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Mini-meltdown; others to come?

In my previous post, I gave an example of how well Kate is adapting to situations in which she finds her AD keeps her from doing things as easily as she could previously. Last night we had an example of just the opposite reaction. After I got home from Dad’s last evening, I poured Kate a glass of wine while I warmed up some quiche and cooked an onion for our dinner. She was working on her computer and didn’t get around to drinking any of the wine. (This, by the way, is another characteristic I am noticing. She starts on something and completely forgets about doing something else.) About the time I was going to bring the dinner into the family room, she closed her computer and was putting it away when she knocked over her wine on the table beside the new love seat we got in late August. She went ballistic. I rushed in with a towel and soaked up the red wine all over the table. It turns out that her concern was not the table but the love seat. Wine had dribbled down on the arm and then on the seat. We worked to soak it up and got most of it. We will have a permanent stain to remind us of this event. During the cleanup she was quite disturbed. Finally she said, “”I am such a disaster.” I told her that she was not. She said, “No, I am a disaster. I am going to make your life miserable taking care of me.”

As her condition continues to deteriorate, I can’t help wondering if this is something I am going to see more of. For her sake, I hope not. Once again, this is a good example of the frustrations that an AD patient experiences even as others fail to see that she has AD.

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Happy Moments in the Midst of Sadness

We returned Friday night (this is Monday) from a visit with Jesse’s family for Thanksgiving. Everything went well. Kate got along well. I don’t think a thing happened that would give either Jesse or Greg a clue that she has AD. One thing I will note is that Kate seems to have developed a more positive view of other people than she had before. I have noticed this for a good while – perhaps a year. That starts with me. She tells me much more often than she used to that she is glad she married me, that I am good to her, etc. I see the same thing in her judgment of other people. In particular she comments about how smart people are. I think this is a reflection of her inability to do so many things and her seeing others do these normal things without any effort.

Now on to the reason I chose the headline above. This past Saturday we went to Gregory’s for lunch. Near the end of our meal, Kate wanted to take a moment to update her calendar. She is working harder to jot down things she needs to remember in her calendar. She asked me when we were leaving for New York. I told her Wed., Dec. 5. I also told her that I thought she had already entered the information. She checked and said that she had. She asked me what time we were leaving. I gave her the departure and arrival times. First, she is getting good at trying not to digest too much information; so she held her hand up to stop me when I went beyond the departure time. Before moving on to the date and times for our trip back to Knoxville the following week, she struggled to get the correct information into her calendar. It took several minutes before she was ready to move on. I then gave her the arrival time in NY. That took her a little bit of time. Then we went to the return trip. This became a struggle, and she finally asked me to do it for her. When I checked the departure date and time, I found that she had entered it incorrectly. My point is that this can be looked upon as a sad situation and a frustrating one; however, we both laughed through it from beginning to end. This is not necessarily typical of these situations, but it is common. It reminds me of the way Dad reacts in many situations. He will just smile and say, “”My brain just won’t let me do it.” It is really something going through these things with both of them, but it is good news that we are sometimes able to make light of the situation.

An hour after writing the above I received a call from Kate asking me for the phone number for the president of our neighborhood association. The interesting thing is that I had just given her his cell phone number 20-30 minutes earlier. She also has both his and his wife’s cell phone numbers and home phone in the directory that she was using yesterday to make calls. She specifically indicated she had their numbers. I am sure, however, that she is simply unable to remember where she put the number I had just given her or that she has their number in the directory.

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Phases and Frustrations

I don’t think I was explicit on the change in my schedule as a result of care for Kate and care for Dad. Let me be clear now. When I learned about her diagnosis, I immediately changed my schedule as it relates to work so that I could spend more time with her. The care for Dad required more changes in my time at work. While I have never told the staff about Kate’s AD, I had let them know that she and I were going to try to spend more time together. I also told them I wanted them to assume greater responsibility for running the company. That has worked well. So well in fact that I do very little in terms of the daily affairs.

This evolution of the business as well as the growing needs of Kate and my dad have led to my coming into the office each morning, but I do only personal things. Some of that has involved plans for the 3 trips that we have coming up – -NYC in December, the Peru and the Galapagos in Feb/March, and the week in Jackson Hole in June. It also includes responsibilities with my SS class and our music club. I am occasionally asked if I am retired. I generally hesitate in answering by saying I spend less and less time at the office, but I believe I am really at the point of saying, “I am retired, but I go to the office in the morning.”

Now to the frustration part of this commentary. I find that even though Dad is in a nursing home, I feel the need to spend a good bit of time looking out for him. That involves taking something to eat each afternoon, making sure he has bananas, peanut butter, crackers, and Oreos as well as getting his clothes cleaned. In addition, there are routine visits to the cardiologist and less routine things like the dermatologist and the surgery he had last week to remove a tumor from his right forearm. He keeps me quite busy when I am with him. He always needs something.

Yesterday I took him to his cardiologist. We waited over an hour to see the doctor. I almost always take him someplace to get something to eat before taking him back. Before I could address this, he mentioned that he would like to get something to eat. I said that I had thought we might go by Wendy’s and get a baked potato. I have brought him baked potatoes on a number of occasions but not in 3-4 weeks. I like to give him a potato because he likes them and is able to eat and swallow them easily. However, he told me that he was getting tired of potatoes and wanted something else. While I went into his surgeon’s office to change an appointment from the coming Monday to this Friday, he thought more about what he wanted. When I got in the car he told me he wanted either a cheese omelet or spaghetti and meatballs. I thought for a moment and told him that we were not too far from a Waffle House and that we could get an omelet there. We went there. When the waitress came to the table, I told her he wanted a cheese omelet and asked him if he wanted anything with it like sausage or hash browns. He said that he didn’t. As soon as the waitress put the omelet at his place, he told me he wanted a waffle to go with it. I called the waitress over and let her know but told her not to put in the order until we saw how interested he was after eating his omelet. As it turned out, he didn’t want the waffle.

As we were leaving to go back to Mountain Valley, he noticed that Office Depot was directly across the street and asked me to stop in there to get him several ball point pens because the folks at Mountain Valley had done something with the ones he had had. I bought the pens and got back in the car. He then said, “I should have asked you to get some postcards as well.” At this point, I told him I would do that another time and that we needed to get back.

As we were driving he told me he thought he would need something else to eat. I told him that we would be arriving at Mountain Valley as they were serving dinner. I took him directly to the dining room, and after giving his nurse instructions from the cardiologist, I left for the day. The total time for all this was 4 hours. Had I stayed longer there would still have been things to do. For example, I noticed that he needed a shave, I hadn’t gotten his teeth brushed, etc. It never ends. Although he periodically says something about all the time I spend with him, he never really seems to be bothered by it.

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Going Through Different Phases

Right now I feel a little rushed. I have things to do to catch up on that I put aside when I was preparing for Dad’s party. Then it was the 50th TCU class reunion. Now we are leaving for Jesse’s for Thanksgiving. I have bills to pay and arrangements to make for various things. In addition, I continue to have responsibilities with Dad. In particular, I have been trying to work out a way for his blood sugar level to stay at a desirable level. I am concerned because he keeps having low blood sugar levels. The staff is concerned because he has high levels. He also had surgery on his right forearm this past Friday to remove a squamous cell carcinoma tumor. He is scheduled to go back next Monday to have the stitches removed, but we are going to Jesse’s that day.

At the same time, I am just becoming aware that Kate and I are moving into a new stage in our journey. Even before her diagnosis almost 2 years ago, I was taking a larger role around the house. She had given up cooking some time before then – perhaps 3-5 years. The only big change that occurred immediately after diagnosis was my making sure I spend as much time as possible with her. I started taking her to lunch everyday instead of eating alone. I was still working a full day at the office then. As time passed, she became bothered by the time I would get home after visiting with Dad. That led to my taking off work a little earlier so that I could spend the same amount of time with Dad but get home a little earlier. Gradually I have stopped working in the afternoon. I go to lunch with Kate. Then spend some time at the house working on the computer or other odd jobs.

Over the past 2 years, I have now come become responsible for almost all of the household arrangements except decorating and tending to her plants. Both of these things have been escapes for her. At least that is the way I view them. She gravitates toward them because they don’t involve any frustration for her. They are simple pleasures.

I have taken over almost all of her financial things. I had already before she had AD taken care of family trust activity. But now I have her American Express bill emailed to me and make the payment through her account. She doesn’t even know how much her bill is. She doesn’t see it. This morning she asked me if I knew where she keeps our envelopes. She wanted to mail a check to someone. She said she normally would have done an online bill pay from her checking account, but she can’t remember how to do that. I first found the envelopes for her. Then I told her I would be glad to help her with online bill pay. She indicated she didn’t want me to do that. I said, And I don’t want to take over everything for you.” She acknowledged her own need to continue doing as much as she can.

She did say there are somethings for which she would like help. I suggested we change our daily routine a bit. From now on we will go to lunch. Then we will focus on things that she needs help with. Then I will go to Dad’s. She seemed to like or accept that suggestion. So this is yet another step along a very long journey. I still think most people would not know what she is going through, but for someone as close as I am to her, it is a continuous series of incidents that are reminders that she has AD and it is getting worse.

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Some Positive and Negative Aspects of AD

Last night we returned from Fort Worth where we attended the 50th reunion of our 1962 graduating class at TCU.  We had a wonderful time. Clearly time had not erased the connections we had with our good friends from those days. For Kate the really good thing was that this kind of situation relies on long-term memory which, for her, is still good. That meant she was able to comfortably converse with people and enjoy them.

This made me stop and think how fortunate it is that it is the short-term memory that goes first because much of our interaction with people depends more heavily on our long-term memory. Before going, Nancy Hardwick (a childhood friend of Kate’s and also a friend at TCU) had sent us an email letting us know that Charlie, her husband (who was a former roommate of mine), was having memory problems and that we should always copy her on any emails to Charlie because he doesn’t remember things too well. As it turns out, if she had not mentioned this to us, we would never have known he had a problem.

These experiences underscore what I have mentioned a number of times before – the person with AD and his/her spouse recognize the condition long before others do. Although Kate got along beautifully as far as her relationship with the people with whom she interacted, I know that she had any number of experiences of forgetfulness that are painful to her. Her memory continues to worsen, and she recognizes it.

Not to take away from the stress for her, but it is also a challenge for me. Because she is so normal in most ways, I continue to respond to her in the same way that I have always done. For example, we had talked during the weekend about going to Sadie’s Cafe for breakfast on Monday morning before leaving. On Sunday night we talked about going there the next morning and returning to the hotel to finish packing. Right after she woke up on Monday morning, I told her I thought we might get ready to go to breakfast at 8:00 and the come back to the hotel to finish packing. I assumed that she remembered our plans for Sadie’s Cafe. When she was taking more time to finish packing, I said I thought we should go and reminded her that we were coming back to finish before leaving. She had forgotten that we were coming back to the room. She thought we were leaving for the airport in Dallas.

When we went downstairs, she walked in the direction of the hotel’s restaurant as I walked toward the door to go out to the car. She looked puzzled, and I reminded her that we were going to Sadie’s. She had completely forgotten.

When something like this happens, I recognize that I should know by now that she can’t remember. What I should do is assume that she won’t remember and say something tactful that gives her the information again without saying, “Remember, we are . . .” or responding after the fact, “I told you . . .” or “Don’t you remember?” All of these things hurt her self-confidence and bother her. I need to do a better job saying the right things instead of the wrong things.

During the weekend there were quite a number of incidents that she forgot about after my telling her something we would be doing at a particular time. She frequently asks me what day it is and then asks again later. This is one of the things she has in common with Dad.

The good thing is that I am the one who will see these things and not others. Hopefully, she will be able to hide her AD from the world for a while longer.

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An Example of What It is Like.

Kate and I are leaving Thursday for Fort Worth for our 50th TCU class reunion. I just got an email she sent to the secretary of our music club. In it she says she is free for a meeting this Friday morning or Monday morning. I called her to remind her that we will be in Texas both those times. She had forgotten. She repeatedly forgets the moment to moment things although she remembers many things from the past. These must be troublesome things for her. In fact, although we don’t talk specifically about AD, we have so many of these experiences that she doesn’t have to say anything for me to suspect how frustrating it is for her.

The other day she had some simple problem on the computer, and she said something about “This is going to be a long road.”

I bought new phones at the house about 6 weeks ago. One has been missing for at least 2 weeks. We have remotes that go with each TV in the house. They are not interchangeable. The one in our bedroom disappeared a few weeks ago; so we borrow from another one when we need it, but it won’t do all the same things the correct one will do.

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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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Dad’s 99th Birthday

This past Saturday we had Dad’s 99th birthday party at our house. We had a total of 58 people on a beautiful, sunny day. Kate and I both had a feeling of relief yesterday. She was absolutely worn out. We both went to bed around 8:30. Besides the weather’s being great,  everyone seemed to enjoy the party, especially Dad.

We did quite a lot in preparation for the party. We painted the outside of the house, had some electrical work done, got a new rug for the family room, bought a new love seat for the family room, cleaned up the garage, did more than the usual cleaning of the house, and Kate did a lot of work outside with her plants. All of these things needed to be done anyway. The party was just a catalyst to do them now. Of course, they don’t include all the things directly related to the party like invitations printed and mailed, selection of a caterer and menu, decisions about handling the crowd outside, inside, and what to do if it rains, etc. I don’t like managing details, and event planning is far from my strength. With all this done I can now focus on other things for a while.

Kate’s AD had quite an impact on me during the preparations and during the weekend, but I don’t think anyone else would have been aware of her condition at all. There are things that came up that could have potentially alerted someone, but to my knowledge nothing gave her away. One time she came to me as we were preparing to serve dinner to the family Saturday evening after the party. She took me aside and whispered in my ear, “Where do we keep the wine glasses?” I got them for her, and no one knew.

I was aware that the preparations put her under a lot of stress. I felt a lot of stress myself, but it must be double or triple that for her because of insecurity that comes from her inability to think clearly and to remember the many details required to pull off something like this. One of the things that was troublesome to me was her focus on her plants and landscaping when I felt we should be focusing on more basic things like the cleanliness of the house. I also felt the load was completely on my shoulders. She gets flustered by making decisions, and thankfully, defers to me for most things. That meant that she did precious little to manage any of the little things like meals for our family. I do wonder if people notice this. She has just bowed out of the routine things she would have done in the past.

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Two Quick Things

Here are 2 examples of the types of memory problems that are occurring regularly.

1. For several years we have used our house as a periodic B&B as a fundraiser for Kate’s PEO chapter. Last night and tonight we are hosting 2 ladies from Erie, PA. We got the call about this B&B approximately 4-6 weeks ago. Last week we received a reminder call. Kate and I talked about it, and she added it to her calendar. On Tuesday evening she called our housekeeper to ask if she could come yesterday instead of tomorrow to help her get ready for our guests. I reminded her it was Wednesday and Thursday. We got a call from one of the guests who said they would be in around 1:00 pm or so on Wednesday. I communicated this to Kate. When I got home from the office around noon, she was trimming the shrubs outside. I said, “You must be feeling pressure.” She asked why, and I said they would be here soon. It turns out she was thinking it would be Thursday and not Wednesday when they would arrive. She then did begin to panic.

2. Sometimes she indicates she wants to do something and then forgets about it. For example, she is working on an update of the neighborhood directory. This was prompted by a request from our new neighbors. Knowing how long it might take her to do a complete revision of the directory, I suggested she just send a copy of the existing directory. She firmly resisted this. I dropped it. Then I saw the neighbor on Sunday morning as I was walking. He mentioned the directory, and I told him Kate was making a revision right now. He said he would like to have one just as it is. I told Kate, and she said, “No problem.” And got one for him.

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Imagining the Future

While I believe I am living in the present much more than I ever did, that doesn’t mean that I don’t think about the future. Yesterday as I walked down the hall to see Dad, I passed by several of the residents that I see every day and thought “that is what Kate will be like some day.” Rarely do I actually get an image or even think of her in that condition. What is normal is for me to simply try to do things now since we may not be able to enjoy things in the same way some time in the future. The best example of that is my plans for travel in the next 8-9 months. We will be in Fort Worth November 1-5 where we will celebrate our 50th TCU class reunion. Dec. 5-12 we will be in New York. Feb. 24-March 16 we travel to Peru and then the Galapagos Islands. June 13-22 we will be in Jackson Hole with our children and their families. Finally we will make our annual trip to Chautauqua July 18-27 with a 2-night stay in Niagara-on-the-Lake. I am looking at these trips as a celebration of our 50th wedding anniversary that occurs May 31.

All of this takes money, more money than we receive in income; so what that means is dipping into our reserves. Over our entire married life, we have rarely done this. My justification for doing it now involves my concern that after next year, I am not sure how much special travel will be in the cards for us. I hope that Kate will continue to appear normal to others a year from now, but I am suspecting that the children might notice something different about her when we spend a week together next summer. I also am wondering how many more times we will take care of the grandchildren. If I have to take care of them and her, that may be a problem.

Kate’s short term memory continues to worsen. She tries to write down all of her obligations and to share them with me so that I can remind her. We are doing a good job with respect to her hair appointments. She is now making her next appointment at the time she goes for an appointment. Then she gives it to me, and I put it on my calendar. I don’t put down everything and don’t always remember to remind her. Last Friday, for example, she was to meet a PEO sister to interview a candidate for a scholarship or grant. We had talked about it on a couple of occasions. It turns out that I got in a rush and didn’t remind her of the appointment although she had remembered it that morning. That evening when I asked her how it had gone, she was shocked as she realized she had forgotten to go. This kind of thing on a less important scale happens daily.

I am gradually taking over more and more responsibilities in connection with here tasks. She still works on the computer, iPhone, and iPad, but she needs help with many things she does on these pieces of equipment. If she accepts some responsibility like arranging refreshments for our music club, I feel I need to make sure that it gets done. Early last week she finished and sent Brian a pictorial account of our trip to NYC in July. It is something she should have finished rather quickly, but it takes her a long time. She revises and revises and then she forgets about it for a while. The same is true with other photo albums she is working on for us. The good news is that it does give her something useful to do, and there really is no deadline.