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Not Feeling Well

Yesterday afternoon about 3:30, Kate wanted to get out of the house. I decided it was best to go back to Panera because it is close, and we would be able to get back home by 5:00 to get ready for dinner at Casa Bella. After an hour, Kate indicated that she was ready to go home. She seemed a little frustrated. I assumed that she might have had trouble with her puzzles on the iPad. That continues as an issue.

As we were leaving the parking lot, a car turned into the lot right beside us and startled her. I didn’t think much of it. She is often startled by sudden noises or movements. In just a few seconds, I looked over at her and saw that she had a napkin up to her mouth and seemed to be holding back tears. I asked, “What is wrong?” She said in a loud, almost defiant tone, “I don’t know.” Now she was crying but trying to hold it back. Crying has never been something she likes to do. She cried all the way home which, fortunately, is only 4-5 minutes at the most. It was very clear to me that this response was something totally uncharacteristic of her. I got out of the car in the garage and went around to help her. She got out very slowly. She was almost shaking and looked confused and feeble. It was almost as if she were wondering, “What is going on? Where am I?”

We walked back to our bedroom. I noticed that when she looked at me it was as if she didn’t know who I was. I spontaneously said, “Do you recognize me?” That brought an angry response. She said, “Of course I know you.” I didn’t push for any further explanations. I told her she was having a panic attack and it was probably best for her to simply lie down on the bed and relax. Then she sat on the bed and started to undress. As she did, she said she wanted to take a shower. She asked me not to leave her. I helped her into the bathroom and turned on the shower. She got in while I got a towel and waited for her. During the shower, she started to regain her composure and said she was feeling better.

When she got out and had dried herself, she seemed fine. It was then that I told her she seemed better and wondered if going ahead to opera night would make her feel better. She indicated she thought it would.

We had another pleasant evening at Casa Bella or so I thought. When the program was over and we had said our goodbyes, she walked out to the car very slowly. She told me she was very tired and wanted to get to bed right away when we got home. It was 8:35 then.

Before we got home, she began to tear up again. I helped her out of the car when we arrived at home. She held on to me and didn’t want me to let go of her. We walked directly back to the bedroom where she seemed to be frightened. As with the earlier episode, she looked confused and was shaking very slightly. I got her a night gown while she undressed. She wanted me to get into bed with her. I did. She wanted to be held and finally went to sleep.

Shortly after 4:30 a.m., she woke up and appeared to be having another attack. She asked me where the bathroom was. I got up and walked her to the bathroom. When she had finished, I walked her back to the bed. As before, she wanted me to hold her. I did. After a while it appeared that she was asleep; so I pulled away from her. When I did, she pulled me back. I remained that way for another 45 minutes when I got up for breakfast and a short walk. She remained very calm.

When I got back from my walk about 45 minutes had passed. I checked on her. She was still sleeping. She woke up around 8:00 and went to the bathroom. Then she went back to bed. I told her I would be in the kitchen if she needed me. I just went back to check on her. She is sleeping.

This experience leaves me wondering if this is something that might recur today or some other time in the future. Will it get worse? We have been so free of complications during this long, slow transition. I wonder what lies ahead and what we can do about it. Of course, I plan to contact her doctor. I may also check the caregivers forum on the Alzheimer’s Association website and the Memory People page on Facebook. This reminds me of the Alzheimer’s Association help line. That may be something else to explore.

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Another Marker on Our Journey

I was so relieved that Kate had accepted and enjoyed the new sitter yesterday that I neglected to make another comment that is relevant to her whole journey. Her willingness to accept the sitter and her actually saying that Anita is her “guardian” or “companion” is a significant indicator of a newer stage in her illness. In some ways, it seems rather natural. After all, she has gradually given up lots of her independence. At the same time, the fact that I was so concerned about how she would feel about a sitter is an indication that I didn’t think she had reached such a compliant stage. This is another illustration of how even someone as close to her as I am could misjudge her decline
So I have mixed feelings about Kate’s reaction. I am glad it was easy for her to accept a sitter. On the other hand, I am once again saddened by another sign of where we are headed.

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More Signs of Change

Kate seemed unusually confused at lunch today. As we were waiting for our food, she pointed to several military from Fort Jackson which is very near where we live. Then she asked me the name of the base in Fort Worth. I told her that it is the Naval Air Station. .

After a quiet moment or two, I told her that tomorrow is Brian’s birthday. He is our oldest grandchild. She asked, “Who are his parents?” I told her that Kevin and Rachel are his parents. I mentioned that Brian is now 19 and how it didn’t seem that long ago that we had flown out to Texas when he was born. As we talked a little more, she asked, “Who are his parents again?”

She also asked me how long we had been married. I told her we had been married 54 years and that it would be 55 next May. We started talking about other things, and then she asked again how long we had been married. As I sat across from her and listened to her confusion, I felt a deep sense of sadness. There were moments when I fought to hold back the tears.

On the way home, she said she wanted to pull leaves. I told her I knew that was something she really liked to do. She acknowledged that and said, “Of course, when I start my two albums, that will keep me busy.” It is interesting that this comes up once in a while even though it has been about two years since she has done anything on them. At least she said “when I start” on my albums. She must recognize that she hasn’t been working on them.

When I pulled into the driveway, she asked if she could pull leaves. Then she asked about using clippers. After that she asked if she should wear a cap and where she should start. This is just a continuation of a pattern she has established over the past few weeks.

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A Surprising Positive (?) Change

Much earlier in Kate’s journey, I commented on the fact that she didn’t ever put up her clothes. I have pictures showing clothes stacked on the bed in her office, on the floor, and in two of the guest rooms. This continued for a very long time. I am glad to report that she is considerably better about hanging up her clothes now than in the past. That doesn’t usually happen at night when she changes into her night clothes. At that particular time, she almost always throws her clothes on the floor or the chair beside the bed along with her shoes and socks. Sometimes she picks them up in the morning or later in the day. Other times I get to them first. Over the past two-three years, I have made a point to try to pick up her clothes wherever I find them and put them back in her closet. But I don’t want to take away from the fact that she is actually working hard to keep things straight.

I don’t really know how to account for the change. I consider it positive for two reasons. One is that it makes it a lot easier for both of us to find the clothes she wants to wear. Secondly, I think it is good for her to have a responsibility, something to do besides working jigsaw puzzles and pulling leaves. On the negative side, I also imagine that she is struggling to fight the more natural tendencies of her Alzheimer’s. I see it in moments when she tries to figure out how to put on a night gown or a top. On occasion, I offer my help. She almost always turns me down. These are among those moments when I feel so sad for her. I know it takes an effort for me to face a losing battle trying to prevent or solve problems she has. I can’t imagine how it feels to have them myself.

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Another little thing

Earlier this afternoon I posted a journal entry about little changes in Kate’s behavior that are becoming commonplace. This afternoon she exhibited another one. It is not the first time this has happened, but I don’t recall saying anything about it. Kate came in from outside where she had been pulling leaves. She was hot and sweaty. Naturally, she wanted to take a shower. Typically, she just goes to one of the bathrooms. She chooses the guest room bath most often. Today, she looked at me and asked which one I wanted her to use. I told her could have her pick. She started to walk away. Then she turned around and asked, “Did you say the middle one?” I said, “That would be fine.” This fits the increasing pattern of asking for my advice or permission.

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Something New and Disturbing

A few minutes ago I left Kate in the bedroom working on her iPad while I went to the kitchen to check on something. As I left, I said, “I’m going to get ready for a shower in a few minutes.” When I came back, she had put the iPad on the ottoman of her chair and was watching the news on TV. She also had an angry look on her face. She said, “You told me to put that thing (the iPad) down and watch the news for a change.” I told her I hadn’t said that. She said, “Yes, you did. Don’t deny it.” I leaned down by chair and put my arm around her shoulder. I decided arguing wouldn’t get us anywhere. I told her I loved her and that she didn’t need to watch the news. She sat quietly fuming for a minute. Then she said, “I just get so tired of being so dependent on you. I can’t go anywhere or do anything without you. Here I am in my 70s and I’m treated like a child.” I repeated that I love her and told her I knew it was hard.” Then I asked if she would like to watch Golden Girls. She said, “I don’t care.” I turned off the news and now Golden Girls is playing. She is working on her iPad again.

Although she has talked any number of times about her not liking to be dependent on me, this is the first time she ever blamed me or took it out on me. I realize that she is likely to have forgotten this tomorrow, but I can’t help wondering if this signals a change in her outlook toward me. It comes just after a period of several days during which she has been unusually cheerful and cooperative. What a dramatic change she has made tonight.

The drama is now over. She just got up from her chair and said, “Well, Babe.” She didn’t sound angry at all. I asked if she were going to get something to wear to bed. She smiled and said she was. I told her I loved her, and she walked to her room. I hope she returns in the same state of mind in which she left.

Wow! This came at me from left field. To underscore how dramatic this was for me, this was the first time I have ever heard her express anger with me from the beginning of our marriage to now. She has expressed irritation frequently over the past few years, but this reaction was well beyond anything I have seen before. I am very glad that it has blown over and, hopefully, won’t return again.

When she returned from her room, she was just as pleasant as she has been for the past few days. It is as though the angry outburst never happened.

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More Signs of Change

Following yesterday’s eclipse, Kate and I went to Barnes & Noble. This was unusual in that she worked steadily on her iPad for more than 2 hours before leaving for dinner. Just before 6:00, I asked if she would like to go to dinner. She said, “In a few minutes.” I waited another 15 minutes. She still wasn’t ready. Finally, at nearly 6:30, I told her I thought it was time for us to go. That is very unusual. It is rare that she wants to stay in one place that long.

We went to a nearby restaurant for dinner. As we got out of the car, Kate said she wanted to find the restroom. We met the hostess at the front who told us the table at which she would seat us. Then I walked Kate to the restroom since it was not easily spotted from the entrance or where we were to be seated. When I showed her the door to the restroom, I started to turn around. I was going to wait at out table and keep my eyes out for her when she exited. She very quickly asked me to stay right there. That is the first time she has ever done that. That is another indication of her own realization that she can have a hard time finding me.

When we got home, she wanted to pull leaves. As she has been doing lately, she asked if she could. Then she asked where she could work. Later I called her to come inside as it was getting dark. After she was inside, she asked, “Are we going to stay here tonight?” When I said yes, she said, “That’s what I thought.” It’s been a while since she has done this, but it has occurred periodically over the past couple of years.

In a few minutes, she called to me. She was in the middle bathroom. She showed me the clippers in her hand and then put them under the towels in the closet by the sink and asked if that were all right. I hesitated. Then I told her I might forget where they are and to give them to me so that I could put them in the laundry room or in the garage where we usually kept them. She accepted my suggestion and gave them to me. She has been especially cooperative today.

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New Patterns

I have previously noted on several occasions that Kate will ask me if she can pull leaves outside as we approach the house after being away from home. This started as something only occasional. It is now becoming a regular pattern. Normally, she asks, “Can I pull some leaves?” After I tell her she can, she frequently asks, “Can I use the clippers?” Often she doesn’t say the word for clippers. She just closes and opens her right hand. I know what she means and tell her it’s all right. After that, usually as we have pulled in the driveway or garage, she says either, “Where can I start?” or “Where do you want me to start?” or just “Front or back.?” I sometimes tell her she can start anywhere she wants. Sometimes I know that we will be going out soon and don’t want her to get so hot that she needs a shower. In those cases, I sometimes suggest she choose a shady spot or even point out a shady spot if I see one. Having settled on where she will start doesn’t mean that is what she does because her memory doesn’t permit her to remember. She seems to gravitate mostly to the two flower beds along the driveway or the flower beds in the front of the house.

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Strange Behavior

Kate came in from outside a few minutes ago. She stopped about 12-15 feet in front of me with a puzzled look on her face and said, “Something’s going on.” Then she didn’t say anything. I stood up from the sofa and walked over to her. I tried to get her to explain. She struggled to find words. I asked if it involved somebody else. She didn’t answer. I asked if it involved her. (Something she said made me think that she was worried about herself or something about herself.) She said yes. I asked if she was afraid. She said yes. Then she said that maybe she just imagined it. I couldn’t get anything more. She was quite hot from having been outside. I asked if she wanted to cool off. She said she did and wanted to go get something to eat. We had just eaten about an hour earlier; so I knew she probably was not hungry. I also know from past experience that she sometimes says she wants something to eat or drink and then promptly forgets it. It did turn out, however, that she wanted to get out of the house.

On several afternoons when she has wanted to “get out of the house,” I have mentioned going to Barnes & Noble. In each instance, she has said no and reacted as though it had been a silly suggestion. That has led me to take her back to Panera. It is often hot in the afternoon there; so I was looking for another place. Figuring that she simply didn’t remember that B&N has a cafe and tables where we could camp out the way we do at Panera, I brought her to B&N without telling her where I was going. She never raised a question even upon arrival. We just got out of the car and walked in with our cups and iPads and my laptop. I picked out a table, and she sat down. I got each of us an iced tea. We have been here over an hour, and she hasn’t gotten up from her seat. She is still working puzzles on the iPad. I will come back again. It gives us a good alternative to Panera.

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More Signs of Decline

It’s too early to be sure, but it appears to me that Kate is going through one of those sharp declines I have heard other people talk about. I just hope this does not signal something more drastic than what I have observed this week.

Tonight we had dinner at Naples, a local Italian at which we eat once a week. I order chicken Parmesan for Kate one week and lasagna the next. Tonight it was the Parmesan. Right after we got in the car, she said, “They make a good pizza.” We’ve only ordered a pizza there one other time, and that was the first or second time we ate there about two years ago.

Before coming back to our bedroom this evening, Kate called from the kitchen. She wanted to know how to turn off the kitchen light over the island. This is the primary switch we use all the time. When I showed her the switch, she said, “I thought it was there; just didn’t know which switch.” In fairness, there are at least 6 switches, but this is the first time I have ever known of her confusion.

As usual, I feel sad for her and anxious for myself. I know that she doesn’t show any signs of frustration, but I still feel sad to see her losing so much of her ability to do everyday things. I feel anxiety thinking about how I will adjust to the future. I know I will adapt, but I fear the future right now.