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Ups and Downs and Special Moments

The past few days Dad has had his ups and downs. This past Friday, he called Larry and me. He sounded coherent, but he said he didn’t know where he was. As usual, I assured him he was at Mountain Valley and that I would be there in the afternoon. He said he was all right. He seemed quite lucid at dinner. I had a good visit.

Yesterday when I arrived, he was up and in his wheel chair but sleeping. He woke up right away when I spoke to him. Before going to the dining room we went back to his room where I put a couple of bananas in his top drawer. Then he needed to go to the bathroom. He asked me if the birthday party was still on. I told him it was and asked why he asked. He said, he thought it supposed to have happened but didn’t. I told him we had 3 weeks to go. He also said something about how good it was to see me and that I hadn’t been out all week. I told him I had been there every day. He said he couldn’t remember my being there. I joked with him that he was giving me an easy out now. I could come only once a week and he wouldn’t know the difference.

I brought him a couple of hot dogs and some yogurt. He ate it all and enjoyed it. As we sat together, I told him that we might consider my interviewing him at his party so that he didn’t have to try to remember any prepared remarks. He seemed to like that, and I started a trial interview. He repeated what a good life he has had. We talked a little about the ups and downs of life. I asked him what the most difficult time of his life had been. He thought a moment and said, “I guess when my father left us.” I said, “Tell me more about that.” He said, “Well, I guess I was ashamed.” This is the very first time I have ever heard him say anything this self-revelatory. I have long suspected that he was hurt by his father’s departure from the family and knew that he had explored trying to find him when I was about 12 years old.

I asked him about any school teachers that he recalled. That led to his mentioning somebody in his junior high school who had taken an interest in him. He said it was in the 8th grade that he developed a personality. He went on to say that he thought his personality throughout his adult life and today was shaped by those days in the 8th grade.

As we talked he asked me, “Do you think I’m getting senile?” I said, “no, I wouldn’t say that. I would say that your stroke has affected your brain and that makes you confused sometimes and causes you to have some delusions.” Then he said, “I’m not ashamed of my dementia.” I told him there was no reason to be ashamed, that many people suffered from dementia.

Our conversation went on perhaps a total of 40 minutes or so before we went back to his room. We both felt good. He commented again on how glad he was that I had come out. When I tucked him into bed, he thanked me again and told me that I had taken good care of him. I told him we had done it together. He said, “Well, you’ve done three-fourths of it.” I told him, “We have walked a long way on this road, and we’ll walk the rest of the way together.” I left feeling very good.

Last night around 10:30, he called and asked if I were coming to pick him up. He thought it was time for the party. I reminded him that we have 3 more weeks. Then he asked, “Is Elizabeth here?” Elizabeth is an Eastern Star friend who is driving up from Gainesville, Florida, for the party. So he continues to show more confusion than is normal for him. Once again, I think this is going to become common in the days ahead. I am thankful for the special moments like yesterday afternoon and will try to remember them rather than the down times.

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Update on Dad

Last week was an especially good one for Dad. He was more awake when I arrived and quite alert – not as energetic as he used to be but in good shape. I enjoyed my time with him.

Saturday while Larry was visiting for the weekend, we brought Dad to the house where we showed him a video of him that was made the morning of his 80th birthday party. He talked extensively about his life. We brought him into the bedroom where we have a larger TV so that he could see better. He couldn’t hear well; so I would tell him what he was saying. The video captured his attention even with his bad hearing. It was almost 2 full hours, and he never tired of watching. I haven’t seen anything maintain his attention like this since before his stroke over 3 years ago. It also led to his telling us more about his life experiences. He remembered a great many things. We were excited. It was a very special moment.

Starting Sunday (this is Thursday) he has been less energetic. Each day has witnessed a downward progression. Yesterday was the worst. He was just the way you picture the stereotype of a nursing home patient. He didn’t know where he was and asked his nurse to call me. He was not easy to understand, but told me he didn’t know where he was. I told him he was at Mountain Valley and that I would be there to see him in the afternoon. Even after my telling him, he continued to say that he didn’t know where he was. He ended up giving the phone back to the nurse to give me directions to where he was. She told him I knew where he was. He got back on the phone, and I tried to reassure him I would be there.

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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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Moments of Frustration

I just left Kate in her office where she is working on the invitation to Dad’s 100th birthday party. She started on this about 6-8 weeks ago and had it virtually done. I had given her some edits, especially a couple of pictures I wanted instead of the ones she had put in. I have been diplomatically (I think) trying to get her to finish as soon as possible so that we would not be in a rush near the end. I plan to mail them out next Thursday or Friday. Several times over the past 2 weeks, I have mentioned that I wanted us to finish the job. She forgets and doesn’t get to it. Then when I nail her down and say let’s do it now, she starts to edit more and more the way she did on the album for her mother’s family she had done with her brother Ken. At lunch today I said we would come right back and print the invitation before final edits. She first had to take care of watering plants. Then she came in. I just found her editing some more, and all I want is to printed them. When we tried last week, it was printing too small. We have to solve that before we can go any further. At this point, it would be easier for me to take it to Staples for printing, but I don’t want her to feel bad. In the meantime, I feel frustrated because we should not have found ourselves into any last-minute rush. This kind of thing has become the norm though.

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Feelings of Being Unappreciated

Yesterday as I was leaving Mountain Valley, I had a brief conversation with the woman who owns the dress shop where Kate buys a lot of her clothes. Her husband is there on rehab and will be going home next week. She had mixed feelings about his coming home related to the responsibility of caring for him. She noted that he has so many needs and is always asking her to do things for him. I shared a similar feeling about Dad. I do so many individual things while I am with him that I wonder how he gets along when I am not there.

That led me to think about taking care of Kate after her colon surgery as well as her foot surgery. It seemed like she was always asking for something. Of course, she was. After all, we go about our daily activities doing a lot of things for ourselves. When we are handicapped, we don’t want to give up everything. Naturally, some of the things we want are not frills – e.g., medications, especially those for pain.

My point is that it can be hard for the caregiver even if the patient is considerate. They have many needs that require attention. This also made me think of something yesterday. When I got home after Kate’s PEO meeting, she was not home and all of the dishes were on the kitchen counter and the island. Plates had been rinsed but serving dishes were mostly sitting with the remains of food. I cleaned up almost all before Kate got home and took care of the balance after we returned from a reception at the foundation. She never said a word. It was as though she never noticed that it was there to begin with. I didn’t fret over this, but I did have an immediate feeling of not being appreciated. On balance, however, she is quite good about making me feel appreciated, but there are lots of things she doesn’t notice because of her AD. This was one example and there is no good reason to get hot and bothered over such things.

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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.