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Sweet memories but constant reminders

Wednesday night we got back from NYC. It was everything I had hoped it would be. We saw more shows than ever (5), 1 opera, a performance of Handel’s Messiah, and the new movie, Lincoln. We are treasuring the memories of such a special trip.

Back home, I see Kate dealing with the frustration of accomplishing things – mostly on the computer. Yesterday I could sense she was depressed which I took to be related to this frustration. When I got home from visiting Dad, I asked her what she would like to do for dinner. When I suggested one possibility would be to bring something in, she didn’t look excited. Then I said, “”How about going to Casa Bella?” This is one of our favorite restaurants in Knoxville? We almost always get the same thing, and it has come to be a comforting place when we are low as well as times when we are celebrating. She responded quickly saying, “”Could we?”

I told her I would like to go ahead and get my shower. She said she was ready but would continue working on the computer while I got ready. Her power cord is damaged again; so she was using mine. She has repeatedly has power cord problems because she uses the computer with the power cord plugged while lying in bed or sitting in a location where the cord is pulled. Within two months of getting the latest computer, we had to replace the piece in the computer into which you insert the plug as well as the power cord itself. We had done this on her previous computer as well. We have discussed why this is happening, and I have encouraged her not to use it that way. In addition, I bought her an iPad because I thought she could use in it instead of the computer, but she has not gravitated to the iPad. I think that is mostly because the bulk of what she does is making photo collages using Microsoft Publisher and Creative Memories, neither of which she has on the iPad.

This is all a preface to one of my failures in handling a situation last night. Just before we left and while she was working on the computer, I told her again that it was better not to use the power cord while seated on the sofa. (That is because it requires the cord’s being pulled to the side which can cause the same damage to my cord as to hers.) She said, “”I am trying to be super careful.” I answered softly but inappropriately, “If you were trying to be super careful, you wouldn’t be using the computer this way.” She then broke into tears and went to get her coat.” When she came back with her coat, we embraced and I told her I loved her. She said, “I just hate this; I can’t do anything right.”

We had a perfect evening at Casa Bella. We caught them on a very busy night, but we had good service, the veal piccata was better than usual, and we topped it off with white chocolate cheese cake. When we got home, she was tired and got into bed before I did. While I was brushing my teeth, I heard her, and asked if she were laughing or crying. She said, “”Crying.” I asked, “”Why?” She said, “”I don’t know.”

These are continuing signs that she is getting progressively worse, and she realizes what’s happening. One of the things that hurts me is that she keeps most of this to herself. I wish she were able to talk about it more, but I think it is not just to spare me but to protect herself. I suspect that she feels the more she dwells on her condition, the worse things are. She is really frightened.

Once again, events of yesterday reinforce the superficiality of social relationships. At noon yesterday, we had our Sunday school class Christmas lunch. She sat at the same table as our pastor. He has told me before that except for knowing from me that she has AD, he is unable to tell when he speaks with her. I suspect that even though they sat at the same table for more than an hour, he wouldn’t have been able to tell. On the other hand, I can see so many things that make it difficult for her to function effectively.

This makes me wonder how long we can keep this from our children. I really want them to know so that they can make the best of their relationship with her the way I have been able to do. At the same time, Kate does not want people to look at her as a patient. I will honor this desire until or unless the children begin to suspect. That could happen this summer when we spend a week together in Jackson Hole. If it doesn’t, this will be further evidence of how long someone with AD can keep it hidden from others.

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Don’t you remember?

Quite a while ago I mentioned that Kate had asked me never to use “that word  ‘remember.'” I feel like I have tried to honor this request, but I have failed miserably. It is amazing how conditioned I (we) have become to automatically saying that when someone fails to remember something we told them. Normally this is not a big problem, but with someone who has AD, it is. That is because there are so many instances of forgetting something that has happened or something you have told them. It seems particularly difficult because for a long time, the person does remember so many things. These instances of remembering reinforce that the person is normal. Our expectations then are that she should remember everything.

I have been unusually sensitive to this pattern in recent months, but I continue to say, “Don’t you remember?” or “I told you . . .” When I do this, I feel guilty because I know it is a constant reminder that she cannot remember. At least she does not ask me not to say this. I feel confident she does not remember telling me not to say this. Last night was one of those moments of confusion. I had reminded her the day before that I had a meeting of the executive committee of our music club at 6:30 pm and that it might be a long meeting since the first one had been long. I must admit that I was never too specific about this; so it may have been clearer in my mind than hers. Nevertheless, she thought I would be home much earlier than I was and got worried. She had envisioned that we would spend a quiet evening together following all the activity of the past few days. The reality was that I didn’t get home until 8:30, and we still hadn’t eaten dinner.

As I have said before, this forgetfulness is getting worse. It makes me wonder when the children and others will notice. I suspect we will get along without revealing her forgetfulness when we are with our children at Thanksgiving and Christmas, but next summer in Jackson Hole for a week is another thing. I hope for Kate’s sake, they don’t notice.

Another issue that Kate is facing (and I along with her) is a loss of self-confidence. She is learning not to trust herself because she knows she makes so many mistakes. Last evening her computer was not working after she had supposedly charged it. I asked her to bring me the power cord. When I tried to plug it into the computer, it wouldn’t go in all the way. I got mine, and we charged it. This morning I looked at her power cord to see if I could identify the problem. When I did, I discovered that the slim metal connector in the tip of the cord was bent. A couple of months ago we had to buy another power cord because the first one was broken. This happened because Kate lies in bed or sits in a chair with the power cord attached. The way she holds the computer it often presses up or down on the end of the cord that is attached to the computer causing the connection to fail. When I found the problem this morning, I was able to straighten out the slim metal connector, and it worked. I reminded her how that happens. She said she already knew and looked hurt because I was telling her. I said, “I know it seems like I am always correcting you. I’m sorry.” Then I said, “It must seem like everyone is always correcting you.” She nodded yes. To me this is a further indication of the small ways in which she is feeling less confident and confused about things.

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Who is more to blame?

One of the things that is a continuing issue is the attribution of responsibility for things that happen. This is just as true with Dad as it is with Kate. This deserves a word of explanation. This past Sunday we got back home from taking Brian to New York. A simple experience on the subway illustrates the problem. We used Metrocards. When we were going on our first ride, I went through to show Brian and Kate how to slide the card and walk through the turnstile. Then Brian went through. Kate tried twice, and it didn’t work. I immediately thought she had done something wrong, and the expression on my face obviously showed my displeasure and also said something that that had just cost $7.50 for one ride on a $10.00 Metrocard. Later in the trip I made a mistake by directing us to the subway going the wrong direction which led to our having to exit and come through the turnstiles again. In other words, I had just wasted $7.50 by not being more careful.

Experiences like this leave me with a guilty feeling. I know that I should be more understanding because of her Alzheimer’s, but I sometimes act like she can actually help what she is doing. I think I referenced a word that she wished I would never say again – “Remember . . .” Her point was that this reminds her that she can’t remember and I should also remember that she can’t remember.

When someone who relates to another person who has dementia he is continuously face with a judgment of how much responsibility to put on the patient. I have been good at assuming that when Kate leaves the gate to the patio open, fails to lock the sliding glass doors from the house to the patio, or puts dishes in the dishwasher in places that seem inappropriate to me, she does these things because of her Alzheimer’s. In other words, I do not attribute responsibility to her and don’t mention these things to her. While I can’t at the moment think of other good examples, there are many of them that come up throughout a typical day.

My point in this rambling is that the caregiver has the burden of treating the person with the knowledge that he or she can’t help doing what they do. It is better for the patient and for the caregiver. Both parties feel bad when the caregiver emphasizes the disabilities of the patient. This happens most often with my Dad when I ask if he is going to eat something that is on the left side of his plate where he can’t see. He will say, “Where, I don’t see it.” I should know that he can’t see it and simply put the food where he can see it.”

All this reminds me of the expression, “Who’s the crazy one?” when someone behaves like the crazy person is sane. “Who’s the one with the problem– the one who has been diagnosed with Alzheimer’s or the caregiver who acts like he has forgotten that there are things the person with Alzheimer’s can’t do.”

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Spending Money

I have always been very careful about spending money. Since Kate’s diagnosis, I have found myself changing somewhat. I now attach a higher priority on making the most of my time with her. Sometimes I wonder what I will wish I had done when I had the chance. For that reason, I have found myself spending more money on experiences this year than in the past. For example, I just arranged for a trip to NYC in Dec at a B&B that sounds appealing. New York has always been a special place for us. We especially enjoy it around Christmas. We have traveled there more than any other single place. I will look forward to this trip knowing that the number of trips we make there will be fewer in the years ahead.

The other day I did something I wish I had not done. We were in Niagara-on-the-Lake, Ontario, and I had not arranged for international calling. That means that calling back to the US is more expensive than it would be otherwise. Kate made a phone call to her friend, Janice. Afterward I reminded her about the expense of international calling. She felt horrible. I tried to tell her it wasn’t that important but I shouldn’t have said anything. Being careful with spending is still a part of me. That is especially silly since the call could not have been more than a few dollars. I’m still learning to adapt.

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Feeling Guilty

Once in a while I feel a little guilty about the way I respond to both Dad and Kate. Last night, for example, I had turned my cell phone on vibrate while we were attending our music club meeting. I forgot to turn it back to ringer when we returned home. This morning when I got up I noticed that I had missed 3 calls and had 3 voicemails from Dad – all around 11:30. He indicated that he was a little disoriented and was sitting on the side of the bed and could not find his call button. In his first voicemail, he said something about thinking he was in a kitchen somewhere. Although 99% of his calls involve no urgency or crisis, once in a while he needs something like last night when he couldn’t find his call button. Two nights in the past week or 10 days, he has placed 10 calls one night and 8 calls another. Most of these calls he doesn’t even say anything because he can’t hear anything said on my end. Nonetheless, I want him to feel that he can reach me when he is unable to get attention from the staff; so I feel guilty that I wasn’t available for him.

Similarly, I occasionally find myself not being as patient with Kate as I should be. In spite of her forgetfulness, she does remember a lot; so I tend to expect her to remember things that she doesn’t remember. The other day I asked her if she remembered some person or occasion from a few years back. She indicated that she had no memory of him/it and said, “”You forget I have Alzheimer’s.” Most of the time I do remember and don’t criticize or even point out her mistakes, but sometimes I give a response that shows I am treating her as though she does not have Alzheimer’s. I feel a tinge of guilt when this happens.

Late yesterday afternoon we went over to Panera Bread to get a bite before going to the music club. It was beautiful outside and we chose to eat at an outside table. We sat at the very same table we had sat at a few days ago. After sitting down, Kate said, “”This is the first time we have sat outside here.” I said, “”Do you want me to answer honestly?” She naturally said, yes.” I told her that we had just eaten outside a couple of days before. Then I felt guilty because I felt she had no choice but to say she wanted the truth but that giving her the truth did not serve any useful purpose.

The weekend was stressful. Kate had agreed to help with refreshments for Monday’s meeting of the music club. When she did this, I was concerned and suggested we purchase what we needed rather than prepare them ourselves. She felt she really wanted to make them herself. I notice there are a number of occasions when she wants to volunteer to do something like this when I think it is too stressful for her. It seems important to her, however, to retain as much of her ability to do things as she can. I can easily understand this, but what troubles me is that 1) I know I will need to help her and that will be difficult for me because they are usually things that are not my cup of tea and 2) she is going to be stressed in doing what she wants and has committed herself to do.

At any rate, as we go to the weekend, I told her I would go to the grocery store for her. Then I had to push her a little to actually get started with the cooking on Sunday afternoon. I was pushing especially hard because I wanted to accomplish as much as I could before going to see Dad and also because she wanted to attend a performance of Verdi’s Requiem Sunday night. She is very slow to move. This has been true for several years. In fact, she has never been sensitive to time. I now believe one of the consequences of Alzheimer’s is moving more slowly because the brain functions more slowly.

One of the first things that I noticed in cooking was that she let me take the lead in getting things done. That is very unnatural for us in that I am not and have never been a cook in the baking sense. Cooking meat on the grill is a different matter. Despite her wanting to do things for herself, when it gets down to getting it done, she has to depend on me. When she does this, I get the greatest sense of her having Alzheimer’s.

In other situations she does beautifully. For example, last night at the music club, I don’t think anyone would ever suspect that she has Alzheimer’s. She is able to converse quite naturally and confidently. It is only when she has to make her brain work – e.g., figure something out like quantities in a recipe the way we were doing Sunday. Sunday she put 2 cups of sugar in the crust for the lemon squares and the sugar was supposed to be in the lemon itself. Fortunately, the lemon squares were edible and people in general liked them, but the crust was crystalized sugar and not like it usually is. Before leaving the house on Monday morning, we tried to prepare praline cookies. I left just as she was putting them in the oven since I thought the recipe was simple and one she had prepared many times. It turned out that she had to throw away one cookie tray because she had overcooked them.

When we got home last night, she was able to unwind. She was happy that people had liked what she had prepared even if we did not think they were up to her standards. When we went to bed, she indicated that she was relaxed and did not plan to volunteer to something like that again. That certainly made me feel better.