the guest room. I said, “I wondered where you were.” She said, “I didn’t know where you were.” I said, “I love you.” She said, “I love you too.” I gave her a hug and said, “Doesn’t it feel good to be with someone you love.” She agreed, and I said, “I hope I am your favorite husband.” She laughed and said, “Who are you?” I told her, and she said, “Who am I?” I said, “Kate Creighton, and you’re my wife.” She said, “I am?”

We started to walk back to the bedroom when I saw pictures of her maternal grandparents. I pointed them out and told her these were special people to her. She asked who they were, and I told her. She was quite interested and wanted to know more about them. I told her they were her mother’s parents. She asked her grandparents names one at a time, and I told her again. Across from those pictures is a photo of the home in which her father grew up. I told her this was an important place for her and explained the significance.

I walked her a little farther and showed her a picture of her father. I said, “This is a very special man in your life. Can you guess you that might be?” She couldn’t. I told her, and she said, “He looks like a good man.” I told her he was. Then showed her a photo of paternal grandfather and her uncle taken with managers of her grandfather’s lumber business. She didn’t recognize them or the photo but was keenly interested.

The next photo was of her mother when she was in her late teens, I believe. It is my favorite picture of her. I told her that she was also someone special in her life. She didn’t know who it was before I told her. It is a photo she likes as well. She said, “She’s pretty.” The last photo was of her father’s mother. Kate had no recollection of her at all. When I explained that she was her grandmother and that she was the first member of the family to attend TCU, she was excited.

It doesn’t seem that long ago that Kate could have walked along this hallway and told the same stories to accompany these pictures. It is sad that her memory is now virtually gone. She can’t remember them at all. At the same time, it was a moment of joy for me to tell her these stories and for her to hear them. It is moments like this that sustain both of as we move into the later stages of our journey.

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Insecurity at Casa Bella

Yesterday was not a typical day. Kate seemed to be in a cheerful mood, but she was also irritable off and on throughout the day. I observed that very early when I told her I thought she should shower before getting dressed. It had been four days since her last one on Sunday. Each of the previous mornings I had encouraged her but let it go when she resisted. I did the same yesterday.

We commonly hear about anger and violence as symptoms of people with dementia. There is another school of thought that suggests that such behavior is not a direct symptom itself but a bi-product of symptoms like confusion and misperception. According to this interpretation, anger and violence are or can be natural responses to the way the brains of people with dementia work (or don’t work).

If I employ this line of thinking to what happened between Kate and me yesterday, I would say that Kate wasn’t just in a bad mood, she may have been responding to the way I told her it would be good for her to take a shower. In fact, I don’t believe I was as gentle in my suggestion as I usually am. If I had thought of a gentler way to do it, she might have willingly agreed to shower. Instead, she dug in her heals. I didn’t push her.

I told her I had her clothes for her, and she thanked me. When I started to help her dress, she was resistant. She said, “I can do that myself.” Ultimately, she had to have my help with her bra and her pants, but she was determined to be as independent as possible. As I helped her, she snapped at me. Then she felt bad and said, “I’m sorry. I shouldn’t have said that.” She clearly understood that was not typical for her. I think her reaction related to my not being gentle enough in my attempt to get her to shower.

While she went to the bathroom to brush her teeth, I went to the kitchen to get her morning meds. Shortly, I heard her call, “Daddy!” I called back from the kitchen, but she didn’t hear me. She called again. “Daddy!” I walked toward the bedroom and said, “Here I am.” This was a time when I thought it was best not to tell her that I am her husband. When I reached her, she looked a little frightened and said, “I didn’t know where you were.”

As we drove to lunch, I played some music that she likes. She didn’t talk much. When she did, it was to comment on the music. She enjoyed it. We had a pleasant lunch. It was as if the problems getting up had never happened. The afternoon also went well. We spent a couple of hours at home. She worked on her iPad a while and then rested on the sofa. After her rest, she wanted something to eat. It was ninety minutes before time to leave for opera night at Casa Bella. I took her to Panera for a bagel. We got home in time to change clothes and leave for dinner. That’s when another problem occurred.

I made a complete change of clothes and had picked out a different top for her. She didn’t want to change and snapped at me. I tried not to push her. She consented, but she wasn’t happy.

As usual, she enjoyed the evening of music. The man with whom we share a table commented several times about her enthusiasm. He and his wife got to observe an example of Kate’s memory problems when she looked at me and said, “And what is your name?” I said, “Richard.” She frowned. I knew that meant she wanted my full name and said, “Richard Creighton.” She frowned again. I said, “Richard Lee Creighton.” That was the right answer.

The biggest problem of the day occurred just before we left. I was seated across the table from her. The seat to my left was empty. I was seated with my back to the singers and moved to the empty seat and turned halfway to the right so that I could see them. When the program ended, I looked at Kate who was disconcerted. She looked at me and said, “Is that you?” It turned out that she had lost sight of me even though I was only four feet diagonally across from her. She was quite relieved to see me.

The man in the seat to my right got up, and I started to follow him out. He stopped to help his wife with her walker. The two of them were standing between Kate and me. I chatted briefly with a man at the next table. When I finished, I went around the couple to see Kate. That’s when I saw that the couple and another man who had been at our table were trying to comfort her. She had been very disturbed because she didn’t know where I was. When she saw me, she said sternly, “Don’t ever do that to me again.” I am sure the three people who were trying to soothe her were shocked that these words expressed so strongly came out of the mouth of someone they had no doubt viewed as very soft spoken.

It amazed me that she had become so anxious in such a short span of time. It couldn’t have been more than a couple of minutes. Of course, with no perception of time, it could have seemed much longer to Kate. I was standing within six feet of her the whole time, but she couldn’t see me. I apologized and told her I would never leave her. As we walked through the restaurant to leave, she continued to be a little upset. My apology must have been too light-hearted because she said, “This is no laughing matter.” By the time we got to the car, she was fine. I played several pieces of music she loved on the way home. That made her even happier. The crisis was over.

It is obvious that Kate’s insecurity is increasing and that I am her “security blanket.” I also think the events of the day illustrate how much her emotional reactions are tied directly to her perceptions of the events around her. Her rational abilities are not working well enough understand what is going on. That misunderstanding leads to insecurity that is sometimes expressed in behavior that is not typical of her.

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More Insecurity and Memory Issues

Yesterday was a good day. I say that largely because Kate was in a cheerful mood. She was that way when she got up. As I have noted before, that doesn’t mean there was any improvement in her memory or confusion. When she appears to be so normal, I am still surprised when she says or does something that would be more characteristic of someone with dementia.

As she cheerfully got out of bed, she said matter of factly, “I don’t know my name.” We started to leave for lunch, and she asked my name and hers. She asked again as we walked from the car to the restaurant for lunch. She seemed perfectly alert and normal. There was no sign of frustration or anxiety. She just didn’t know our names and was matter of fact about acknowledging it.

At dinner, she said, “I want you to tell me what I would say that I want if you weren’t with me?” I told her there are two dishes that she likes and that she should ask for one of them. One is Tortelloni alla Stephania. The other is Tortelloni alla Panna. She tried to pronounce both names and did pretty well, but she wanted to get it right. She asked to see them on the menu. Then we practiced her saying both names several times. As we were doing this, our server walked to the table to take our order. She asked the server to help her say them. The server started to tell her the ingredients in each one. Kate was able to convey that she wanted to know how to pronounce the names. She practiced saying them several times. The server was new and didn’t know about Kate’s Alzheimer’s. I am sure she thought this was a bit strange. Ultimately, Kate was able to give the order herself.

My point is that Kate was unusually interested in knowing what she should do if I were not there to help her. I told her not to worry that I would always be with her, but she was obviously aware of how little she knows. It must have bothered her to think how she would order a meal if she were alone even though I could see no indication that she was disturbed. On the surface, her asking how to order her meal appeared to arise from an “intellectual” rather than an “emotional” basis. On a few occasions, she has also asked me how to get home after eating out. I have tried to tell her, but it is too complicated for her to understand or to remember.

The experience with the sitter yesterday also went well. The only sign that might suggest insecurity came as I left. She said, “You’re going to leave us?” I told her I would be back a little later. She was fine with that.

Last night she picked up a photo book of her father’s family. She spent at least an hour with it. She tried to go through it by herself. I gave her the chance to do that; however, she repeatedly had questions. I ended up standing by her chair as I watched the evening news. That way I could answer her questions as they came up and read sections of the text that she didn’t understand. She enjoyed looking at the pictures of her family. I look at her initiation of things like this as her way of trying to give herself a better sense of who she is. I am glad she has such a great collection of family photos. Working puzzles is entertaining, but the photos give her a better sense of herself and her place in her family.

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Feeling Insecure

The other day I said I had been involved in a series of Twitter messages about people living with dementia and their need to feel safe and secure. I had to admit that I hadn’t given a lot of thought about that. Perhaps that is because Kate has appeared to feel both safe and secure.

I am beginning to pay more attention now. Kate can take credit for initiating that interest when she periodically says “I feel safe with you.” At first, I wondered if she felt some special threat from a person or people around her. After some reading and reflection, I began to consider how uneasy one could feel without a memory. Judy Cornish, the author of The Dementia Handbook, tweets quite a few messages about the importance of safety. Her work has sensitized me even more.

Recently Kate has exhibited more signs of insecurity. Even in the past week, she has seemed particularly needy. Like everything else, this didn’t arise suddenly. For years she has wanted to follow me rather than beside me when we are out. The most common occurrence is in restaurants. She doesn’t want to follow the hostess. She wants me to do it, and she will follow me. At first, I felt a little awkward but quickly adapted. That has its own problems. She frequently falls behind or fails to see me turn and loses me. For that reason, I keep looking back to see that she is still with me.

As noted in previous posts, she started following me in the house last spring or summer. That is when she was no longer able to remember the layout of the rooms. She asks me where the bathroom is every time she needs it. That occurs even when she is seated in a chair in our bedroom that is two feet away from the bathroom. On two occasions in the past few days, she has wanted to hold my hand as we walked through the house.

In the past, she often objected to holding my hand because she saw that as a sign of dependence. Even now, she sometimes rejects my hand when offered. The more common pattern, however, is her asking to hold my hand. This began when she was walking up and down stairs or up and over curbs. Now it seems to occur in public places where she fears she might get lost. I know this because she has specifically mentioned it. Previously, she didn’t appear to be fearful of getting lost at all.

This insecurity extends to more mundane things than getting lost. At restaurants, she has periodically asked me if her glass of tea is hers. That is becoming much more routine. When Ken and Virginia were here, they got to observe that several times. She doesn’t want to do the wrong thing and wants to make sure she has the right glass.

At home, she asks, “Where do you want me?” or “Where should I go?” When I put her medicine on the table or island in the kitchen and tell her these are her pills, she forgets and asks if they are hers or if they are for today or tomorrow. After bringing her nightgown to her, she doesn’t start to put it on right away. When she is ready for bed, she asks if it is all right to put it on. She asks if she should get in bed. The list could go on and on. Once again, she doesn’t know what to do next and doesn’t want to make a mistake. She depends on me to protect her from doing the wrong thing.

I’ve also noticed signs of insecurity when I leave her with a sitter. Sometimes she asks if I can stay or go to lunch with them. Other times she asks if she can go with me. Recently, she told the sitter she would rather rest than go to lunch right then. She ended up resting the entire four hours I was gone, and she hadn’t had breakfast. I think Kate might have felt insecure going out with her. With the same sitter yesterday, it went quite well. She wasn’t the least bit bothered when I left and seemed fine when I returned. After Cindy left, however, she said felt better when I was with her.

The most dramatic example of her insecurity occurred Sunday before we were to attend a musical concert. I dropped her and a friend off at the theater while I parked the car. When I returned, I discovered that she felt sick. I decided we should leave. She didn’t want me to leave her while I went back for the car. She seemed to get better on the way home. She rested at home and never showed any further signs of a problem. I do know that she needed to go to the bathroom. Apart from that, I never noticed any other signs of illness. She was fine the next day. I think she just felt insecure with our friend whom she can’t remember.

One other little thing occurred yesterday morning. As I led her from our bedroom to the kitchen, I automatically took her hand. Often, when I do this, she resists. This time she held it firmly all the way to the kitchen. Shortly thereafter, we were on our way to Panera before going to her dermatologist. She thanked me without saying why. I thanked her and said, “I love you.” She got a sad look on her face and tears welled up in her eyes. As we turned left into the street leading to the restaurant, she grabbed my hand. The turn must have been unexpected, and she was frightened. It was less than a block to Panera, but her fright continued.

Last night at dinner she wanted me to sit on the same side of the booth with her. We have done that a number of times in the past, but this was quite unusual for her to request that. The way she asked it seemed like she would feel better if I sat closer to her than across the table.

All of these things and more have made me more mindful of how significant being safe and secure can be to someone with dementia. I need to be especially sensitive to this in the days ahead.

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A New Marker on Our Journey

This may not be a big thing for anyone else, but it is symbolic of the recent changes in our lives. As we left the car to enter Panera this morning, I said, “We’re going to get you a muffin.” Kate said, “What’s a muffin?”

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Understanding What’s Going on in Kate’s Head

You might think that by now I would have a pretty good grasp of what Kate is thinking and feeling. I spend almost all of my time with her. I try to be a careful observer. I’ve read a good bit about others experiences and their insights, but what strikes me most is how little I really understand. I often relate my impressions and my guesses as to why she does what she does. I hope, however, that I never suggest that I have a firm understanding of everything. I don’t. Yesterday morning I had an experience that illustrates how wrong I can be.

Kate got up for the day about 8:15. She was happy and seemed very clear-headed. I didn’t see any sign of grogginess. She called me by name at least twice after getting up. I never asked, but I was confident that it was one of those times when she knew my name and hers and that I am her husband. Except for helping her dress, it seemed like a morning we could have had pre-Alzheimer’s.

On the way to Panera, we talked a little about our marriage. As we drove up to the restaurant, she said, “And what is my name?” I told her and she repeated it. She quickly forgot and asked me again. Then she said, “If someone should ask, how should I introduce him?” I said, “Who?” She said, “Him sitting across from me.” I said, “This is Richard Creighton.” It turns out that’s what she wanted, my name, but she was asking in what she thought was an indirect way. All the while she behaved as though her memory was perfectly normal. She fools me like this on a regular basis. No wonder she can be with other people without their sensing how far along she is or that she has Alzheimer’s at all. How many people with dementia do you suppose we confront during the course of our daily lives without suspecting a thing?

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A Rough Start Getting to Our Routine

Yesterday I woke Kate at 12:15 so that we could have lunch before picking up a church friend to attend an operetta concert in the afternoon. It was one of those mornings when she is quite confused and didn’t come around very quickly. She didn’t know anything. Who I am. Who she is. Where she was. She felt very insecure, but it was similar to the last time in that it was not a full anxiety or panic attack. Fortunately, she responded positively to me. She wanted me to hold her hand going to the bathroom and didn’t want me to leave her. Just before leaving the bathroom, I did or said something she didn’t like, and she snapped at me. Then she apologized and started to cry.

After she was dressed, she wanted to hold my hand as we walked to the kitchen to get her meds. She continued to whimper a little. She kept asking me if I were her daddy. I told her I was her husband. Each time she couldn’t believe it. When we got to the kitchen, she called me daddy and then said, “Are you my daddy?” I said, “Would you like me to be your daddy?” She responded enthusiastically that she did. I said, “I would be happy to be your daddy.” She asked if I really were. I told her the truth. She accepted that but not with enthusiasm. I believe we are going through a transition in which she often thinks of me as her father. As that happens, I will be much less likely to tell her the truth. Right now, I sense that she still wants the truth and is able to handle it. This is one more thing that demands taking it one step at a time and making an informed judgment as to what is best.

While she was taking her meds, I brought her the “Big Sister” album. She reacted the way she usually does. She commented on the smiles and the children’s eyes. Then she asked if she could take it with us. I told her she could. We took it to the restaurant where she continued to enjoy the photos until the food arrived. By that time, she was herself again. Leaving the restaurant, she said she wanted to rest as soon as we got home. This now seems an established habit. I explained that we were going to a concert. She didn’t complain.

When we arrived at the concert hall, I let Kate and our friend out and then parked the car. When I met them in the lobby, I learned that Kate felt sick. She couldn’t explain what it was. She just didn’t feel right. She seemed relieved that I was there and didn’t want me to leave. She was willing to go ahead and take a seat in the concert hall, but I decided that we should leave. It just wasn’t worth the chance. Our friend said she would leave as well. I told her I would be happy to come back for her. She didn’t want that. Just then, a mutual acquaintance walked up and spoke to us. She asked if he and his wife could take her home after the concert. He was happy to do so, and we went home. As we walked to the car, she wanted a bathroom. I asked if she could wait until we got home. She said she could. Once we were home and she had been to the bathroom, she felt better. That was when she finally got to rest and did so for two and a half hours before we went to dinner.

I think her problem was twofold. First, she was having abdominal action and was uncomfortable. Second, I think she felt insecure being with someone who appeared to be a stranger to Kate. Once I arrived in the lobby, she did not want me to leave her, not even to get the car. When we got home, it was the same. I held her hand all the way to the bathroom. She didn’t want me to leave her.

She was fine from the time we went to dinner until we went to bed. Having heard stories from other caregivers, I suspect we might see more days like this. The good news is that our track record for late in the day is quite good. I only remember one evening when she had a panic attack. Otherwise, it has been the most consistently positive part of our day. I often wonder if that is because it seems to be the most relaxed time of day.

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Reflecting on Ken and Virginia’s Visit

Visits with friends and family have always been important to Kate and me. That’s true for most people; however, they have played a more significant role for us since Kate’s diagnosis. I’ve been especially mindful of that during Ken and Virginia’s visit with us the past few days. I hated to see them go. The fact that Ken was diagnosed with Alzheimer’s almost five and a half years ago has heavily influenced our relationship. It’s not that we talk a lot about dementia itself. We don’t do that at all in Kate’s presence since she no longer remembers that she has the disease. I don’t see any reason to tell her. We do, however, have such conversations before she gets up and when she rests.

What is more important is that they have such a clear understanding of what this journey is like. They may have picked up a few things from reading this blog, but most of that comes from their own personal experiences. That makes a difference in our interaction when we are together. When they are here, I have a feeling the three of us are partners as caregivers for Kate. They understand how to relate to her in a way that is difficult for just anyone else to do. I feel a load is taken from me. I still get her up and see that she is dressed and ready for the day, but when we are together, she interacts with the rest of us. The fact that we share a common set of experiences as part of the same family is also important. That expands the range of topics we can talk about in ways that couldn’t happen with even our closest friends.

Ken himself has taken steps to remain close to his sister. One of the best things he has done is to have given her the “Big Sister Album.” With 140 pages of photos covering their lives from Kate’s birth to January 2018, it has provided countless moments of pleasure for Kate since he gave it to her a year ago. We keep in on a coffee table in our family room. The cover photo of her and Ken when they were about four and two catches her eye almost every day.

Because it contains so many memories of their lives including their extended families, Virginia and I have enjoyed letting them take some time just to themselves to go through it. They looked at it for almost an hour yesterday afternoon. After dinner last night, they went through it again. This time Virginia sat across from them. When they had finished, Kate put it down. Then Ken said something about the cover picture. She didn’t know what he was talking about and showed her. She didn’t remember who the children were. Ken told her. She seemed confused about Ken in the photo and Ken sitting beside her. It didn’t appear that she remembered that they are the same person. As they moved to other photos, she did refer to Ken by name. I was never quite sure what she understood and didn’t.

As Kate continues to decline, there is another aspect to visits like this. Will this be their last visit together? None of us expects this to be the last, but we don’t know. Ken and Virginia are planning to return in the fall. How will Kate be getting along then? She won’t be the same . How will that affect our time together? Like so much of this journey, we just don’t know. All four of us are living in the moment. One step at a time. That has served us well thus far. I trust that it will in the future. In the meantime, I will savor the memories of a very pleasant visit. I wish Kate could do the same, but she enjoyed the moments.