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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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Unexpected Gifts

I have often commented on the importance of our social contacts with servers and other customers at the restaurants we frequent. In particular we have made it a point to learn a little about those who serve us, especially those who are our regulars. This is done without any expectation that they should do anything more than provide the service. They have done that well. Thus, it is a pleasant surprise when they respond to us in any special way as two of our servers have done this week and both involve something as simple as a Christmas card with an accompanying note.

The first came in the mail yesterday. It was from our server at a restaurant in Asheville. She has served us the past four times we have visited there. On Sunday, she had asked for our address, but I didn’t think anything about it until her card arrived. I was both surprised and touched by her thoughtfulness. Here is what she said.

Mr. Richard and Mrs. Kate,

 You will never know how the 2 of you have touched my life. Your example of love & devotion to each other is one of the greatest things I’ve had the pleasure of experiencing.

 Thank you for blessing me with this wonderful gift! You will be in my thoughts & prayers.

 Merry Christmas & Happy New Year!

 Melissa  

Today at Panera, one of the young men working there came to our table and gave us a card with another kind note.

As the holiday season is upon us, I think of all the benefits of being where I am. I quickly think of my relationships with great people like you.

 I find myself reflecting on the past year and those who have helped to shape my day-to-day life. It’s been quite a year for us all. I hope that 2018 will be just as memorable for you, your friends, and your loved ones.

 The end of the year brings no greater joy than to express to you season’s greetings and good wishes.

 May your holidays and New Year be filled with joy.

 Your friendly neighborhood barista,

 Dave

Both of the remembrances meant a lot to Kate and me even more so because we would never have expected them. Perhaps that is a good lesson for all of us. I wonder who we can surprise with a word of kindness in the coming year.

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Expressing Gratitude

One of the ways in which I, as a caregiver, have been fortunate throughout my care for Kate is her own expressions of gratitude. I know that many others who care for a person with dementia are not on the receiving of these acts of appreciation. I feel for them. It is enough to have one’s life organized around the care for another person. To do so without any sign gratitude would be unbearable. When you love someone and that person acknowledges her gratitude, caregiving is much easier.

It is true that Kate is more irritable than she was before AD. Those moments are usually rather fleeting. On the other hand, her expression of appreciation has punctuated the entire journey. It doesn’t occur all the time but often enough that it tells me she knows how dependent on me she has become. These expressions come in very small packages. Here are two recent examples.

The other day in a restaurant without anything to prompt her, she said, “Thank you for everything you do for me.” I don’t know why she said it at that time, but I interpreted it as her recognition that I do a lot for her. Another occurred last night. As we walked to the car after dinner, I walked ahead of her and opened the car door for her. She said, “You didn’t have to do that.” I said, “I know I didn’t. I just wanted to. I want to take care of you.” She responded, “You do. You take very good care of me.”

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A Good Day Ahead?

This morning when I returned from my walk at 7:45, Kate was in the kitchen getting herself some juice and yogurt. She was in a pleasant mood and showed no obvious signs of whatever was affecting her over the past few days. I am optimistic that we may have gotten through this one. In some ways, I am sorry that we went to the doctor yesterday for what may have been a false alarm. That meant I had to cancel the sitter at the last minute, drop my own plans for the afternoon, and get the doctor’s office to squeeze us in. On the other hand, the visit gave me reassurance that there wasn’t something seriously wrong unless the lab test identified something. I felt better when we left the office. Of course, the best news has been Kate’s apparent recovery. Now we can move forward with other things.

Among those other things is a trip to Fort Worth a week from today. We are going back for our 55th college class reunion. I am really using that as an excuse to get us back to Kate’s home. I am looking at this as her last trip home. I have arranged for her to see family members and several close friends that go back as far as elementary school.

Last week I exchanged text messages with Kate’s cousin who lives in Dallas. I arranged for us to take her to lunch next Wednesday. Yesterday I got a phone call from one of Kate’s longtime friends from Fort Worth. I had spoken with her a couple of months ago about getting a small group of friends together for lunch while we are in town. She told me that she had made the arrangements and was confirming our plans.

We will also be with family. Our grandson, Brian, is a freshman this year. Our son and his wife will also be there from Lubbock. Kate’s brother and his wife who live in San Angelo be there as well. Another cousin who lives in Fort Worth has arranged for all the family to get together after church on Sunday. I am hoping this will be a special time for Kate although I realize that she will be unable to recognize that this is likely to be her last time home.

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A Successful Experience with the New Sitter

Today, Mary, the sitter, came back for her second visit. As Kate and I were nearing the end of our lunch, I mentioned that I was going to donate platelets and that Mary would be coming back again. Knowing that she would not remember Mary, I said she was the person who visited her last week. She gave me a look that implied she wasn’t thrilled about that. Although that did discourage me a little, I considered that she sometimes reacts the same way when I mention that a friend is coming over or that we are going to lunch with a friend. In these instances, I am confident that it is because she does not remember the person.

Mary arrived while Kate was outside cleaning out a flower bed in the front yard. I went out to tell Kate that I was going to leave for my platelet donation. Mary had gotten out of her car and was following me down the driveway. After my saying goodbye to Kate, she greeted Mary warmly. I felt good about that because it sounded so genuine.

When I returned home, Kate and Mary were seated in the family room where Kate was looking at a family photo album. Mary said Kate had shown it to her and taken her through the house. Kate had a smile on her face that indicated that she was very comfortable having Mary. Then Mary left. As she was walking out the door, Kate said, “She is really good.” I am back to feeling good again. The only thing is that Mary cannot come next Wednesday; so the agency is going to send yet another new sitter.

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Success with New Sitter

I am happy to report that Kate’s response to the new sitter, Anita, was a smashing success. Kate liked her and accepted her immediately after meeting her. Anita arrived about five minutes early (a good sign). Kate was working outside when she drove into the driveway. I went out to meet her while Kate continued tending to her shrubs. I took about 10 minutes to brief Anita on my expectations and to explain a few things. Then I went outside to invite Kate to meet her. Kate was very compliant, coming right in when I called her.

I brought her into the family room where I had left Anita. As I introduced her to Kate, I said, “You remember that I have not felt good about leaving you alone. I am going to the Y and then to meet Mark for coffee. Dee is . . .” At this point, Kate said, “is my ‘guardian’.” This was said in a very natural, positive manner. That led us into a brief conversation about ourselves just to get acquainted. I had an immediate liking for Anita whose has a beautiful smile and great warmth. I mentioned that Kate likes to work outside and that she might want to do that while I was gone. Then Kate asked Anita if she would want to work with her. Anita said she would be happy to stay with her outside. I told them they could choose what they wanted to do. I didn’t want either of them to feel they needed to spend the next 3 ½ hours outside. I knew that might not be a problem for Kate but wasn’t sure about Anita. Before I left, Kate mentioned another time that she was her guardian.

I returned home about 4:45, 15 minutes before Anita was to leave. I found both of them in the front yard where I had left them only Kate was on the ground pulling weeds out of the flower bed in front of the house. Anita was standing near her. When I walked over to them I commented on the fact that they were still outside. Kate said something about their enjoying themselves and that Anita had been her “companion.” Before Anita left, Kate mentioned one more time that she was her companion and that she had enjoyed her.

When we got inside, Kate commented on how Anita knows just what to say. What a relief for me. It seems like Kate has completely accepted her. I am going to feel a whole lot better about leaving from now on.

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Get-Acquainted Visit with a Sitter

I can breathe a little easier, at least for the moment. The get-acquainted meeting went well, at least in terms of Kate’s response to the sitter. I did not tell Kate that anyone was coming. When I saw the sitter drive into the driveway, I went out to greet her. I asked if she had been briefed on the fact that Kate didn’t know about my making arrangements for a sitter. She had. I brought her inside and asked her to take a seat in the family room and went to get Kate who was on her iPad in her room. I told her we had company. She didn’t ask any questions or look surprised. She just put on her shoes, got up, and walked with me into the family room.

I introduced them. Kate asked Brittany to take a seat and then took a seat across from her. Kate very quickly assumed the role of hostess. She asked Brittany if she were from Knoxville. It turns out that she moved here from New York about ten years ago when her mother was stationed at Houston Army Base in Kingston.  In a few minutes, there was a slight lull during which time I jumped in with a question or two. We learned that she is 24, has a 20-month-old boy, and that her mother and at least two siblings live in Knoxville.

After that, I asked Kate if she could tell Brittany about our meeting and courtship. She hesitated, and I asked if she could remember where we first met. She did. That led into a discussion of our first and second dates, our courtship, and the role of the funeral home where I was working at the time.
From there we had a little back and forth of our telling about our lives and family and her telling us more about herself. When it looked like we might be running out of steam, I asked Kate if she could tell Brittany about the kinds of things she does with her time. At first, it looked like she would not be able to think of anything. I thought she might mention the yard. What she said was that she was working on photo albums. She started describing what they are like. One of the albums that she and her brother had created about her mother’s family was sitting on the coffee table in front of me. I picked it up and handed it to Kate and said, “You could show her this.” When Kate opened up and started to show her what the book was like, she pointed out a picture of her mother with her mother and father and sister. Brittany commented on how much Kate looked like her mother. It didn’t take long for Kate to become engrossed in the album.

Since they seemed engaged, I decided to step out of the room while Kate showed her the album. I went into the kitchen and got something to drink and to work on a letter I wanted to send to someone at church. Kate was really enjoying the album and being able to share it with someone.

I didn’t stay away long, maybe ten minutes. I went back into the family room where they were seated. It had been about an hour and twenty minutes since Brittany had arrived. I decided we had learned enough on this visit. Before closing the visit, I said, “Kate, you haven’t told her about how much you enjoy working jigsaw puzzles on your iPad and your pulling leaves outside.” I thought it would be good for Brittany to know that because there could be plenty of times that Kate would want to pull leaves or use her iPad while she is here. After that, I thanked Bri for coming and said, “We’ll look forward to seeing you again.” Kate and I escorted her to the door and told her good-bye.

After closing the front door, Kate turned and gave me a puzzled look and asked, “What was that all about?” I said, “Well, we were interviewing her. Do you remember how I have told you that I really hate to leave you alone when I need to go someplace? I thought it might be nice if I had someone who could stay here while I am gone?” She asked, “How did you know her?” I told her that I didn’t, that this was my first time to meet her. Then she asked how I found her. I told her about the woman from agency we had met at Panera 2-3 weeks ago and that she had told me about her. Kate seemed to accept that and didn’t ask any more questions. She didn’t look disgruntled in any way. She said she wanted to get something to drink and then go outside. She got her drink, but she never went outside. I guess she forgot. She went back to her room to work on her iPad. She is still working there even though it has been almost an hour and a half since the sitter left.

Earlier I mentioned that the visit went well, at least from the way Kate responded. That begs for a little more explanation. That has to do with my own reaction to Brittany. She is an attractive young women, but I had hoped for someone that might be a little more (maybe a lot more) extroverted. She wasn’t quick to engage in conversation. Kate did a good job initiating conversation, but there is only so far that she can go. I am glad that I was here to fill in the blank spaces in the conversation, not just by my own comments but through questions or prompts for both Brittany and Kate.

During the visit and since, I have considered that a more introverted personality might not be a bad thing. I know that Kate would tire of someone who talks a lot. That is great for a short time, but big talkers wear her down. I know, she often asks me not to talk.

My plan is to let the agency send her again on Friday and see how that goes. She is supposed to stay for four hours. I plan to go to the Y during that time. That should be a better test for how they get along. I am going to encourage Kate to feel free to either work on her iPad or work in the yard. I will convey the same thing to Brittany.

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A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.

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How am I feeling?

The past two days I have felt more relaxed than I have in several weeks. The explanation is simple. For the past 18-24 months, I have served on a retiree engagement committee of the United Way. We have met monthly during that time. Our objective is to come up with a way to retain the support of our donors as they retire. Within the past six months, the committee’s activity increased. I moderated a focus group for them in early December. During the current year, I was in charge of a short online survey of donors 50 and older to assess their interest in maintaining a connection with United Way.

On the basis of this early work we decided to hold a luncheon meeting to explain the establish a new initiative for retirees. We invited everyone who had been in our focus group and all the survey respondents who expressed interest in learning more about Always United. I served on the subcommittee that was in charge of the luncheon. I also served as emcee of the event which occurred on May 1. This added more responsibility but was manageable.

It was just a couple of months ago that I made my commitment to speak to our Rotary club about my experience as a caregiver for Kate. While that was something that was easy for me to do in terms of my knowledge, it has occupied a good bit of my time. I wanted it to go well. There was so much to say I had to organize my thoughts and have a good outline of what I wanted to say. There was also a certain amount of anxiety related to the fact that this was my first public statement about Kate’s Alzheimer’s.

Not long after my commitment to the Rotary talk, I received a call from the senior pastor of our church asking if I would chair the program committee for a dinner honoring a former pastor. At first, I turned him down. I told him that my responsibilities for Kate made it challenging for me. I conveyed that the bigger problem was not that it would require me to leave her but that it would occupy my mind and add too much stress to my life. After thinking about it overnight, I decided to do it. I felt that in some ways it would actually be therapeutic for me. I enjoy being active and being with people. This would give me another way to accomplish that. I called him back and asked if he had asked someone else. He had not.

That led to my selecting a committee and then meeting with them weekly with emails and phone calls in between. In addition, I had numerous trips to church to talk with our communications director and our IT manager who were assigned to help us in any way we needed.

It was a terrific committee. I am glad that I accepted, but it did require a lot of work. I am glad to say that all three of the events I mentioned above went well.  All-in-all the three experiences were good for me. At the same time they were demanding since they all came at the same time. I am taking satisfaction in the fact that things went well and that I can now relax a bit before something else comes up.

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Nice Weekend

Although I may have thought and given the impression that all of our good days are behind us, I am happy to report that “it isn’t so.” The past few days including the weekend were very nice days for us. I’m not entirely sure what has made the difference. One thing that has been different during the past week is a new approach to clothing for Kate. First of all, we bought 3 new pair of slacks for Kate about 10 days ago. I have tried to keep them in my closet after she has worn them. I have also identified several other pairs of slacks that fit her and brought them to my closet as well. At the same time, and I think I have mentioned this is previous posts, she has asked for my help in finding the right clothes. That has led me to pick out clothes for her on several days. I would get a pair of slacks from my closet and find a top to match and put them on the bed in her room/office. At least two times this hasn’t worked because she didn’t realize/remember that I had put them there for her to wear. I have learned to be more direct in choosing the clothes and telling her at an appropriate time what and where they are. It has to be done at the moment she is ready to get dressed. The best news for me is that she has accepted my doing this. This morning she accepted the slacks I got for her to wear to Panera where we are passing some time right now, but she said, “I’ll pick out the top.” It is still discouraging to see her relinquish some of her independence, but it makes things a lot easier. She is getting less picky about what she wears; so that also makes it easier for me.

One other thing I am starting to do is identify clothes that need cleaning. Every Tuesday morning a driver from our cleaners stops by the house to pick up my shirts etc. I am going to include some of her things each week. I think that will help in terms of keeping her clothes looking nicer.

Although her favorite clothing store has been very helpful in the selection of new clothes for Kate, they are an upscale (i.e., expensive) shop. What she needs now for the most part is everyday casual wear. I think we will go to J Crew this afternoon and buy 3 or 4 pair of slacks and several tops to go with them. Then I think we (I?) will clean out the closet in her room and use it or a section of it for the everyday clothes. That should help both of us. I am not naïve. I realize that she can’t remember everything, but this will make it less confusing for her.

I continue to keep her as active as possible. She does not go to church with me anymore. That stopped just before Christmas. It is just too much for both of us to get ready for me to meet my Sunday school class. I come home right after class, and we go to lunch. Yesterday we went to a movie in the afternoon. She was able to rest at home after lunch and after the movie. We went to Opera Thursday at Casa Bella last week. We will be back there tonight for a special Italian dinner. In the past two weeks we have been to Nashville to visit the Greeleys, Ellen, and the Davises. She has seemed happier. I should also mention that she has spent a little more time in the yard which is a passion of hers. Oh, I almost forgot, we also joined the Shepherd’s Center. While we only went to one class last week, we will do more this Wednesday. We will also have lunch there. So all in all, things are not going badly even though her decline has not been arrested. As I have said before, we are grateful for what we have.