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The Importance of Having a Team

The other day I read a tweet by Ian Kremer noting the importance of having a team to aid the caregiver and the person with dementia. I asked myself, “Do I have a team?” It didn’t take me long to answer affirmatively; however, the members of our team don’t know they are on it. Let me explain.

In the typical usage of the term, a team suggests a number of people who work or play together to achieve a common goal. If we begin with this concept of a team, I think most caregivers would have to say they don’t have one. I certainly don’t. In fact, one of the most significant problems experienced by many caregivers is social isolation. I don’t believe it is because people don’t care. I think they are just unsure of what to do for people with Alzheimer’s and their caregivers. I have read a number of things that point to the need to give others a better understanding of how they can help, but I believe this is a long-term solution. Caregivers need something right now.

My own approach has been to take the initiative to engage others in helping rather than waiting for them to take the first step. Some of this has come about by asking directly. For example, on numerous occasions I have invited different friends to have lunch with us. Some of these have been members of the Sunday school class that I taught for ten years. I had already been in touch with them by phone and in class for years. It was only natural. I knew that they wanted to maintain some contact and also that it would be good for Kate.

We have several very good friends who live in Nashville, especially Kate’s friend, Ellen, who moved there following a stroke. We have paid more visits to those other friends than we might have done otherwise. None of these people would think that they are doing anything special to help us, but they are.

Some of these visits occur right here in town. Two days ago, for example, a childhood friend and his wife from West Palm Beach drove over from Gatlinburg where they have a condo. They come to Tennessee about four times a year. Almost every time they come, we get together either in or near Gatlinburg or in Knoxville. We always have a good time, and they have been very supportive since learning about Kate’s diagnosis.

There are many more members of our team in just about every place that we go. These include all the servers at the places we eat, the other customers at Panera or other places. That happened at lunch today. As we were leaving, I heard someone call my name. It turned out to be someone we know from church and my Rotary club. We stopped and chatted about fifteen minutes before moving on. He wouldn’t think of his having done something to lift our spirits, but just engaging in conversation did the trick. Because Knoxville is not a large city, we have these kind of experiences wherever we go.

Finally, I would say that when I decided to be more public about Kate’s Alzheimer’s, that served as an implicit invitation for people to ask how she is doing and how I am doing. Thus, when I see people without Kate’s being along, I find myself telling them how things are going. All of the volunteer activities in which I have participated have also generated additional support for me. Of course, those activities are fewer now, but they have been significant.

I shouldn’t overlook the power of a team of people with whom I communicate via email. I have two college friends with whom I exchange as many as fifty emails a day. The longevity of this connection and the variety of interests we explore have been invaluable. In addition, I have established contacts with a few friends and family who have their own personal experiences with Alzheimer’s. Those relationships provide communications that deal more specifically with issues related to dementia and caregiving.

I almost forgot to acknowledge the team of professionals who are more obvious members of our team. They would include Kate’s doctor and dentist as well as the sitters who are here at home with Kate three afternoons a week.

Except for the exception of these professionals, none of the people I mentioned would think they are part of a care team working to make our lives better. But that is just what they are doing. They have been important sources of encouragement and support without having to make any special commitment to visit us, to send food or cards, or anything other than relating to us when we meet. It is easy for them, and it is easy for us. Best of all, it works. Yes, we really do have a team of people working to make our lives better. They just don’t know that is what they are doing or how important they are. I am grateful for their presence in our lives.

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Dinner With Friends

Last week at Casa Bella, one of the couples with whom we shared a table invited us to join them for dinner last night. They are originally from Ohio where they graduated from Kent State. They lived in Buffalo for several years as well as Fort Worth. That gave us a variety of similar experiences to talk about. We fly into Buffalo every year when we go to Chautauqua and Niagara-on-the-Lake. Since Kate grew up in Fort Worth, and we met at TCU, that gave us more common experiences.

I was not at all surprised that Kate did not remember them when I told her we were meeting them for dinner. On the whole, she got along quite well although she said a number of things that may have seemed strange to them. Very early in the conversation, they brought up something about the time they lived in Fort Worth. Only moments later she started to tell them she was from Fort Worth. She stopped when I looked at her. She must have thought I was going to contradict her in some way and gave me a funny look. Then she couldn’t remember what she was going to say. I stepped in and said something about their having lived in Fort Worth. She looked surprised.

A little later, the wife asked Kate where her children live. She couldn’t remember and looked at me. I jumped in and told her and told them about the grandchildren as well. I am sure they both wondered why Kate didn’t answer for herself. At one point in our conversation, she brought up her cousin who lived in Alaska.  Her timing was off, but she had said this in response to the mention of an Alaskan cruise the couple had mentioned earlier.

Before we left the house, Kate did something else that was strange. We had a warmer day yesterday, so Kate didn’t need to take a sweater or jacket with her, but she did. In addition, she brought a pair of socks even though she was already wearing socks. Even more surprising is that she took the pair of socks into the restaurant and put them on the table beside her fork. I am not sure our friends noticed, but if they did, I am sure they wondered why she had done this. The only explanation I could have given was Alzheimer’s.

It was a short day for Kate. She didn’t get up until after 11:30. We didn’t get to lunch until after 12:30, and the sitter met us at Panera at 1:00. When I returned just before 5:00, she asked me what she could do. I told her it was about time to think about dinner but that we could stop by Panera if she wanted. She did, and we were there about 15 minutes before heading to meet our friends at the restaurant. This was the first time I have sensed that she might have been getting bored just being at home with the sitter. It is another indication of how much she likes to get out of the house. I still hope that our spring-like weather will get her out in the yard again.

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More Good Times With Friends

Today has been a good one for social engagement. Angie and Tom Robinson were in town for lunch and a pleasant afternoon of conversation. We had lunch at Carla’s. They had liked it year or two ago when we had first taken them there. I am glad we went. It offered them a glimpse of why I say that eating out is a social occasion for us. We go to Carla’s frequently and know several of the restaurant staff. One of those is the manager, who stopped by our table to say hello. She ended up giving us complementary desserts. As we were about to leave, the newly retired CEO of United Way took a table next to us. We introduced him to the Robinsons, and we spoke briefly before leaving. After that we came back to the house for more conversation.

It had been a good visit. Kate participated more than she usually does. She was more animated than normal, sometimes more assertive as well. I’ll have to talk with Tom about his impressions, but I felt she handled herself well. She is changing, but she does far better in social situations than I would expect knowing how little memory she has. At one point, she asked Tom about Bruce, a mutual TCU friend and one of my former roommates. I was surprised she recalled his name. As usual, I knew that some of the things she said were figments of her imagination. They aren’t, however, the kind of things that provide an immediate alert to others that she is confused.

After they left, I told her how well I thought the visit had gone. She agreed. Then she said, “Who are they?” After I reminded her, she said, “Oh, yes, from TCU.” Part of our discussion this afternoon was about our days at TCU. I was glad to see that she still had not totally forgotten that connection. Then she asked, “Who are they again?”

She is having significantly greater trouble recalling names in the past couple of weeks. Today, she asked, “What is your name?” I find it hard to believe that she has forgotten, but that is what it sounded like when she asked the question. After I told her my name, I asked, “Now what is your daughter’s name?” She couldn’t answer. I said, “Jesse.” Then she immediately gave me Jesse’s middle name. Clearly, the first name triggered the middle name even though it is one we do not use.

The changes in her memory make me think that making another trip to Texas in the spring and a trip to Asheville for our anniversary may not happen. If that is so, there are likely to be other changes on the horizon, and not as distant as I would like.

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Preparing For and Enjoying Time with Friends

Kate got up earlier this morning but late enough that we were a little short of time before meeting a group of friends at 11:00. We squeezed in just enough time for get Kate’s muffin. As she was eating, I reminded her that we were going to a birthday celebration today. As I had expected, she hadn’t remembered. I explained that this was a group of friends who had been faculty colleagues at the middle where she had been the media specialist for about ten years. Several of them had January birthdays and used to celebrate together. It had been five years since our last time together; so I had arranged for us to do it this year.

Kate asked me to tell her who would be there. I went through each of the six other people besides ourselves. In a moment, she asked again. After that she said, “You might have to tell me again.” She then asked me how we knew these people. I reminded her of the school connection.

Then she asked me to tell her who our children are. As she did the other day, it sounded like she really knew and just wanted to practice names. I told her their names. Then I proceeded to tell her the names of the grandchildren. After that she said, “Where are we right now?” I asked if she “meant this place.” She nodded, and I said, “Panera.” When we got in the car she asked, “Where are we?” I asked if she meant the city. She did, and I told her. As we neared the home of the couple hosting the event, she asked me the names if the people we would see. I told her and also told her I didn’t think she would have to worry about knowing each person’s name, that everyone would assume she knew them. I may be imputing too much, but she looked a little apprehensive as we arrived at the house.

We were greeted by three people at the front door. From that point, everything went well. Kate’s gift for social interaction came to the rescue. I suspect that everyone was surprised at how well she seems to be doing. There was a lot of conversation before, during, and after the meal. Kate was not very talkative, but neither was I. Several of the others are big talkers, and there was a lot of reminiscing of experiences they had shared in their teaching careers.

There were only two things that Kate said that would have been signs of her Alzheimer’s. The woman hosting us had prepared a spaghetti casserole that was a recipe of Kate’s mother’s. We talked briefly about that early in the meal. Fifteen or twenty minutes after that as we were talking about foods that we liked, Kate said, “I wish you could have had my mother’s spaghetti casserole.” I had informed everyone of Kate’s diagnosis before we got together; so they didn’t say anything to make her realize that was something we talked about before.

The other thing was that Kate told them about a school at which she had taught. As she described it, I knew that she was talking about the school where each of them had taught together. I was a bit uncomfortable as she was talking because I knew that some of the things she said weren’t true. I am sure everyone realized that she was confused.

What I will take away from this gathering is that Kate handled herself very well, and we both enjoyed ourselves. I still can’t escape the sense that she is changing significantly and hoping that she will be able to function well in social situations for a good while to come.

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An Uplifting Phone Call

Shortly after returning from lunch today, I received a call from Inez Grayson. She is a friend of Kate’s and a former staff member at our church. They became friends when Kate was the church librarian. She had called me a couple of weeks ago to arrange a time when she could take Kate to lunch to celebrate her birthday.

Inez wanted me to know what a good time they had had and how much she enjoyed the lunch. Inez had arrived before I arrived with Kate and had ordered their lunches following my recommendations for Kate. Inez said she was so impressed that Inez had remembered what she likes. She also commented on how much Kate had talked. She found it surprising how many things that Kate had remembered about some of their past experiences. Several people whom Inez didn’t know came to the table to speak to Kate. Inez said she handled herself beautifully. After the friends had left, Inez asked who they were. Kate said, “I don’t know.”

I was so pleased to hear how well the lunch had gone. I’m not surprised. She has always been very fond of Inez, but I always like to hear that she has gotten along well. It is another good illustration of how well she can function in social situations. I hope this continues for a long time.

When Inez first called, she was happy to include me, but I thought it would be much better for just the two of them to have time together. I know that when I am around, I can dominate more than I should. I am so glad I wasn’t there.

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A Very Good Day

Kate got up somewhat later yesterday morning, about 8:45. We were at Panera just before 10:00. She worked quietly on her iPad until a little before 11:00 when she was ready to go home. This is a time when she usually would work outside until lunch, but she came inside and lay down in bed. I think she was still a little tired from our trip last weekend. In addition, she had gotten to bed a little later the night before. The weather has improved but is still somewhat cool. That may have also played a part.

I wondered how long she might rest. I didn’t want her to take too long because we had planned a trip to Nashville for a late afternoon visit with Ann and Jeff Davis. Fortunately, she got up at 11:30 and was ready to go. Originally, we had also planned to see Ellen, but her daughter sent me a text the night before saying that she was sick. We hadn’t seen the Davises since before Christmas; so I decided to go ahead.

We both enjoyed visiting with Ann and Jeff. Our relationship goes back to Madison when Jeff and I were both grad students in sociology. Later, we both joined the faculty at UT. Both couples had daughters the same age, and we used to get together very frequently until they moved away. We have continued to enjoy periodic visits with them either in Nashville or Knoxville. During the past few years, I have tried to be more deliberate in arranging visits because it means a lot to Kate and to me. I realize that it won’t be much longer until our visits are much different than in the past. Of course, they aren’t the same now. Yesterday, Kate said very little, but she was comfortable. It appeared that she was getting along well. On the way home, she confirmed that it had been a nice visit. I agreed. It had been another nice day.

Kate’s recent decline in memory has increased my motivation to arrange other visits with the Robinsons and the Greeleys. Both couples live in Nashville as well. As I look to the future, I am unable to predict just how Kate will change and how that will impact our activities. I do remember that my dad took my mom with him wherever he went except his Kiwanis meetings up until her last week or so when she was bed ridden. In his case, they were not traveling out of town. My plan for us is to continue taking it one day at a time. That has worked for us so far. I hope it will serve us well in the months ahead.

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Our last day in Texas

Before leaving Knoxville yesterday, Kate and I made our usual stop at Panera where we both got muffins. Then we made a trip to the cemetery where we visited the Franklin family plot. We stopped at the graves of each person and sensed the memories of our experiences with them. There were a few who died before I became a part of the family, but I had a great sense of the story of this particular family and how close they had been.

We stopped a little longer at the graves of Kate’s mother and father and an infant daughter. It was an emotional moment for both of us. I believe it was especially so for me because I believe this will be Kate’s last visit to this place before she passes. The tears welled up in my eyes as we stood in that place.

From there we moved on to Dallas where we will catch our plane to Nashville this morning. We drove directly to the home of a childhood friend of mine with whom I have been in contact since the third grade when we met, Carter Owens. One of my earliest memories of him occurred during the 1948 presidential race between Truman and Dewey. He was a big Truman supporter. I am sure most of the other fourth graders hardly new who Truman was. This interest in politics has lasted the rest of his life. He is now a retired political science professor.

We met Carter at his home where he lives with his partner and now husband, Michael. They married shortly after we were with them two years ago. We had lunch at a nice French restaurant that was rather quiet for our extended conversation. We had a lot to catch up on. After lunch, we continued the conversation at their home. Kate and I both enjoy their company and had a pleasant afternoon.

Around 4:00 we left for our hotel near the airport. We had a fitting close to a very good week. It was everything I wanted it to be. Kate had seen all of the family living in Fort Worth as well as the people who have been most special to her for many years. I wish she were able to savor the memories. Since that is not possible, I am at least glad she was able to enjoy the time she had with each one.

 

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Visit with Ellen

After our experience at the movie on Friday, I was looking for another way to entertain Kate yesterday. It has been a few days short of a month since we last visited Ellen; so I thought that might be a good thing for us. Typically, I arrange these visits several days to a week in advance. That way I can also coordinate with other friends in Nashville. I try to have lunch with one of them on each of our monthly (or almost monthly) visits to Ellen. This time I made the decision yesterday morning and decided it was too late to arrange something with our friends. Besides, Kate had gotten up later yesterday, and we would have been rushed to get her muffin at Panera. It just wouldn’t have worked.

Before Kate got dressed, I decided to ask her if she would like to visit Ellen. She said that would be nice. While she has always been interested in visiting Ellen, she has seemed increasingly compliant or agreeable at my suggestions. In the same way that she seems to feel a sense of relief that I will take care of ordering her food in restaurants, she seems to be accepting of the things I choose for us to do. The exception is when I suggest seeing someone whom she doesn’t recall. I think she feels a bit insecure when this happens. Once we meet the person, she is fine.

A good example of this insecurity occurred on Thursday. One of her high school friends, Meg Wright had called me to arrange a good time to call Kate. We decided on Thursday afternoon. When I told Kate, she immediately said, “What am I going to talk about?” She has said the same thing when I have mentioned having lunch with one of the couples in Nashville.

We were quite leisurely in leaving for Nashville. I didn’t want to rush Kate unnecessarily. I have found this works well. We went to Panera and then had our regular lunch at Bluefish. This has become a nice Saturday treat. While it doesn’t cost significantly more than other restaurants we frequent, it is a little nicer. I like its ambiance, and it is quiet. Our server, Abby, takes good care of us and gives us a hug when we arrived and when we leave.

From Bluefish, we were on our way and arrived at Ellen’s close the 3:00. She lives in a very nice assisted living facility that also has a memory care section where Ellen has lived since May. We had a nice visit although we thought her speech was more difficult to understand since our visit in August. We were with her almost two full hours and had a good time. I tried not to talk too much in order to enable Kate and Ellen to talk to each other. That is a problem because Kate wears down over a two-hour period, and Ellen is difficult to understand. It is difficult for Kate because of her memory loss. That leaves her with few things to talk about. That is why she gravitates to her family. In that regard, she twice mentioned her grandmother as someone who was ahead of her time because she saw and welcomed a day when blacks and whites would be in the same classrooms. I have never heard about anything like this before. I believe it is just one of the types of things she creates. I have observed that on other occasions. I think something just pops into her head, and she feels like it happened.

It was late when we got back to Knoxville. We dropped by Gregory’s for dinner. We sat at a table that was very close to the entrance to ladies room. I pointed to it and asked Kate if she might like to use it before we ate. She did. While she was gone, I pulled out my phone and was looking at some Facebook posts. When Kate didn’t return in what I thought was a reasonable period of time, I got up and looked around the room and then went into an adjoining room where the bar is located. I didn’t see her and went back to the table. In a few minutes, our waiter came to me and asked if I was waiting for my wife. I told him I was. Then he told me that she was sitting at another table in a section on the other side of the bar. I went around and got her. She was drinking a glass of water that a waiter had brought her.

Kate wasn’t fazed in any way by the experience. She was just as she has been in every experience in which I have lost her. She goes to some location and waits for me to find her. As I escorted her back to our table, she said she wasn’t worried at all (and seemed not to be). I told her she had done the right thing to wait for me to find her and that I will always find her. She said, “I know you will.”

As we got in the car, Kate had to spit and when she did it went on the dashboard. This is not something she would ever have done in the past but is becoming more frequent.

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A Visit with the Davises

Yesterday we had lunch with the Davises in Nashville. I am glad to report that everything went well. We spent about thirty minutes at their home in conversation before going to a restaurant. We got off to a good start when Ann and Kate paired off in their family room and had a conversation just between the two of them while Jeff and I had our own conversation. Ann was good about asking Kate questions that she was able to address even if the information she gave was not right. I couldn’t hear everything because of my own conversation with Jeff, but I did hear Kate say that we are moving to Texas. It is interesting how many things she can’t remember, but she doesn’t seem to forget about that. The good thing is that she doesn’t act as though it is something imminent.

In the car to the restaurant, Kate said something about our housekeeper. Then Ann asked her name. Kate couldn’t remember it. I whispered it in her ear. During the car ride and at the restaurant, it seemed like the conversation was mostly among three of us. Kate didn’t say much. I worried that this might bother her. As we left to see her friend, Ellen, she commented on the way Ann and Jeff are able to put people at ease. They are down-to-earth, not pretentious. This is especially important for Kate to sense because she sees both of them as very bright people and is a little intimidated by them. I hope this keeps up for a while longer.

Our visit to Ellen went well. Ellen had improved somewhat since our last visit just over a month ago. We still had trouble understanding much of what she said. By now I am wondering how much better she is likely to get. It has been two years since her stroke, and she has had 2-3 seizures since February. I plan to continue our visits as long as she and Kate are able.

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Good Visit with the Greeleys

Yesterday we went to Nashville for a visit with Greeleys. We arrived around 11:30. Jan prepared lunch for us followed a little later by Ben and Jerry’s ice cream. We had a great afternoon of conversation on many topics. It was refreshing that no mention was made of our current president who dominates the news these days.

As I probably have mentioned, Kate’s relationship with Scott extends back to the cradle. In fact, their mothers were good friends and pregnant at the same time. Although they didn’t live in the same town while growing up, their families maintained periodic contact during that time. As I understand it, the parents always thought it would be nice if the two of them became a couple. It just never happened.

Scott has, however, remained a very special friend to her. We have always had good visits with Greeleys. With this background in mind, I was eager for another visit. I was not disappointed. As it turned out, this was not just a good visit with them but another in a succession of good visits with friends in the past two weeks. Each of the couples with whom we visited are among our regular friends with whom we had had visits over a long period of time. It is a bit unusual, however, for us to visit so many of them in such a concentrated period of time. This was deliberate on my part. As I have noticed Kate’s transition to a time when her memory is even weaker than now, I have wanted to maximize her contact with our closest friends.

We went to dinner at Olive Garden before coming home. The Greeleys got to be a part of our lives at the end of the meal. Kate went to the restroom before we hit the road. I got up and went far enough with her that she could see the restroom door. Then I stood up beside our booth which enabled me to see Kate when she came out. Jan and Scott both got up and stood with me. As we chatted, we were facing the door to the restroom. It took a while for Kate to come out. Jan asked if she should go and check on her. I told her that Kate often takes a while and even mentioned waiting as long as twenty minutes for her to come out of the restroom on another occasion. We waited a little longer, and I conceded to Jan’s interest in checking on her. Jan came back and indicated that Kate wasn’t there. When she said that, I assumed she would be at the front of the restaurant waiting for us. The three of us headed there where we saw her seated at the bar drinking a glass of water. When she saw me, she calmly said, “I’m glad to see you.” I said, “I’m sorry. I let you slip by me.” That was all that was said. She got up from her chair. We walked over to the Greeleys and walked to the car. It was a good illustration of just how easily I can lose her. In this instance, we were in a place where we were not likely to experience any serious consequences; however, it reinforces my concern about traveling with her. On our previous trip to Lubbock, I got the locations of all of their family restrooms in the Atlanta airport so that we could use them on a future trip.

One week from today, we fly to Buffalo for our annual visit to Chautauqua, and no doubt our last. I will be especially attentive to how things go on the trip, both the travel portion and the time at Chautauqua. This will be especially influential in my plans for a trip to Fort Worth in mid-October. At the moment, I am doubtful that we will make it. I will make a concerted effort to do so as this would be Kate’s last trip home. In addition, it will be special because or grandson, Brian, will be a freshman at TCU this year. His family plans to come over from Lubbock. Kate’s brother and his wife also plan to come from San Angelo. It will be a special family time.