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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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Occasional Setbacks and “How am I?”

Thursday afternoon Kate took a call from the body shop that is repairing her car. They said her car was ready to be picked up and that the cost was just under $3,000. This is pretty close to their original estimate, but I had not told Kate how much it was going to be. She called me right away to let me know, and I could tell she was depressed. She had no idea what it was going to run. That has continued through today and has been reflected in a little irritability. I believe she is coming out of it though. When I returned from the grocery store about 15 minutes ago, she said she wanted to tell me she loved me. I considered that an apology for her mood the past couple of days.

In my previous post I was intending to say how each of us is getting along as we approach the second anniversary of our receiving the official news that she has AD. I believe I conveyed how she is getting along but ran out of time before commenting on my adjustment. Here it is.

On the whole I am doing well. I have made many adjustments. Among those has been accepting things that she does that are not the way I would do them (the way she loads the dishwasher, or leaves dirty dishes on the counter without rinsing). It also includes responding to her wishes more quickly. Things that I would have tried to explain, I don’t. That is because she stops me. It is amazing how many times she stops me during a given day. She simply says, “Let’s not discuss it.” I immediately drop the subject.

Thinking of my actions, I believe I am doing very well. On the other hand, I do feel the stress involved in taking care of Dad and Kate. It is remarkable how similar some of their symptoms are. One example is their desire not to discuss anything that I want to discuss or hear more about or to have them explain. I interpret this as occurring because the condition of their brains does not enable them to do it. The simplest things can cause problems; so explaining why she wants something or did something is just too difficult, really impossible.

The other things that cause more stress than I am accustomed to involve the sheer amount of time required to take care of them. For that reason I get behind on other things like returning phone calls, paying bills, or completing other tasks.

I am taking more time away from the office and will probably stop going in every morning in the next few months. That will give me even less time to do the various things I need to do for myself or to run the household, but I will be able to spend more time directly helping Kate. Her condition has given me much appreciation for the need for two people to run a household. Since I am doing it all, I am always hopping.

The last thing I would say is that my mood goes up and down. Sometimes I feel very good. At other times I am low. That is directly related to my experiences with Kate as well as Dad. I come home visiting Dad worn out from trying so hard to please him and discovering that it doesn’t appear to make any difference.

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Sweet memories but constant reminders

Wednesday night we got back from NYC. It was everything I had hoped it would be. We saw more shows than ever (5), 1 opera, a performance of Handel’s Messiah, and the new movie, Lincoln. We are treasuring the memories of such a special trip.

Back home, I see Kate dealing with the frustration of accomplishing things – mostly on the computer. Yesterday I could sense she was depressed which I took to be related to this frustration. When I got home from visiting Dad, I asked her what she would like to do for dinner. When I suggested one possibility would be to bring something in, she didn’t look excited. Then I said, “”How about going to Casa Bella?” This is one of our favorite restaurants in Knoxville? We almost always get the same thing, and it has come to be a comforting place when we are low as well as times when we are celebrating. She responded quickly saying, “”Could we?”

I told her I would like to go ahead and get my shower. She said she was ready but would continue working on the computer while I got ready. Her power cord is damaged again; so she was using mine. She has repeatedly has power cord problems because she uses the computer with the power cord plugged while lying in bed or sitting in a location where the cord is pulled. Within two months of getting the latest computer, we had to replace the piece in the computer into which you insert the plug as well as the power cord itself. We had done this on her previous computer as well. We have discussed why this is happening, and I have encouraged her not to use it that way. In addition, I bought her an iPad because I thought she could use in it instead of the computer, but she has not gravitated to the iPad. I think that is mostly because the bulk of what she does is making photo collages using Microsoft Publisher and Creative Memories, neither of which she has on the iPad.

This is all a preface to one of my failures in handling a situation last night. Just before we left and while she was working on the computer, I told her again that it was better not to use the power cord while seated on the sofa. (That is because it requires the cord’s being pulled to the side which can cause the same damage to my cord as to hers.) She said, “”I am trying to be super careful.” I answered softly but inappropriately, “If you were trying to be super careful, you wouldn’t be using the computer this way.” She then broke into tears and went to get her coat.” When she came back with her coat, we embraced and I told her I loved her. She said, “I just hate this; I can’t do anything right.”

We had a perfect evening at Casa Bella. We caught them on a very busy night, but we had good service, the veal piccata was better than usual, and we topped it off with white chocolate cheese cake. When we got home, she was tired and got into bed before I did. While I was brushing my teeth, I heard her, and asked if she were laughing or crying. She said, “”Crying.” I asked, “”Why?” She said, “”I don’t know.”

These are continuing signs that she is getting progressively worse, and she realizes what’s happening. One of the things that hurts me is that she keeps most of this to herself. I wish she were able to talk about it more, but I think it is not just to spare me but to protect herself. I suspect that she feels the more she dwells on her condition, the worse things are. She is really frightened.

Once again, events of yesterday reinforce the superficiality of social relationships. At noon yesterday, we had our Sunday school class Christmas lunch. She sat at the same table as our pastor. He has told me before that except for knowing from me that she has AD, he is unable to tell when he speaks with her. I suspect that even though they sat at the same table for more than an hour, he wouldn’t have been able to tell. On the other hand, I can see so many things that make it difficult for her to function effectively.

This makes me wonder how long we can keep this from our children. I really want them to know so that they can make the best of their relationship with her the way I have been able to do. At the same time, Kate does not want people to look at her as a patient. I will honor this desire until or unless the children begin to suspect. That could happen this summer when we spend a week together in Jackson Hole. If it doesn’t, this will be further evidence of how long someone with AD can keep it hidden from others.

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Mini-meltdown; others to come?

In my previous post, I gave an example of how well Kate is adapting to situations in which she finds her AD keeps her from doing things as easily as she could previously. Last night we had an example of just the opposite reaction. After I got home from Dad’s last evening, I poured Kate a glass of wine while I warmed up some quiche and cooked an onion for our dinner. She was working on her computer and didn’t get around to drinking any of the wine. (This, by the way, is another characteristic I am noticing. She starts on something and completely forgets about doing something else.) About the time I was going to bring the dinner into the family room, she closed her computer and was putting it away when she knocked over her wine on the table beside the new love seat we got in late August. She went ballistic. I rushed in with a towel and soaked up the red wine all over the table. It turns out that her concern was not the table but the love seat. Wine had dribbled down on the arm and then on the seat. We worked to soak it up and got most of it. We will have a permanent stain to remind us of this event. During the cleanup she was quite disturbed. Finally she said, “”I am such a disaster.” I told her that she was not. She said, “No, I am a disaster. I am going to make your life miserable taking care of me.”

As her condition continues to deteriorate, I can’t help wondering if this is something I am going to see more of. For her sake, I hope not. Once again, this is a good example of the frustrations that an AD patient experiences even as others fail to see that she has AD.

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So how am I feeling?

A couple of days ago I had the thought that much of what I report is simply a description of what Kate or my dad are doing to give a picture of their present state. I should also be clear about how I feel about things and also how both Kate and my dad are feeling.

My general impression is that my own feelings move up and down depending on specific things and events surrounding Kate and Dad. For example, last Monday when Kate told me that she had gotten lost when she tried to walk to our neighbor’s house, I felt sad for her. It gives me pain to see her hurting, and she hurts when she sees how AD is affecting her. Similarly, we went to a local heater Saturday night. She didn’t applaud once during the entire performance and by the expressions on her face, I could tell she was not enjoying herself. I, on the other hand, felt the performances of the actors was terrific. They danced well, sang well, etc. I can’t say that I loved the musical itself but did enjoy the evening. While we were there I was feeling that she was letting her own judgment of the musical influence here judgment of the performers; so she wouldn’t applaud. When we left, I asked her about that. She told me that she was unable to follow it. I am sure that part of that related to not being able to understand much of the words. That may have related to the fact that the band was directly in front of us. I also think they simply played too loud and overrode the singers. At any rate, the moment she said she was unable to follow it, my feelings changed. Then I felt sad for her. It also makes me sad because I know that there will be many other occasions like this in the future.

As for my feelings about Dad, I have been discouraged about his progress since his fall a little over 2 weeks ago. I was particularly low one day last week when I entered the dining room to see him with his head and arms down on the table sound asleep. Besides that he has been more confused and much more like the other dementia patients at Mountain Valley. He still has moments of clarity, and I am hopeful that he will rally as his birthday approaches.

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Being Forgiving/Understanding

Since Kate’s diagnosis, I have come to view most of her behavior in a completely different light. Being someone with more than a few OCD tendencies, I found myself annoyed by many things, all of them unimportant. These would include little things like the way she loads the dishwasher, misplacing the remotes, etc. I wish that I had always been so understanding as I am learning to be now.

I find myself thinking about the future, our relationship, and how life will be changing. This is especially true when I attend a funeral service. Something similar happens when we are attending happier events. For example, we recently attending the wedding of a close friend. I kept reflecting on our own wedding and the happy times we have had over the years.

A very different kind of event the other night also led to a feeling of sadness for her. She recently learned about a conversational Spanish class offered at a branch of the library near us. She went to the first class by herself. A few minutes after the class had started, she called me to come over. I did. We went to Chalupas for dinner. She told me that she was feeling intimidated and wanted me in the class because I speak a little Spanish. It saddens me every time I observe her insecurity that arises because so many things are difficult for her.

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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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Pain, Pain, Pain

This past Friday, Kate and I drove to Nashville where we had dinner with and old friend from Wisconsin and three of her friends. On Saturday, we got together with our daughter, Jesse, and her boys who were there for half-marathon on Sunday.

Overall it was a good weekend, but it was also a trying one for Kate After Friday night’s dinner, she commented on how people seem to ignore her and give their attention to me. She also expressed her fear that increasingly she feels uncomfortable in conversation. She has a special fear of asking things she has just asked which I have observed a few times. She says she sees herself becoming quiet the way she has seen other AD victims do.

She hasn’t wanted to talk about it, but I have noticed that she was low as we returned on Monday. She has my cold now, but I don’t believe that is the explanation. We were together for lunch, and I took her to a new ice cream shop downtown to give her a little boost. She seemed to enjoy it, but it didn’t really change things.

I should have entitled this entry (started this morning) as Pain, Pain, Pain. It is the confluence of several things at one time that makes it stressful. I am reminded of the Psalms. Many of them are written when the authors were on the mountain top. These sing praises to God and give thanks for all the blessings of life. Many others, however, are written from The Pit of despair. These focus on the challenges of life and often question where God is and appeals to God for help out of disaster. Though my own moods are usually upbeat, I have recognized in the past few years that external events can make it hard to feel optimistic. Right now is one of those times.

Over the past 3 years my business has been terrible. I have lost a lot of the money that I had made over many years. We are now down to 3 staff members. I recently sold the building to a law firm that will occupy the downstairs. We are going to lease the upstairs from them. Last week we made the move and like the new arrangement. However, in the midst of feeling good about selling the building and sensing that the new quarters suit us better, the business itself continues to decline. We just aren’t getting calls anymore. We committed to a one year lease thinking we would be safe because we have booked enough business to almost cover us for a year. It is so slow now that I am beginning to wonder if we were dreaming.

Now let’s add the events of the weekend and the following days at home. For me personally the weekend was great because we were with people we liked and enjoyed pleasant, stimulating conversation. In addition, we had the joy of being with Jesseand her boys. On the other hand, it was not as good for Kate as I pointed out above. She continues to recognize her deteriorating condition. I will SCREAM once again that for a good while AD patients know they are losing it. It is horribly depressing. I think it is especially depressing for people who value intellectual ability as Kate does. It is more than intellectual ability. It is also the ability to operate confidently in the world –, to be able to handle everyday things.

Last night we went to a movie called The Matchmaker at our local arts theater. After we left the movie, Kate said, “I didn’t understand it at all – even after you explained it.” I recognized that she wasn’t just saying that it was a confusing movie but that she was saying her condition prevented her understanding what was going on. When she says things like this, I can see the pain in her face. Then I don’t know what to say. I told her I wished I could help her and that I love her. I started to say more, and she stopped the conversation. This is a typical pattern. Things occur that lead her to say something acknowledging AD and her frustration. Then just as quickly she wants to move on as if continued conversation will only make it worse. I know the pain is greater for her, but it hurts me tremendously.

One thing that struck me and has on other occasions is similarity in my experiences with my dad. Yesterday afternoon I took my old iPhone to the ATT store and had them set it up for dad. When I tried to show him how to turn it on and make calls, he simply couldn’t do it. It was frustrating for him and for me. I had underestimated the difficulty for him. I had even set up a set of favorites to make it easy for him to dial. All he had to do after turning on the phone was to press the name of the person he wanted to call. It was next to impossible for him to do. So this experience was followed by Kate’s not being able to understand the movie that was not that complicated.

Seeing her deterioration over the past year, I can’t help wondering where we will be this time next year. We are planning to make a trip to the Galapagos in January. Will she be up to this? It was a bit of a chore getting her ready for the daily activities on the trip to Africa. Will it be impossible next year?

Yesterday morning, I saw Herman and Betty Snyder at Starbucks. Betty said she was going to call Kate and asked me if she would like to join a Care Team at church. I explored the responsibilities and told her that I thought she probably would not want to do it. When I spoke with Kate last night, she said that she might like to do it. This makes me wonder how realistic she is about things that she can undertake.

Our conversations involve references to future travel. I get the impression that she believes this is something that she will be able to do for a longer period of time than I think she will. Right now, for example, I am thinking the trip to New Zealand may need to be a cruise because it will be easier logistically.

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Everyday Problems Associated with Alzheimer’s

The past week has been a full one. We celebrated Valentine’s Day by attending a concert by the Knoxville Symphony on Saturday night, the Symphony League’s Valentine’s Ball on Sunday night, lunch at Casa Bella on Valentine’s Day, and the UT Symphony that night. These were good times for both of us and serve to remind us how much we can continue to enjoy despite Kate’s Alzheimer’s looming over us. We continue to put a special emphasis on our relationship which seems more precious to us with every passing day.

On the downside, on Tuesday morning Kate took a walk around the neighborhood with one of our neighbors, Lucy Grayson. During that walk Lucy commented on another neighbor and her husband, Barry and Mary Jane Winters. Mary Jane also has Alzheimer’s which we have been aware for 2-3 years. Lucy indicated that she felt sorry for Mary Jane and then said, “I feel especially sorry for Barry.”

These are the kind of things that occur routinely, but they have a special meaning when you also are plagued with the disease. It makes me think once again that people need to be more careful about what they say.

Kate and I had lunch together and then she left in her car to run a couple of errands before returning home. I received a phone call from her a little later. She left a voice mail as I was in a meeting or phone call at the time. The message was a bit garbled but I could tell she had had an accident of some type. I sent her a text and asked if she were all right. She answered quickly that she was; so I called to find out what had happened. She told me she was pulling into a parking space and misjudged the distance to the car on her right and had knocked out her front headlight. When I got home that night I discovered that it had not only broken the right signal light but had also damaged the front fender, the right front passenger door, the right back door which will not open, and the right rear fender.

We sat down and had a glass of wine and discussed the events of the day. That is when she told me about Lucy’s comments that morning as well as how she was feeling about the accident. We didn’t say much. It was obvious to me that she was shaken by the experience. It is just one further sign of her inability to do anything right. I try to reassure her when these things happen, but we both know her situation is getting worse and affecting lots of things besides memory.

Last night at Kate’s suggestion we built a fire, had a glass of wine, and brought in Chinese for dinner. It was a good time for conversation. We find a lot of our conversation relate to things we are thankful for. I think this is our unconscious way of counterbalancing the trauma of the Alzheimer’s. It was a very nice evening. One of the things she said when we talked was that she had lied about something and wanted to explain. She went on to say that she had indicated on Tuesday night that she had not been bothered by Lucy’s comments, but the truth was that she had been bothered by the comment that Lucy felt even sorrier for Barry than for Mary Jane. She didn’t say this, but she doesn’t want to be a burden on me.

On a slightly different note, many decisions are influenced by Kate’s condition. For example, I have been planning to buy a new car next year and thought that I might even delay a little longer. My idea was that Kate may not be able to drive much longer and that I might trade in both cars when I buy a new one. This changed this week when I have significant repair bills on my car and have decided that I should buy a new car now. Kate asked me if I were planning to pass her car along to me. I told her I was not as it had so much more mileage than hers. I got to thinking later that she might have been thinking that her station wagon was getting to be too much for her and that she might do better with my car. Now I am beginning to wonder if getting her a smaller car might be an intermediate step. At the moment, I have decided against that.

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Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.