Posted on

Another Social Experience

Kate and I are in Nashville today where we plan to meet our friend, Ellen, who is in a memory facility here. Because Kate sleeps so late in the morning, we came yesterday afternoon to have dinner and spend the night before our visit this afternoon. I have found that works better than rushing her in the morning so that we can make it a day trip.

For the second time in two weeks, I had arranged to meet another Twitter friend, Joan, who lives on the east side of Nashville. We met at a Cracker Barrel about 3:15 and chatted for a little over an hour before going to our hotel. I am glad to say this was another social situation in which Kate was quite at ease and talkative. It was as though she had been yearning to talk with someone and found a good listener. Once she started, it was hard for her to stop. It was good to see her so engaged in conversation.

As I reflect, I think there were several things that made our meeting such a success. First, there was just one other person with us. That meant there was no distracting conversation that can occur when there are four or more people. Second, the way we were seated lent itself to more conversation between Kate and my friend. When we took our seats, I deliberately put Kate directly across the table from Joan. I sat beside Kate. Third, Joan is a very warm, friendly person. She immediately gave her attention to Kate who became a key person in the conversation. Fourth, one of the good things about initial meetings like this one is that people discover things they have in common. It wasn’t long before we learned that Joan had been a librarian. That opened the door for Kate to talk about her own experience in the field.

Since Joan and I have been Twitter friends, I would have enjoyed talking more with her about her own experience as a caregiver as well as her blog. I was glad, however, to let that go in order for Kate to have such a good experience.

There were a couple of other things worth noting. One is how well Kate was able to communicate without having a memory to draw on. Of course, that means that some of the things she said weren’t really true. For the most part, Joan probably didn’t notice though I did. Much of the conversation didn’t require much in the way facts. Kate could talk about her feelings for her work and her family.

The other thing is that Kate’s Texas pride has increased substantially in the past few years. As we were walking out, someone overhead Joan’s voice and asked where she was from. When she said, “Nashville,” the man told her she didn’t sound like it. Then she said she was originally from Long Island. That began a somewhat more extended conversation between the two of them. While they were talking, Kate tried to interrupt them to ask the man to guess where she was from. It was very much like what a child might do. I got her to hold back for a minute. When she finally asked her question, he said, “Where?” She couldn’t remember. I was standing behind her and whispered, “Fort Worth, Texas.” She repeated it in perfect timing. He might not have noticed her slip.

I was very glad that we stopped to meet Joan. My own purpose was to meet face to face with a woman I had known only through brief tweets. The bonus, like our meeting two weeks ago, was seeing how much Kate enjoyed herself.

Posted on

Social Situations

Yesterday we were in two different social situations. The first was at lunch. The other at dinner. Kate responded to the two of them quite differently. Coincidentally, both occurred at Casa Bella.

We had lunch with a friend, Lillian, who is with the health foundation on whose board I served for nine years. Kate has met her on several occasions but can’t remember her. That didn’t matter. She got along quite well. We got off to a good start when we went inside the office to meet Lillian. We were warmly greeted by the receptionist whom I hadn’t seen in quite a while. That was followed by another staff member who passed through the reception area. We chatted briefly before Lillian came out. I should add that most of the staff is aware of Kate’s Alzheimer’s and have always been attentive and kind to her. When Lillian walked out, she was carrying a small basket of flowers for Kate who was thrilled to have them.

Although our lunchtime conversation involved a good bit of talk about the foundation, Lillian was good about speaking directly to Kate. That was especially true at the outset. That enabled Kate to feel she was an integral part of the conversation. I asked Lillian to tell us about her recent experience with neck surgery. One might think that it would have been difficult for Kate to follow and understand. I am sure that it was; however, she did grasp that Lillian was out of the office a while and that the recovery was not easy. Her eyes filled with tears as she reached out to take Lillian’s hand. Kate was touched.

A little later, Lillian invited us to an open house at a camp for deaf children supported by the foundation. She explained to Kate that we had paid for a number of children to attend. Kate was touched by that and wants to go.

Except for the few times she picked up or pointed to her glass of tea and asked if it was hers, an observer might not have recognized that she has Alzheimer’s. Lunch was a good experience for her.

Dinner was quite different. I think she was confused from the start. Although we sat with the same couple we always sit with, we were joined by three other people. At first, I was seated diagonally across from Kate. That meant that she forgot where I was several times. I moved to be next to her. She forgot that I always order for her and was nervous about ordering herself. I told her I would take care of it, but she couldn’t remember. She repeatedly picked up a separate bar menu and tried to read it. One time she asked the woman next to her to read it for her. Each time I explained that it was the bar menu and that I was taking care of or had ordered her meal. Once we had ordered and the menus were removed, she didn’t have to worry about that anymore.

Then we faced two additional problems. First, the noise was so great before the music started that it was hard to hear what others at the table were saying. In addition, Kate was in the middle seat of the three seats on our side of the table. No one was seated across from her. The noise was the greater problem, but I am sure she felt alone because of the seating arrangement.

The second problem of the evening was the music. It was jazz night. The musicians were outstanding, perhaps the best we have heard there. Typically, however, the program includes a predominance of old standards with the vocalist playing a central role. Last night, it was almost entirely instrumental. I think there were only three standards. Kate didn’t seem unhappy, but she didn’t express any of the enthusiasm that she normally does.

On the way home, she was fine. The contrast in the two situations was striking and illustrates the kind of situations that are easier for her than others. I may need to be more sensitive to this in the future. It is also possible that we might drop the jazz night before I feel the need to do that for the opera and Broadway nights. Coincidentally, I spoke with a church friend yesterday morning. She had mentioned our getting together for lunch. She said something about inviting a couple of other people. I told her that Kate does best with just one or two people besides us. I’m glad I said that.

Posted on

How I’m Feeling

Considering Kate’s recent changes, it’s fair to ask how I’m doing. Let me try to answer that. By now, you know that I am bound to say, “remarkably well,” but it’s more complicated than that. Like Kate’s spirits, mine go up and down in about the same proportion as hers. As I have said before, “When she’s happy, I’m happy.” That implies there are times when she is not happy. That is true for both of us.

After Kate’s unusually happy day a couple of days ago, yesterday and the day before have been a little different. It’s not that she was sad or depressed. She wasn’t. It was that the symptoms of her Alzheimer’s seemed to be more evident. There wasn’t anything new. She just seemed more like she was drifting away, somewhat distant. That was particularly true last night.

At dinner, she asked my name several times and asked what I like people to call me. I said, “Richard.” She asked if that is what she should call me. I told her that would be fine. When she asked, she did so in the very natural way she usually does. What was different was that my name didn’t seem to register with her at all. It didn’t seem any more familiar than the name of the restaurant at which we were eating.

Our evening after dinner was also a little different. She was very tired and wanted to rest about 7:30. I suggested she could get ready for bed. At first, she just wanted to rest on the sofa. I told her it was getting close to bedtime, and it might be better to get ready. After getting into bed, she asked my name in much the same way she had done at dinner. After two or three times, I asked if she knew how we were related. She didn’t. When I told her we were married, she couldn’t believe it. I gave her a little information about our courtship and our wedding. That seemed to ring a bell, but she soon asked my name again. I told her and didn’t say anything more.

She has been gradually drifting way over the past few weeks. That means more moments of sadness for me. Like all things, I knew this would happen eventually, but it is the reality that has the greatest impact. I know that Kate’s condition will only get worse.

The good news is that I have a lot of things to keep me occupied. This blog is one of them. I am editing a book of emails I wrote under my dad’s name the last few years of his life. I am also writing an article for someone else’s blog. I am active on Twitter and with the United Way, Rotary, and the health foundation on whose board I served for nine years. In addition, I donate platelets every 3-4 weeks.

Of course, my primary role is that of Kate’s care partner. While that involves stress, it also incorporates a considerable amount of pleasure. I am thinking specifically of all the social contacts we have in connection with our meals and the many ways in which music plays a role in our lives. Beyond that, I derive satisfaction from helping Kate get through each day. She can’t do it on her own. I am glad to be here for her.

On balance, I believe that I am doing “remarkably well,” but there is no question that there is more sadness in my life as I watch her decline. I can work to minimize it, but I can’t escape it.

Posted on

Morning Incident

I continue to celebrate the fact that Kate and I have gotten along so well, but that is not to say everything is all right. As she sinks further into the depths of Alzheimer’s, she has become much more insecure and dependent on me. I have mentioned several times when she has experienced attacks of anxiety or panic. Something similar, though less intense, occurred yesterday morning.

Watching the video cam, I noticed her turning over in bed. I thought she might want to get up for the bathroom. For a short time thereafter, she didn’t move or make a sound. Then she said something that sounded like “Hey.” I headed to the bedroom. From the door, I saw that she was awake and looked relaxed. She didn’t say anything. I walked over and sat down on the bed. She looked uneasy. I said, “You didn’t know where I was.” She nodded, and tears welled up in her eyes as though she was about to cry. I said, “You probably didn’t know what to do.” She nodded again, and I said, “You don’t have to worry. I am always here. I would never leave you alone.” I talked with her a few minutes. She felt secure again. Then I asked if she would like to get up or rest a little longer. She wanted to rest. I asked if she would like me to bring my computer into the bedroom and stay with her. She did. In a few minutes, she was sound asleep.

This was a little problem. It was not intense, and it lasted only a short time. Had I not gone in when I did, she might have become more worried, at least for a longer time. It’s a good reminder of how important it is to be with her and to be observant. It is also a sign of her insecurity. I don’t find that surprising. If I didn’t have any memory, I would be frightened as well.

Follow-up

I remained in the room with her until it was time for me to get her up for lunch. She took a shower and then got back in bed. It took me three tries over thirty minutes to get her up again. I was careful not to push her. When she finally got up, she wasn’t smiling. I asked if she were upset with me. She indicated that she was. When I asked why, she said, “I don’t know.”

I helped her get dressed, and she seemed fine when we left for lunch. She was definitely not as cheerful as she was yesterday, but we had a nice time.

The rest of the day went well. We relaxed at home until time for dinner. She did not nap at all. That is very unusual. She worked on her iPad. After dinner, we watched our granddaughter’s high school graduation online from Texas. She received her diploma early. Then I took my shower and prepared for bed. To my amazement, Kate continued to watch for another hour even though she didn’t know anyone. I went in to bring her to bed. She said she wanted to sleep on the sofa where she was sitting watching the graduation. I encouraged her to come to bed, and she finally consented.

I don’t know what was going on in her brain, but she wasn’t as happy as she was the day before. Once in bed, she was very relaxed and seemed fine. I can’t help wondering what she will be like this morning.

Posted on

Kate was in an especially good mood yesterday.

Most of the time Kate is good-natured. That is one of the reasons life has gone so well for us. There are times when she is low. Those are usually times when she is more mindful of lack of memory and inability to function the way she should. There are other times when she is unusually upbeat. Most of the time, she is somewhere in between the two extremes.

Yesterday she was in an especially good mood, and it lasted the entire day. I’m having difficulty thinking of a word that captures it. There are two things that were different. The first is that she smiled a lot. The second is that she was very agreeable and easily “rolled with the punches” when things didn’t go her way. Yesterday was the first time she has had a sitter in three weeks. I wondered if she would feel uncomfortable when the sitter arrived and I left. That was no problem at all. She seemed happy to see the sitter and not bothered in the least when I left. The same was true when I got home. She was glad to see me, there was no sign of relief as sometimes happens. She just seemed happy and nothing could change that. Above all, I didn’t see any sign of concern over Alzheimer’s symptoms.

This is not to say that her memory was any better. In fact, she seemed so happy that I found myself thinking of her the way she was before Alzheimer’s. That was quickly erased when she would ask me something like “Where is the bathroom?” in our house. I did, however, get the impression that she remembered I was her husband all day or close to it. As we neared time for bed, she said, “I want to thank you for your patience with me.” I think that was prompted by my helping a number of times with her puzzles. Shortly after that she said something that clearly acknowledged that we were married. Just as quickly that was followed by her asking my name and hers. I was just grateful to see her so at ease and happy all day.

Posted on

Another Bedtime Conversation: An Example of Kate’s Intuitive Thought/Ability

In yesterday’s post, I talked about the challenges that Kate faces in some types of conversations. I also noted that we converse about as much as we did before Alzheimer’s. I failed to say that until I took her off of Trazadone a year ago, she didn’t talk much. Most mealtimes we hardly spoke at all. Looking back, I think she may have been taking a higher dose than she needed. She was very sleepy. I am glad to say that is no longer an issue. We do have conversations, and some of those are unlike anything I could have imagined. Night before last we had one of those.

As usual, Kate was still awake when I got into bed. I moved over close to her and commented on what a nice day it had been. I told her I loved her. She said, “I like you. I even think I love you.” She went on to say that she was not ready to marry me. From there, she took us in a very different direction.

She talked about a “project” that she was thinking about. She never got specific, but she wanted to do something for people who have chronic financial problems. She expressed a desire to recruit a large number of people who could join together to address these issues. She wanted me to work with her. I told her I would. As with other conversations, she was very repetitive. She would circle back around and say the same things she had said earlier. She was confident with the two of us working together we could make a difference in people’s lives.

This conversation was another good illustration that her feelings are working. She can’t remember any facts, but she retains a sense that there are people with many needs. Her heart goes out to them. This particular idea about initiating a project to help people in need is just one example of that. It is also apparent when she talks about her mother, she invariably talks about her mother’s kindness to others and her desire to “help people.” Her mother was indeed kind, but I view this mostly as an expression of Kate’s personal feelings about relating to other people. It is also evident in the way she interacts with strangers. She is a caring person. This is not something new, but it is more pronounced now than in the past. It is certainly a more positive symptom of Alzheimer’s than one usually imagines.

Posted on

Kate and Conversation

Like other caregivers I know, I often miss the kind of conversations Kate and I used to have. Much of our ordinary conversation requires remembering things she can no longer retain in her memory. All is not lost, however. Caregivers learn to talk about things that their loved ones can also talk about. On an average day, I’m not sure that Kate and I talk any less than we did before Alzheimer’s, but the content of those conversations is different and repetitive. We are both happy with this approach.

Social situations can be very difficult for people with dementia. I wish I could fully understand what’s going on in Kate’s head when we are in large groups. I know it can be very confusing for her. Saturday we attended an 80th birthday party of a man who had been a close friend of my dad’s. There was a large crowd, and we knew only three people besides Dad’s friend. It was wall-to-wall people. She sat in a chair and was mostly silent the hour or so we were there. Withdrawing is one way to handle situations like this. I stood by her the whole time to prevent her being anxious.

My brother, Larry came over for the birthday party. We had planned to go out to dinner with him, but the weather kept us inside that night. We ordered a pizza and ate right here at home. I can’t remember the last time we had done that. I would say at least six or seven years.

We hadn’t seen Larry in quite a while. He and I immediately entered into a conversation that wasn’t of interest to Kate. She worked on her iPad until we ate dinner. I felt bad about that. Fortunately, the conversation took a different turn over pizza. Larry has a farm and brought some fresh blueberries for Kate. That led to a conversation in which he pulled out his phone and showed us pictures of his blueberry and raspberry plants as well as his asparagus. At first, I thought this might not be of interest to Kate, but she seem quite interested. She even asked questions that got Larry talking more about the farm. Again, I felt Kate’s interest might be short-lived, but she seemed quite engaged. I know it was impossible for her to follow everything he said, but she didn’t tune out. It turned out to be a good experience. My own view is that she was an important part of the conversation. She wasn’t being overlooked the way she had been before dinner. I let the two of them talk together while I cleaned up the dishes. I was happy to see her enjoying herself.

Yesterday morning, Larry, who had spent the night at a hotel, came back to the house around 9:45. That gave us some time to catch up on a variety of things that would have been of little interest to Kate. She slept until almost 11:00. Then the three of went to lunch. Everything went well until the end of our meal. As we were talking, Kate got confused over some of the things Larry talked about. At times, I tried to interject and explain. It was a time when it appeared that she really wanted to understand but couldn’t, and her confusion escalated. I feel reasonably sure that at that point in the conversation she didn’t know that Larry was my brother. She asked him directly, “Who are you?” I explained that he is my brother. She asked him his name, and he told her. I can’t remember, but she may have asked mine as well. She must have because I remember her asking my last name. She didn’t realize that I had the same last name as Larry. (That is not unusual. It is typical. This happens all the time when we are going through her family photo albums.) The server dropped by the table. She and Larry talked a bit. Kate pointed to Larry and asked me who he was. When I told her he was my brother Larry, she said, “What’s his last name?” When I told her, she burst out laughing. The server asked what was funny. Kate said, “His last name is Creighton.” She said this as though it was a silly name. Then, looking at the people at the table across from us, she said something about his name. I don’t remember what she said.

Despite her laughter, Kate was irritated with my brother. I can’t explain it. I have a hunch that she somehow felt like an outsider to our conversation. She was rather abrupt with him and made some reference to the way the two of us (Larry and me) act when we are together. She was not in a good humor as we made our way to the door. When we got outside, she immediately apologized to Larry and said something like, “You’ll have to forgive me. I’m trying to not to be this way.” It was as though she were carrying a grudge from the past. I don’t understand.

When we got in the car, she told me she didn’t want to talk. I told her I would turn on some music that she would like. I didn’t say a word until we got home. When we were a few blocks away, I reached over and squeezed her hand and held it a moment or two. She squeezed back and smiled at me. She was herself again.

This was the first time I’ve seen her respond this way with anyone. It wasn’t just a momentary reflex. She was bothered over a period of minutes. She was obviously offended. My best guess is that Larry and I drifted into a conversation that was of greater interest to us, and Kate felt excluded. This will make me more sensitive about conversations in the future. I don’t want Kate to feel this way again.

Posted on

“Little Things Mean A Lot”

In 1954, Billboard ranked Kitty Kallen’s “Little Things Mean A Lot” the number 1 song of the year. It apparently meant a lot to a lot of people. That popped into my head as I thought about today’s post. This follows an earlier post this week when I mentioned Kate’s delight in the “beauty” of her leftover sandwich at a restaurant in Asheville. She derives much pleasure from simple things. She’s not alone. I do too.

The other day someone I follow on Twitter mentioned that her father had written her a letter in which he said sometimes little things can carry you through an entire week. I find that to be true. In fact, it’s even better than that with Kate. During any given week, we encounter a number of touching moments that help me through the week. Let me tell you about three of them that occurred in the past 48 hours.

Thursday night after returning from opera night at Casa Bella, I turned on a YouTube video of selected segments from Andre Rieu concerts. Kate got in bed, and I went to take a shower. After showering, I noticed that Kate’s arms were uplifted, and she was holding her hands together as if she were praying. I think, in a way, she was. She was enraptured by the music. That was the second time I have observed this. The first was during the song “Bring Him Home” on a DVD video of Les Miserables. In both instances, her eyes were closed, and she was entranced throughout the song. I was touched to see her loving the music so deeply.

Last night, I tucked her bed before and told her I loved her. She looked surprised and said, “You do?” I knew immediately that this was one of those moments when she didn’t recall that we are married and said, “Yes.” She said, “I’m glad. I was hoping you did.” I said, “I love you.” She said, “Me too.” It was such a little thing; however, at this stage of her Alzheimer’s, it means a lot to me. She may not always know my name or that I am her husband, but she still has the same feelings.

The third moment actually occurred over a three-hour period between 1:00 and 4:00 this morning. I got up at 1:05 to go to the bathroom. When I got back in bed, she moved close to me and put her arm over my chest. She moved a bit during the next three hours but not much. I think she was pretty much asleep during the entire time. She chuckled a few times and said a few words that I didn’t understand. I think she was dreaming. What struck me was how naturally she held me. I took it as an expression of love. Once again, she is losing her memory of my name and her own and the fact that we are married, but she retains her feelings. Right now that is worth its weight in gold.

Posted on

Changes Abound

Since Kate’s diagnosis, she has declined very gradually, imperceptibly at each moment but clearer at the end of each year. The pace stepped up about a year ago and again in the past few weeks or months. I lose track. For a long time, she and I have rehearsed the names of people we will see when we go out. Recently, she seems more concerned about remembering them. I am not surprised. It is impossible for her. She doesn’t do well repeating them back in our “rehearsals” in the car. The desire to get them right, however, is still strong even though most of the situations don’t require the use of names at all.

Last night was opera night at Casa Bella, and I did something different as we met people we know on our way in and as others who came in after us. Typically, I have said, “Kate you remember Paula and Bill” or whomever. This time I simply said, “Kate, this is Paula and Bill.” To me it took the emphasis off of her failure to remember and gave her the sense that she was meeting them for the first time. From her perspective, she was. All of the people I introduced know about her Alzheimer’s and have been very kind to her. I am sure each one recognized that I was trying to be kind to her myself.

That wasn’t the only difference last night. She is also getting more insecure about doing the right things when we are out. Even though I have been ordering her meals for years, she has started taking an interest in looking at the menu. It’s hard for her to read, and she gets frustrated with all the selections. She then turns to me and asks what I recommend for her or says, “What am I going to have?” Of course, she can’t remember my answer. That requires asking multiple times. Last night was the first time I recall her doing this with other people present. When she asked, I said, “I think we should get the veal piccata. It’s always been our favorite.” She said, “Order for me.” She asked at least a couple of additional times before our server took the order.

Something else occurred, but no one else would have noticed. I was seated diagonally across the table from her during the music. I noticed her looking very carefully at the man directly across from her. She was puzzled. She looked to her left and to her right. In a moment, her eyes caught mine. She gave a very subtle sigh of relief. Then she smiled. I knew that she didn’t know where I was. She was uneasy. I have definitely become her security blanket.

Yesterday in an email to my friends Tom Robinson and Bruce Morton, I mentioned something about Kate’s frequently overlooking food on her plate. I often point out half a sandwich or a significant part of her entrée that she hasn’t eaten. This is an issue with her eyesight that seems to be a result of her Alzheimer’s. Her ophthalmologist hasn’t located anything in her eyes that should account for it. There is something else that plays a part. She never remembers what I order or what she is eating except when she sees it. She forgets between bites. Thus, she lacks a memory that might clue her into recognizing she hasn’t eaten her entrée. This happened just this past Saturday. She had eaten half of her sweet potato fries before I reminded her of her salmon. She hadn’t remembered it, and she didn’t notice even though it was right in front of her.

It is impossible for us to fully understand what it is like for someone with dementia. We can only try.

Posted on

Confirmation of an Earlier Decision

Five weeks ago yesterday, I took a step I had been thinking about for months. I made an appointment to meet with the marketing director of Forest Hills, a local continuing care retirement community (CCRC). I met with him that very afternoon. I had been there on many occasions to visit friends. Several of those times our friends had invited us to be their guests for dinner in the main dining room. I have always liked the place and thought it could be a possibility for Kate and me at a later point in our lives. Her diagnosis in 2011 made me think more seriously, but I had never taken any steps to learn the details concerning the amenities and pricing.

My meeting filled in most of the things I wanted to know before going any further. I learned about a new building under construction that will be ready in the first quarter of 2021. All but three of the apartments were already taken. I liked what I saw and heard but told the director that I would like some time to think about it. He told me I could hold an apartment for thirty days with a small deposit. If I didn’t want to follow through at that point, they would refund my money. The following week I was comfortable enough to take that step. I met with them and handed over a check. This was getting real.

Two days from now the thirty-day period is over. I’ve had no reservations about the decision I made a month ago, so yesterday I took a bigger step. I made a down payment on the apartment I had selected. With that step, they consider us a part of the CCRC. They gave me a gift certificate for a few meals there and said we were welcome to eat there at any time. They will send us a monthly invoice for meal charges that go beyond the value of the certificate. I doubt that is something we will use, but I thought it was a nice gesture. We are also eligible to use the adult day care services (for a daily fee) should we desire. The services they can provide for Kate have been very important in my assessment of a move.

They also gave me a directory of the other people who will be living in the building. I reviewed the list. I know at least a dozen other couples and three singles. Some I know from church and others from Rotary. I feel sure there are others whom I don’t know but would recognize. That will be a good start for us. I am very comfortable with my decision.