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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.

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“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.

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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.

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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.

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Taking Stock of Where We Are

As my recent posts suggest, Kate is on a serious decline. Her rational ability to remember names and places is extremely poor although some things jog her memory. Her photo books and my re-telling stories of family, our marriage, and her own personal experiences continue to be helpful. I don’t believe that she ever remembers on her own that she was an English teacher, school librarian, or church librarian. Even when I mention her degrees and her teaching, she is surprised. She was a volunteer church librarian for 19 years. She does recall that if I give her a little information.

I’ve noticed in recent weeks that she does not ask my name or hers as often as she had done previously. It still comes up, but it appears that she has reached something of a comfort level when she doesn’t remember. Yesterday at lunch, I mentioned something about our having celebrated our anniversary. She asked how many years. I told her, and we talked about how good our life together has been. She can’t recall any specifics on her own, but she talked about our having done so many things. I shifted the conversation and told her she was going to get her hair cut at 3:00. I mentioned the name of woman who cuts our hair. Then she asked her last name. I told her. She had difficulty getting it and asked me to repeat it several times. She said, “I just wanted to know in case I need to introduce her to someone.” I said, “I don’t think you have to worry about having to do that.” I paused and added, “But you might want to remember my name.” She looked as though she hadn’t thought about that and said, “What is your name? I really should know that.” I told her my name. Then she asked her own. She didn’t give any sign of being bothered by not knowing or acknowledging that she didn’t know.

I don’t know that she is actually sleeping any more than in the past, but she wants to rest more often. Resting right after we get home from lunch is common now. Frequently she lies down on the sofa while I sit in a chair across from her. It looks like she spends most of her time pulling her fingers through her hair. She does this every night when she gets in bed. She refers to it as “working” and believes she is doing something good for her hair.

While her rational abilities dwindle, her intuitive abilities shine. Almost every time she passes through the family room, she looks at the flowers blooming on the patio and often asks me to come over to look with her. In the past few weeks, it seems like she has gotten as much pleasure from the flowers and trees around town and our neighborhood as she does from music. I am happy to see that. She has also been looking at a garden magazine I got her a couple of months ago. She wasn’t drawn to it then.

She is more emotional about everything. That includes both happy and sad things. She gets teary far more often. I am more careful about telling her of any news that relates to death. She gets very sad. She also responds more negatively to things that bother her. That includes the heat, sudden noises, and music she hears at some of the restaurants we visit.

She still has moments when she wants to do things for herself. I am glad when that happens. Those moments are becoming fewer, however. When getting dressed, she sometimes asserts her independence and then needs to call on me for help. I feel sorry for her when that happens.

I wonder if this desire for independence is related to something else she has done a couple of times recently. At lunch the other day She said she was going to be taking a trip. I asked where. She said, “I haven’t decided yet.” I asked who she was going with. She said, “I’m not sure.”

Coming back from dinner last week, Kate said, “I’m going to pay attention because I’m thinking about coming out this way sometime. I might bring someone with me.” Another night, when I turned on the car’s air conditioner, she said, “I should be paying attention to this.” If I thought she would have any idea of how to start my car, I might be worried.

What seems most amazing to me is that we still enjoy life and each other. Yesterday was a particularly good day. We didn’t do anything special. We just enjoyed being together. I don’t want these experiences to end. If they do, I will try to remember the good times we have had. We are so fortunate.

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Increasing Insecurity

As I mentioned yesterday, our trip to Asheville was a success, but not everything went as I had planned or wanted. I hadn’t fully grasped the degree to which Kate’s insecurity has increased. It was evident in three different moments while we were away.

The first of these occurred Sunday night on our way to dinner. Our hotel was about three blocks from the restaurant. Even before going, I had taken into account that the heat and the walk could be a problem. Not to worry, I remembered they have bike taxies. I would simply arrange for one to pick us up in front of the hotel and deposit us at the entrance to the restaurant. We had done this the last time we were there.

Let me digress for a moment. As a teenager, I worked for my dad installing venetian blinds in homes and commercial establishments. I learned a lesson that has stuck with me my entire life. There is a standard way to install a venetian blind. The only problem is there are so many non-standard situations. The same principle is true for just about everything else we do – even getting into a bike taxi.

Almost anyone could rather easily get into one, but anyone does not include someone in the late stages of Alzheimer’s. Kate was very nervous. It was just one step up and take a seat. We faced two initial hurdles. One is that she was unable to follow the instructions of the driver. He told her to use one hand to pull on the edge of the carriage seat. She could never get that. She kept grabbing the less sturdy frame of the convertible top. The second problem was that she had trouble lifting her leg to put her foot on the step. The driver decided it would be easier if he pulled over to the curb. That way she could start from a higher elevation. That introduced another problem. Every time we told her to step up, she stepped down. It was only after multiple attempts that we succeeded. It required our moving one of her hands from the frame to the edge of the seat and lifting with her other hand.

We were not off to a good start, and we weren’t “home free.” Kate was uneasy the entire ride to the restaurant. She has become sensitive to lots of little things since her diagnosis. That has been especially true in the past year. She was bothered by every bump in the road, and you feel them more in a bike taxi. Fortunately, it was only three blocks. Of course, the next hurdle was getting her out. She was frightened, but we were successful in less time than we had taken to get her in. I paid and thanked our driver and told him we would walk home.

The next day we had lunch at another restaurant that was also three blocks away. We walked. I was optimistic because our walk home the previous night had gone without a problem. I was wrong again. Kate is sensitive to heat and cold, and it was beginning to warm up. The bigger problem involved her perception of the difficulty of walking on sidewalks and pavement. Like many other people with dementia, she perceives differences in color and shape to be differences in elevation. We did, in fact, walk in a few places where a brick pathway required some care. For the most part, however, we walked on relatively smooth surfaces. Kate was hot and uneasy the whole way as well as going back. Fortunately, she relaxed quickly once inside the restaurant.

It wasn’t long after our return home yesterday, that it was dinner time. We went out for our regular Monday night Mexican meal at Chalupas. As she was getting out of the car, her face came very close to the top corner of the door. (I keep my hand on it to prevent an accident.) She was startled by how close she had come. I lightheartedly said, “There are so many scary things in this world.” She agreed and said in a serious way, “but I feel safe when I am with you.” This is yet again a reminder of how frightening life must be for her. As aware as I am of this, I tend to forget about it in the course of a day. But the best part of the day was yet to come.

We had a pleasant time and enjoyed our conversation. Kate seemed very relaxed. After I paid the check, I said, “Well, would you like to go home now?” She said, “Could we just relax a few minutes?” I said sure. That “few minutes” turned into almost an hour of conversation during which she did most of the talking. She talked about life, about the people who are much less fortunate than we are, about travel and how it broadens our perspective on life.

Several times when she paused I asked if she was ready to go. She said she just enjoyed being together and that she would like it even if we didn’t say anything. This was far from the first time that she has been in a talkative mood. I always enjoy these conversations. She seems so relaxed, so comfortable, so happy, so grateful.

This time her conversation caused me to reflect a little more on her insecurity of the previous twenty-four hours and the shift in her feelings. I have tried to maintain a routine life for her. As a person of routine, that was quite natural for me. It was also based on the experiences of many others who stress the importance of routine for PWD. Until now, I hadn’t been particularly aware of Kate’s experiencing any distress in connection with changes. I wonder now about the strangeness of being in a place she couldn’t remember and encountering things that frightened or bothered her. How was she processing all of that? I only know that she seemed very insecure in moments, but they were not lasting. She still enjoyed other moments like our time at Chalupas last night. She had a number of other special moments while in Asheville. That makes me think about one other experience while we were there.

After finishing her lunch yesterday and before the server removed her plate, she called my attention to the colors of the remaining food on her plate. She pointed to the red of a piece of tomato over “here” and another “over there” and the green of the last pieces of lettuce. She saw them as something beautiful, a work of art. She also took interest in some very small bread crumbs on the table. They were smaller than ants. I thought she was going to tell me they were alive the way she had done this past Friday at dinner in Knoxville. She didn’t. She took them for what they were, just crumbs. Then she surprised me by putting a small piece of lettuce on her thumb and saying, “This one’s still alive.” I said, “I love it when you enjoy such simple pleasures.” We both said the simple ones are the best, and they are.

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The Value of Social Connections

Maintaining social connections has been a major part of our therapy since Kate’s diagnosis. I have found it especially important in recent months as Kate has declined more significantly. Although she enjoys being with others as much I do, her pleasure is strictly in the moment. On the other hand, I enjoy the anticipation, the moment, and the memories. As a caregiver, being with other people lifts my spirits. I never heard my dad express it, but I know he must have felt the same way as he cared for my mother who had dementia.

Yesterday we drove to Asheville for what turned out to be a better than expected variety of social experiences. As I mentioned in my previous post, I thought it could be our last one and wanted to see a couple of people who had meant a lot to us on our previous visits. A few days before leaving, I learned that one of my Twitter friends and her husband were in Asheville and would be driving back home Sunday afternoon. I asked if we might meet before they left. We decided to get together at our hotel as soon as we arrived.

Our meeting went off without a hitch. I was eager to meet my friend and was eager to introduce her to Kate. This could have easily been a conversation between my friend and me, but she immediately looked straight at Kate and engaged in conversation with her. I was pleased to see that. It illustrated her sensitivity and comfort level with people with dementia. More importantly, she quickly established rapport with Kate. That set the stage for an hour-long conversation before they had to leave. As we were saying our goodbyes, my friend said something nice to Kate who was unable to respond verbally. The tears in her eyes said it all. She was touched by someone who entered her life as a stranger but left her feeling as though she were a longtime friend.

Our experience at dinner turned out to be another touching experience. We had another anniversary celebration. This time at a new restaurant but with a server who has taken care of us at three different places over the past few years. It was good to see her again. Just as I am telling you about her, she had told her associates, including the manager, about us. We met several of them and were very well-cared for. The meal itself was outstanding. At the end of the meal, we had quite a surprise. Our server said the evening was “on her.” She didn’t even accept a tip.

Experiences like these are bright spots in our lives. They sustain us through difficult times, and we have enough of them to keep us going. I feel grateful.

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Our Fifty-Sixth Anniversary

We had a nice day yesterday. It was our 56th anniversary. Quite a few times, we have been out of town celebrating the occasion. Tomorrow we are making an overnight trip to Asheville, but we’ll be back the following day. The trip is really more for me than for Kate. She can’t remember that it was our anniversary or that we have often celebrated there, but I remember. This is likely our last trip. I would like to see a couple of people who have been especially kind to us on past visits. One is a woman who works behind the desk at the hotel. The other is a server who has taken care of us at three different restaurants and is now working at a fourth. They are like so many others we see on our daily visits to restaurants around here in Knoxville. I want them to know how important they are to people like Kate and me. They all play a vital role in our own “unrecognized” support system.

I did something different with our sitter yesterday. I asked her to meet us for lunch, and she could take Kate back home. After we sat down, Kate played the role of a hostess and said to her, “Tell me your name.” She said, “Mary.” Kate said, “That’s a nice name.” I should mention that Mary is the only sitter who has been with us since I engaged sitters a year and eight months ago. Then Kate proceeded to point to me and said, “I’m his daughter.” Neither of us corrected her.

When I returned home, I found the two of them in the family room where Kate was looking through her “Big Sister” album. I sat down with her, and we went through the rest of the book together. She continues to enjoy this album, but she never shows any improvement in her ability to recognize the people in every photo. She does generally recognize the photo of herself on the cover and often recognizes her brother who is seated beside her.

I had bought an anniversary card for her and written a short note printed with a 32-point font so that she might be able to read it. I read it for her but plan to put it in her memory book. We shared a tender moment as we reflected on our marriage and how fortunate we have been. Then we went to dinner and relaxed with music until bedtime.

She was in bed about thirty minutes before me. When I got in bed, I moved close to her and put my arm around her. I said, “We had another good day, didn’t we?” She agreed. I said, “We had a nice anniversary.” She said, “Anniversary for what?” I said, “It’s our wedding anniversary.” She laughed, something she has done quite a few times when she doesn’t remember that we are married. I said, “Don’t you believe we’re married?” She said she didn’t. I said, “Then how do you explain that we’re snuggled up in bed like this ?” She said, “Well, you’re very nice to talk with.” I said, “I love you.” She said, ‘I love you too.”

Life is different these days, but I hope you can tell that we still enjoy life and each other.