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Cabin Fever

During the past week Kate has expressed concern about being at home all the time. The first sign of this was the conversation we had last week when she wanted to know if she could drive again. Since then she has commented that she needs something more to do than just work in the yard and on jigsaw puzzles on her iPad. This is something that will require more planning on my part.

This morning I woke up at 4:11. I remained in bed until 4:33, but my mind was occupied by two things. First, the nominating committee of the foundation is meeting in the morning to deal with a sticky issue of who will be the chair for the upcoming year. Second, my mind kept wondering how I will work out entertaining Kate if I have more obligations with the foundation, church, and presbytery. I also wonder how I can present supervision of Kate without offending her. She continues to want to display her independence. She doesn’t even want me to help her out of the pool.

I volunteered our participation on the visitation committee at church. We had our first meeting with that group yesterday. They meet twice a month and have a lunch. This should help get her out of the house and have more contact with other people. I also need to work out arrangements to have lunch with people like Angela and Marvin Green. I have also spoken with Kate about volunteer opportunities.

Yesterday I did tell Libby, our housekeeper, about Kate’s Alzheimer’s. I also told her I would want her help in keeping the house in order but that right now Kate wants to handle that herself. The problem, of course, is that she really doesn’t.

I am also thinking about the implications of future travel. I don’t have any plans for travel after our cruise in October. I think I will wait until after the first of the year and see how she is doing. We will continue to make trips to family.

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Averting Crises

This week we have experienced two near crises. I’ll mention the second one first because it is the one that scared me. First, is the background. Kate had a dental implant on Wednesday morning (today is Thursday). She was sedated and continued on pain medication through 10:00 pm that evening. We were prepared for her to feel pain yesterday as well. As it turns out, I had arranged to be at the foundation at 8:30 am yesterday morning before I realized that Kate had a PEO luncheon. She was to meet Shirley Hazel at her house at 11:00. Since I was going to be gone, I prepared 2 sets of medications (1 for 10 o’clock; the other for noon – if needed). I put them in 2 separate sandwich bags with written instructions on each one. I also set her GPS to direct her to Phyllis’s house. In addition, I checked to make sure her driver’s license and ATM card were in the console in her car where we have agreed she needs to keep them.

I finished my meeting just before 10:30 and placed a call to her to make sure she had not forgotten to get ready to meet at Phyllis’s house. She sounded hurried but indicated she was going to make it. I arrived home at 11:59 and was surprised (I don’t know why by now) to see that her car was still in the garage. As I started to go inside, I saw that she was getting ready to leave. She was in a dither, got her purse, and rushed to the car.

About 15 minutes later, she called to say the GPS had her turn on the wrong street and didn’t know where to go. I guided her over the phone. About 20 minutes later I got a call saying she was there. A few minutes after that I received a call from one of her other PEO sisters who was the driver for the the car Kate was to go in. She said they had waited but finally had left and were at the restaurant where the luncheon was being held. After we hung up, I called Kate and told her they were already at the restaurant,and that I would be right over to take her there. I did so, and she got there around 12:30.

When it was time for me to go to visit Dad (around 3:30), she was still not home. I began to worry. I sent her a text asking where she was but got no response. That is not too surprising since I knew that she would have her phone turned off. When I reached Mountain Valley, I called her at home and her cell and got no answer. While visiting Dad, I called a couple of other times. Finally, I called one of her PEO sisters just before 5:00. She said that they had gotten back about 3:30 and that Kate was fine. I decided to head home.

As I left, I called home, and she answered. She seemed quite glad to hear from me and asked if I were coming home. I told her I was on the way. I reminded her that we were supposed to be at a church supper at 5:30. She had forgotten and was disappointed. After we hung up, I called back and told her we didn’t need to go to the church supper. She asked me to just come home which I did.

When I arrived home, she was lying down on the love seat on the patio. I went out to talk with her. Actually, I was proud of myself. I never asked her where she had been or what had happened. In fact, I didn’t ask her anything. I just sat with her, told her I loved her, and asked if she would like to go to Hathaway’s for dinner. She gladly accepted the offer. We went out to dinner, came home, and she went to bed. We still have not discussed what happened and may not. I have learned that when she is ready to talk, she will let me know. Had I asked her, she would have said, “Let’s not talk about it now.” That is a very frequent response.

This particular event disturbed me because it made me realize how much she has deteriorated. While I was home that morning, I found 1 of the 2 sandwich bags with the pain medication she was to take at 10:00. The good news is that she didn’t need it. In addition, I gave her a 20 dollar bill when she left. By the time I picked her up, she couldn’t find it. Third, it made me realize that it may be getting dangerous for her to be driving. I think I am going to need to take her everywhere except those places she knows very well.

The other event is minor in comparison but was an emotional one for both of us. She has been working on the invitation to Dad’s 100th birthday party for at least 2 months. I have reminded her that I wanted to mail them out today or tomorrow (and we will make it) and that we needed to get the invitation ready. Each time she started to finish it, she would change something. It simply wasn’t getting done. Furthermore, she would forget about it and not work on it until I would set aside some time when I was home for the two of us to work on it.

Finally, on Monday evening I said we had to get it done that night. She wanted to continue editing. I told her just to leave it. This really hurt her feelings. She has wanted this to be her baby, but she recognized that she couldn’t get it done and resented my pushing. We went out to dinner, and all was well. The truth is I felt if I wasn’t stern, we wouldn’t get it done. This portends other things to come although the only reason this was critical was we were working together and I had a deadline. Most of her other things (the yard) don’t have a deadline. That’s a really good thing.

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Two Examples

Each day brings numerous examples of AD. Here are two. Yesterday afternoon I arrived home from visiting Dad. When I came in I heard Kate on the phone. She had her computer in her lap. I thought she might be handling some details concerning our neighborhood directory for which we requested updates yesterday afternoon. I busied myself with a few things on my computer. When she hung up, I discovered that she had forgotten about a commitment she had made to prepare a flyer announcing an annual fundraiser for her PEO chapter and that she needed to have it. She ended up stressed, but together we got it done.

This morning she has her PEO meeting. I planed to drive her and told her we would leave around 9:30. Around 8:00 she was dressed in her yard clothes and said she was going out to take the yard trash to the curb for pick up this morning. At 8:45 after I had dressed for the day, she had not come inside to get ready. I went out to let her know it was time to come in. When she came in, she asked me if I could get the second wheelbarrow filled with trash and take it out. I hesitated and said I would have been happy to do it if she had asked me before I got dressed. Of course, I went out and emptied the wheel barrow on the curb. My point is that she loses track of time so quickly and then doesn’t do the things she originally started to do even though may have been the more important things she wanted to do.

Because of the flyer for PEO we had a late dinner – almost 9:00 at Hathaway’s. While there she commented that she is relying more on me for help than in the past. I told her I understood and recognized that I find myself trying to take more initiative to do so but that there are times when she wants to do things herself. She acknowledged the situation. We both then indicated that we thought each of us is handling things pretty well.

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In A Quandary

It is now 2 ½ hours before we are having 3 other couples over for a light dinner. We are doing this informally. We hope the weather will cooperate and permit us to eat outside. If not, we’ll simply adjourn to the family room. Despite the informality, we have a good bit to do. I cooked pork tenderloin last night. We are going to thaw some shrimp and have shrimp cocktail. In addition, we will have assorted cheeses, fruit, and caprese salad. All of these are things we need to have in order by the time everyone arrives. At the moment Kate is outside working on plants. Some of this work has been pruning behind the shrubs on the side of the house where no one can see anything. How should I respond? Do I push her? That will annoy her. Do I let her go and just let the chips fall where they may? It is the latter that I am tending to do more and more often. I do believe we are very near the time when I will simply do everything except what she may want to do to make her feel a part. I don’t mean tonight although that is where we are headed. Thus far she has done very little except for the yard. It looks great, and I appreciate her work. However, I consider it secondary to the things that must be done to serve dinner.

Another issue is her weight. She loves eating snacks and treats like Wendy’s Frosties, candies, etc. She is frustrated over her weight gain. I am only 10-12 pounds heavier than she, and we found on our trip to South America that she can comfortably wear my jeans. I can understand she wants to enjoy herself while she stills knows and understands what is going on around her; however, I also know that she is troubled by her weight. She decided to go to Weight Watchers before we went to South America. She decided to start after our return. She went to one meeting and never returned. Again I have decided for the moment that I will not put any pressure on her. I feel like she needs to enjoy herself.

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Even More

Several things have happened since my last post. I don’t have much time right now, but I would like to jot down some events that I may come back to later. The first involves the neighborhood association newsletter. This is something she started working on early last fall. We just got the printed newsletter back from Staples. A week ago Friday or Saturday, she asked for my help with two things. The first was to get her newsletter out. The second was to help her take care of her obligations for her grant applicants for PEO. I told her I would do so. She had a terrible time both comprehending and remembering what it is she is to do. She asked me to listen in on a phone conversation with the woman who chairs the grants committee so that I would know what she is to do. We did that. Then she got confused again and had to call her back another time. We got it straightened out. She has to write two letters of recommendation. She’s already done one and still needs to do another.

On Thursday, I reminded her that she had an appointment to get her hair done. Although I had reminded her several times, it slipped her mind. She left in the car. I got a call a short time later. She couldn’t remember exactly where the hairdresser’s salon is located. I talked her through it, and she finally recognized where she was going. This reinforced our intention to get her to use the GPS when she is going places. We both agreed that I would enter a number of places into the GPS to make it easier for her each time she needs to go someplace. I used it today to help her get to a neighbor’s house. It looks like it is not as user-friendly as she needs; so I will look for something simpler.

All these things tell me that a year from now she is bound to be in a situation where people begin to recognize her condition. I will be especially interested in the children when we are together next month.

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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.

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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.

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Entertaining Is Becoming Difficult

The big thing in our lives right now is Dad’s 98th birthday party which we are having at our house this Saturday, the 29th. In connection with our preparations, I have had several observations related to Kate. First, she has really wanted to have the party and to work hard to be ready. At the same time these things introduce frustrations that would have been different in earlier times. For example, she decided to do 2 collages of photos to display in a frame during the party. One is of Dad with his family; the other with friends.

This seems straightforward enough and falls within the kinds of things that she likes to do. However, we have had to take pictures from my computer to upload to hers which introduces some frustration. She can’t remember where she loaded pictures. As she was working on the collages last night, she exclaimed how confused she was. I told her not to be too hard on herself and that she knows this is something she can’t control. Even as I said this, I recognized that this is a simple thing to say but difficult to do.

Last night she was trying to dial the phone number of one of her PEO sisters and kept misdialing. She ended up giving me the phone to dial.

She is also planning to host a PEO dinner on December 10. Fortunately all she will have to prepare is the chocolate mousse, but there will be lots of things to do to have the house ready for this group.

She has also indicated a willingness to host our  music club for its February meeting. I love the fact that she wants to do these things, but it concerns me that it introduces too much frustration in her life.

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Getting Lost and Frustration

Life has been a little hectic lately; so I sometimes find it hard to jot a few notes at the time I want to. Here are a couple of things from the past few days.

Last Wednesday Kate had a routine appointment with Dr. Reasoner. I had asked her if she wanted me to go with her. She said she was fine. What she didn’t consider was getting lost. I told her how to get there, and also told her to use her GPS. We had eaten lunch across the street from my office, and I walked back to the office while she went to the doctor. A short time later she called saying she was lost. I asked where she was, and she was able to tell me she was “by” the University of Tennessee Medical Center; so I knew she was close. However, as I pressed, she couldn’t tell me more precisely where she was. I got out my iPhone and opened the GPS. Between her telling me about street signs and my looking at the map, I saw where she was and guided her step by step to the building.

The next day she was going to Dad’s condo to dry clothes since our clothes dryer is not working. Although she has been there many times, she got lost and had to use the GPS to get there. She was headed there going north and went past the turn and found herself a few blocks away where she turned right. It was a few blocks later that she realized she was lost and needed to use the GPS.

On Saturday when she had forgotten or lost something, she said, “”At least now that I know that I have Alzheimer’s, I have an excuse.” She is having many experiences where she can’t recall where she has put things, where she is supposed to go, what time she is going someplace, or that she is going someplace at all. I am trying to remind her of some things. I do best at reminding about social engagements. I am not doing well in making sure she remembers to take her purse with her from a restaurant, etc.

Yesterday I met with the communications committee of the United Way. I sat next to a former client and learned that his wife has dementia. I asked how long they had known. He said a couple of years. Then he said it had been less than that. I asked if she was aware. He said that the doctor had told her when he gave her the the MRI diagnosis but that she does not seem to know or pay much attention now. He indicated she is happy and that they are getting along all right. The conversation, however, was sobering for me in that it added fuel to my existing fears that in 1-2 years we’ll be further along on this journey than we had hoped.

One final thought. A few minutes ago Kate and I were making plans for the day when she said, “Just tell me what to do.” This is something she says frequently, and I am trying to learn not to throw too much at her. My interpretation is that she is facing so much frustration over losing things and not remembering things that it is too frustrating for her to attempt to rationally work out a plan for almost anything.

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The Challenges of Everyday Life

Last night after leaving the visitation for a church friend, Kate and I planned to meet at Panera Bread. This followed a terrible thunderstorm during the visitation. As we came back toward Panera, she and I got separated (we were in separate cars). The power was out along the street leading to our home. I went home to wait and then went back out to look for her. Before going too far, I got a phone call from Kate saying she was at Chalupas; so I went to join her. I discovered that she had thought I had said we would go to Chalupes if Panera was not open (which I had not said at all). When I got there, she told me she had accidentally gone past the restaurant and realized it sometime down the road and had to turn back. In turning around she had run over a curb and thought she might have damaged the car (though I don’t see any signs of damage).

Over dinner she told me she is beginning to lose confidence. I assured her that the confusion of the night and weather conditions made it difficult to see (which was true) and that it could have happened to anyone. She understands that, but I could tell she still thinks part of the problem is AD. She is seeing more and more signs of it as am I.