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Symptoms/Markers

I have continued to monitor Kate’s behavior with an effort to determine how much is related to her Alzheimer’s and how much, if any, is related to her having a specific illness. This decision is clearly made more difficult by her Alzheimer’s. She is unable to explain how she feels except to say that she feels tired. After receiving an email from her doctor Friday afternoon and watching her yesterday, I began to think it is an infection of some type. The fact that she acted like she was going to throw up and did actual spit up some of her pizza Friday night reinforced this thinking.

Yesterday morning I was encouraged when she first got up. She got dressed reasonably early and was ready to go to Panera by 9:00. We were there about an hour before she wanted to go home. I did notice that she didn’t finish her muffin, the first time that has ever happened. At home, she went back to bed, and I let her rest over an hour before if she would like to go to lunch. She did. We went to Bluefish for lunch. She was quiet on the way out and the way back. She said nothing while there except a comment or two to the server. When we got home from lunch, she went right back to bed. Similarly, when we got home from dinner, she got ready for bed. She woke up at midnight and had difficulty going back to sleep. I suspect this is a result of having slept so much over the previous 24-36 hours.

She has seemed unsure of herself when walking. She walks very slowly, significantly slower than usual. I thought she might feel unsteady because she was happy to grab my hand and she would reach for something to steady herself. When we got home from dinner last night, she balanced herself by keeping her hand on the car until she was close to the door to the house. I asked if she felt unsteady. She said no that she was just tired.

Yesterday morning I asked her if she wanted to see a movie in the afternoon, Victoria and Abdul. She did. I bought tickets online before we went to lunch. As we returned home from lunch, I asked again if she felt up to it. She said she did. When it was time to leave, I asked again if she wanted to go. Once again she confirmed her interest, and we went. During the first part of the movie, she looked at me with a smile on her face that suggested she was enjoying the movie. She wasn’‘t smiling when it ended. I asked specifically if she had enjoyed it. She nodded that she hadn’t. I didn’t pursue any discussion, and she didn’t want to talk.

This experience reinforces what I had already been thinking. Movies are becoming a thing of the past for us. I think this particular movie had a good shot at being one she would like. I now have a string of failed attempts at movies going back at least to the spring. I am not saying I won’t try again, but I will be increasingly careful in selecting one.

When we came home from the movie, she went back to bed. About an hour later, I asked if she wanted something to eat. She did. We went to one of our regular places. She did a respectable job of eating her dinner. I didn’t observe any notable differences in how much she ate.

At dinner, she reached across the table twice to take a drink my iced tea. I noticed that she hadn’t drunk any of her Dr. Pepper. The second time I asked her if the Dr. Pepper was bad. She said, “”Oh, I forgot.” While I don’t remember her doing exactly this same thing before, for a long time she has not noticed things that are right in front of her.

She got up early to go to the bathroom. I asked how she was feeling. She indicated her stomach felt strange but that she was not feeling any pain. I gave her some Tums to see if that might help. She went back to sleep.

She was ready for Panera and her muffin at 9:00. She was still walking slowly and didn’t look sure of herself. I asked how she felt. She said, “”Hungry.” We went to Panera and stayed an hour before she asked if we could go home. For the second day in a row, she had not finished her muffin. I asked about that, and she said she said she was full. That made me think again about her stomach.

She has been resting since we got home. I will soon check to see if she wants any lunch.

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Symptoms/Unusual Behavior/Markers

After the “panic” attacks night before last, Kate slept until 11:05 a.m. when I woke her up. I knew that the sitter was coming at 1:00 and that Kate would need something to eat before she came. It was clear that when she was up that she had not recovered from the night before. She seemed weak. I had planned to take her to Panera for lunch but hesitated because she didn’t seem up to it. I suggested bringing something home for her. She didn’t want that. She wanted to get out of the house.

We drove over to Panera. On the way over, it seemed clear to me that she wasn’t feeling well enough to be out. I told her I was going to take her home. Then I would bring something home. She agreed. I returned home with some soup. I was beginning to think that she had an upset stomach and wanted something that would not be too rough on her stomach. Kate didn’t want the soup.

I arrived home just before the sitter. I hadn’t told Kate the sitter was coming. I just said, “Mary is here.” Kate received her warmly although she was noticeably tired and or weak. She wanted to get out of the house. I suggested that all three of us go to Panera and that Kate ride with Mary and I would drive separately so that I could leave if it seemed appropriate. I got Kate a muffin. The three of us sat at a table for about 15 minutes. Then I came back to the house. It wasn’t long before Kate and Mary came back as well.

Kate was tired and went back to the bedroom and got into bed. I left to run some errands and meet a friend for coffee. When I returned, Mary said that Kate was resting but that she had been outside twice.

After Mary left, Kate wanted to go back to Panera for a while. We stayed there about 45 minutes before she wanted to leave. I asked if she wanted to eat. She did. We normally go out for pizza on Friday night, but I was uneasy about her eating pizza if her stomach was upset. She said she was all right and would like the pizza. We got the pizza. She did fine as far as eating goes, but she continued to look weak and said she was tired.

After getting home, she got right into bed. This would have been before 7:00. She got up around 8:00 and asked, “What now?” I told her it was beginning to get closer to bedtime and that it would good to get her night clothes on. She said okay. I got her a gown. As she was undressing, she raced to the bathroom and spit up in the sink. It appeared that she was going to throw up, but not much came up. When she left the bathroom, she got into bed and is still there. She did get up to go to the bathroom around 6:00 this morning but went back to bed.

I heard from the doctor who said she might have an infection. Yesterday I got her some Tums Smoothies and gave her a couple after she had spit up. Since she had no other occurrences during the night, they may have helped
I intend to let her sleep as long as she wants this morning. When she wakes up I am hoping she feels better.

This whole set of events is something very different from most of the things I have observed over the course of her Alzheimer’s. Yesterday I was wondering if this could be a sudden shift downward in her condition. Right now I am guessing that she really did have something physical that has affected her stomach and that interacted with her mental state which doesn’t permit her to respond in a normal way. She is confused and just knows she doesn’t feel right.

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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.