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How am I feeling?

In my comments in the previous post, I neglected to indicate how I am feeling about things right now. Let me try to quickly summarize this. On the whole, I am feeling all right as is Kate. We don’t dwell on her AD. We are enjoying being together. We are staying active – going to movies, theater, etc. We have learned to live somewhat comfortably with the reality that we are facing.

At the same time, I have to acknowledge that Kate in particular suffers frustration and some depression. It is not surprising that this is rougher on her than on me. She knows she is less and less able to do things that were easy for her in the past. I am having 2 reactions. One is sadness for her. I hate to see her suffer. I work hard to provide experiences that take her mind off of her lessening abilities. The second, however, is frustration with her and with myself. I have to admit that I am not always as patient I want to be. When I face a specific instance in which I fail to respond properly (with great understanding), I am frustrated with myself. I have often expressed this to her. Because she is for the most part normal, and because we have a long history together, I tend to treat her in the same way that I did years ago. Then I recognize that she is different now. She cannot help doing (or not doing) certain things. A typical situation would be that I have told her something that she has forgotten. I may say, “But I told you.” Then I recognize that telling her does not mean she will remember. Then I feel guilty. This actually puts an unusual burden on her because it adds one more instance in which she has done “something wrong.” This kind of thing happens a lot.

She doesn’t like me to give explanations nor does she like to give them herself. The other day she sent me an email asking if Taylor would be 10 on his birthday (today). I sent a reply saying yes. Then I started to give her what I thought would be an easy way for her to remember his age. After starting a sentence, I realized that she wouldn’t be able to understand what I was telling her.

One other issue I continue to have is planning for things that are months or even a year away. The biggest issues involve travel. We are looking at the possibility of a trip to New Zealand next year, perhaps January or February. If I felt there were challenging moments on the most recent trip to South America, what will things be like next year. Should I make plans? I face a conflict between arranging for her to make a trip that she has talked about for a long time versus the difficulty of our being able to handle it when the time comes.

Still the bottom line is that we are adapting well. I think the most depressing times for me lie ahead. How far ahead I don’t know.

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Patience in Short Supply

We were at Denny’s today. It was cold inside. Kate couldn’t wait to order. She wanted her coat right then. I went out to the car and got it. The irony is that I wait and wait for her because she moves so slowly, but when she wants something, she wants it “now.”

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So what’s it like after 2 years?

A week and a day ago marked two years since Kate’s diagnosis. I recall at that time how hard it was to fight back the tears when I heard the word. Since that time I have continued to wonder what things will be like in the next year. Or the year following. Or the year after that. Although I have continued to report the deterioration in her condition, she continues to get along well in many ways. I still believe that virtually no one suspects her AD. It is possible that Ellen may suspect, but Kate has never mentioned that possibility. The only person she has thought might suspect is her hairdresser and that because she has missed so many appointments. Now she gives me all her appointments (if she and I remember to do so). We both put them down on our calendars (our phone calendars).

The biggest toll is the one on Kate. She is regularly frustrated because of her inability to do even simple things. Last night she was frustrated over her Facebook page(s). Inadvertently, she created a new FB account. We hadn’t figured out how to delete the account, and I hadn’t taken the time to do so. I simply set it up so that the correct account was the default. For some unknown reason she has been able to get into the old account. I redid things that week, but she got back into the old account yesterday and requested a bunch of new friends who accepted. I suspect these were already friends on her “real” FB page. At any rate, she was frustrated and discouraged last night and said, “”I just can’t do anything anymore.” This is not far from the truth. My biggest concern in this respect is that she continues to get herself in situations that she may have difficulty getting out of. The neighborhood directory is a case in point. She is now working on being a volunteer tutor for a local high school. It is terrific that she wants to do these things, but she won’t be able to do them long or at all. Then she will feel frustrated.

I don’t say much about this, but I am watching her and my Dad go through the same journey. They both are quite similar in wanting me to go slowly with them. Neither one can process information quickly. Dad can’t follow long emails or videos. Kate is having a hard time following movies. It is common for her to leave a movie saying that she got so confused and that I will have to explain it to her. Sometimes the movie really is difficult to follow, but mostly it is her difficulty in following and understanding.

I want to repeat something that I have said a number of times before. Our relationship has been stronger than ever. My own attitude toward her is, I believe, the key difference. I have made a commitment to spend more time with her and to be patient with her. With respect to patience, I do not always meet my own expectations. I believe that is because she is so normal in most ways that I respond to her as though she is normal. When I stop to consider that all of the things that cause me to be impatient are not her fault at all but a function of her AD, I am able to understand. Ironically, then, I believe I will be more patient as she continues her decline. I feel the same way about Dad. I should add that Dad is further along on his journey, but there are many similarities between the two of them.

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Going Through Different Phases

Right now I feel a little rushed. I have things to do to catch up on that I put aside when I was preparing for Dad’s party. Then it was the 50th TCU class reunion. Now we are leaving for Jesse’s for Thanksgiving. I have bills to pay and arrangements to make for various things. In addition, I continue to have responsibilities with Dad. In particular, I have been trying to work out a way for his blood sugar level to stay at a desirable level. I am concerned because he keeps having low blood sugar levels. The staff is concerned because he has high levels. He also had surgery on his right forearm this past Friday to remove a squamous cell carcinoma tumor. He is scheduled to go back next Monday to have the stitches removed, but we are going to Jesse’s that day.

At the same time, I am just becoming aware that Kate and I are moving into a new stage in our journey. Even before her diagnosis almost 2 years ago, I was taking a larger role around the house. She had given up cooking some time before then – perhaps 3-5 years. The only big change that occurred immediately after diagnosis was my making sure I spend as much time as possible with her. I started taking her to lunch everyday instead of eating alone. I was still working a full day at the office then. As time passed, she became bothered by the time I would get home after visiting with Dad. That led to my taking off work a little earlier so that I could spend the same amount of time with Dad but get home a little earlier. Gradually I have stopped working in the afternoon. I go to lunch with Kate. Then spend some time at the house working on the computer or other odd jobs.

Over the past 2 years, I have now come become responsible for almost all of the household arrangements except decorating and tending to her plants. Both of these things have been escapes for her. At least that is the way I view them. She gravitates toward them because they don’t involve any frustration for her. They are simple pleasures.

I have taken over almost all of her financial things. I had already before she had AD taken care of family trust activity. But now I have her American Express bill emailed to me and make the payment through her account. She doesn’t even know how much her bill is. She doesn’t see it. This morning she asked me if I knew where she keeps our envelopes. She wanted to mail a check to someone. She said she normally would have done an online bill pay from her checking account, but she can’t remember how to do that. I first found the envelopes for her. Then I told her I would be glad to help her with online bill pay. She indicated she didn’t want me to do that. I said, And I don’t want to take over everything for you.” She acknowledged her own need to continue doing as much as she can.

She did say there are somethings for which she would like help. I suggested we change our daily routine a bit. From now on we will go to lunch. Then we will focus on things that she needs help with. Then I will go to Dad’s. She seemed to like or accept that suggestion. So this is yet another step along a very long journey. I still think most people would not know what she is going through, but for someone as close as I am to her, it is a continuous series of incidents that are reminders that she has AD and it is getting worse.

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Miscellaneous

Yesterday was not a good day for Dad. Kate and I had gone out to together to see him with plans to go to dinner afterwards. When we got there, he was under the sheet and spread as usual. When I tried to wake him, I noticed that he was much more difficult to awaken than normal. I tried more than 5 times to get him from a seated position and into his wheel chair without success. Finally, he was able to turn around and sit in the chair. He did greet Kate but not in the normal way that he would have. He was very groggy. I also noticed that he was perspiring. This was not a special surprise in that he was under the covers and wearing a sweatshirt and the AC was not on. Yesterday was in the mid-80s.

We went to the dining room where he mostly sat in front of his food. He did eat his tomato soup and sampled his carrots and chicken and dumplings. He was never very alert during the whole time we were with him.

Kate and I went from there to Hathaway’s.  We have often done so on a Wednesday. We sat in a booth in the bar and enjoyed our usual dinner of grilled salmon with asparagus. As we often do, we also shared a key lime pie for dessert.

Kate had been to see Dr. Reasoner before we went to see Dad. She got a prescription for another medication (Namenda) the doctor had mentioned in earlier visits. She also got a prescription for something to help with hot flashes. When signing in at the doctor’s office, Kate forgot Dr. Reasoner’s name and came over to me to ask what it was.

I believe she was down a little after the visit. We spoke briefly about the visit at dinner, but she said she didn’t want to talk about it any further. After finishing dinner, she said, “”Could we just go home and cuddle?” Naturally, I said yes. I put on some music and got into bed and held her. I have mentioned in other posts that we have embraced more strongly and meaningfully since her diagnosis more than a year ago. Such was the case last night. When I first saw her this morning, I mentioned our having a nice evening, and she couldn’t remember. This is yet another example of how Alzheimer’s affects both parties. She felt she had had an experience but was robbed of it because she couldn’t remember. I was also disappointed because part of remembering is remembering together. I know that we will have more of these experiences as time passes.

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Good Times

I have been reflecting lately on the nature of my comments and decided I ought to be more thoughtful about frequency, topics, and relevance to my musings. We’ll see where that takes us. The first sign of this is the title for today’s entry. Here’s the story,  and it’s short.

Right now we are at the peak of the spring flowers, and the weather lately has been grand. One of the things that Kate and I have enjoyed over the years is sitting outside on the patio with a glass of wine and just conversing. Last evening was one of those times. I had come back from my daily visit with Dad at Mountain Valley and began to prepare some chicken soup with some chicken thighs that I had cooked over the weekend. Kate was planting some new flowers on the neighbor’s side of our front yard. She came in just about the time I was ready to serve; so we took our soup and wine outside and enjoyed the view, the weather, the conversation, and just being together. These are moments we treasure, and, fortunately, we have many such moments even in the midst of some of the trials that we have faced. We enjoyed these long before we knew about Kate’s AD.

My spirits have been higher in the past few days which relates to the successful closing on the building, the exploration of new properties to buy with the proceeds, the good feeling that the staff has about our move upstairs, and the fact that we have had a number of new business possibilities. All these things remind us of how much we have to be thankful for.

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Everyday Issues

This past weekend Kate expressed more than usual frustration, some of which was directed at me. Our TV service had been out since the previous weekend, and she had wanted me to call AT&T to get it fixed. When it first went out, she said she was going to call AT&T. Later she indicated that she thought it would be better for me to do since she would not know what to say to them. As I am sometimes prone to do, I forgot about it during the day. It wasn’t that I was too busy to work it into my schedule although I did have a busy week. We spoke on the phone late Friday as I was leaving Dad’s for home. She told me she really wanted to get the TV working again. I could tell she was put out with me and asked if she were peeved. She said, “Well, yes.”

When I got home, I proceeded to contact them and after about an hour and a half, we got to the point at which they said they would have to send a technician to our house. Kate was pleased, and we ended up going to Casa Bella for dinner. During our dinner she said she was feeling better and indicated that she guessed she was feeling a little neglected. We didn’t go into a discussion, but I know we have periodic talks about how much time I spend with Dad.

The next morning she was on the phone with one of her PEO sisters. They were discussing the financial statement of a scholarship candidate. Before making the call, Kate went over the statement with me and made notes so that she would be sure of what she was going to say when she was on the phone. She is increasingly unsure of herself, especially when it involves things that are not in her skills area. Numbers are clearly one of those.

When she was on the phone, I was right next to her but working on the computer. She got very nervous and told me not to leave her. Everything worked out, but these kinds of things are added stress to her life.

Yesterday I got out my backup drive to back up my computer. I keep it in a box that has 2 corrugated pieces that hold it firmly in place within its box. When I went to put up the drive, I couldn’t find the 2 pieces of corrugated paper and asked her about them. At first she didn’t know what I was talking about. When I explained a little more, she thought she recalled that she had done something with them but couldn’t remember what. She looked in a number of places and finally found them for me. It was not a big deal, but this represented another instance in which her memory failed her. When she gave them to me, she said, “I’m just getting worse.” I tried to comfort her, but I can tell this doesn’t help. I think it is because she knows I also see it.

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Eight Months Since Diagnosis

This Wednesday it will have been 8 months since our meeting with Dr. Reasoner when she diagnosed Kate with AD. We have both adapted well, although we continue to have our moments of melancholy. I am convinced, and I believe Kate is as well, that she is declining more rapidly than we had hoped given that Dr. Reasoner described her condition as early onset AD. There are little things like operating the TV that seem to be more confusing than in the past. She has to ask me to help her with many routine tasks. Yesterday, she asked me how to operate the TV in our bedroom with the new DVD player that permits us to stream movies from Netflix. I think she would have had trouble with that without the AD. Then after I had shown her, she asked if I would show her how to turn on the TV in her office. Before I could do that she had done it herself. I can’t recall the exact conversation but in the latter part of the process of showing her how to operate the TV (which I know she will not remember) she said, “Well, remember I do have Alzheimer’s.” I said that I know but sometimes forget. She said, “Most of the time I do too.”

There are 2 other recent illustrations of her asking for help. She misplaced her shovel someplace outside and asked me to help her find it. We walked around the flower beds in the backyard. In a moment, she saw the shovel right after I had walked by it and didn’t notice it.

Yesterday afternoon she asked me if I would help her find a new plant that she had purchased on Saturday but couldn’t remember where she planted it. I walked around the flower beds again and found it. A little later she asked me where the plant was. I told her, and she remembered.

These are the kinds of things that don’t get noticed by most people since normal interactions involve such routine things that she can do almost reflexively. I think this is fortunate because I don’t want a lot of people to know about her condition, and, as I have mentioned before, she doesn’t either.

The fact that her deterioration over the past 8 months is noticeable makes me concerned about the future —  for example, a trip to New Zealand in the winter of 2013. I am beginning to think that we will want to make the most of 2012. I don’t really think we will have to stop traveling after 2012, but it will be different if her condition continues to decline at the present rate.

I do find that I feel a greater need to be with her and to enjoy our time together. We both enjoy snuggling in bed and taking moments together with a glass of wine out on the patio. Without saying it, we both want to make the most of the time we have remaining. I am hoping it is longer than I am presently thinking. I recall a friend’s saying a good while after his wife had been diagnosed with AD that they were able to enjoy conversations together.

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Reflecting on the Past and Looking Ahead

Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.

This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.

I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.

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Reflecting on the Past Month

It was one month ago today that we met with Dr. Reasoner and received Kate’s diagnosis. The world for us changed in that moment. Everything we do now is interpreted in light of that. Many times I have been in a Sunday school class or other conversation when someone has asked what you would do if you knew you had ”X” amount of time to live. I recognize that Kate’s situation is not exactly the same. We don’t really know how long it will be until her death, and we don’t know how long she will be able to live a mostly normal life. It is hard to articulate what I mean by “mostly normal life.” I think I mean at least 2 things: (1) that she will be able to continue enjoying life in the same way that she does now – going to movies, the theater, out to eat, driving a car, spending time with friends, etc., and (2) that though some people might think she is a little spacey, they wont know that she has AD. I use the terms spacey because she has often said that the people at her beauty shop think of her that way. Over the past few years, she has occasionally forgotten to come to her appointments or left things at the shop. I suspect that Ellen, her best friend, has observed more than a little bit of this. At the moment, I doubt that she suspects AD.

As I think my earlier posts suggest, not all, nor even most, of our moments have been overshadowed by sadness. I do believe that Kate’s response has been in keeping with what you would expect from her depression she has experienced over a long period of time. She finds it hard to do the things she doesn’t want to do. She has busied herself in little things around the house like cleaning out drawers and closets. On the other hand, she has taken the positive step of attending yoga pretty regularly. Each day she tells me if she has a class the next day and what time it meets. I make sure that I set the alarm clock so that she doesn’t oversleep if it is a morning class. She also is working to avoid things that frustrate her. We talk about these things, and she is relying on me more as a partner in this effort than in the past. This blends with her adjustment to depression. Because she knows I tend to be more optimistic and upbeat (overly so she would be quick to say), she tries not to drag me down with her depression. She has suffered mostly in silence for many, many years. Now we seem to be operating as partners in adapting to her condition.

My own reaction has been anxiety. I fear, not her death, but her gradual incapacitation that will terminate our plans for many shared experiences in the future – celebrating our grandchildren’s maturity, graduation from high school, going to college, taking jobs, raising families of their own but also our own private time together – drinking wine by the fireside, lounging by the pool in the summer, travel to many places, theater trips to New York and so many other things.

My anxiety over losing these experiences has led me to try to be with her as much as I can. We eat lunch together a lot now. I am more sensitive about how long I stay with my dad each day. She always felt I spent more time with Dad when she would like me to spend more time with her. I am only now interpreting some of her recent concern about this as a symptom of AD. For example, on one occasion recently she sent me a text while I was visiting Dad. She wanted to know where I was and when I was coming home. When I got home, I learned that she thought that I had been gone all afternoon. In reality I had been gone about two hours, my normal time to drive there, spend time with him, and drive back home.

Another change in my behavior is loss of any frustration over her forgetfulness and other symptoms of the disease. Until yesterday, I had not experienced the first sign of irritation or frustration since before the diagnosis. Even yesterday was minor. On Wednesday, Dad’s brother and his wife as well as my brother are coming for a 4-day visit. The primary objective is to work on Dad’s condo – sorting through his things to determine what needs to be disposed of and what should be kept. This is a first step in putting the condo on the market. At any rate, Kate and I were discussing plans for the visit and trying to work out meals. I could tell she was getting frustrated. That led to my feeling a sense of frustration. The key difference from the past is that I might have pushed a little, and we both would have felt bad. This time I backed off and suggested we’ll get it worked out.

Last night she was trying to determine if she could host a women’s club meeting at the house in July or August. When I told her the August date would be right after we returned from Chautauqua, she asked if I were still planning for us to go for the week on Iran. I felt irritated because we had decided together while we were at Chautauqua last summer that that was the week we would go and put a deposit down on the inn where we have wanted to stay in the past. Now it is really late to make changes. Again, instead of pushing it, I told her that I would see if we could make a change if she really wants to do so, but we had put down a deposit long ago. She, too, decided to back away, and we left it that we would keep the week we had planned on.

The other thing I would say is that our relationship has been the best I can ever recall. Of course, I know I am forgetting the courtship, our new beginning in Madison and in Raleigh where our children were born.  I find myself simply going over to her and giving her a big hug. We have eaten out a lot over the years but are doing so more now. Last week we didn’t eat a single meal at home. When I went to take the garbage out to the street for pickup today, I noticed there was no garbage in the container.

We had a wonderful night out at one of our favorite places on Saturday night. We had a cocktail in the lounge and talked for about 30 minutes and then went to the dining room for our meal. We talked about many things. Some of the things involve AD and her reaction. For example, we had a brief discussion about planning our funerals. We agreed this was something we would do together.

But it isn’t only the special nights out like Saturday. I feel even having soup and a sandwich at an ordinary place is a special moment together. We both frequently comment to the other about how nice the meal has been when we really don’t mean the meal at all. We mean that moment in time when we really connected. During the past month we have had many of those moments, and I trust they will continue.

This Wednesday, Kate goes back to Dr. Taylor, the psychologist, as a follow-up to her test of last week. On March 2, we go back to Dr. Reasoner. We anticipate that she will give us more information on the PET scan as well as Dr. Taylor’s evaluation.