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Reflecting on Christmas in Memphis

We got home from Memphis late yesterday afternoon. We had a great time with Jesse and her family. Kate had an especially good time. She enjoys being with Jesse and her family as well as their neighbors, Jeff and Sally, across the street. As she usually does, Kate handled herself well at the reception. She introduced herself to people and had conversations with them. On Christmas afternoon, Jeff and Sally came over before we had Christmas dinner. They were there about 30-40 minutes. Kate and Sally were in their own conversation the entire time.

Kate continues to speak a lot about her family. She also is very expressive about how much she enjoys things (food and people). Yesterday morning I asked Jesse if she had noticed anything different about her mother since they were last together. She said she didn’t though she said she noticed Kate seems more expressive about things. I told her that confirmed what I had heard from Kevin at Thanksgiving. I reiterated to her what I have said here and to others. The good thing about this illness is that she is able to get along so well in social interaction with other people. There are only little things that someone who is close to her might notice. For example, Jesse and I both noticed that when she was speaking to Kevin’s children on Christmas evening, she was thinking that Christmas would be the next day. She asked at least one of them if he was excited about tomorrow and getting presents though that had already occurred that morning.

When we were in Fort Worth for Thanksgiving, she received a directory for her high’ school class. She has misplaced it and has wanted to send email Christmas messages to a number of her friends. She asked me about it several times during the week preceding our trip. At least one of those times she thought I had it. Once she asked me was immediately before the trip. She asked me a couple of times during the trip. She may have asked me about it last night. I know she asked me about it a few minutes ago. Again, she thought I had it. I told her that it was misplaced a couple of weeks ago and that she had said she was going to contact a Waco friend about getting another one. Even though I am quite aware of her forgetfulness, it is surprising to me that she would so easily forget something as important as this directory and after so many times that she has mentioned it to me, and I have told her it is misplaced. I am confident it is here in the house because I can’t imagine her taking it out with her.

One of the days we were in Memphis I got on the Alzheimer’s website and reviewed some of the entries on the caregiver/spouse forum. I found this quite depressing and don’t intend to go back until Kate’s condition has progressed much further than it has so far. I was reading all the horror stories involving bathroom habits, changing bed clothes, etc. It was too depressing.

It did give me two impressions, however. First, Kate is not nearly as far down the path of Alzheimer’s as others. Second, it reminds me what I may face with time. That sensitized my observations about her increasing memory failure. That made me wonder just how much time remains that we can enjoy ourselves. We are truly enjoying ourselves even with the memory issues. When she is no longer able to enjoy social activities or people and can’t remember friends, I will have more of a problem.

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Leaving for Memphis

Last night Kate asked me what time we were leaving for Memphis. I told her 10:00 although I was really shooting for 10:30. This morning she asked again. (I had not expected her to remember from last night.) We had awakened early (5:00 am). I told her 10:00. But that we could leave earlier if were ready. Around 8:00 she was on her iPad in bed and asked me what time we were leaving. I told her 10:00. She got up and started to get ready. At 9:00 she told me if she were not ready when I was ready, I could just wait. That is what I have been doing since. Just before 10:30 I went to the back of the house where she was putting up some clothes. She asked what I wanted. I told her I was just checking and wondered if she had a progress report. She asked me what time we were leaving. I told her we were going to leave 30 minutes ago. Then she panicked and said, “Why didn’t you tell me?” I told her that I did. She insisted that I hadn’t. I told her I was sorry. She has been scrambling ever since though it looks like she could be ready any minute.

She just called to me. She wanted to know where her boots were. I told her the last I had seen they were on the bed in the bedroom.

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Wondering About The Future

Kate and I are fortunate that we are able to get along so well. We enjoy life and each other. At the same time, I believe I have also noted that she has had a gradual decline in her memory, primary short term but also long term memory.

Occasionally, I have raised a question about the future. For a long time, I was concerned about when to let the children know. Then I wrestled about when to tell others. I have told a number of people over the past year. I first told our pastor because he had noticed something different about Kate. Next was (I believe) Ken and Virginia right after Dad’s 100th birthday. In January of this year I told the children. After returning from New Zealand, I told Tom and Carl. This summer I told my staff. This fall I told the Greeleys and a couple at Chautauqua friends. I also told one of the church secretaries at church.

I am still wondering about telling two of Kate’s cousins. I am thinking of doing so in January. When I tell them, I will also feel the need to tell Naomi Richardson. She was the woman who had been a long-time friend her Kate’s mother. She also worked as a local manager of her mother’s everyday affairs including supervision of in-home caregivers.

More than wondering about when to tell people, I also wonder what life will be like this time next year. I am already looking carefully at our travel plans with the anticipation that it will be more difficult for us to travel after next summer. Right now the only foreign travel I have planned is to Switzerland in May. I think that could be our last foreign trip. In addition, we are planning a trip to New York in June with Jesse and her boys and Kevin and Taylor. The only other trip planned at this point is our annual trip to Niagara-on-the-Lake and Chautauqua at the end of July and the first week of August.

One reason I write on this now is my reflection on the very slow decline that Kate has experienced. I see that many things are more difficult for her now than in the past. One of those is in short term memory. She forgets things very quickly. It is as though it goes in and out of her brain at almost the same time. The other thing I notice is how difficult it is for her to use her computer.

I have just taken a 10-minute break to help Kate. She had been trying to send online Christmas cards while I was writing today’s journal entry. She told me she was going to take a break, that she was just too frustrated right now. I told her I would help her later in the day. I had also volunteered to do so after we returned from lunch, but once again, she tried to do this independently but just couldn’t do so. She keeps making simple mistakes that prevent her getting any cards out. These are not isolated incidents but very common ones.

A few minutes ago, she walked into the kitchen. She was trying to zip a jacket to wear outside where she is now pruning her plants. This is her therapy. She begins to go stir crazy in the house all day working on her computer or doing jigsaw puzzles. She started pruning months before Dad’s 100th birthday in early 2013 and hasn’t stopped since. In fact, the shrubs never did grow back fully during the summer. Though now is a good time to prune, they don’t need it. It simply gives her something to do that doesn’t frustrate her.

Back to the jacket. She entered the kitchen trying to zip the jacket. She gave up in frustration and asked me if I would zip it. When I tried to do so, I noticed that she had her jacket on inside out. This, too, is a common occurrence. It is increasingly difficult for her to differentiate such things. Once she put the jacket on the right way, I zipped it up, and she went outside to prune. In a moment, she called to me asking where her new clippers were. She was referring to the clippers we bought at Lowe’s on the way home from lunch. I know these must be the 7th or 8th ones I have bought for her since the beginning of spring. We both looked for them. She finally found them in the garage. She had put them in a good place, but not the usual place for them. She was pleased that she had found them and not I. Each time I solve a problem for her it is a setback for her. When she is able to solve her own problems, she feels better.

When we were at lunch today, I mentioned a couple of things to which she asked, “How do you remember those things?” She is amazed when people remember simple things because she cannot do so. Along this line she continues to give higher praise to others and to performances than I believe justified. This is a good quality, but I take it as a clear indication of her inability to differentiate the good from the bad or better said, what is good and what is outstanding. These and other things make me wonder what will she be like a year from now.

One final note. She expresses things that confirm that she doesn’t realize how far along she is. Last night, for example, while she was telling me about her plans for several books of family pictures she is working on, she said there was no hurry. There is plenty of time. I encouraged her thinking and told her she could just work at her own speed. There is no deadline. My prediction is that she will never complete any one of the three (I believe) she is working on. I am sure she will experience increasing frustration trying to work on the computer. That will surely mean that she cannot finish this project that she values so much. This is sad.

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More Frustrations

Late yesterday afternoon Kate was working on her laptop trying to send online Christmas cards to a couple of friends. Like everyone who uses a computer she encountered some problems that were not a function of her own action but others that clearly were. The first was discovering that her subscription to Jacquie Lawson had expired. She didn’t know what to do; so I signed her up for another two years. I assumed that she is unlikely to be doing such things after that. If she is, we can sign up for another year or two.

The big problems she encountered were of her own making. First, she was trying to enter the recipient’s email address in a space where she should sign into her account. There was also a place to enter a password. She never realized she had made this mistake, and I did not tell her. I feel that would only depress her. The second problem involved where and how to enter the recipient’s email address and to send it. She must have worked 15 minutes trying to get Ellen Seacrest’s information entered correctly. During this time she was very frustrated. After she had sent the message, she wanted to send another card. It was like starting over. She hadn’t remembered anything about how she had done the first one. I had helped a good bit on the first one; so that partially accounts for this. She was really trying to do this by herself. After a long period of time, she gave up. She said she wasn’]t going to work on it until tomorrow and that she had reached a point at which she wanted me to help her.

This was the highest level of frustration I have seen in quite a while. It comes at a time when she is trying so hard to be independent. Earlier in the day we had been talking about my diving in too quickly to do things for her. She told me she knows I mean well, but that she feels like a child when I try to do so much for her. This topic is becoming a frequent one for us.

Today I received an email from someone with a link to a New York Times article on Alzheimer’‘s. In that article I learned of a documentary on Glen Campbell. It apparently follows him during his last musical tour (150 performances, I believe). He was diagnosed in 2011, the same year as Kate. I noticed in the article that he is now in institutional care and that during his tour he displayed behavior that I have not witnessed in Kate at all. This makes me feel that we are truly fortunate that Kate and I have had so much time to enjoy ourselves and that we still have time ahead. At the same time, stories like those of Glen Campbell make me wonder if I am blind to how little time we may have left. Right now, I believe that Kate’s decline will continue to be gradual and, perhaps, punctuated by periodic drops downward. Based on the past four years, I have a hard time believing that next summer she will be dramatically different than she is today. I hope I am correct.

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PEO Sisters Know.

On Sunday we went to a Christmas concert. Kate’s PEO chapter took this opportunity to make it a club social as they did last year. I went to get the tickets Sunday morning and didn’t find them where we keep tickets. I remember that Kate brought them home from a meeting and had them in her PEO bag. I thought I had removed them and put them with our other tickets. I obviously didn’t do so. Kate just walked in. Will continue later.

Next Morning, 7:41 am

Just back from my walk. Kate has gone back to bed, a common pattern for her. She gets up and eats. Then she gets back into bed with either her iPad or her laptop. She gets sleepy and rests a while.

Let’s go back to Sunday. We didn’t have our tickets; so I called  a PEO sister who arranged for everyone’s tickets. She didn’t answer, and I left a voice mail message. She called back later, but we were at the concert or dinner.

Yesterday morning I called Linda. I wanted to apologize for not taking care of the tickets and also to see if she understood Kate’s situation. As I suspected, she said they all knew. She indicated that is why they someone to our house early on Thursday – just to make sure all was in order. I told her that the diagnosis had been 4 years ago this coming January 21. She seemed quite surprised that it had been that long. I didn’t tell her a lot but did ask that she keep in communication with me regarding any obligations that Kate has (like meetings, etc.). She agreed to do so.

Kate and I both continue to believe that she is getting along pretty well. Kate especially does not realize the full extent of her condition. At lunch the other day she asked me if I had seen the ad for a movie about Alzheimer’s. I asked if she meant Still Angie? She said she thought so. She told me she didn’‘t want to see it. I told her I had read it and that the situation was different from ours in a number of ways. First, Angie’s condition progresses rapidly over a 2-year period. Second, Angie’s husband is focused on his career which leads him to be much less sensitive than I think he should be. That led to her telling me that she thought she was doing well. She mentioned that she does have to ask me about names. She didn’t say something that I believe she also realizes. She asks me many things repeatedly – what time we are going someplace, etc.

One thing I am asking myself now is how blind I might be to her condition. I clearly believe she is much further along than Kate does, but I have a hard time imagining that in another year that she will be as far along as Angie was at the end of two years. In time I am sure I will have an answer to this question.

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A Couple of Little Things

Ellen came by this morning to pick up her Christmas pottery and her poinsettias that she had loaned Kate for her PEO meeting on Thursday. She mentioned to Kate in my presence that after Christmas she gets into a clean-up mode and would be willing to help Kate sort through her clothes to determine what she needs to get rid of and what she wants in her closet. After Ellen left, I asked Kate about Ellen’s help. She told me that she didn’t want her to help, that she didn’t need it; she is already taking care of it and has been giving clothes to our housekeeper. She told me that she has been doing a little bit at a time and didn’t need any help. This is obviously not true, but she doesn’t realize she is not making progress.

This morning she asked me which light switch in the family room controlled the outlet she likes to use when she is charging her computer. After I told her, she said, “”How did you know that? You remember everything.” She is often amazed by what other people can remember or do.”

While we were at lunch, she asked me what my mother died of. I said, “Alzheimer’s.” I went on to say that many people with Alzheimer’s often die of something else, but that Mom really died from Alzheimer itself. She said, “You know I don’t remember much about that at all.” I told her there was a good reason for that; she was taking care of her mother, and she didn’t have the kind of daily contact with Mom that she did with her mother.

Following lunch we went to Belk to get Kate some gloves and hose. When we walked into the store, she said, “”I also want to look at some slacks.” I mentioned that we had just bought a lot of slacks. She asked me to stop talking. We did look for slacks. When I noticed that she was looking at black slacks, I reminded her that we had bought 2 pair of black slacks last Saturday. She then looked for others but didn’t find anything. She told me she would just get the gloves and hose and look at home to see exactly what she needs.

On the way home, she asked me a question (I don’t remember what it was.) When I told her, she said, “I know. I have asked you that five times.” I said, “”That’s all right. You can ask me as many times as you want. I’ll remember for you.”She said, “”You are so patient with me.”

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Getting Ready for a Party

When my alarm went off at 5:00 this morning Kate was irritated that it had awakened her. This is not the first time she has been irritated by it. This is a change, however, from the pattern over the years. I have set my alarm for 5:00 a.m. on Mondays, Wednesdays, and Fridays for many years. It is only recently that she has had a problem. Several weeks ago, I stopped using the alarm on my radio because I thought it was too aversive. I selected what I thought was a soft tone on my phone. I guess I need to look for something else.

As I was thinking about going to the store for half and half and a few other things, I thought about napkins. Kate walked into the room. I asked, “”What do you usually do for napkins?” Her response, “”Leave me alone.” I did. I looked in the kitchen pantry and noticed that we have white disposable napkins. I will check in at Target this morning to see if they have something with a Christmas design.

I did arrange for Kate to get her haircut this afternoon at 3:00. I took her by to see Dawn who cuts my hair so that she could get the right color. Kate has asked Ellen about Christmas pottery that she might borrow. I suspect Ellen will bring it over this morning.

There is still much to do.

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More on Clothes

This past Saturday I took Kate shopping for black slacks. She told me she didn’t have any that fit. We bought 2 pair and a couple of turtle neck sweaters as well as another long sweater to wear over a blouse. This time I took pictures of them so that I know what to look for when the time comes. I also told her I wanted to know where she puts them so that I would be able to find them when necessary. She did not want me to do that. She said she would keep them where she could find them.

Last night as she was getting ready for the music club, she said she couldn’t find any black slacks that fit. I reminded her that we had bought 2 pair on Saturday. She asked where they were. I told her she had worn one on Sunday and the other was in my closet held back for alterations. I got the ones in my closet for her to try on. They worked except they were too long.

This was about 2 hours before we needed to leave. I told her that we ought to go get a quick bite to eat at Panera. She hadn’t realized we had so much time. She said she would change clothes before going. It turned out that she changed to a different outfit to wear to music club. About 40 minutes had passed; so I said let’s just go to Panera the way you are. You can finish getting ready when we get back. She told me all she needed to do was put on her make up. We went to Panera. When we got back I went to take a shower and get dressed. An hour later, after I was dressed, she had completely changed.

When we got home, I suggested she give her slacks to me to keep in my closet. This insulted her. I fear that she will lose these as she has the others.

In the meantime, she is having her PEO group over on Thursday morning for their meeting and Christmas lunch. Up until today she had done almost no decorating. I got decorations out of the storage room and suggested she look through them. She has done so and gotten some things out and also put up some decorations; however, she has a tremendous job to get ready for Thursday. She has refused my help and told me not to worry about it, that she would get it done. In a conversation with Ellen, I suggested that she might drop by in the morning to see how things are going hoping that Kate might accept her help. I have also arranged for the woman who cuts my hair to cut hers tomorrow as well as giving her coloring. She asked what the color is. I couldn’t answer; so I am taking Kate by her place this afternoon to let Dawn determine the right color.

The bottom line: Kate is continuing to get along well in many respects, but she is getting worse when it comes to organizing her life and remembering recent things. She needs to be reminded of just about everything.

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Sometimes Hard to Know What to Believe

Kate and I got back from lunch at a short time ago. While we were there a funny thing happened. I made a comment about the paintings on the walls. I mentioned one in particular and said that I liked it. Kate said that she had told Ellen how much she liked it on a previous visit. That led to our walking around the restaurant to see the other paintings. Each of us commented on the ones we liked. When we got back to our table she looked at the one I had first indicated I liked. It was the one she said she had told Ellen she had liked. She indicated she did not like that one. I didn’t say anything. I just accepted this as it is a common occurrence. One moment she will say she likes or wants something. In the next moment she says something counter to the first comment. It can make it a challenge to know what to say or do. You have to be ready for change.

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So How Are Things Going?

It is hard to believe that it has been a full month since I have updated this journal. I see that on Nov. 10 I started an entry but never finished it. I will do better this time.

Kate and I got back this past Friday (Nov. 28) from a trip to Texas. We flew into San Angelo and stayed a night with her brother,  Ken, and his wife, Virginia. The next day we drove to Fort Worth where we stayed two nights in the former home of one of her aunts and uncles. It is now called the Franklin House B&B. I had arranged this sometime ago and not told Kate. I wanted it to be a surprise. She loved being there as did Ken and his wife.

We met Naomi Richardson for lunch at Sadie’s Cafe. On Friday night we went  to Kate’s cousin’s house for barbeque. On Saturday we met Kevin and his family at Nate’s BBQ.  That evening we went to the TCU/Texas A&M football game in the new stadium. Although it rained, we had a good time.

On Sunday we drove to Lubbock where we stayed at the Residence Inn near Kevin’s house. We had a Mexican meal that night. On Tuesday we went to Rachel’s parents house. We then drove to a small town near Midland for lunch. That made for a nice day. We celebrated Thanksgiving at Ken and Rachel’s. Then we drove back to San Angelo on Friday where we caught our flight home.

There has been nothing of great import that has taken place since my last entry. Kate has had another appointment with her doctor. There was nothing to report on our end or on the doctor’s end. I would say that she continues to display some of the common symptoms that have happened pretty regularly over a long period of time. Our (my) biggest problem continues to be getting ready to go places. I may get a good taste of this as we prepare ourselves for several Christmas receptions, one of which is tomorrow night.

I would say that she has been somewhat more assertive about doing some things for herself. For example, I offered to help her with packing for our trip. She would have no part of it. As has happened on several trips in the past, she did not take enough underwear. One morning we had to go to Target for a bra. Another morning I went to Target for panties. One day, she put on a pair of my jeans. I never said anything. It gave her another change, they fit, and no harm was done. I don’t think she ever realized she had done this.

The first morning we were in San Antonio, she was looking for a bra and tossed clothes all over the bed. I volunteered to help and started putting clothes in drawers and the closet under the assumption if we got some things out of the way, it would be easier to spot her bra. I noticed that she took everything out of the drawers and put them in her suitcase. It turned out that she thought we were going home. The fact that it wasn’t even Thanksgiving did not strike her at all. One day during the week in San Antonio, she told Kevin about our staying at the Franklin House. She hadn’t recalled that we had taken him and his family through the house on Saturday.

She really enjoyed seeing people, especially her high school friends. She seems to be unusually enthusiastic and talkative when she gets together with people. I need to work harder on seeing that she gets more opportunities. We are together so much that we don’t talk that much. She is also getting a little stir crazy being in the house so much. Because of the cooler weather, she is not working in the yard nearly as much. That doesn’t’ leave her many things to do for stimulation.

We laugh a lot. She is much more prone to let me know about things I don’t do. Today, for example, I mentioned that I had not checked phone messages on our home line since our return. She wanted to know why I had not done it. Some of the things I consider to be cute. This week we had lunch at Panera. Each of us got, as usual, 2 napkins with our meal. Not noticing that she had two napkins, she reached over and took one of mine. It was only when I pointed out that she had taken my napkin that she realized she had napkins too.

On Friday morning in San Angelo she asked me if we were going home tomorrow. I told her we were going home “today.” She was ecstatic. Periodically through the trip home she expressed her eagerness to be home. Upon getting home and through the next day she continued to express her pleasure in being home.

In sum, we are doing well. I see no signs of depression on her part or mine. I do, however, recognize that she does not like being dependent on me to drive her everywhere. Today she also asked if I would build a fire for her to enjoy while I attended a meeting. I told her I didn’t feel comfortable doing so. She accepted that.