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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.

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A Bright Spot

Before going to bed, I noticed that Kate was decorating the house for Christmas. I had doubted this was going to happen. Earlier in the week, perhaps the week before, she had gotten out a few things and put them on the sofa in the family room. They hadn’t moved since being placed there. When I went to the kitchen this morning, I noticed that the table was set with Christmas placemats and plates. This is a bright spot for me in that she hasn’t completely let go of things like this.

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Kate’s Birthday

At the moment we are both sitting in front of the fireplace on a cold, overcast day. It is a bit dreary but we have no rain. Kate  is having a good birthday. She got a call from Sharon, her cousin in Dallas. Ellen hosted a surprise birthday lunch at one of her favorite lunch places. She was totally surprised. I hadn’t mentioned anything about the lunch, and she never asked. One of the things I have noticed is that Alzheimer’s  has led to her not thinking about such things. It is easy to surprise her. She doesn’t read any clues that something is up. In this case, the only thing I said was thirty minutes before leaving. I told her we were going to meet Ellen for lunch.  She didn’t ask or say anything. She just went along the same way she would have on a typical day.

She has heard from a number of her Facebook friends. Several of those were responding to a video I had posted on my Facebook page as well as hers. I had selected pictures of her at different ages and places from 1941 to 2014. This was a short video (about 13 photos), but it gave a nice portrait of our lives together, especially places we have traveled.

This leads me to point out something else that is indicative of her Alzheimer’s. She hasn’t thanked me, hasn’t asked how I made the video, or even how I found two of the pictures which I had gotten out of an album her father had made before she was five or six. In the old days, she would have acted very differently.

The big hit was the luncheon. She was taken by surprise and mentioned it several times after we got home. I am so glad Ellen did this.

Tonight we go our for dinner. Since we eat out every night anyway, that will seem like an ordinary dinner.

I am trying to imagine what she will be like next year at this time. It hurts to think about it.

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Email to Jesse and Kevin

Dear Jesse and Kevin,

 I wanted to let you know a couple of things. First, Mom received a surprise recognition at church today. Presbyterian Women gave her a life membership in their organization for her almost 20 years of service as the volunteer librarian. She was surprised and delighted. As you know she committed a large part of her life to the church library. It might be nice if you gave her a call or sent her an email congratulating her. I was a little concerned about having to create some creative story so that she would go to this luncheon. You probably would not know this, but she has never been involved with Presbyterian Women or one of the church circles. This may have been the first time she attended one of their luncheons. At any rate, it turned out to be rather easy to get her there. I simply said, “I wanted you to know that you are going to get a call from someone at church inviting you to the next luncheon sponsored by Presbyterian Women, and I think you should go.” I thought she would ask why. She never questioned it at all; so I didn’t have to resort to making up a story. The exception is that the person who called her talked with me and told me to tell her that she would bring her home if I would take her. What your mother didn’t know was that I had been invited to be present for the award; so I brought her home.

Second, is that two weeks ago today she told Ellen about her diagnosis. This is the first time she has told anyone. I don’t know what prompted her to do it at that time, but it came after several days of significant frustration over having to rush to find the right clothes and get herself ready for several events. It is interesting that for the first time I mentioned it to two of my friends, Tom and Stan, with whom I carry on a daily email correspondence. I suspect we were both feeling that the situation is getting worse and felt it was time to tell our closest friends. She, of course, does not know that I had already told Ellen a couple of weeks earlier and that I told Tom and Stan. Neither does she know that you are aware. She told Ellen that she wanted to be the one to tell you. She doesn’t, however, believe it is time for you to know. As I mentioned before, she does not realize how far along she is. She does clearly recognize that her condition is worsening all the time.

I am planning our summer as though this may be the last summer that we have the grandchildren for a visit or a trip. I would never say that to your mom. She is still looking forward to taking the twins and Taylor to New York. It is hard for me to envision doing this next summer. I still don’t think it is time to tell the children. Although they will begin to notice signs in the future, I suspect they could be with her now without realizing. Our trip to Lubbock this Friday and the following 5 days will be something of a test in that respect.

We are eagerly looking forward to a grand summer.

Love,

Dad

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A Better Day

Despite my anxiety for the past week, I have felt better today. That is largely because I finished my Rotary task (calling 25 members to get their pledges of participation in projects for the year), completed the budget for the music club, ordered tickets to The Met for our trip in December, helped Kate order a family album from Creative Memories, called Kate’s cousin who has been in the hospital, and called someone at church to check on flooding in her neighborhood. In addition, we are getting busier at the office. Although we have been making a gradual comeback, we are going to be busy from now up until just before Christmas. When I got to the office this morning, the staff was working out timing for the various projects. For the first time in 2 years, they will not be on furlough. At least through December they will work full time. They have been working only 4 days a week.

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A Reason for Celebration

I may have mentioned in an earlier post that Kate has worked with PEO on a scholarship program for deserving women. They have concentrated their efforts on women who have been out of school and are now trying to complete their degrees. Most of them are single mothers who are working in low-paying jobs while going to school at night. They also are women who are trying to complete their undergraduate degrees.

At any rate, over the past two years Kate has had some difficulty taking care of the various tasks that have fallen to her. In some instances she has simply not acted to send letters or get information that was needed. This year she has been much better at addressing her responsibilities. I think this is a function of her co-chair’s being out of the country during a significant part of the process. Kate really cares about this program and wanted this year’s applicants to get help from the national office of PEO. The issue this year was that she had to devote so much time to write letters of reference and to complete an online form that was required by the sponsoring PEO Chapter C. She wrote, rewrote, and rewrote again the letters until it was almost too late to submit them.

However, she received two letters from the national office on Tuesday of this week. I had brought in the mail and sorted out hers and mine. I left hers on the island in the kitchen in an obvious place so that she would notice them. I suspected they might be decision letters on their two applicants and that she would do the same and open them quickly. On Thursday morning when she still had not opened the envelopes, I opened them. Each was a letter announcing that one of the applicants had received an award and inclosing a check. In other words, both of the applicants received awards – 1 for $2,200, the other for $1,500. When Kate got up, I told her I had good news. She was thrilled. She had worked hard and was successful in getting her candidates through the process. Once again, it is a good example of how someone with Alzheimer’s can be both successful and unsuccessful. It is simply hard for her to focus on anything even something as important as this was to her.

Last night we went to the Bijou to see Joseph and the Amazing Technicolor Dreamcoat. In the car on the way to the theater we talked about books we were listening to. She is listening to her first Donna Leon Guido Bruneti novel. I have read (listened to) 8 of them and was curious about her reactions. I asked her to tell me something, and she said, “Don’t ask me anything.” It wasn’t said harshly and I never interpreted it that way. What she was really saying was, “I am unable to articulate or express what you want to know. Be patient with me.”