Posted on

More Signs

Two days ago on Wednesday, we had another unpleasant experience. Dad was to receive his 65-year pin and certificate from the Masonic lodge. They went to Mountain Valley to present it. We were scheduled to meet at 3:00 pm. I left the house before Kate in order to get Dad dressed for the occasion. As I was driving out of the driveway, I realized it had been a while since she had been to Mountain Valley. I called her to make sure she knew how to get there. I gave her instructions. While Dad and I were waiting for her and the Masons, I received a call from her. She was lost though pretty close. I gave her instructions again. When she didn’t show up on time, we went ahead with the ceremony. After the Masons left, I called her and got no answer. I called several times. I even texted her to call me. She finally called me. This was now about 3:30 or later. She was located further away than when we spoke earlier. I told her to wait for me, and I would get her.

I got there and asked her to follow me back to Mountain Valley. I also set the address in her GPS but didn’t realize the sound was off. Just before getting to back to Life Care, I made a right turn. There was one car in between us. She didn’t see me turn. I called and called her but got no answer. It turned out that she had put her purse with her phone in my car thinking that she would drive back with me instead of following me. (I don’t know what she thought about how we would get her car back.) Finally she called me from a phone at a car wash that was about 2/10 of a mile from where I was waiting at a gas station. I told her to stay put and I would walk to her and drive her in her car back to where I was. I did so and then she followed me back to Dad’s where we visited with him while he ate his dinner. When we left, she was feeling quite low. I told her I was going to take her to dinner at Hathaway’s, something we do frequently on Wednesday nights. She was pleased. We had a nice evening together, but it was a frustrating afternoon for both of us.

The experience makes me concerned about her driving anywhere. She can get lost at any time. She has resolved to start using the GPS more regularly, but I am worried she will not be able to remember how to use it. This is just a small sign of what lies ahead. It’s going to be a rough road.

Posted on

Decisions

I’ve noted before that I often wonder when is the right time to let the children know. I am now comfortable with the decision to hold off as long as we can, but can’t help wondering if the week with the family this summer in Jackson Hole might not give the children a reason to suspect. Having talked with Kate, I know that she is far from ready to mention anything to anyone.

A related issue is when do you (Kate) stop accepting certain responsibilities. She seems eager to volunteer for certain things that are hard for her. Last summer she volunteered to be the editor of our neighborhood association newsletter and directory. She was going to get an issue out last fall with pictures from a Labor Day picnic and our flag at half-staff for 9/11. She still hasn’t gotten the newsletter out.

Late Saturday afternoon when I got home from visiting Dad, she was very glad to see me. She had been working on the neighborhood association directory and was quite frustrated. She asked if I could spend Sunday afternoon helping her out. I agreed to do so. I should say that after lunch on Saturday I had created an Excel file she could use to enter any new neighbors or to update the information we have on existing ones. This was a simple matter in that I simply did a “”save as” from the original file she was given. Then I put the information in a form that she could work with more easily than the original file. I tried to ask her what she wanted me to do now, but she didn’t want to explain. This is a very, very common pattern in our relationship. It is difficult for her to explain things. The explaining part of her brain just isn’t working properly.

On Sunday afternoon we worked together to address her problem. It turns out that she needed to organize an existing hard copy of the directory. The way the directory had been assembled the names were organized by streets but neither arranged by house number nor alphabetically by names of the owners. That makes it very hard to locate a particular person. This is a very easy task akin to organizing a deck of cards, but she simply got too confused and couldn’t do it. I simply did it for her.

This raises the question of how long Kate can continue to do something like this. It is simply too difficult. She was called for jury duty by our municipal court last week and was excused because of her age. She was disappointed. She thought it would be interesting to serve. I, however, thought it would put her in an uncomfortable position since it would require asking her to comprehend arguments, remember details, and to render judgment on a person. These are all things that would have been difficult for her.

Posted on

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.

Posted on

Some Things Are Funny

This morning after returning from my walk I saw that Kate was dressed and dressed more nicely than she would be on a Saturday morning. Typically she wouldn’t get dressed until 10:00 or 11:00, and then she would be more casual. When I said something, she dismissed my remarks and indicated that she wasn’t dressed up any more than usual. I just let it go. A little while later she asked me if I could help her with her medicine. (I changed the container for her medicine last Sunday, and it has confused her greatly. I was surprised by this because it is laid out the same way as the previous one that she has bought for herself and used for at least 2 years. It is designed so that you can put pills in it for 4 different times of the day for a 7-day period. The only difference in the new one is the color and the way you open the sections that actual contain the pills. Nonetheless she can’t get it. I had told her I would get another one, but she was trying to relabel the places that say “noon” and “evening” with tags that say “morn” and “bed.”) She had taken out the medicine from several sections and didn’t know what to do with them. I fixed that. Then she said something about Sunday, and I realized that she thought today was Sunday not Saturday. We both laughed, and I told her at least the bright side was that now she has an extra day before Sunday.

Posted on

Mini-Discussion

I have mentioned before that Kate and I rarely have any conversations that relate directly to her Alzheimer’s and how she is feeling. This past Wednesday, however, we had a brief discussion. Here’s how it happened. I think I have commented before that she has a harder time understanding movies than she used to. She gets confused about the plot, especially if there is anything complicated about it. On Wednesday, we went to see Anna Jesseina. It was a modern adaptation that I won’‘t even go into; however, neither of us liked it. It also had a lot of very quick “cuts” during the early part of the movie that made it hard to know who was who and what was going on. I suspected this would be hard on her, and it was. (A similar thing had gone on at Un Ballo in Maschera at The Met.)

As we drove to Hathaway’s s for dinner afterwards, we discussed the movie. When we got there, she told me that she just couldn’t get any of it. She was confused the whole time. It made it very difficult for her to remain to watch the movie. Then she said, “”You know I am getting worse.” I acknowledged that she was correct. We discussed how fortunate we are to be enjoying things while she can. She indicated she didn’t know how long that would last, but her comments made it sound like she may think it will last longer than I think. I asked her if she felt any closer to telling the children about her Alzheimer’s. She responded very quickly that she felt we were a long way from that. I, on the other hand, had been thinking that we might want to tell them either before or after our trip to Jackson Hole in June. (My reasoning is that they might notice signs that would make them wonder.) I told her I knew she didn’t like to dwell on the topic but that I wanted to be more supportive if I could. The conversation didn’t last long, but it underscored my belief that she is quite frustrated over not being able to do things or to understand movies. I think that extends to books because I hear her talk less about her books than she used to do. I think her major reason for listening to books is to help her sleep and that she is not finishing books nor remembering what she has read. She is also playing Free Cell on the computer and her iPad more. In addition, she jumps around from one task to another. I suspect that relates to frustration she has with one and tries something else.

I had a brief conversation with our pastor this week. He mentioned that a member of the staff had thought things were not quite right with Kate after our return from New York. He also felt that our children probably know or have a suspicion. This makes me think that others around the church are beginning to notice. He encouraged me to tell the children, but I think that was mostly to help me since I do not have someone to talk with now. I told him that he and our attorney were the only ones who know.

Posted on

An Example of What It is Like.

Kate and I are leaving Thursday for Fort Worth for our 50th TCU class reunion. I just got an email she sent to the secretary of our music club. In it she says she is free for a meeting this Friday morning or Monday morning. I called her to remind her that we will be in Texas both those times. She had forgotten. She repeatedly forgets the moment to moment things although she remembers many things from the past. These must be troublesome things for her. In fact, although we don’t talk specifically about AD, we have so many of these experiences that she doesn’t have to say anything for me to suspect how frustrating it is for her.

The other day she had some simple problem on the computer, and she said something about “This is going to be a long road.”

I bought new phones at the house about 6 weeks ago. One has been missing for at least 2 weeks. We have remotes that go with each TV in the house. They are not interchangeable. The one in our bedroom disappeared a few weeks ago; so we borrow from another one when we need it, but it won’t do all the same things the correct one will do.

Posted on

A Brief Overnight Trip to Nashville

Yesterday we went to Nashville to visit our friends, Ann and Jeff Davis. We had a nice lunch with them and then went back to their home for a visit. We had a good time, but as we left, Kate said she felt a little insecure with them. The Davises are both very smart. She felt it was difficult for her to join in on the conversation and felt a little left out. I was disappointed because Ann is someone Kate has always admired. At one time, the Davises had lived in Knoxville. I hope that our next visit with them is more successful.

Before meeting the Davises, we went to a mall in Franklin. As is our custom, we wanted to go our separate ways and set a time to meet at Belk’s. I waited for her about 15 minutes before calling her on her cell phone. It turned out that she was waiting at Sears. Today we went back to the mall and arranged to meet at same place. While I was waiting for her, she called to ask where to meet me. It can be difficult to coordinate with her.

 

Posted on

Caught Between Father and Wife

This afternoon after we returned home from church and lunch, Kate encountered a frustrating situation that I suspect will either become more common or she will adapt to avoid such things. Either way life will change. Here’s the story.

She is working with a PEO sister in connection with a scholarship program. She has done this for a couple of years. This past year she found herself in an awkward situation when she failed to send in a candidate’s recommendation to the international PEO office. I don’t recall the exact details, but she ultimately sent the recommendation by FedEx but apparently gave the wrong address. She suffered no ill consequences except for some embarrassment for not having gotten the letter in at the time it should have been in.

A week ago the two of them met with about 10 new candidates for the upcoming year. Nominations must be in by June 15. They decided on two candidates their chapter would nominate and were looking for other chapters to nominate the others. They were scheduled to meet this afternoon at Bojangles to go over the details. Kate’s assignment was to simply type the basic information about each of six candidates. She had all the information on handwritten notes she had taken down at the time of the interviews.

I was in the kitchen while she was working in the family room. I could hear that she was frustrated. She finally asked if I could come and help her. As it turns out, I did very little but stay with her until she was finished. It took her a total of 3 hours to complete 3 pages of material. For the most part it was a straight copy from notes to the computer file. She is finding it very difficult to work with the new version of Microsoft Word and Windows 7. I can understand this as I am trying to do the same thing; however, she makes many mistakes that are in my opinion a direct result of her AD. She would delete information she shouldn’t delete. Her use of the program was so inefficient that she kept having to correct herself. That took more time than it should have.

She commented specifically on her inability to do the task. The real problem was that she doesn’t want to tell Shirley that she has a hard time doing this. That would be embarrassing and also might tip her off that she has AD. At one point, I tried to sympathize with her and said she would have to decline these types of things in the future. She said she knows that and was slightly annoyed at my suggestion. This is really hard. This is one of the things that others can’t quite imagine unless they have gone through it. Most people only think of the latter stages of the illness and believe that, as I have noted before, that the person with AD doesn’t know enough to experience frustration or sadness or any of the multitude of other emotions that go along with AD.

During the time I stayed with her as she was completing the task, she repeatedly said, ”Don’t leave me. You don’t know how much you are helping me.” For the most part, I was simply a source of security for her. I don’t mean to minimize the importance of this, but want to make clear that I did little in the way to actually organize the task or do it for her.

Since this occurred at the time of day when I would normally visit Dad, I did not get out to see him until she left to meet Shirley. I was a little anxious since Dad is sick right now, and I felt the need to check on him. It turned out not to be a problem. When I arrived, he was still asleep as he usually is. He had not eaten dinner. The nurse had checked his blood sugar. It had been 49 and 79 a little earlier. She had given him something to raise it. I told her to call me with any problems and that I was concerned about the low blood sugar.

It is now 6:35 pm, and Kate is not yet home. I expect her to be here any minute. We’ll take some time to be together and attempt to lower the stress level until the next time rolls around. This was the most serious situation since the problem with the letter of recommendation, but was similar to what was going on when she and her brother were working on a photo album on their mother’s family. I know Ken was probably wondering what was going on. One day he will know.

Posted on

Some Days Are Better Than Others

We’ve had a good week, but yesterday there was a frustrating moment. Kate wanted to send Taylor a birthday card with a note that indicated we were giving him tickets for the baseball team and the hockey team. She worked for the better part of two hours trying to select an appropriate eCard and to enter the email addresses of Rachel and Kevin. She can’t remember their addresses and has Rachel’s address listed as Kevin’s. In addition to the memory issue she can’t seem to type information correctly; so she had to re-enter the addresses a number of times. Then she would ask me once again what their addresses are. I volunteered to do this for her, but she insisted that she would get it. It was as though she didn’t want to acknowledge that she couldn’t do it.

This led to her being somewhat depressed, and although we went out on the patio to chat and have a glass of wine, she never recovered. The day had ended in frustration.

This morning she sat down next to me on the island and was looking at the screen on my old computer. I was downloading files to put on my new computer. After I withdrew the flash drive, she picked up my computer and headed out of the kitchen. I asked what she was doing. She said she was going in the family room to work on the computer. I told her that computer was mine. Then she wanted to know where her computer was. I told her I did not know but would help her find it. She didn’t want help. In a few moments she had found it in the bathroom. This is a good illustration of how quickly she can forget. In this case she had been using her computer in the family room and got up to go to the bathroom putting her computer down on the bathroom counter. Then she came out and forgot that she had taken it there. It also shows how poorly she is able to discriminate among different things. In this case my old computer versus her new one.

When do we tell the kids?

We haven’t talked in a while about telling Jesse and Kevin about her Alzheimer’s. She was far from ready to tell them or anyone else the last time we spoke which was several months ago. She prefers not to tell them until we have to do so, or when it becomes obvious. I suspect that these events will occur at the same time. That will also be what happens with friends and acquaintances as well. There will be a point when everyone already knows or suspects. Then we can acknowledge the situation. Until then, we just keep everything to ourselves.

Note about Dad

Yesterday Kate and I took Dad to the Kiwanis spring luncheon. He looked sharp in his pin stripe suit and tie. He also seemed to enjoy himself although I can tell he experiences frustration in group situations like this where he unable to hear or follow everything (or anything) that is said. Nonetheless, I think it was good for him to get out. He still finds himself energized by the presence of other people.

Before we left Mountain Valley after returning Dad, we spoke with Dad’s speech therapist. I asked her about the upcoming Prom Night . She said that she is going to be there with Dad for the occasion. I was pleased because that occurs at a time we will be in Arkansasfor Dorothy’s wedding. She loves him so much that I won’t think of this as an imposition, and, of course, it will be good for Dad.

Posted on

Celebrating Christmas

The past few weeks have brought with it the usual stresses associated with Christmas as well as special ones related to Kate’s Alzheimer’s. Here are some of the key things that happened.

First, she started late with her Christmas shopping and then had great difficulty ordering online. She wanted to order 1 Vikings and 1 Falcons Pillow Pets for the twin grandsons. She ended up ordering 2 Vikings and having them shipped here which might have been too late for us to take with us. I ended up making a new order with delivery to Memphis.

I had given her instructions that we would give Kevin and Rachel, our son and his wife, a check for Rachel’s birthday as well as Christmas presents for the whole family. She ended up writing two checks for a total of less than we had agreed upon. Neither arrived for Christmas.

We had bought 3 gift cards to a yogurt shop for their children, and she misplaced one of these. Rachel had to arrange another. She didn’t get the other 2 in the mail early enough to arrive for Christmas. She also tried to order Sonic gift cards for the grandchildren but wasn’t able to do so. I ended up doing it for her, but it was too late to arrive for Christmas.

She worked 2 hours trying to order a TCU shirt for our oldest grandson but was unable to get it done. I did this for her.

On Christmas morning in Memphis with our daughter’s family, we opened presents as usual. We also took a break after opening some of them and returned to opening the rest later. We had purchased a gift card from a local restaurant for Jesse and Greg. When she hadn’t given it to them, I suggested she do so. She wanted to hold off. Then later she told me she wanted to do it “tomorrow.” That evening after our Christmas dinner, she told us (Jesse, Greg, and me) that she thought we should just wait to open the rest until tomorrow. I told her we had already opened all the presents. After we retired to our bedroom, she told me she had been thinking all day that Christmas was tomorrow. I could tell that she was troubled by this recognition of her mistake. Recently she has seemed more troubled by her Alzheimer’s though she doesn’t say much.

Last night our son, Kevin, called to say that most of the things that we had purchased had arrived. In the process of talking about things, he asked if we had opened the CD he had given us when we were in San Antonio for Thanksgiving. I told him I didn’t recall a CD. We told him we would look for it. This morning she found it while taking down our Christmas decorations. He had given it to Kate and hadn’t told me about it. Of course, she put it in the tree and forgot it.

We went to a movie last night, and she seemed especially pleased for us to be going out. I found myself a little down last night, as well. In fact, I woke up around midnight when I received a phone call from Dad. I couldn’t go back to sleep. I couldn’t get my mind off what I believe is the fact that she is declining faster than I had hoped. Furthermore, I think she is feeling the same way but not saying anything. I can’t help wondering about what things will be like next year and how we will be affected by her condition. I am feeling the same compulsion to be with her and hang onto her tightly.

All this comes at a time of great stress for me at the office. I had to let Regina go after 28 years, and I listed the building with a realtor just before Christmas. Furthermore, I see no signs of immediate improvement.