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September 14, 2015January 31, 2018

Telling More Friends

In the past 3-4 weeks, I have told a few more friends about Kate. The first of these was the wife of a former colleague of mine at UT. We had gone to dinner and a play about three weeks ago. (We have known her and her deceased husband since we moved to Knoxville. He died of lung cancer almost 3 years ago. When our children were young, they had asked us to be their son’s guardian should anything ever happen to them; so we have a lot of history with her.) I called her several days after we had gone out and told her of the situation. She responded with all the empathy of a long-time friend. She also asked what she could do. I told her nothing other than continue being a friend. She asked about the possibility of going to lunch with Kate once in a while. I told her that would work well. This past Friday she called and asked about a good time. I suggested today. That fit her schedule as well, and the two of them had a nice lunch.

A week ago today, I called Don Crawford who is a member of our church. His wife, Carol, also has Alzheimer’s. I told him that I had thought about calling him a number of times and went on to tell him that he and I were facing the same thing with our wives. He had not suspected. We had a comparatively brief conversation. He did let me know that they had known about Carol’s diagnosis for 8 or 9 years. This is the first spouse of an Alzheimer’s patient that I have spoken with whose reported a gradual decline somewhat like Kate’s. It also sounded as though their situation was quite similar to ours as well. I hope to talk with him at some time in the future to learn more.

This past week I needed to print something and have to use Kate’s computer to do that on the printer at home. When I did, I noticed a couple of emails to Kate from her librarian friends. This is a group of about 5 former public school librarians. They had set a date for lunch this Thursday. Kate was the only one who hadn’t responded. I replied for her that she would be there but would leave early to meet a doctor’s appointment.

After sending the email, I decided the time had come to inform the group about Kate. Over the weekend, I called a member of the group. She is another long-time friend whom we had also met through university connections. I did not reach her but left a voice mail and gave her my email address suggesting that was a good way to reach me. She sent an email last night. This morning I spoke with her about 30-40 minutes.

In addition, I sent an email yesterday to someone who now lives in Kentucky. I used to work with her when she was with one of my major clients. We had been communicating about travel to France. I decided to let her know about Kate. So now the group of people who know about Kate has expanded, and my expectation is that this group will continue to expand over the next 6-12 months. After that, I expect that it will be commonplace.

I am feeling a bit relieved to be able to let people know. I think it may help them understand any changes they see in Kate. Probably more important for me is that it gives me a sense of comfort that I am not concealing everything which allows my base of support to enlarge. That will become more important in the next year.

June 5, 2015December 19, 2017

Two Surprises

Yesterday two things happen that are further signs of Kate’s recent decline in both short-term and long-term memory. The first occurred when I attended a communications committee meeting of the United Way. On the way over, the thought hit me that Ross Kilgore, CEO of UW, might indicate knowledge about Kate. When I saw him, that is exactly what happened. He asked me how she was “doing.” It was clear this wasn’t the usual inquiry. ” I responded that she was getting along well. I told him that we had been very fortunate and were grateful that we had been able to enjoy such a long period of time without any major disruption in our lives. I also told him that 2015 was the beginning of a new and more difficult phase. He expressed concern and told me that his mother had had AD. He also mentioned anpther couple who are going through the same thing. I told him I had spoken with the husband just the day before. The significance of this exchange with Ross is that the word is beginning to get around. In most respects this is a relief. I don’t have to be as careful in guarding Kate’s secret as I have done in the past. I also don’t worry that someone is going to say something to Kate.

The second, and bigger, blow occurred last night at Casa Bella. We were there for their opera night. Our regular order is to split a single order of the veal piccata and then share one slice of amaretto cheesecake. Last night, however, I decided to order the piccata for Kate and try something else for myself. I expected her to say something about this change since we have eaten the same thing for so many years. She never said a word. From our conversation afterwards, I know that she didn’t notice that is what I had done.

The even bigger occurrence was that when the waiter asked if we wanted dessert, she asked him what they had. She has loved their cheesecake for years. It is one of her very favorite desserts. Even when she is trying to watch her eating, she and I split the cheesecake. Interestingly, the waiter mentioned the their bread pudding but not the cheesecake. Before Kate could order, I said, “We usually get the cheesecake.” This memory failure is significant because it is a clear indication that something of great importance to her over the years is now drifting away.

Although I have said since late fall that 2015 was going to be a different year, it is painful and anxiety inducing to experience the reality of this decline. I am now more clearly facing a major change in the nature of our relationship because so much of what is involved in a marriage involves the sharing of common memories. I don’t mean to suggest that they are all gone. We are quite a way from that I hope. Nonetheless, she is declining more rapidly than in the past.

April 3, 2015January 20, 2018

Good Friday Update

Wednesday afternoon (April 1) Ann and Jeff Davis were in town; so we arranged to meet them for dinner at Il Giorgioni at 5:30 pm They were not sure when they would be finished with a hearing at the State House; so they called when they got out to arrange the time. Kate was outside working in the yard. I went out to her and told her that the Davises had called and we would meet them in about an hour. She said she would come in to take a shower and dress. I came back inside. Knowing that we had plenty of time, I didn’t worry when she didn’t come inside right away. She did so in about 20 minutes. There seemed no reason to worry. When I saw that she was getting dressed, I still did not worry. When she wasn’t completely ready 10 minutes before I had planned to leave, I went to her to ask how she was coming along. She told me to leave her alone. I did. I didn’t want to start another panic attack. When it was time to leave, I checked on her again. She was indignant and again told me not to talk and leave her alone. Finally, we got in the car at 6:00, the time we were to meet the Davises at the restaurant. At 5:25, I called Ann and told her we were running a little late.

After getting in the car, Kate asked what time we were to be there. I told her we were to have been there 30 minutes earlier. She then went into a panic and said she didn’t know. She wanted to know why I didn’t tell her. I told her I tried to explain but that she wanted me to leave her alone. This attack was not as severe as the last one, but she was still teary when we arrived in the restaurant parking lot. We took a moment for her to compose herself and went inside. She was very embarrassed about running late and felt it was her fault. She apologized to Ann and Jeff for being late.

Just before the Davises left to go back to Nashville, Jeff said he wanted to go to the men’s room. I said I needed to go as well. In the men’s room I told Jeff about Kate’s Alzheimer’s and explained that is what accounted for our being so late. Yesterday afternoon, I called Ann and apologized for telling her through Jeff and wanted to give her a little more information. She was quite tearful throughout the conversation and had me tearing me up near the end. She wanted to know what they could do. I told her it would be nice if we could come up to have lunch with them sometime in the near future. She mentioned that they are coming through on the way back from North Carolina next week and could have dinner with us. I told her that would be great.

February 22, 2015July 30, 2018

Still Believing No One Knows

Last night Kate and I sat in front of the fire and just relaxed. It was one of those rare times that she has spoken about her AD. We talked as we have before about how well we have gotten along since her diagnosis. I told her I thought the past 4 years had been the best of our marriage. She hesitated and didn’t quite agree. She preferred to say that we have gotten progressively better with the passage of time. A little later he did acknowledge that the past 4 years have been especially good ones for us.

In the discussion she said something she has mentioned before that no one knows about her condition except Ellen, Ken, and Virginia. She even noted that no one would suspect. Quite naturally, I do not dispute this notion. This is the way she wants it. I want to support to the extent I am able. When she says these things, I must admit to a tinge of guilt for having told our children and even more for telling special friends like the Greeleys and Robinsons or my staff.

Perhaps because I know that Kate’s PEO chapter is aware and that another friend told me he had heard about Kate, I am becoming to suspect that others at our church might have an idea. The other day someone asked me if Kate is with me on most Sundays. I have told her before that Kate is in the library. Sometimes she asks if Kate is in the library. This morning someone else asked me how Kate is. I may be especially sensitive now, but I wondered if she might know. Several other people ask about her, but all of the inquiries could be just normal interest. One day, however, I know that it will occur because they are aware.

I have awakened in the middle of the night several times in the past few nights. I have managed to get back to sleep, but it is has taken more time than I have been accustomed to in the past. Previously, I would wake up and then go right back to sleep. I don’t know if this is just something that is natural with aging or the stress that I feel as I try to keep things in order and think about the future when it will be more challenging.

I feel that my recent contact with several other friends and family members may be an indication of my feeling greater stress than I have had in the past.

December 21, 2014January 6, 2018

Wondering About The Future

Kate and I are fortunate that we are able to get along so well. We enjoy life and each other. At the same time, I believe I have also noted that she has had a gradual decline in her memory, primary short term but also long term memory.

Occasionally, I have raised a question about the future. For a long time, I was concerned about when to let the children know. Then I wrestled about when to tell others. I have told a number of people over the past year. I first told our pastor because he had noticed something different about Kate. Next was (I believe) Ken and Virginia right after Dad’s 100th birthday. In January of this year I told the children. After returning from New Zealand, I told Tom and Carl. This summer I told my staff. This fall I told the Greeleys and a couple at Chautauqua friends. I also told one of the church secretaries at church.

I am still wondering about telling two of Kate’s cousins. I am thinking of doing so in January. When I tell them, I will also feel the need to tell Naomi Richardson. She was the woman who had been a long-time friend her Kate’s mother. She also worked as a local manager of her mother’s everyday affairs including supervision of in-home caregivers.

More than wondering about when to tell people, I also wonder what life will be like this time next year. I am already looking carefully at our travel plans with the anticipation that it will be more difficult for us to travel after next summer. Right now the only foreign travel I have planned is to Switzerland in May. I think that could be our last foreign trip. In addition, we are planning a trip to New York in June with Jesse and her boys and Kevin and Taylor. The only other trip planned at this point is our annual trip to Niagara-on-the-Lake and Chautauqua at the end of July and the first week of August.

One reason I write on this now is my reflection on the very slow decline that Kate has experienced. I see that many things are more difficult for her now than in the past. One of those is in short term memory. She forgets things very quickly. It is as though it goes in and out of her brain at almost the same time. The other thing I notice is how difficult it is for her to use her computer.

I have just taken a 10-minute break to help Kate. She had been trying to send online Christmas cards while I was writing today’s journal entry. She told me she was going to take a break, that she was just too frustrated right now. I told her I would help her later in the day. I had also volunteered to do so after we returned from lunch, but once again, she tried to do this independently but just couldn’t do so. She keeps making simple mistakes that prevent her getting any cards out. These are not isolated incidents but very common ones.

A few minutes ago, she walked into the kitchen. She was trying to zip a jacket to wear outside where she is now pruning her plants. This is her therapy. She begins to go stir crazy in the house all day working on her computer or doing jigsaw puzzles. She started pruning months before Dad’s 100th birthday in early 2013 and hasn’t stopped since. In fact, the shrubs never did grow back fully during the summer. Though now is a good time to prune, they don’t need it. It simply gives her something to do that doesn’t frustrate her.

Back to the jacket. She entered the kitchen trying to zip the jacket. She gave up in frustration and asked me if I would zip it. When I tried to do so, I noticed that she had her jacket on inside out. This, too, is a common occurrence. It is increasingly difficult for her to differentiate such things. Once she put the jacket on the right way, I zipped it up, and she went outside to prune. In a moment, she called to me asking where her new clippers were. She was referring to the clippers we bought at Lowe’s on the way home from lunch. I know these must be the 7th or 8th ones I have bought for her since the beginning of spring. We both looked for them. She finally found them in the garage. She had put them in a good place, but not the usual place for them. She was pleased that she had found them and not I. Each time I solve a problem for her it is a setback for her. When she is able to solve her own problems, she feels better.

When we were at lunch today, I mentioned a couple of things to which she asked, “How do you remember those things?” She is amazed when people remember simple things because she cannot do so. Along this line she continues to give higher praise to others and to performances than I believe justified. This is a good quality, but I take it as a clear indication of her inability to differentiate the good from the bad or better said, what is good and what is outstanding. These and other things make me wonder what will she be like a year from now.

One final note. She expresses things that confirm that she doesn’t realize how far along she is. Last night, for example, while she was telling me about her plans for several books of family pictures she is working on, she said there was no hurry. There is plenty of time. I encouraged her thinking and told her she could just work at her own speed. There is no deadline. My prediction is that she will never complete any one of the three (I believe) she is working on. I am sure she will experience increasing frustration trying to work on the computer. That will surely mean that she cannot finish this project that she values so much. This is sad.

December 16, 2014January 6, 2018

PEO Sisters Know.

On Sunday we went to a Christmas concert. Kate’s PEO chapter took this opportunity to make it a club social as they did last year. I went to get the tickets Sunday morning and didn’t find them where we keep tickets. I remember that Kate brought them home from a meeting and had them in her PEO bag. I thought I had removed them and put them with our other tickets. I obviously didn’t do so. Kate just walked in. Will continue later.

Next Morning, 7:41 am

Just back from my walk. Kate has gone back to bed, a common pattern for her. She gets up and eats. Then she gets back into bed with either her iPad or her laptop. She gets sleepy and rests a while.

Let’s go back to Sunday. We didn’t have our tickets; so I called a PEO sister who arranged for everyone’s tickets. She didn’t answer, and I left a voice mail message. She called back later, but we were at the concert or dinner.

Yesterday morning I called Linda. I wanted to apologize for not taking care of the tickets and also to see if she understood Kate’s situation. As I suspected, she said they all knew. She indicated that is why they someone to our house early on Thursday – just to make sure all was in order. I told her that the diagnosis had been 4 years ago this coming January 21. She seemed quite surprised that it had been that long. I didn’t tell her a lot but did ask that she keep in communication with me regarding any obligations that Kate has (like meetings, etc.). She agreed to do so.

Kate and I both continue to believe that she is getting along pretty well. Kate especially does not realize the full extent of her condition. At lunch the other day she asked me if I had seen the ad for a movie about Alzheimer’s. I asked if she meant Still Angie? She said she thought so. She told me she didn’‘t want to see it. I told her I had read it and that the situation was different from ours in a number of ways. First, Angie’s condition progresses rapidly over a 2-year period. Second, Angie’s husband is focused on his career which leads him to be much less sensitive than I think he should be. That led to her telling me that she thought she was doing well. She mentioned that she does have to ask me about names. She didn’t say something that I believe she also realizes. She asks me many things repeatedly – what time we are going someplace, etc.

One thing I am asking myself now is how blind I might be to her condition. I clearly believe she is much further along than Kate does, but I have a hard time imagining that in another year that she will be as far along as Angie was at the end of two years. In time I am sure I will have an answer to this question.

November 3, 2014January 7, 2018

The Good Thing Is . . .

This past Saturday night Kate and I went to a wedding. This was the first time that two of my staff members had been with Kate since I told them about her Alzheimer’s in July or August. This morning as the three of us talked about the wedding, I asked them if they would have known about Kate’s illness if I had not told them. They said absolutely not. They recounted conversations they had had with her and how comfortably she had handled herself.

That led me to tell them something that I had been thinking about lately and have mentioned in my journal on previous occasions (I think). One of the really good things about Alzheimer’s is that there is such a long period between the time the patient and her husband recognize the problems and the point at which others notice. Clearly this isn’t true for everyone. I still remember that over two years ago this summer our pastor invited me to lunch and asked if Kate were all right. He made it clear that someone had noticed something different about Kate. It is equally obvious that in more extended conversations like those of Saturday night that even people who know can’t detect any signs.

It is also worth noting that in a conversation with Kevin this past Friday morning, he told me that he still would not know if I hadn’t told Jesse and him earlier this year. He hasn’t seen her, but he has had phone conversations some of which have been lengthy. I consider this aspect of Alzheimer’s to be a blessing for the patient and her husband.

The realization of this positive aspect of the disease has made me think a little more about the need or desire to tell others about her condition. I have been telling a few people this year and have thought of telling others. In particular, I have thought about telling Bruce Morton, my old college roommate. I have hesitated because we both know Nancy Hardwick whose husband, Charlie, has dementia. They were both classmates of ours at TCU. About 10 days ago, Bruce asked me if I knew anything about how Charlie was doing. When we last saw him at our 50th class reunion, I knew from Nancy but could not tell that he had dementia. This made me think that Bruce might be in touch with Nancy. Since is originally from Fort Worth and has both Fort Worth and TCU ties in common with us, I would not want her to know before Kate’s family. That has made me wonder if the time has come to tell them. We will be in Fort Worth the weekend before Thanksgiving. I had already decided I didn’t want them to know before the visit but thought that after the visit might be the right time. Now I am thinking there is no reason to tell them until later. We will see in time how I handle this.

Jigsaw Puzzling

Several times lately Kate has said she loves her iPad. That is quite a shift since I got it for her a couple of years ago. She hardly used it for a year, but more recently she has gotten into it. I believe the major attraction has been the ability to work jigsaw puzzles on it. It appears to be one of the first things she does in the morning, and one of the last things she does before going to bed. It is not an obsession, but I believe it is a result of its being something, like pruning, that she is able to do and to do at her own pace. No one is pushing her.

At the moment she is working a puzzle at a time when I believe she should be getting ready to get her hair cut. We have arranged for her to see a new hairdresser since her former one is no longer able to do her hair. It has been over 4 weeks since she has had her hair done. At any rate, I know she is eager to get her hair done, but she is still working on the iPad. Whoops, I just went back to the bedroom to check on her. She is up. The bed is made. She must be getting her clothes on.

August 29, 2014January 20, 2018

So this is how it happens.

It has now been 3 years and just over 7 months since Kate’s official diagnosis. She chose not to go public with the news and continues to feel that way. She does not want to be treated like a patient. I have often wondered when the time would come that people would know our secret. I am now beginning to see how this process unfolds.

The very first person I told was our pastor. That was a little over 2 years ago, I believe. I only told him because he had asked me to lunch and during lunch asked me if Kate was all right. When Virginia and Ken were in town for Dad’s 100th birthday, Ken asked if Kate was all right. That prompted me to tell him. Then he told me about his own situation.

I told our children just before we went to New Zealand. I was motivated to do so because I felt Kate was declining more rapidly and felt they should be aware especially if something happened on the trip. After returning from the trip, I told my friends, Tom and Cal. I felt the news would help them understand some of my emails regarding our lifestyle. A few weeks after that I told Ellen. She is Kate’s closest friend. Shortly after I told her, Kate told her as well. That was a big step for her. To date Ellen is the only person she has told except Ken.

A few weeks ago, I told my staff. Once again, I felt it would help them understand my situation and my increasing distance from the business operations of the company. Then I told my dentist whose mother has Alzheimer’s. He told me I should be free to speak with his father should I want to talk with someone who has gone through this experience.

We visited with Scott and Jan Greeley a few weeks ago. Scott asked me if everything was all right health wise. I told him. I didn’t have time to say much but arranged a phone call two days later in which I laid out the whole situation.

Yesterday I had lunch with two friends we know in the arts community. The wife directs a choral group. They asked me to serve on the board as they are planning to retire two years from now and thought I might make a good fit for their needs during this transition time. This is the kind of thing I might normally accept. Instead I felt I had to let them know why I couldn’t accept. They represent the first people I have told who are not family or close friends.

In addition to these people I have told there are a couple of others that know Kate’s diagnosis from being around her. The first is her hairdressernand her daughter. The other is her PEO sisters. One of them has a husband with Alzheimer’s and mentioned to me that she knew what I was going through and would be thinking of me.

I am still not ready to tell everyone, but I am thinking about telling three other friends, Ann and Jeff Davis and Dorothy and Mitch Hinely and two of our friends from our days in Madison. These are longtime friends who live outside Knoxville. I almost called Ann and Jeff today but backed out. I will probably tell all of them very soon.

August 18, 2014March 6, 2018

Email to Kevin

Aug 18, 2014, 2:12 PM

Kevin,

I believe the time has come to tell the children about Mom. Heather will not be surprised. Based on the things she has observed on our trip, she will be better able to understand Mom’s behavior. I know you will be able explain things in a way that will be right for them. Please make sure that they know that Mom prefers that people not know.

We loved our trip with Heather. We had only two low points. The first, of course, was the musical on Friday night. The second was this afternoon when Mom was surprised that Heather was not going back to Knoxville with us. The amazing thing was that she was with us the whole time we were talking about and then arranging for her to catch an earlier flight out. She simply didn’t understand. She thought we had discussed her coming to Knoxville and going shopping at Belk’s. She was upset with me for not arranging for her to come to Knoxville. It is sad for me to see this kind of confusion, but this is only the beginning.

Love,

Dad

August 21, 2014, 10:09 PM

Dad,

Thanks for bringing this up. I have had a heavier heart since I read your e-mail and Mom called my cell number early Tuesday not clearly understanding whose number was on the Caller ID. Soon I will discuss with Rachel (I have wanted solo reflection time) and begin preparing for a conversation with our kids. All along part of me has wanted to be more open about what is happening countered by not saying a whole lot. Either way, my goal is to show honor, respect and dignity at all times to the Mom (and Dad) God gave me.

Hopefully I can have this talk with Brian, Heather, and Taylor relatively soon. Then I would like to have a phone call with you afterwards to share. You and I are due for a talk anyway. All three of our children are astute yet Heather is much more verbal. Upon her return Monday she’s said nothing about noticing changes in Mom (to me at least and Rachel hasn’t told me anything she has heard). In fact, she said you and Mom mentioned having Jesse go with the two of you with Ron, Randy and Taylor all to NYC because an extra adult makes sense to look out for all the kids. I comically responded, “If an additional parent needs to go and Taylor is going, what about me?” Heather corrected my grammar (I was right) during our talk and said Mom corrected her grammar while in NYC, expressing a little frustration. My response was, “Nan will always be correcting grammar and has done so with Aunt Jesse and me.”

I will keep you posted before we talk with the kids and then we can find time to speak. You are an inspiration and are giving me a wonderful example of service and sacrifice.

Love, Kevin

August 22, 2014, 8:30 AM

Kevin,

Thank you for your very thoughtful and sensitive response to my email. I knew when I sent it that you would be able to present this to the children in the best way for them and for Mom. I am also touched by your grasp of the sadness that goes along with watching someone you love gradually lose her ability to do everyday things. Since you mentioned the telephone problem, you will also get a picture of the situation with this additional note. She was trying to get our phone messages when she called you. At first I didn’t recognize how much she was struggling to do it. She is also trying to be very independent; so I try not to jump in too quickly when she needs help. (Heather told Mom that I worry about her.) Finally, she gave me the phone and said, “Here, you do it.” This just illustrates some of the little things that she has trouble with. She struggles to do many simple tasks, and it frustrates her. The day we met Heather in Nashville we had lunch with Ann and Jeff Davis. Mom later told me that when Ann asked her where her brother and his wife’s summer cottage is located, she couldn’t remember and said, “I’m not sure. I think California.” That’s a long way from Michigan.

I feel the need to reiterate that despite Mom’s decline we continue to enjoy life. She lovedn our trip with Heather. There are many things she won’t remember, but she will continue to have a special feeling about our time together. While Mom and I rarely talk specifically about her Alzheimer’s, we do mention things (specific instances of memory problems) occasionally and even laugh about them. That was the case yesterday when she received a call from a friend from the Friends of the Symphony. I answered the phone and told Mom who was on the phone. She didn’t remember the person at all, but she carried on a good conversation with her, even expressing enthusiasm upon learning that the person (a widow) has become engaged. When she hung up, she told me she couldn’t remember this person at all. I told her she does a good job faking it and continued to say you do a lot of that. She agreed and laughed.

I will be interested in hearing when you have told the children and how they react. At their ages, I wouldn’t expect anything dramatic from them, but I think it will help them better understand our situation now and in the future.

Love,

Dad