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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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Short-term memory

I continue to be struck by, and mostly thankful for, the effect of Kate’s AD on short-term memory. While it is a problem for those who are close to her (I believe I am the only one affected right now), I clearly believe this is better in terms of social adjustment than losing longer-term memory because so much of our daily conversation relies on things in the past.

This morning I had an experience that has become rather normal for us. I was in the bedroom getting ready to leave for the office when she came in to give me some paper to take to the office for recycling. She then walked into the kitchen. While there my brother, Larry, who has been with us since Tuesday night, asked her if I had left yet. She told him I was on my morning walk. I walked in a few minutes later and saw Larry’s car backing out of the driveway. I caught him and asked if he were leaving. He said she told him I was walking. She had obviously forgotten I was in the back.

The only consequence of this kind of memory problem is my never being sure she will remember to do something or to meet me. This leads to my reminding her of many things, and that becomes annoying to her sometimes though not always. She often appreciates the reminders.

At noon today she has a dermatologist’s appointment. It has been quite a while since she has been to the dermatologist; so I have been concerned that she won’t remember how to get there. I have arranged for her to meet me at my office at 11:30, and I will lead her over there in my car. Then I will head to a noon meeting at United Way. I feel pretty good about her getting home, but that is no sure thing either.

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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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New Year: So where are we? How is she? How am I?

I started to entitle this entry “Emotions change quickly” but thought that since it is the beginning of a new year some reflection is appropriate. Both things are intertwined.

Just yesterday I sent the following email to Tom and Carl, two email buddies whom I have kept up with since college days at TCU. Neither of them knows about Kate’s AD.

As I suggested in my previous post, each of us is approaching the stage of life with a different set of experiences and situations. I have never been a workaholic, but my job has necessarily required time apart from Kate. I used to travel a lot. I was reminded of this the other day when I noted that I have travelled only 23,000 miles this year. At one time I was travelling over 100,000 miles a year. That’s how I got to 3,000,000 with Delta. I must have flown 500,000 with US Air. Kate never complained. She actually likes alone time, and I think we were together just about as much as she wanted. Now that we have reached this stage, I just feel the need to make the most of whatever time we have left. That is why I have put as much emphasis on our 50th anniversary as I have done. I have also tried to attend as many social and cultural events as possible. We do about as much as we are comfortable doing. Sometimes it is just nice to be at home.

For me this is as much about attitude change as it is about just being together. I mean there is a difference when we are together. For example, as I finished the paragraph above, she came in to ask if I could build a fire. In the past I would have done it, but I might have thought, “Gee, we just had a fire each of the last 2 days. Do we really need another one today?” Instead I immediately started working on a fire that she will enjoy the rest of the afternoon until we go to dinner. Another way of expressing it is that I make more of an effort to make her happy than I did for a good bit of our married life. The great news is that I find that we are enjoying each other more than we did in the past. That’s saying something because we have always had a good marriage. Now it is almost like we are on a honeymoon. We don’t take each other for granted. Enough said.

Of course, this leaves a lot unsaid because I don’t want them to know just yet about Kate’s diagnosis. It also emphasizes how quickly my feelings can change. Yesterday I sensed that Kate was somewhat depressed. When I got home from visiting Dad, she was almost asleep on the sofa in the family room. We talked a little before dinner, ate at home, and went to bed. During the night she had some problems with diarrhea. This has been a chronic issue for her for some time; however it has gotten worse in the past 6-12 months. This made me think about her continuing inability to function effectively when doing a lot of tasks and what things will be like as she gets worse. It also made me think about our upcoming trip to Peru and Ecuador. I understand that almost everyone gets diarrhea on this trip. Will this be especially difficult for her? I don’t know. I hope that we will be able to take medicine that will help us. She has two doctors’ appointments coming up soon. One is with Dr. Reasoner, the other with Dr. Edwards. She also had a bad bout with acid reflux night two nights ago. I ended up calling the doctor on call at Dr. Reasoner’s office. He recommended she take Gravascon or Mylanta which we have bought subsequent to my call. My point in going through this is to say we can be up at one moment and down at another. My mood depends heavily on how I believe she is feeling.

So how is she doing? On the whole, I would say she is doing well. I think she would say the same. On the other hand, we both see signs of greater difficulty doing lots of things. I get the impression that she is sometimes just in a daze. On simple tasks like entering a new name in her contact list or an item on her calendar, she asks me to give her just one thing at a time. I can’t say, “”We are going to the Bijou on Thursday at 8:00.” That is too much information at one time. Another indication of how difficult it can be for her to do things involves her hair appointment. She missed one while we were in Tom for Christmas, and her hair dresser asked her to schedule a new appointment when we returned. I have been asking all week if she had done it, and she hadn’t. Last night I asked her if she would like me to call and make the appointment. She quickly said yes as though a load was lifted from her.

At dinner on New Year’s eve, she made a gentle reference to her AD, but we did not discuss it. It is clear, however, that she sees herself having more trouble. She does not believe her time is as short as I believe it is. She continues to talk about taking each of the grandchildren to NYC when they are 13. That would be the summer of 2014 for Heather and 2016 for the twins, and 2017 for Taylor. I am not even sure 2014 will work out. Kate certainly would be able to travel, but based on our recent trip to NYC, she requires a lot of help. (I have even thought we might consider taking Heather to NY this summer instead.) That said, I believe it is good that Kate does not believe the trips won’t work out. This would depress her.

Going to have to close now. I will deal with how I am doing in the next post.