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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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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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Some Things Work. Some Don’t

I’ve often thought that a large part of caregiving is either preventing or solving problems. I haven’t tried to keep a tally of my victories and losses, but we seem to have gotten along reasonably well. Of course, one of the reasons is that I keep discovering things that Kate can’t do. That’s when I grasp that I am the one who has to change and adapt to what she is able to do.

In yesterday’s post, I mentioned that I had taken photos of the primary screens that she faces when working her jigsaw puzzles. I thought that was a pretty clever idea. When I shot each photo, I put my index finger on or up against the button or place she needs to touch in order to pull up the next screen. How could I go wrong?

It’s not really hard at all, to go wrong that is. All you have to do is think like someone who doesn’t have Alzheimer’s (that would be me) instead of one who does. Kate couldn’t connect my photos with what she was seeing on her iPad even though they were almost identical except for my finger in the photos. I worked slowly with her for about fifteen minutes before I could see that what I was doing was causing her more frustration than the problem I was trying to solve. It is actually much simpler for her to ask me what she should do next than to translate my pictures and do it herself. When I stopped to think about it, her system was working for her all along. I was really addressing my problem of having to get up from my chair to help her.

Her most critical problem seems to be her eyesight. That’s true whether she is looking at the screen on the iPad or my photo of the screen. That relates to her Alzheimer’s and not to the physical properties of her eyes. As well as I can understand it, her problem is knowing where to focus her attention. She is faced with an array of stimuli and is confused about which one(s) to attend to. She does, however, choose the correct ones most of the time. I’m guessing that because there are times when she goes for a good while without asking for help. Other times I see that she has chosen the correct one. I don’t know how to explain that. It’s as though she knows one minute and forgets in another.

One of the most frequent problems she encounters occurs when she touches a button for the store located in the upper right-hand corner of the screen. When she does that, she is presented with a large collection of puzzle packs for purchase. When she touches a puzzle pack, she gets a screen asking for the password. Then she is stuck because she doesn’t know it. That is a time for help. The button for the store is small enough that I am surprised that she sees it. She often can’t see the button that says “Play” that scatters the pieces so that she can reassemble the puzzle. It is about three times the size of the button for the store. I think there are so many pictures of other colorful puzzles behind the “Play” button it is too difficult for her to see the green button she should touch. I think I will continue showing her what to do each time she runs into a problem. In time, that may help her learn to touch the correc button more often than she is currently doing, but, perhaps, it won’t. She depends so heavily on her puzzles for entertainment I will do everything I can to help her continue with this pastime.

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What makes a day “good”?

Yesterday, I saw a tweet by someone who produces podcasts on dementia. She mentioned that she had interviewed someone with dementia in one of her early programs, and she was still doing “pretty well” a year later. That made me think about the way Kate is doing and my reports of “good” days. It’s hard for someone to understand what that can mean. Was her memory better? Was there less confusion?

If we went from couple to couple, we would probably find differences in what they call a good day. I also think there is some change over time. If yesterday’s experiences had occurred in the early years after Kate’s diagnosis, I would have considered it a bad day. It was another day when she didn’t know who I was when she got up. That never occurred until the past six to eight months. I have come to accept that now. The same thing would have had a dramatic impact on me in the early years.

More than anything else, I consider it a good day when Kate is happy. Yesterday she was very happy. She joked with me a good bit. I regret that I can’t remember all the funny things she said. She was upbeat all day. Nothing seemed to bother her. She wanted to sleep longer when I woke her, but she got up without objecting. We had a little time between lunch and her massage. I showed her the three-ring binder of information about her and her family and about our lives together. She loved looking through it. She wanted to nap about twenty minutes before leaving for her massage. She got right up when I told her it was time to go. After the massage and a hair appointment, we had a short period of time before dinner. She said she was tired and wanted to rest. I asked how she would feel if we went to dinner right then. She said she that would be good, and we were off again. That meant that she didn’t get to rest as much as she would have liked. I thought that was good, especially when she went to bed about forty-five minutes earlier than usual. That should make it easier for her to get up this morning.

I should also say something about her massage since she didn’t have a good experience last time. I think she had forgotten what a massage was like and was surprised and confused by what the therapist was doing to her body. Before yesterday’s massage, I suggested that the therapist approach her as though this were the first one Kate had ever had. I don’t know that that made a difference, but Kate was fine when we left. I suspect that she was in such an upbeat mood that she was able to deal with massage more easily.

You might think by what I have said that she is typically depressed or in a bad mood. That is not so at all. On occasion, she has both experiences, but they are infrequent and short-lived. The difference yesterday was that she was so unflappable and upbeat. I find it uplifting for me when she is that way. So a good day doesn’t mean she doesn’t exhibit the symptoms of Alzheimer’s. Her memory and confusion are not any better, but she goes about her day as though everything is all right. I try to do the same. I think we’re both pretty successful. We focus on what she can do, not what she can’t and feel grateful.

Like other caregivers, my primary goals are (1) to keep her feeling safe and secure and (2) to keep her happy. Yesterday those goals were met. It was another good day.

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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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Sleep and the Monday Sitter

It was almost a year ago that Kate began sleeping later. That has continued to the present although she sometimes surprises me by getting up much earlier. During the past month, she seems to have had less trouble getting up even when I wake her. I am doing that more now, especially on Mondays. That’s the day the sitter comes an hour earlier (noon) than on Wednesday and Friday. We have had a new sitter, Cindy, for four weeks. On two occasions, Kate hasn’t gotten up the entire four hours she was here. I have a sense that Kate didn’t feel as comfortable getting up with her as she did with the previous sitter.

That is leading me to make an adjustment in the way I prepare Kate. Yesterday, I made sure that Kate was up and dressed before Cindy arrived. In fact, we were ready early enough to make it to Panera for Kate’s muffin. We returned home at the same time Cindy arrived. That made for a smooth transition.

I made another change I feel good about. In the past, I would have gotten lunch for Kate. That meant that Kate and the sitter had a full four hours to fill. A year ago that would have been no problem. Kate and the sitter regularly went to Panera for part of the time and spent the remaining time at home. Since that time, Kate has not wanted to go to Panera with the sitter. I suspect she felt less comfortable going there with a sitter as she became more dependent on me. I have kept them occupied by providing DVDs of musicals as well as musical videos on YouTube. On some occasions they have spent the whole four hours watching them.

I’ve been looking for another diversion and think I have found something for them on Monday. Although I enjoy taking Kate to lunch, it is just too rushed for me that day. Even before Kate started sleeping later, I were too pressed for time getting her to lunch and back home by noon to meet the sitter. Sometimes I’ve asked the sitter to meet us at Panera or wherever we were having lunch that day. Yesterday I decided to have Cindy take Kate to lunch at Applebee’s. I thought that would offer them an informal situation where they could visit over lunch. That went well. Cindy said they were there quite a while. I plan to do that again.

I wasn’t surprised to find that Kate was asleep when I returned at 4:00. She has often napped in the afternoon, but that has become more common lately. It is not unusual at all for her to get up in time for lunch and then take a nap immediately after lunch. At first, I was concerned that she might have trouble going to sleep at night, but she didn’t. Recently, that has changed. She used to go to bed around 8:30. Now it is closer to 9:30 and sometimes 10:00. In addition, she doesn’t fall asleep as quickly as she used to. She is almost never asleep when I come to bed.

I haven’t worked out a plan to address the issue. Since it has been easier to get her up in recent weeks, I may try getting her up a little earlier. I would like that. That would enable us to have a more predictable lunch time. Like so many other things, I’ll have to see how it goes and be flexible.

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In-Home Care

Yesterday someone I follow on Twitter reported a success he has had with a sitter for his wife who had told him, “She’s just like my sister.” I wish I could say the same about Kate and her two sitters. Her relationship with them seems to fall far short of that. It has been one year and five months since I engaged an agency to provide sitters four hours each Monday, Wednesday, and Friday afternoon. On the whole, it has gone better than I imagined, but there have been times when she wanted me to stay with her. That made it difficult for me to walk away. It was very much the way a parent feels when leaving a child at home, school, or a child care center.

Recently, we have had more success, and it involves both of our sitters. We have had to replace three of the Monday sitters. That wasn’t because of any dissatisfaction. Each of them has involved health issues of the sitter or her family. The one we have now has been with us three times. Kate was asleep the whole time she was here on her first visit. Kate has received her warmly the past two times she has been here. The two of them seem to be getting along all right. The first visit they spent the whole four hours watching YouTube videos of musical performances. The last time they watched Fiddler on the Roof. I am optimistic that will continue to go well.

We have been fortunate that the Wednesday and Friday sitter is the same one who started with us. I wouldn’t say that Kate thinks of her like a sister, but she is comfortable with her. Yesterday was a good example. When Mary arrived, Kate had just started looking at her “Big Sister” album. I suggested that she move to the sofa so that she and Mary could go through it together. Kate was happy to do that. When I told Kate goodbye, she didn’t express any disappointment. Her attention was focused on her album. I felt good when I left.

When I got home, they were both in the family room. Mary was watching TV, and Kate was resting in a chair. Mary told me they had spent some time with the album and then they had gone to Panera for a while before coming back to the house. I had left the TV in our bedroom set on YouTube in case they wanted to watch videos, but they hadn’t done so. I was happy that they had amused themselves without my having to structure too much of their activity. They seem to have gotten along well. Kate didn’t say anything that would have made me feel otherwise. I haven’t ask Kate how things went with the sitter in a long time. She never remembers, but I am encouraged that she doesn’t show any signs of bad feelings about Mary. More importantly, when I see them together as they were when I left, I can tell that Kate is quite comfortable with her.

I am still wondering when I might add extra help. Financially, there is no obstacle. We have already met our 90-day out-of-pocket costs for our long-term care insurance. The company will pay the total costs up to fifteen hours a day, but I don’t currently feel the need to have more time away. More importantly, I want to spend as much time as I can with Kate as long as we are able to enjoy doing things together.

I should add that I do sense the effects of the increasing responsibility of Kate’s care. I am discovering things I have left neglected or totally forgotten. One of the things I wonder is whether the greatest help would be overnight or during the day. I am getting up at night with her more than in the past, and I don’t always get right back to sleep. I could easily see that having someone here overnight could be of benefit. That would probably mean our moving to separate bedrooms. I’m a long way from being ready for that, but I know that time will come. I’m not going to worry about it now. In the meantime, I’ll continue with the status quo. I’m happy with it.

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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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Thought for the Day

Yesterday morning I saw this tweet from Judy Cornish (The Dementia Handbook). She is a vocal advocate of the importance of tapping into the intuitive abilities of people with dementia. I believe this particular tweet is also relevant for our other social relationships.

Whenever I am with someone experiencing #dementia, I assume the role of mood creator. I make sure that I am not radiating sadness, concern, or amazement at their impairments. For both of us, I am looking for something beautiful, funny, or heartwarming to enjoy.

Cornish also quotes Maya Angelou who said, “People will never forget how you made them feel.”