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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.

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Coordinating Can Be Challenging

Last night I told Kate that our Y breakfast was today.  She likes to attend, but she also likes to sleep in the morning. The past 2-3 months we have not made it because she didn’t want to get up. Thus, last night I asked her if she really wanted me to get her up. She said she did.

At 7:00, I woke her up and asked if she still wanted to go to breakfast. She groaned but said she did. I turned on the TV and started changing from my walking clothes to my regular clothes for the day. She got up and went back to her room. When I finished dressing, I went to the kitchen where she was getting some apple juice and yogurt. I reminded her of the breakfast. She had forgotten. By this time it was 7:20. I told her we would leave in about 20 minutes. As she headed toward our bedroom with her yogurt and apple juice, she said, “I’m going to eat my breakfast.” I reminded her that we were going to the Y breakfast. She had forgotten again. I reminded her that we were leaving in 20 minutes. At 7:45, I went to our bedroom to see if she were ready. She was sound asleep in bed. I went back to the kitchen to fix my breakfast. I suspect we won’t go back to the monthly breakfast together. I believe I will go back at a later time when I have care for Kate during the morning hours

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Travel, Confusion, and Learning How to Address It

Kate came into the living area of the suite to which we had been upgraded. She looked very groggy and confused. I asked her if I could help her. She gave me a confused look. Then I took a more direct approach that is not like me. I said, “Let me tell you where we are. We are at the Haywood Park Hotel in Asheville, North Carolina.” She said, “Oh, yeah.” I went on to tell her that we were going back home this morning and that we had no time schedule to meet. That seemed to satisfy her. Then she asked, “Can I rest a little?” I told her that would be fine. Then she said, “If I can find where to go.” I said, “Let me show you.” Then I walked her to the bedroom.

I find that I am always learning and changing the way I approach things with Kate. My normal style is not to be abrupt or too directive. I know she does not like to be controlled. There are times like this one, however, when she is disoriented or in need of direction. In this kind of situation, I have learned enough to know that she won’t realize where she is when she wakes up when we are traveling. I can make things easier for her by simply telling her and not acting as though she does know.

Three weeks from tomorrow we leave for Texas where we will spend a week visiting family and friends. I will need to remember how important it is to provide regular information of where we are, what we are doing, etc. in order to maintain her comfort level in strange surroundings. This is more difficult than it sounds. It is amazing how easy it is to fall back on the way I have related to her over the course of our marriage. In so many respects, she continues to appear quite normal, even to me. That makes me want to respond to her in the way I would have before her diagnosis.

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Travel and Confusion

Today Kate and I drove to Asheville where we have had a very nice day. She has been in a particularly good mood. In addition, she has enjoyed everything we have done today. That includes an especially nice lunch at The Blackbird. We asked for the server who had taken care of us on our previous two visits. She remembered us and once again, remembered our drink orders. Lunch was followed by a play that she liked, An Act of God. I thought the play was well performed, but did not think the play itself was a good one. It isn’t one I would recommend. One of her qualities that has been brought out by Alzheimer’s is to be especially impressed with performers. She almost always overstates their talent. I believe that is what impressed her today. I don’t think she could follow most of what was happening in the play itself. The important thing to me is that she really enjoyed herself. When the play was over, she said, “Wow!”
She has likes the hotel in which we are staying. We have stayed here a number of times. It’s a nice place and in a good location downtown. The woman working the front desk has been with the hotel since they opened and has been at the front desk each time we have arrived. This time she arranged an upgrade to a much larger suite than we usually have. It is certainly something we don’t need, but it is nice that she did this. It keeps us coming back.

In the midst of her enjoyment, Kate has been confused on where we are. As we got to the theater this afternoon, she said something that I can’t remember, but it implied that she thought it was in Knoxville. A little later when we reached the hotel, she asked, “Now tell me where we are.” I told her we were in Asheville. A few minutes later, she asked the name of the hotel. I told her. The second I told her Asheville and the hotel name she said, “Oh, I knew that.” I am sure she did. She just couldn’t call it.

One other moment of confusion occurred just before we went to dinner. She had just brushed her teeth and came back into the bedroom with the toothpaste and two packets of towelettes in her hand as though she were ready to pack up for home.

Right after returning from dinner, she came into the bedroom after brushing her teeth. This time she wasn’t carrying anything. She looked puzzled. I asked if she were looking for her night gown. She didn’t answer. Then she saw that the housekeeper had put a robe on each bed. She said, “Oh, here it is.” Then I got her night gown for her. She has now settled into bed with her iPad. She is very contented, and so am I. She just turned out her light. I think I will get ready to take my shower.

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Permission and Sign Language

Twice today, once coming home from Panera this morning and one after returning home from the movie, Kate has asked my permission to work in the yard, to wear a cap, and to use her clippers. As always, I said yes to each of these. Both times, she looked at me like I never let her do these things. It is intriguing to me that she does this without my ever denying her.

The sign language intrigues me. When she asks to work outside, she points to herself and then to outside. When she asks about the clippers, moves her index and middle fingers like scissors. I understand these without problems. There are other time when I can’t understand what she means. That frustrates her. That tickles me since I think I should be the one who is frustrated.