As Kate and I were returning from lunch, she asked if she could pull a few leaves when we got home. I told her that would be fine. A few minutes later, she asked, “Now what will you allow me to do?” I said, “You sound like I’m your boss.” Then I said, “You can do anything you want to do.” As we drove into the driveway, she asked, “Can I work in the front (yard)?” I told her again that would be fine. She continues to ask permission rather frequently. She also frequently acts surprised when I say yes as though I never let her. The irony is that I still have never told her she couldn’t.
Pleasant New Years Eve
About an hour ago, Kate and I returned from lunch at Bluefish. For the past several months we have had our Saturday lunch there. It is several cuts above our routine places. Beyond the quality of the food (Kate always gets scallops with sautéed vegetables and sweet potato fries, and I get various things. I had my favorite today, Andouille sausage and shrimp stew and a special house salad that I love.), I find that it makes for a relaxing ride to and from the restaurant. It is a full 25 minutes each way. That seemed especially appropriate today. Kate got to bed a little later last night (shortly after 9:00). Consequently, she slept later than usual. She wasn’t ready to go to Panera until 10:45. I had to help her find some clothes. She was quite groggy.
We stayed at Panera for an hour before she was ready to go. (Over the past few weeks she has not wanted to continue in one place for long. The exception would be that she can stay outside a good while when the weather cooperates.) I asked if she were ready for lunch, and she nodded. Then we headed to Bluefish.
She was quiet at the restaurant, something that is not unusual. After the meal, however, we chatted a bit in a real conversation which is rare. The funny thing is that the conversation began with a strange comment from Kate. Out of the blue she said, “Now, let’s see what else you can blame on Dr. Pepper.” I said, “You think I blame Dr. Pepper for things?” She gave me a look that meant, “Are you kidding?” Then she went on to say that I don’t blame anything else; it’s always Dr. Pepper. I didn’t push her to explain as I knew that she was simply imagining that I discourage her from drinking her favorite beverage. I suspect this is something that has been on her mind for a while. The only other thing I had noticed is that occasionally she asks, “Is it all right if I have a Dr. Pepper?” I always say yes. From this point, however, we started to talk about how different we are but how well things have worked out for us. We talked about the fact that we had been able to overlook the things on which we differ because of the important things we share.
We also had a nice conversation with our server. I had asked her how she compared the quality of Bluefish with other restaurants around town. She gave me a good answer. I mean by that she was able to tell me how it stacks up in her mind compared to a number of other restaurants with which we are familiar. It confirmed what I hoped; she thinks it is a cut above most restaurants but not quite as good as several others. Kate and I believe it is unusually good. What had started as a slow day had now turned into one of those special moments that makes a day successful. We left the restaurant feeling good. I think that experience will set the tone for the balance of the day. I feel especially confident because she stayed outside pruning for an hour after we returned from lunch. That is one of the most therapeutic things she does.
I neglected to say something else that is becoming a pattern Kate is establishing. She came into the family room where I am listening to music and have the TV on to one of the many bowl games. When she sat down on the sofa with her iPad, she also had her charging cable in her hand. I think I had mentioned previously that she sometimes disconnects it to take when we are going out, usually to Panera. In some cases, like now, we aren’t going anywhere. When she sat down, she put the cable on the coffee table and said, “I want to take this with us.” I said, “You’re prepared.”
Something else that is becoming commonplace is closing doors to the bedrooms and bathrooms before we leave the house. I’ve never said a word to her about doing this, but I suspect that is something else that she believes I have told her she should do. This is just another reminder of the many things that a person with Alzheimer’s will do apart from the more typical memory issues.
Communicating Indirectly
I have often noted that Kate does not like to talk about her Alzheimer’s, but that she regularly makes indirect references to it. Here is an example from today. Last Friday her friend, Camille, invited her to lunch at noon today. I had suggested this time as I have Rotary at 12:30 on Monday. I arrived home from the office at 11:00 to make sure Kate would be ready when Camille arrived. I discovered that Kate had already come in from outside and had taken her shower before getting ready. I told her I would get her debit card for her and that I was putting a note indicating to tip $4.00 no matter what the check would be. She took the card and note which were in a small purse.” Knowing she might put it down in her room and not be able to find it later, I suggested she give it to me. She would have no part of that. Then I suggested that we put it in a place that both of us would know. She liked that. I told her I would put it on the corner of the island in the kitchen where I keep her daily calendar. She agreed to that.
Ten to fifteen minutes later she walked into the family room and said, “On the island in the kitchen.” I said, “You got it. Two thumbs up.” Then she said, “Four thumbs up” indicating that she was giving herself a pat on the back. No conversation about Alzheimer’s, just a subtle statement of the situation indicating her own recognition of her own memory problem.
Meltdown and Recovery
This morning we leave Niagara-on-the-Lake for Chautauqua after a very pleasant 2-day stay. Everything had gone beautifully until last evening as we were preparing to go to dinner and a play. Here’s the story.
First, we had a big breakfast at our B&B finishing close to 10:00. When we came back to the room, Kate got back in the bed to rest a little while. She got up for us to meet Ellen Seacrest and her sister-in-law, Ann, for lunch at 12:15. That meant we ate lunch before our stomachs were ready for more food. After lunch, we. Went to a play at 2:00. When we got out after 4:00, we got ice cream. Then we came back to the room for Kate to rest a while before our dinner reservations at 6:30. She was stuffed and didn’t feel like eating, but we needed to eat before the play at 8:00.
As she was trying to find something to wear, I got up from my chair and my phone fell on the wooden floor. The noise frightened her, and she said something like, “Don’t do that.” I said, “I didn’t mean to do it.” Then she immediately broke down into tears and heavy breathing as if she were having what I call a panic attack. She told me she knew I would never scare her on purpose. She couldn’t stop crying and continued to breathe heavily. I tried to calm her down by putting my arms around her and holding her, but that didn’t seem to help. She went into the bathroom to put on her lipstick. I followed her and rubbed her back and started playing some soft music on my phone. As she continued to cry, she said, “my mind is going. The medicine is not working.” I held her tightly. She lay back down in to calm herself. She must have cried a total of 15 minutes. This was the biggest breakdown she has had.
For me this was a sign that she hasn’t deteriorated so much that she is unaware of her decline. I was moved by the anguish she expressed and couldn’t help thinking about how much of this she carries with her all the time without my being aware. If I can’t fully grasp the extent of her suffering, how could anyone else do so?
After she had calmed down and we prepared to leave, she commented that she was all right now, that she has just broken down. She went on to say that she thought that she normally is able to control herself better. Moments like this reinforce my efforts to avoid making her feel “not good” to quote a friend of mine. This is his advice for everyone in all situations. That is a special problem to avoid with Kate and, I believe, with other Alzheimer’s patients.
Problems with Bank Cards
For months I have been keeping Kate’s debit card and her driver’s license. That has led to a couple of problems lately when she went out to lunch with Ellen and another friend and didn’t have money to pay. They paid and I paid them back.
To avoid this situation, I just put Kate’s cards on her dresser so that she would have money when she goes to lunch tomorrow with Ellen. She was a little irritated and asked if we couldn’t just keep the cards on the table next to her side of the bed. I said that would be all right if she would make sure they stayed there. She looked at me seriously and said, “why wouldn’t I?” I told her we would talk about it later. She really could not imagine why? This is something that concerns me because it suggests she is less cognizant of her condition than she has been in the past.
Going Back Home
As we were preparing to leave the Residence Inn in Lubbock, Kate made a point of telling me she was taking her computer on board the plane to Knoxville. I told her she seemed quite insistent on that. She said, “I thought you would tell me not to take the computer on board; to take the iPad.” This is an illustration of the frustration she is having with me and the irrational thinking that is becoming more common. Of course, she was going to carry her computer on board. That is what she always does.
Sticking to a time schedule is a consistent problem. For example, at 8:30 I told her that breakfast would end at 9:30. I said that she did not have to rush, but I wanted to let her know how much time she had. At 8:50, I told her she had 30 minutes to get ready. She was still in bed. She was still getting ready (slowly) at 9:17 when I told her I was worried that she was going to miss breakfast. We left and made it. Without my pushing, she would never have made it.
So how are we feeling today?
Today is the 52nd anniversary of our first date and the 51st anniversary of our engagement. We normally do more reflecting on those occasions than we are today. Perhaps I should say that we have acknowledged the occasions; however, our mood is somber rather than joyous. Kate continues to be down as a result of her accident. She said she was feeling better this morning. Then we received a call from the State Farm adjuster who asked questions about the accident. I still hadn’t been able to learn who has(d) our car.
While at lunch I got a call from the officer who was at the scene of the accident. She gave me the correct name, address, and phone number of the garage that was holding the car. I have now arranged for it to be towed to the same body shop that has previously done work for us. All this activity has brought back Kate’s feelings of inadequacy.
On top of the accident, Kate has left her purse with her cell phone at 2 different restaurants over the weekend. The first was on Saturday. We had lunch near my office. We realized sometime later than she did not have her cell phone but couldn’t figure out where it might be. At almost 3:00 am Sunday morning, I got a text message saying it had been found at deli where we had had lunch. After church on Sunday we went by to pick it up.
That afternoon we attended a Christmas concert given by the Nashville Symphony. We went with a group of Kate’s PEO sisters and some spouses. After the concert we went to dinner.
On Monday we realized that Kate’s phone was missing. I called it a number of times while I looked in the car, in her closet, in our bedroom as well as other bedrooms in the house. We simply didn’t know where it was until I received a call yesterday (Wednesday) afternoon. It was the manager of the restaurant where we had dinner saying she had the purse and phone. I told her we would come out today to get it. That took us to there for lunch, and we recovered the missing items. I have needed to watch for Kate’s purse for a long time, but it just isn’t in my sphere of concern. I need to change and am committed to doing so.
Now the real issue – how am I doing? I would say that I am anxious. Seeing the decline in Kate saddens me. It makes me wonder how long we have before it is clear to everyone that she has Alzheimer’s. Already it has seriously affected our conversations. She is unable to express much interest, only toleration, for things I have to say. Often, it is obvious that she doesn’t want to go on with a conversation. We connect best when we reminisce about the experiences we have over our years together. We both enjoyed reflecting on the people we have known, the places we have been, etc. It is difficult to engage in much other conversation. I am beginning to accept longer periods of silence which is something that a person with my personality has trouble with.
Follow Up to Mini-Crisis
When I picked up Kate, she seemed to be a good humor. The tension seemed to have passed. She said a few things about the good candidates they had interviewed and I made some brief responses, but neither of us tried to go back to discuss the events preceding her meeting.
We went out for pizza for lunch. After we were seated at a 2-seat table, she looked at me and said, “I wish I could sit next to you.” I reached to hold her hand across the table and didn’t say anything. I could tell she was still feeling the hurt and frustration over the events of the morning. This is especially painful for me. I hate for her to suffer, and I hate it when I am the immediate cause of her pain as I was this morning. Of course, I recognize that it is really her AD that is the source of the problem.
The light is really dawning on me that I need to work with her to enable her to do as much as she can while I see that everything that needs to be covered is covered. She won’t be able to get things done without my help. I know it is good for her to continue to do as much as possible for as long as possible.
I’m not sure why but when I hit things like this, I begin to wonder how soon I should tell the children. What I fear is that if they know, the grandchildren will soon know. Then it is possible that they will say something to Kate that lets her know everyone in the family knows.
More Examples
Dad’s 100th birthday party is now less than 2 weeks away, and we are trying to put the finishing touches on the house, yard, and details. I have mentioned that Kate has worked incessantly trimming plants in the yard for months. She believes (correctly, I think) that pruning the shrubbery helps to let in light that ultimately leads to the shrub’s filling out. The problem I have seen from the beginning is that they looked good when she started, and I wanted to have everything looking good for the party. She has trimmed things back so much now that she is now going to spend money hiring someone to buy and plants new plants to fill in the bare spaces she has created. I have tried to diplomatically mention the need to stop pruning, but she has taken offense. I backed off and have let things go. If it’s bare, it’s bare. I’ll focus on other things.
Another issue is that we have been collecting gnats in the house. She does not fully rinse yogurt containers and other containers and plates and leaves them on the counter. Not wanting to hurt her, I told her the other night that I discovered a yogurt container that I had left in the house covered with gnats because it had not been rinsed well. I suggested that we would have to watch that if we wanted to control the gnats. It means nothing. She continues to leave items with food on them; so I am trying to control myself and just not say anything. While I can do this, it is quite frustrating.
Feelings of Being Unappreciated
Yesterday as I was leaving Mountain Valley, I had a brief conversation with the woman who owns the dress shop where Kate buys a lot of her clothes. Her husband is there on rehab and will be going home next week. She had mixed feelings about his coming home related to the responsibility of caring for him. She noted that he has so many needs and is always asking her to do things for him. I shared a similar feeling about Dad. I do so many individual things while I am with him that I wonder how he gets along when I am not there.
That led me to think about taking care of Kate after her colon surgery as well as her foot surgery. It seemed like she was always asking for something. Of course, she was. After all, we go about our daily activities doing a lot of things for ourselves. When we are handicapped, we don’t want to give up everything. Naturally, some of the things we want are not frills – e.g., medications, especially those for pain.
My point is that it can be hard for the caregiver even if the patient is considerate. They have many needs that require attention. This also made me think of something yesterday. When I got home after Kate’s PEO meeting, she was not home and all of the dishes were on the kitchen counter and the island. Plates had been rinsed but serving dishes were mostly sitting with the remains of food. I cleaned up almost all before Kate got home and took care of the balance after we returned from a reception at the foundation. She never said a word. It was as though she never noticed that it was there to begin with. I didn’t fret over this, but I did have an immediate feeling of not being appreciated. On balance, however, she is quite good about making me feel appreciated, but there are lots of things she doesn’t notice because of her AD. This was one example and there is no good reason to get hot and bothered over such things.
