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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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Sad Moment

We’ve had a great time with Kevin over the past few days. We dropped him off at the airport a couple of hours ago. There were several highlights while he was here. One of those was the Knoxville Opera concert on Saturday night. Another was a trip to the zoo yesterday afternoon. We had gone to the zoo in March when Kevin was here with Taylor. Kate had loved it, and I had been looking for a good time to return. It was too hot during most of the summer. The weather cooled off when Kevin came, and I thought it would be worth a try again. It really worked. She was as fascinated with the animals as any child would have been. I will certainly think about another visit to the zoo this fall
After returning from the airport, Kate remained outside. She got a little warm in less than an hour and came inside. It wasn’t long before she came to the kitchen with her iPad and a look of boredom on her face. I said, “You’d like to go someplace.” She nodded. I got my iPad and two cups for drink. We headed for Panera.

As we entered the parking lot, I noticed that she was wearing one brown shoe and one black shoe. I didn’t say anything. Once we were seated, she looked down at her shoes and noticed they didn’t match. She said, “I have one brown and one black shoe.” I told her that would be all right. She looked bothered but didn’t say anything. I watched her for another moment, and she started to cry. I said, “I don’t want you to be bothered. It’s all right.” She pulled herself together, but it was clear to me that it was one of those moments when she realizes that she is changing. It is so sad to watch this. I feel much better when she doesn’t recognize the symptoms.

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Morning Confusion

A little earlier Kate was in the bed working on her iPad. I heard her express some frustration and say something about not being able to get this “thing” working. I asked if I could help. Then I walked over to her. She handed the iPad to me. I saw immediately that she was not in her jigsaw puzzle app but in photos instead. I got her back to her puzzles, and she said, “I can’t live without you.” I said, “You don’t have to; I will always be here for you.” I doubt that she can envision what the future holds, but moments like these are full of meaning for me.

Recently I have been struck by the fact that it seems like she has the most trouble with her iPad during the morning, especially while we are at Panera. At other times of the day, for example at night when you might expect her to be worn out, she is able to work on the iPad for long periods of time without needing my help. I wonder if it is just a morning grogginess that is the basis of the morning confusion.

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Two More Good Days

Yesterday Kevin arrived for his quarterly visit. We met one of his high school friends and her mother for dinner. Afterwards, we went to a concert sponsored by the Knoxville Opera. It featured music from Porgy and Bess and a number of arias from familiar operas as well as several well-known songs from movies or Broadway shows. The included pieces like “I loves you, Porgy,” “Summertime,” “Somewhere over the Rainbow,” “Nessun Dorma,” and “Old Man River.” The singers were outstanding, and Kate was very enthusiastic.

We got to bed late last night; so we got up a little later this morning. I did get up for my walk. When I returned, Kevin got up, and we talked until Kate was up and ready for Panera. That was close to 10:00 a.m. We had some conversation with friends at a nearby table. It turns out that one of them is the mother of a high school friend of Kevin’s

From Panera, we went to church. Before going into the sanctuary, we stood around and chatted with friends. Kevin chatted with our pastor. Kate leaned over to me and asked me the pastor’s name. I told her, and she said, “I knew that.” We walked into the sanctuary and took a seat in one of the pews down front. As we sat down, Kate said, “Now I know where we are.” I asked her where. She said, “First Pres.” The she chucked softly and said, “I saw it on the sign.” She meant the screen at the front of the church that was scrolling upcoming events. We also spoke after the service with some friends we had not seen in a while. When we said goodbye, Kate asked who they were.

We went to lunch and then came back home for about 20 minutes before leaving to see The Hunchback of Notre Dame at one of our local community theaters. There were several very good singers in the large cast. We came back home where Kate worked in the yard for a while. Kevin and I came inside and talked about choices for dinner. We finally decided to go to a local seafood restaurant near downtown. We had a good meal and came back to the house. I put on a CD of Chris Botti. Kevin read a TCU magazine and Kate worked on her iPad. I joined them for a while. It was a pleasant respite after another good day.

As Kate readied herself to go to the room, she asked if she should connect her iPad to the charger. When I got to the room, she was getting into bed with her clothes on. I asked if she would like me to get a night gown. She said she would. When I got back she had taken her slacks off and asked me if she should put them on her chair beside the bed. I told her that would be fine. She said, “I thought so; I just wanted to be sure.” She is increasingly asking what she should do. In fact, she did just that as we got home from the theater. As she loses touch with more things, she looks to me for guidance to make sure she is doing the right thing. These are always things she would never have asked me about in the past.

This is one visit during which Kevin is bound to see more of the changes that Kate is exhibiting. She seems more childlike and less sensitive to the fact that Kevin will interpret her actions as something related to her diagnosis.

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A Very Good Day

When I walked in the house yesterday afternoon, I found Kate and Mary seated in the family room. They were chatting though Kate had her iPad open to a puzzle she had been working on. I could see that they were getting along just fine. That made me happy.

The next step was to see that Kate got ready for dinner and the concert last night. It was then 4:45, and I had made 5:45 reservations at Casa Bella. From there I knew that we still had a long drive to the concert. Kate was in an especially good mood. When I told we would be leaving in 45 minutes, she got right up. She also asked me to get her something to wear while she showered. I did and put the clothes on her bed. She was ready in about 35 minutes. She had actually put on the clothes I had placed on the bed in her room. It wasn’t until later at the restaurant that I noticed that she was not wearing matching shoes, but they were both the same color.

Casa Bella is a restaurant we have frequented for over 40 years. We had our usual veal piccata. I had a glass of wine. We split an order of amoretto bread pudding. We almost always get the amoretto cheese cake, a longtime favorite of ours. Over the past year or two, I have noticed that she is forgetting that it is our favorite and occasionally order something else for a change.

Sitting there was just like old times. I could almost imagine that she didn’t have Alzheimer’s at all. If the evening had ended after dessert, I would have said it was a great day. As it was, the best was yet to come. The program was presented by Gentri, 3 tenors from Salt Lake City. They seem like a very wholesome trio. The theme for the evening was love. All of their songs carried out this theme. They sang a mixture of old and new music, some of which they had written themselves. The group was warmly received by the audience. What was important to me, however, was Kate’s reaction. She loved them. She was very enthusiastic. That is twice in a week that she has enjoyed a live performance, the earlier one was the play, An Act of God, that we saw in Asheville this past Sunday. Gentri closed with an encore of three songs from Les Misérables. It turned out to be a wonderful end to a very good day.

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Feelings/In-home Care

Today is Kate’s sixth with a sitter. I continue to be a bit anxious as the time approaches for each visit. The good news is that I also continue to discover that Kate is quite receptive to having a sitter. I am especially pleased because we have not yet been able to experience a permanent sitter. The one at home now, Mary, came for a 2 ½ hour visit when the second sitter didn’t show up. She has also been with us for one other 4-hour shift last Friday. I still don’t know who is coming on Monday. Nor am I sure that today’s sitter is assured for the remaining Wednesdays and Fridays. I do know that she is not currently available on Monday.

As in the past, I did not say anything to Kate about a sitter until minutes before her arrival. I just told her that I was going to the Y and that Mary would be here while I am gone. When Mary arrived, Kate gave her a warm smile and seemed just fine. They both went outside where Kate was going to work in the yard. That is where they were when I left.

After leaving the Y, I dropped by the grocery to get some breakfast items for our son who is arriving for his quarterly visit. Now I am at Panera where I have checked email and sent an email to Kate’s physician following up on a couple of things we talked about during her visit.

I made a reservation for dinner at Casa Bella at 5:45. Following that we are going to a concert by three tenors called Gentri (Gentleman Trio). That will conclude our day.

I find that the 4-hour time for a sitter goes quickly. Just going to the Y takes a full 2 hours. That doesn’t leave much more time for other things. Today I feel the need to get home a little early to make sure Kate does not have to rush in getting ready for dinner and the concert. I suspect she came in from outside a good while ago and has taken a shower; so I am hopeful she won’t have to be rushed.

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Doctor’s Visit/Medications

This morning at 9:30 a.m. Kate had her annual physical. This was the second visit with her new doctor. I was happy but not surprised that her weight was almost exactly the same this time as before. In fact, it may have been a pound or two less than last time.

The first part of the visit was with the social worker. This was also a person new to the practice. She had recently graduated from college but had interned with the practice her last semester. I was quite impressed with her. The interview reminded me of the one Kate had recently with the nurse engaged by our insurance company to determine her eligibility for in-home care. She had such a hard time on the questions related to math that she asked the social worker to move on, and she did. She had an especially difficult time subtracting 23 from 100. She finally guessed 97.

The visit with her doctor went well. He asked a lot of questions related to what she could and couldn’t do around the house, health care power of attorney, living wills, DNR instructions, whether at this stage she wanted to go through any treatment that might be required if a mammogram or colonoscopy identified a problem. He explained DNR, and Kate said at this point, she would want to be resuscitated. I would have said the same. We are to get back to him regarding mammograms and colonoscopies. I plan to tell him I don’t see a need to do any more.

Our decisions on the DNR as well as mammograms and colonoscopies represent new markers on her journey. I believe she has too much quality of life ahead of her to have a DNR. On the other hand, if she were diagnosed with cancer, I would not want her to have to undergo surgeries, chemo, or radiation

We also discussed the donepezil (Aricept) she is taking and whether or not we might want to discontinue it. He asked if we thought it had worked. I told him I wasn’t sure because I don’t know how she would have been without it. I also said that what I know is that the progression of her Alzheimer’s has been very gradual. He pointed out that there is some evidence that discontinuing is followed by a more significant deterioration. We are going to stick with it.

This discussion about the donepezil came about because one of its side effects is diarrhea. Kate has been taking 1 tablet of loperamide each night as well as 1 tablet on Sunday and Wednesday of each week. That seems to be the perfect balance to prevent diarrhea and avoid constipation.

I had completed an information sheet before the appointment. It included the kinds of things that she does or doesn’t do around the house like laundry, house cleaning, bathing herself, dressing herself, etc. It also asked about any in-home care. He asked me to explain. I told him that I had engaged Daybreak to provide someone to stay with Kate when I needed to be gone from the house. He wanted to know when that had started. I told him September 6. I was interested that Kate didn’t respond to this discussion in any way. I wonder if she understood or whether she just accepted without thinking it indicated a problem at all. I suspect she didn’t process it at all. There are times like that when she just tunes out and lets me take care of things.

We also talked about her salivation problem. He asked a lot of questions. We (I) described the symptoms as clearly as I could. I had already talked with him by phone yesterday afternoon. We decided then for him to make a referral to a gastroenterologist. We will hear soon about an appointment.

He probed for other problems. We just didn’t have any. Once again, I feel we have been fortunate.

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The Fourth Sitter

I am happy to report that Kate accepted the new sitter without any problems at all. As I reported in my previous post, she was sleeping well this morning. I let her sleep as long as I thought I could before waking her. Today I had a meeting at 11:30, and the sitter was scheduled to arrive at 11:00. I wanted to make sure that Kate got her muffin and a sandwich before I had to leave. I also felt I need just a few minutes to brief the new sitter.

Finally, I woke her up about 9:10. She was ready to go to Panera at 10:05. That made the schedule a little tight. I ordered her muffin for her to eat there and a sandwich and sliced apples to go. We arrived home about 7 minutes before 11:00. The sitter had arrived and parked on the street. We drove in the driveway, and she followed us to the back door. I greeted her and introduced her to Kate. The sitter handled the introduction beautifully. She greeted Kate warmly, and Kate did the same. We came inside and provided a bit of orientation.

I suggested that Kate show her around the house. I went back to our bedroom. They followed. I had told the sitter that Kate likes working jigsaw puzzles on her iPad. That led her to ask Kate is she ever worked on coloring books. The sitter said that she loves them. I was glad to hear that as I have suggested coloring books to Kate, but she has not been interested. I hope that this sitter will encourage her to try them. When I left they were getting along well. In fact, they were doing so well that I called the agency from the car to say we got off to a good start.

I returned home about 10 minutes before 4:00. The sitter was sitting in the family room. Kate was in the back. I assumed that she was resting. I asked the sitter, and she said she was. She said they had gotten along well. She told me that she had noticed that Kate is a wanderer, noting that she moved around to different places in the yard. She also said that Kate didn’t eat the sandwich I had gotten for her. I told her that was not unusual, that Kate never seemed to eat what I left for her.

That led to a brief discussion that bothered me. She said, “That’s the way they are. They don’t eat.” I went on to say that Kate usually eats but that she doesn’t eat what I leave at home. The sitter tried to explain to me that Alzheimer’s patients are like that. I stopped her and tried to tell she didn’t need to explain a lot to me. She also told me how alert Kate is. I told her I think she is in Stage 6. I told her that Kate’s memory is very poor. She then told me that Kate was able to take her around the house and identify the people in the pictures. I told her that Kate still has long-term memory but even that is short on details.

The bottom line of this discussion is that I thought she was too quick to make judgments about Kate and offering sweeping generalizations about people with dementia. Otherwise, I like her. I believe I will say something to her about this next time she is here because I think she could work out.

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Sleeping More and Another New Sitter

Kate is still sleeping this morning. That is two days in a row that she has slept this late. Her sleeping patterns are erratic at times. Two or three years ago (I can’t really recall how long), she was sleeping or resting more than she does now. For the most part, she has been on a fairly regular sleeping schedule in the past year or so. Before that, I can recall that she slept a long time at night and also rested a good bit during the day. I don’t know what prompted the change, but she started getting up earlier. For quite some time now, we have been getting to Panera between 9:30 and 10:30. On Sunday, we were there before 9:00. She doesn’t nap much at all any more.

Tomorrow morning, she has a routine doctor’s appointment at 9:00 a.m. I hope that is not too much of a challenge. I don’t typically schedule anything that early. That must have been the only available time.

Today we have another new sitter. The one who came last week, and who is supposed to be our permanent sitter on Wednesday and Friday, cannot be here. That means the fourth sitter in 3 weeks. I suspect this may not be a problem for Kate because she is unlikely to remember the previous one. It is more of a problem for me. Each time we have a new person I experience a little anxiety over how Kate will relate to her and the fact that I will have to leave so quickly after the new person arrives. So far everything has worked out well. This whole process of leaving her is still new to me. I know I will adjust to it. I think that will be easier when we start having the same person or people on a regular basis.

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Travel and Confusion

Kate and I returned home from Asheville this afternoon. Since our arrival around 2:15, she has been outside. That’s two hours. I believe this will be therapeutic for her. I was not surprised to discover that her confusion continued this morning. This is even easier to understand because she woke up in a somewhat dark room without knowing where she was. After we got beyond that, it was obvious that she was not in a cheerful mood. My morning cheerfulness and expressions of love and affection were not welcome. She wasn’t mean-spirited at all. She just wanted quiet.

When she was dressed, I took her to the lobby for breakfast. She didn’t show much interest in anything but picked up a pastry. I pointed in the direction of a table and said, “Let’s sit at that table over there.” She obviously missed that and didn’t follow me to the table. I looked around and saw that she had taken a seat at another table close to where we had been standing. I brought her over to the table where I had put her breakfast. She didn’t converse much which is not unusual at all, but she just didn’t look cheerful. After breakfast, we decided to return to Knoxville without having lunch in Asheville.

As we drove out of town, I tried to cheer her up. I said something about our having had a good time and how much we had enjoyed the hotel, the meals, and the play. She wasn’t very responsive. Once on the highway, I reached across the console and put my hand on her leg. She lifted my hand up and pushed it away.

About an hour into the trip, she was restless. I decided to take a lunch break. I didn’t want to take a long time; so I stopped at Wendy’s. I asked her if she would like a chicken sandwich or a hamburger. She said, “I don’t care. Just order for me.” We sat quietly through lunch and then continued home. Although she didn’t say much, she appeared to be in a better mood when we reached home. It is unusual for her to be in a depressed mood this long. I am eager to see how she feels when she comes in for dinner.