We have had a long string of good days over the past three weeks. We were bound to experience a change. Today is the day. I didn’t notice anything different before making our morning trip to Panera. In the car on the way over, she didn’t want me to talk. I complied. Before getting out of the car, I asked her if she wanted to know if she wanted to take her book of crossword puzzles inside. She hesitated a moment and then said she didn’t. While we were there, she was frustrated as with her jigsaw puzzles. Over the past few weeks she has had even more problems than usual but had learned to simply hand over the iPad to me to get her back where she wanted to be. Today, she was just disgusted. At one point, she gave me a look that meant she was ready to go. We got in the car to go home. As we approached the house, she asked if there weren’t somewhere else we could go. I asked if she would like to go to Barnes & Noble. She say, “Anywhere. I don’t care.” I had wanted to go by Walgreens and select some photos for printing and suggested we go together. She accepted. That really didn’t do the trick either. It did, however, pass a few minutes during which she didn’t seem frustrated or depressed.
I decided to go for an early lunch at a restaurant where we usually eat lunch on Saturday. This Saturday we have another engagement; so I thought that might be a good option for us today. The primary reason for my selection was that it is almost 25 minutes to the restaurant. I was hoping that the drive would give her time to regroup. I took my iPad in with us and showed her pictures of our recent trip to Texas. She seemed to enjoy that.
Upon our return home, she asked if she could pull leaves. I told her that would be fine. She did that for about thirty minutes and then came inside. In a few minutes, she came into the kitchen where I was working on my computer. She had her iPad under her arm. She was obviously ready to get out of the house. We got in the car and went to Barnes & Nobel and spent about 45 minutes there before leaving for our regular hair appointments. She is finishing up right now as I am writing this post. Tonight is opera night at Casa Bella. I hope that will give her a lift.
Earlier I neglected to report that as we were pulling out of the garage to go to lunch, Kate said, “I’m so frustrated with myself.” This was after several things she had done as she was getting ready to leave. I said, “I know you are frustrated.” Then I asked her if she would like to talk about it. She said no as she always does. She just doesn’t like to talk about her Alzheimer’s.
A few minutes ago as she was coming into the bedroom for the night, she said she wanted to thank me. She said she was falling apart and appreciated my taking care of her. I said, “I know you’re frustrated. I want to help you.” She said, “That means a lot, that you want to do it, and I know you do.” When she says something like this, it makes me want to do all the more to help her. On the other hand, I can find it frustrating myself when she won’t let me help. For example, I wanted to give her a Benadryl this morning. She asked if it would make her sleepy. I told her it would. She didn’t want to take it. This afternoon she has been having more trouble with her nose. I told her I was going to give her a Benadryl before she went to bed and that I wish that I had gotten her to take one earlier. She agreed, but earlier she didn’t want to take it. It is hard to know what to do, when to push and when to back away.
Last night as we were getting ready to leave for a reception sponsored by the symphony, Kate had a minor panic attack. I don’t recall exactly what upset her, but she finally said, “My life is just falling apart.” This was one of the few times she has expressed such a clear recognition that she is losing her ability to do things. This morning she expressed a similar sentiment. This occurred after I had asked her if she had seen the power cord for my phone. I also noticed that she had put dirty dishes in the dishwasher with clean dishes.
Perhaps this is what prompted me to write Ken and Virginia to let them know I was nearing a decision to inform two of her cousins about her illness. I asked them if they knew any reason that I shouldn’t do so. They both wrote back that I should do what I feel is right. With that in mind, I will notify them either this week or next. I suspect that means next week because this week is pretty busy.
Ken and I also exchanged a couple of emails today. I had asked him how he was doing. I opened the door to our having a phone conversation. He wrote back and indicated that would be best. We will work that out next week. This is something that I would like to do on a regular basis. I think it would be good for both of us.
I am continuing to consider reaching out to others who are going through the same thing. Yesterday I was reminded of a friend who is also in our shoes. I hadn’t thought of contacting him since he and his wife retired to Myrtle Beach, but I will do so soon.
I believe this need to contact other people is a sign that Kate’s continuing decline is related to a corresponding need for stress relief for me.
Fortunately for me, I am flexible. I think this is a good thing for Kate as well. This afternoon we had an experience that illustrates this. We planned to go to a movie at 4:00. Just before we left the cabin at 3:55, she asked if she would be able to get something to drink. I told her she couldn’t do that and get to the movie. She seemed to accept that, and we walked to the theater. When we walked in, she said, “I don’t see a place to get anything to drink.” I told her they didn’t serve drinks in the theater. She wanted something to drink and to eat. We left the theater to find a place. I knew as we did this that we would not see the movie, but that was not a big deal. I had originally selected the movie because I thought she might be tired of being in the room all afternoon. We ended up in the Lido which is the casual dining option that is open virtually all day. It turned out to be a good place. She got a Coke and a slice of pizza. One of the on-duty staff made some origami roses for her. She was pleased (although I don’t see them now. She may have forgotten them.) After finishing her pizza and Coke, she wanted to get her iPad from the cabin and find a place to sit and work jigsaw puzzles. We went back to the room and got our iPads. Then we went to the Observation Deck lounge. It was crowded because it was now the cocktail hour, but we found two seats. It was warm, and Kate was uncomfortable. I suggested we locate another place. We came downstairs to the third level (we had been on the tenth) where we are right now. The early dinner group is walking by us. Since Kate had pizza about an hour ago, I know we need to wait a little before we go to eat. I am getting hungry though; so I don’t think we will hold out later than another 30 minutes.
Although I am flexible and can deal with these kinds of changes in plans, I don’t mean to say that it doesn’t give me a jolt each time I need to shift gears. My left-brain tendency is to decide on something and to see it through. Changing really is a frustration. If I didn’t know she has Alzheimer’s, it would drive me crazy. Knowing makes all the difference in the world, but it doesn’t remove the moment of frustration that occurs when we have been heading in one direction and have to change.
Kate and I are in our bedroom right now. She had been working on her computer this afternoon and suffered some frustration as she tried to do some things. I know that one of them was trying to find her mother’s recipe for cheese grits. It appeared that she was blaming herself because she could not find it on the computer. I did a search and could not bring it up. To me that is an indication that it is not on the computer. It’s not Kate’s fault.
After this she ran into something else but didn’t want to talk about it. I asked if I could help in some way. She said no. She looked as though she were miserable which makes me want to do something to help. I offered several options. She wasn’t interested in anything. I suggested that we go back to the bedroom when she said she was sleepy. I told her we could turn on some episodes of Dick van Dyke. She agreed unenthusiastically to accept that offer. When I turned on the TV, CNN was reporting on a new shooting in San Bernardino, CA, in which 14 people were killed and another 14 injured. She wanted to leave the TV on the news which I did. It continues now, and Kate is under the covers resting with her eyes closed though not asleep (I assume).
This morning Kate and I were awake at 7:15. I brought her some orange juice and a breakfast bar around 7:45 and told her the family was just now coming to the kitchen. She thought I was asking her to come on downstairs and asked, “I’ll be able to see them later, won’t I?” I told her yes. She remained in bed using her laptop. She remained there until close to 11:00. She came downstairs and started editing photos on her laptop. Sometime around noon, she went back upstairs. I just checked in on her and found that she was resting in bed.
It is interesting how much she enjoys being with everyone (I think), but how often she removes herself to rest. I am not sure whether this occurs because she is simply tired or because she isn’t interacting with everyone and gets bored or feels left out. For the most part, each person has been on his/her own today. Jesse has been busy the entire day preparing food for our Thanksgiving dinner. I have remained in the kitchen most of that time working on my iPad and talking with Jesse and Greg. Ron has been playing games on the TV (football, basketball and hockey). Randy has been upstairs almost the entire morning. He is downstairs right now working on his computer. It could be that Kate has simply gotten tired of working on photos. It may be taxing on her. It could also be that she is having a very low-key experience with the family since no one is giving her any special attention. Of course, she hasn’t taken any time in the kitchen except when Jesse gave her a slice of banana nut bread and some fresh blueberries and raspberries.
Yesterday she was hurt when we were with the Robinsons in Nashville. We had had a good visit. Near the time to leave, she broke into the conversation and said, “Wait a minute, the three of you have done all the talking. Let me say something.” When we got in the car, she seemed depressed. We didn’t chat about it, but she offered several comments. She mentioned something that I have noticed before but did not notice yesterday. She said Angie and Tom looked at me and addressed all or most of their comments to me. She also said that everybody (even Ellen, her best friend) does this. She said, “I am not dumb.” meaning that she has things to say and contribute to our discussions as much as everyone else. I apologized to her because I had not been sensitive to that and that I would try to direct more conversation her way. I really do believe that my own personality is such that I quickly engage in conversation with other people and don’t think as much about whether or not she is being included. This is something I need to work on. I might think that the behavior of the Robinsons is a result of their knowing that Kate has Alzheimer’s, but the same pattern appears to be true with other people who have no idea of her illness. It may have something to do with the kinds of comments that she makes. Often they don’t tie into anything that we are discussing at the moment. It could also be that there is so little that she can offer to many of our conversations that she is more retiring and gets ignored. At any rate, it is a problem and one that I hope I can offset but fear that this will become a more common pattern.
On the whole I think I do pretty well adapting to the changes required by Kate’s Alzheimer’s, but one thing I have not been able to fully let go of is happening right now. We had been out to lunch with our church friends, Angela and Marvin Green. We came back to our house after eating and had a long chat. We always have a good time with them although we don’t get together that often.
After they left, Kate stayed outside to work in the yard. As usual, she didn’t change clothes. I am prone to protect my clothes and wouldn’t work outside in anything I valued. She doesn’t feel the same way. I don’t believe she was ever as sensitive (obsessive compulsive) about this as I am, but clearly the Alzheimer’s has meant she has little or no concern about soiling or damaging good clothes. On a few occasions (not many) I have said something to her about working in her good clothes. It never works; so I am holding off. She is seated on the ground digging in the flower beds. I don;t know what condition her slacks will be in, but I know that her work clothes look pretty soiled when she comes in. This is a little thing I know, but I feel the need to report it lest a reader think that I am more understanding than I really am.
First a little background. As long as 10 years ago, a neighbor down the street sent a message to everyone on our street asking us not to put our yard trash on the street until near the time of our weekly pick up on Thursday. Kate was initially offended by it but has tried to abide by the neighbor’s plea. In the past couple of years she has been especially rigid about it, not wanting to put the trash out until Thursday morning. I have never cared for this because it meant that we (either Kate or I) had to be the ones to get it out because the woman who cuts the grass and cleans up the flower beds wouldn’t be here early enough on Thursday and often comes on Tuesday or Wednesday, sometimes Friday. She came on Thursday morning this time after the trash men had already picked up. The leaves are beginning to fall, and the trash piled on the street was at least 12 feet long.
This is not a good week for this to occur because today is Halloween. We have a lot of trick-or-treaters. Kate wanted all the trash moved. I originally suggested that we leave it, but she was insistent. It is also something she didn’t forget. I never volunteered to move it, but she got the impression that I had said I would. After lunch today, she said she would meet me outside which I took to mean that we would work together to move the trash to the back of the house. When we got out there, she began raking up some trash that was in the yard. I started to load up the trash in an old garbage cart that I could roll to the back of the house. It turned out that she wanted me to put it in the flower bed on the side of the house. This is one of the areas that I have had our yard person cleaning up. To be more specific some of this trash has come out of the flower beds, and I didn’t like the idea of putting it back just after she had removed it two days ago. She said she would step aside, and I could put it wherever I wanted which I did.
She started picking leaves off the shrubs she does almost daily. As I was taking one load of trash to the back of the house I noticed that she had left some trash from the front flower bed on the sidewalk, a place she usually put trash. I suggested she could clean that up while I was moving the trash from the street. She seemed quite willing to do it. I saw her with a broom, and she was sweeping the front porch. It had looked pretty clean to me, but I thought she just wanted to start there and then move along the walkway to the driveway. Later I walked by and saw the trash was still on the walkway. It turns out that she had finished her work and gone in to take shower. I ended up cleaning up that trash too. At the time I felt like saying something to her but decided against it. I know that she didn’t realize what she had done (or not done). I simply didnt think there was anything to gain by saying something other than the personal satisfaction of telling her.
I relay this story to make sure that the reader knows that I do experience some frustration even when I accept what she has done or not done. It is also another example of how this disease can change normal interaction. There are many things like this that occur, but I try not to say anything at all.
Something else that bothered me. I changed clothes before going out to clean up the trash. She is not sensitive to this at all. She was dressed very nicely when we went to lunch. I commented on how nice she looked. She wore a beautiful garnet turtleneck sweater and a nice pair of black slacks. When she went to clean up, she wore those same clothes. At one point I saw her sitting on the edge of a flower bed where she was pulling weeds or something like that. She has so few clothes that are not soiled in any way that I hate to see her messing up the ones that are in good shape.
Last night I bit the bullet and booked a 13-day cruise from Rome to Amsterdam. I had requested information on the cruise on their website on Monday and received an email that night. I sent an email asking about cancellation penalties if we should not be able to make the trip. I told him about Kate’s Alzheimer’s. His email response indicated that we could book for $600 and cancel up to Feb. 23, 2016. At that time we could purchase insurance that would cover the balance of the period before and during the trip. I called to talk with him after dinner last night. I discovered that the rooms were going rather quickly as this would be the christening cruise for one of their new ships. After asking questions and checking room availability. I went ahead with the booking figuring that I should have a much better idea of whether or not we can do it by Feb. 23.
Tomorrow we leave for Niagara-on-the-Lake and Chautauqua. We return on Saturday night, August 8. Things continue to go well though Kate’s short-term memory still brings surprises and requires careful coordination. For example, last Friday night after seeing Dreamgirls at the Bijou, Ellen told us she was having abdominal pain and that it was similar to what she had felt when she had had a kidney stone about 7 years ago. We ended up in the emergency room at Providence until almost 3:00 a.m. We got to bed at 3:30 and I was up at 7:30. Kate slept a little later. At lunch I asked her if she felt sleepy. She looked puzzled and asked why I would ask that. I explained that I thought maybe she hadn’t slept well. She said she had slept fine. It was clear that she had forgotten that we had been at the hospital with Ellen most of the night.
Yesterday we had a bump in the road. I had hired someone to power wash our patio, driveway, and brick wall. We had been to Lowe’s yesterday morning to buy some plants, and Kate had taken a large plastic container that I use in the trunk of the car when we bring home plants. This helps protect the trunk of the car. At any rate she had left it outside. It had rained and had created a mess in the container. She took it around back and dumped it out on the freshly clean drive right behind the garage. I reacted immediately and said something like “I just paid the guy the clean this.” That was all it took. She said, “I can never do anything right.” I have learned it is better for me not to say anything after a misstep like that. She went on to talk about how picky I am. Fortunately she calmed down, and it was all forgotten.
Then tonight we had another hiccup when I asked her if she had packed the new clothes she had bought the other day. She looked puzzled. I know that she has no idea where they are. She was frustrated and asked me to help her when we got back home from dinner. I told her I loved her, that I wanted to help her so much, but she wouldn’t let me. At least two of the outfits she had been pleased with and believed would be ideal for Chautauqua. My problem is that she won’t let me help her put them up so I know where they are. I also try to take pictures of new clothes, but she put them up before I could take pictures. It is frustrating for me, and I know it must be even more so for her.
This morning we take the train to Interlaken. I am feeling more like myself this morning. Yesterday afternoon I was down. Though I am not a moody person, I do find that my mood can change depending on what is going on with Kate. I remember the same thing happening with my Dad. When he was having a bad day, it affected me.
As we were returning to the hotel yesterday afternoon, I suggested to Kate that she start packing her suitcase so that we wouldn’t be rushed this morning. She immediately reacted negatively to my suggestion and said, “Or tonight after dinner.” I then said, “But you never want to pack after dinner.” That was something I shouldn’t have said. It reflected a feeling that I was doing everything I could to make the trip go smoothly for her, and she wasn’t willing to do this one thing to help me help her. Even in the midst of this, I know clearly that the Alzheimer’s prevents her from looking at things logically. Nevertheless, I find it frustrating.