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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.

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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.

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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.

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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.

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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.

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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.

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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.

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So what’s going on?

It has been a busy couple of weeks. Kate and I took Brian to New York July 17-21. We had a week to ourselves, and then we hosted the twins from Memphis. Yesterday afternoon we met Taylor at the airport in Nashville for a week’s stay. The twins are still with us and are actively having a good time. As soon as we got home last night, they played basketball, then took a swim, then watched the Olympics until just after 11:00.

During this same period of time, Dad has been getting along reasonably well. His latest challenge is a skin cancer on his right arm. We went to the dermatologist this week and found out it requires some careful attention. We had several options to choose from and have decided to take off the top crusty layer of the tumor and then go through radiation 3 days a week for several weeks. He is not in any great pain and is not experiencing any special emotional reactions to the procedure. He does continue to talk about his birthday party coming up on Oct. 20. I am feeling the pressure to get things organized, but that will have to await the departure of grandchildren.

In the meantime, Kate has enjoyed herself, but we continue to see signs of her Alzheimer’s. The other day she asked me for the umpteenth time how to view her pictures on her camera. I know she has hated to ask, but she increasingly doesn’t try to fool me about her memory. I am sure she does sometimes and suspect she is becoming more aware of how much help she requires. I really felt sad for her when she asked the most recent time she asked.

Recently she has said, “You’re so good to me.” I have several reactions to her comment. The first is again a sense of sadness for her. Another is one of guilt that I continue to lose patience with her at times.

Last night she asked me how to do something on her camera, and I showed her. Then she said, “You told me that before.” It was something that I didn’t recall her asking about and felt there was no reason for her to know; so I told her. She was so relieved, it was striking to me. I know she hates to encounter one instance after another in which she has asked about something but can’t remember it. I am continually running into numerous instances in which I have told her something, and a short time later she is unable to recall having been told.

This memory problem is an issue for the caregiver in that we frequently talk about events, issues, etc. in everyday conversation. It also limits the amount of conversation.