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Coming Home

As the previous post indicated, we had a great time in Chicago. Kate, in particular, enjoyed being with Brian and especially enjoyed my interaction with him. I don’t think there was anything noteworthy about that interaction. I look at her reaction as another indication of how impressed she is with the things that other people do quite normally that for her are becoming difficult. She thinks many of the people she is around are very intelligent and skilled in many areas. She believes Brian is quite observant because he notices things that she doesn’t notice. One of the things she is losing is the ability to notice things around her. She misses so much; however, that doesn’t keep her from enjoying travel and doing things like attending shows and movies. She also felt that I did a good job of explaining things to Brian. I was, indeed, attempting to teach him things without being too pedantic. For Kate, this was something she can’t envision herself doing. In fact, when she tries to explain things to the grandchildren or anybody else, I can tell that she works very hard to make a clear expression of her thoughts. It is getting harder and harder to express herself.

Lest I paint too glowing an impression of the way that I handle things, especially with Kate, I should point out that Kate told me yesterday that I said something that I should not have said and that there was no reason to say that. After she said she didn’t know something, I had told her that I had told her the day before. That is like saying, “Do you remember . . .?” That is also something she has asked me not to say. Something else occurred today, but it was not a big issue. When she was looking for her computer, I told her that I had taken it to the shop for servicing before we left for Chicago. As it turns out, I had told her, but she had forgotten which is not surprising since that was a week ago yesterday. I did not tell her I had told her before, but I did say that I was sorry to have caused her some distress. She said she wasn’t distressed, she just wanted to know where her computer was and that I should have told her (which I had but didn’t want to say so).

The final thing that I believe is important to say about our trip home is that she was very eager to be back home. She repeatedly expressed how much she wanted to be home. When we finally arrived at the airport, she had a hard time moving quickly off the plane. She was just whipped and emotionally drained.

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Addendum to Previous Post

After picking up Kate at the end of her PEO meeting, we stopped for lunch. While we were eating, I started to tell her something that I had heard from my dental hygienist this morning. I told Kate she was going to interview someone in Memphis about their experience with embryo adoption. She went on to say there were all these fertilized embryos that were frozen and stored in the clinics where couples had had in vitro fertilization. There is a movement to do something positive about them. I was about to tell Kate more when she had a problem with acid reflux; so I stopped. She had trouble recovering. We ended up leaving and heading home. When we were halfway home, she said that she had recovered. I asked if I could continue my story. She said yes. I said, “So my hygienist was going to interview this couple who has adopted an embryo.” Kate immediately said, “At PEO this morning somebody told me about that. They have a lot of embryos that could be used for people who can’t have a baby on their own.” I am sure she had simply forgotten that I was the one who told her this, not someone at PEO. This is another good example of the deterioration of her short term memory. I am also noticing problems with longer term memory as well, but it is the short term that seems especially weak.

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Birthday and Preparations for Chautauqua

Today is my 74th birthday. It looks like a day of getting ready for the trip to Chautauqua. We leave Thursday morning.

Kate appears to have forgotten that it is my birthday. I will think of some way to let her know without making her feel bad that she has forgotten. I may remind her that we are planning to go to a movie as part of our celebration. I told her we would also look for clothes she might need at Chautauqua.

On the way back from Nashville yesterday afternoon, I asked what she would think if we took Jesse and the twins along with Kevin and Taylor to New York next summer. She liked the idea.

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Tuesday, May 20, 2014

I have found that so many things are happening I can’t remember to report on all of them. In an effort to do a better job covering what’s going on, starting today I am going to attempt to write daily updates. I may not be as detailed, but I hope to write more often.

Yesterday was a good day. I took Kate for a haircut at 9:00. While she was there, I went to Barnes & Noble, got a cup of coffee and checked email. I find this to be quite relaxing and today it took a little longer since Kate was also getting color this time.

When she finished, I got a call from her hairdresser’s  daughter telling me Kate was ready. I had made sure that Kate had her phone with her; so I wonder why she didn’t call me herself. Perhaps she forgot she had the phone. In the past few months, she has used her phone much less and usually doesn’t have it with her. That may be because she doesn’t usually have her purse with her. That is to prevent forgetting it.

When I got to the hairdresser’s, Kate asked me if I had the money to pay. I told her I had given her the money. She didn’t remember at all. I told her that it was in a pocket in her purse. I showed her, and she paid. This conversation was in front of her hair dresser, her daughter, and one other customer. This kind of thing makes me think that surely they know about Kate’s AD.

From there we went to Belk’s where I bought some new athletic socks and Kate got hose that she has desperately needed. We also got some new towels for our bathroom, the first since we moved in almost 17 years. Kate also bought some new sunglasses. I wanted to discourage the purchase, but she really wanted them. She has sunglasses although she doesn’t know exactly where they are. This is but one example of when I feel the priority should be on other things. For example, she needs more casual clothes that fit her. She doesn’t seem to feel the same need.

At my suggestion, we went to shop for slacks after leaving Belk’s. She didn’t find anything. I will continue to push on this although I have to be gentle.

We had lunch and went back home. She got ready to go to a funeral over an hour earlier than departure time. Then when it was time to leave, she couldn’t find her shoes and had to wear a different pair. We went from the funeral to get a sandwich and salad for dinner. She just had iced tea. We got home at 6:30, and she changed clothes before going outside to work in the yard. We were going to watch a movie, but she didn’t come in until almost nine o’clock. She thanked me for letting her stay out and commented on how good she felt. We both mentioned how much working in the yard is like therapy for her. It is really amazing.

Thus it was a good day. She was excited about today as well because the woman who helps with landscaping came over at 9:00 this morning to spread compost in the flower beds.

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Everyday Surprises

Today Kate is hosting her PEO chapter and is also doing the program. At last month’s meeting something came up about the September meeting. It wasn’t until then that Kate remembered that she was hosting it and that she had the program. A couple of weeks ago she was working on her program and felt good about her progress. Since then she has not worked on it. I think that is because she felt it was in pretty good order and wouldn’t have much to do to complete it. On Monday or Tuesday of this week I mentioned that it would be nice if we cut the grass and cleaned up the yard. Kate didn’t respond. Then yesterday while we were at lunch I mentioned her PEO meeting for today. She said, “It’s tomorrow?” She had completely forgotten. This is another example of my need to remind her of her commitments, appointments, etc. The trick is that she seems to be getting more sensitive about my playing a larger role and is quick to show me that she can remember, that she can be on time, etc.

I got the coffee ready for her and wrote a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. I wrote another note telling her that the half ‘n half was on the top shelf of the refrigerator in the kitchen. I went to Panera and bought bagels and cream cheese. I put the bagels on the island where she couldn’t miss them and attached another note saying that the cream cheese was in the refrigerator in the laundry room. Before leaving I showed her the notes and reviewed what she was to do and where to find things. Not too long after I got to the office I received a call. She asked in a semi-panicked tone, “What about the coffee?” I told her there was a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. She then asked me where the coffee maker was. The surprising thing is that the coffee maker is always in the same place on the kitchen counter right under the cabinet that holds our everyday pottery. In other words, she opens that cabinet every day for something. These things don’t bother me at all except that I feel sad for 2 reasons: 1) It is another reminder of the progression of her illness and that things are getting worse and 2) I feel sad for her because I know she must experience an immense amount of frustration over such things.

Something that bothers me in a different way is what I consider her misplaced emphasis on priorities especially when time is short. First, on occasions when we are going somewhere together, I get frustrated when she spends time doing things that don’t need to be done at that time. Second, because getting ready for anything is difficult for her, I have to play a greater role in seeing that she is ready. I find myself getting irritated even though I know that she can’t help it.

This morning is a case in point. When it was 45 minutes before she was having company, she was outside piddling in the yard. When I went out to get her, she said, “I know. I am coming in.” This is an everyday occurrence. As I have mentioned several times, I think she gravitates to the yard because it is the one thing that she can do that doesn’t involve her feeling that she is doing something that is wrong or having me tell her she has done something wrong. I am sure that if a master gardener were watching her, he/she would point out many things that she is doing wrong or inefficiently, but this is one thing she can do without that kind of experience.

Because she can spend hours in the yard even when it is hot, I need to come home early if we are going someplace at a particular time. She isn’t able to answer the phone when she is outside; so I need to be home early enough for her to start getting ready. I cannot count on her remembering.

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What’s going on now.

Much of my observations have focused on specific instances of the progression of Kate’s AD or specific examples of her symptoms. Today I would l like to give a general appraisal of how things are going with Dad, Kate, and me. First, a comment on Dad.

After Dad returned from his most recent trip to the hospital with bleeding ulcers, he was incredibly lethargic for a few days. I’m not sure, but this may have been a result of the anesthesia he received before they performed the endoscopy that enabled them to diagnose his problem. Even now some 2 weeks later, he is not back to normal. The major symptom is that he is harder than usual to arouse when I visit him. Yesterday, he asked me if I could talk with the doctor to ask if it would be all right for him to sleep more because he didn’t want to get up. He thought he might be better off to sleep more. I talked with him about this at dinner. I told him he needed to get up it was good for him to get up and to eat and that he would deteriorate if he just stayed in bed all the time. He seemed to understand this and did not object.

Although he has for a long time had good days and bad days, it seems like he has greater swings recently. Some days I come home very upbeat over his condition. Other days I am low.

I am also noting more memory issues. He even forgets his speech therapist’s name sometimes, and she is a very special person to him. In fact, about 10 days ago, he remembered her husband’s name but couldn’t remember hers. He also slips on the name of his writing teacher as well as two members of his Sunday school class. He apparently had a dream recently about visiting the home of one of them. He seems to recall it was a very large house and that she has something to do with Mountain Valley. I think he may have been trying to convey that she was doing the laundry for Mountain Valley. Although he still talks about his upcoming birthday, he doesn’t seem to be as energized about it and is not making as many suggestions about things he wants done. This does not mean he has stopped completely.  The other day he told Larry that he wants to have name tags on each of the roses he distributes to the ladies. He also continues to surprise me by asking about my staff and Gordon Seacrest. He clearly has not withdrawn from the world around him.

Turning to Kate, I would have to say that she continues to get along pretty well even though she experiences some discouragement over her condition. I have always noted that the person (in this case, Kate) with AD knows far more than most people believe and experiences frustrations related to her condition. I am beginning to notice that she has less concern about some things that would have been an issue before. For as much as the past year or so, I have noticed that she does not notice spots on her clothing that would have bothered her before. When she rinses dishes, she does a horrible job. She seems less concerned about how she dresses. The other day we went out for lunch and she didn’t wear a bra. That’s something that she would never have done before.

She finds it even harder to accomplish various tasks. Last night while she was working on a Word file in preparation for a program she is doing for PEO next week, she was frustrated and said, “I just can’t do anything anymore.” This type of frustration is what, I believe, leads her to spend so much time puttering in the yard. She has been out there for almost 2 hours already this morning. Even though we are having hot weather, she goes out periodically during the day. She gets so hot and dirty that she comes in and takes a shower. Sometimes she takes as many as 3 showers a day though his is not typical. She as commented to me that she doesn’t know what she does when she is out there which is to say that she doesn’t believe she can recite a long list of things she has accomplished. Perhaps that is why I feel she just finds it something she is able to do without making any mistakes or having someone telling her she is not doing it the right way.

So how am I doing? Like Kate, I am doing well overall; however, I am having my own frustrations. For example, I have to be more attentive to her schedule and provide help in making sure she doesn’t miss appointments or commitments she has made. As I left Dad yesterday afternoon, I called her to remind her that she was going to meet me for supper at the church. Not surprisingly, she had forgotten even though we had talked about it, and I had reminded her before leaving to see Dad. She can completely forget things quickly.

This can be a particular problem in conversation. If we are talking about someone and a moment passes and I say, “I told him . . .” She will either look confused or ask, “Who?” Increasingly I feel the need to remind her of things, but she sometimes resents this.

The biggest issue for me is the responsibility of taking care of my own affairs while increasingly being responsible for her and for Dad’s. When I go to see Dad, I frequently forget some things – for example, take him bananas but forget to leave them, get him up and take him to the dining room but forget his box of Kleenex that he likes to have with him at all times. I have mentioned before that Kate committed to preparing a new edition of our neighborhood directory. If left to her, it will never get done. What has been done so far is what I have done or done with her. She doesn’t even mention working on it now. This morning I spent an hour entering or checking information. I am going to take a little at a time and get it done on my own. She has also said she would do a city-wide directory for PEO. I put all of the information she will need to do it in a single place. I fear now that she has misplaced it. This kind of thing goes on and on, and, of course, this is only the beginning.

One final comment. I am beginning to wonder if her medications are not actually helping. I say that because she is better now than I might have predicted 3 years ago. Perhaps we will have more good times ahead than I originally thought. That would be nice. At the moment, however, I am still looking at the first 6-8 months of 2014 as possibly the last great traveling moments for us. We leave for New Zealand on Feb. 11. We will also have another trip to Niagara-on-the-Lake and Chautauqua in Late June. We are also going to take Heather to New York during the summer. In addition, we will have the other grandchildren for a visit. I don’t know what our situation will be after that.

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Forgetting People

Last night we went out for pizza. As we entered the restaurant, we saw two former members of our church. They had been good friends of Kate’s when she was the church librarian. She didn’t remember either of them. When we see people we haven’t seen in a while, I am careful to let Kate know quickly so they won’t notice that she doesn’t remember them. I did so this time, and I am sure they didn’t sense any lack of recognition. This is the kind of thing, however, that I can see catching up with her at some point.

In our conversations, she often mentions that she can’t even picture certain people that she has known pretty well in the past.

I also continue to observe her forgetting things that have occurred in the very recent past. Yesterday, for example, I picked her up at Bruegger’s where she was talking with Shirley Hazel. We talked about the two couples getting together for dinner and a movie. Last evening before dinner, she told me that she and Shirley had discussed this. She didn’t realize at all that I was with her and was aware of the discussion. Of course, this could happen to anyone. It is just that this is a normal occurrence these days.

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Always Trying

Earlier this morning I walked into our bedroom where Kate was entering something in her iPhone. She asked me what channel CNN was on. I told her I didn’t know but that I would get it for her. She said the “Favorites” feature wasn’t working. I got the channel, and she asked me what number it was. I told her “1202.” She then entered it into her phone. This is a good example of the many things she does to help herself function better. I admire her for trying. At the same time, I feel sad as she works so hard trying to organize herself to prevent losing things or to help herself remember how to do things.

I continue to repeat the same old story. I don’t know that anyone else but her hairdresser suspects she has AD, but she has a serious problem functioning with daily tasks. This past week she missed another hair appointment which she rescheduled for two days later. She didn’t have it written down, and she hadn’t given it to me to write on my calendar. We had developed the practice of her telling me when her next appointment is right after she leaves her present appointment. We goofed. She doesn’t remember scheduling the next one; so she is going to have to call and either make one or jot down the one she made.

I haven’t said anything about Dad in a while. I suppose that is a good sign. That means he hasn’t had a lot of problems. This past week I have, however, noticed a change. Three or four days he has been very hard to wake up. One day this week he was so hard to arouse that we sat in the dining room for an hour without his becoming talkative – just saying he wanted to go back to bed. He didn’t eat the cottage cheese I had brought him, and we went back to his room before his dinner arrived. He just wanted to sleep. The next day he was fine.

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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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It’s the little things.

In an earlier post I mentioned that it’s the decline in Kate’s short-term memory that seems to be most obvious change that is occurring. That is what will finally cause her friends and family to suspect dementia. Here are several recent examples.

1. I just arrived home (10:20) from getting to the hospital at 4:00 this morning after Dad took a fall around 3:00 a.m. She was working on something for PEO and didn’t even ask about Dad. I think she remembered that he had had a fall, but I dont think it was sufficiently present in her mind to automatically ask how he was doing.

2. When I drove up to the house, I saw her glass of iced tea at the curb in front of the house near the mailbox. No doubt she had been doing some pruning around the shrubs and put her tea down. Then she finished without remembering that she had put it down.

3. Last night she said she had lost the power cord to her computer. I walked into her office where I had seen her using the computer yesterday afternoon. The power cord was right by the chair. This is an interesting symptom because it is not just forgetting where she left the cord or where she last used it, but she also has trouble focusing on things when she is looking for them. I am remembering my recent participation in a virtual dementia experience in which our eyesight was diminished with dark light and goggles. I simply didn’t see things that I would have seen otherwise.

4. On Monday of this week I did a little trimming of some shrubs that Kate had asked me to trim. As I was doing so, I found some clippers in the space between the shrubs and the house. She had no doubt been using them, put them down, and then forgot them.

5. One morning this week I left for the office while Kate was out on a walk with a neighbor. As I got close to our street, I saw Kate walking by herself in the direction of our street. Later I asked her about that. She gave me a funny look that made me think she didn’t want me to ask. (Incidentally, frequently she doesn’t want me to ask her about something and has developed a short hand way of communicating that. She says DNA (Do Not Ask.). Then she explained that she and the neighbor had finished walking and as she was returning to the house she walked by our street which is almost a half mile from where I saw her. Because she has always been geographically challenged, I fear that this is one of those things that is going to get us in trouble sometime. We have now had a number of mini-crises surrounding this. The first was in Birmingham when she and a friend had gone to a shower for niece. She has had several similar experiences when going to PEO. One of the most dramatic was when we were going to meet our son, Kevin, and his family at the airport a couple of years ago. She was supposed to meet us there. When she hadn’t arrived in a reasonably length of time, I called her. She was in downtown Knoxville and had no idea how to get to the airport. All of us packed into my car and met her so that she could follow us home.