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From Chautauqua

Yesterday we arrived at Chautauqua (Chautauqua) after two nights in Niagara-on-the-Lake. For several years we have gone there before going to Chautauqua. From April through October they have the Shaw Festival that we both enjoy. They have a theater company that performs as many as 8-10 plays either by George Bernard Shaw or ones that are similar to his. We packed in a lot, seeing four plays in two days. They were all terrific. We love live theater, it was another of the very special times we continue to have.

I continue to notice ways in which I need to take more responsibility. Kate came without any comfortable shoes and left some shoes, a jacket, a pair of slacks, and a few other things At our B&B. I notice a conflict between my wanting to take more responsibility and Kate’s wanting to feel independent. There are some things she appreciates – my taking care of, everything financial, some communications with friends, making arrangements for dinner and entertainment. There are also times she feels insulted by my efforts to help. Yesterday I showed her where the bookstore is and told her I would meet her there. She gave me a disgusted look and said she knew where the bookstore was. We have had a number of such things on the trip.

On the positive side, I still believe that we are fortunate that for everyday interaction with people that her long-term memory is still more than adequate for her to enjoy herself with others (most of the time) and to prevent their noticing that she has a memory problem. It is the short-term things that are most difficult for her. For example, we had a delightful conversation with two couples at our B&B in Niagara-on-the-Lake. A short time (perhaps, 2-3 hours) later she couldn’t remember them when I mentioned them to her. I explained, and she said she remembered. I know this is frustrating, even distressing, for her. She says little, but it shows in her face.

I have often been critical of those who say that the person with AD does not know what is happening. I have a different perspective on this issue. My experience with Kate has reinforced this opinion. Clearly Kate knows she has AD, and she can see signs of it everywhere. On the other hand, I see her transitioning to a rather innocent, even child-like, stage that I don’t think she recognizes. One indication is that she very frequently remarks how intelligent people are. It often seems like she says this about most people she encounters. Another is that she is forever wanting to arrange to get together with people that we have not gotten together with before. She will even suggest inviting them to our house when I know that she will not remember to follow up on that desire nor will she be able to organize things for the event should I extend the invitation for her.

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Back In Business

Yesterday we got Kate a replacement driver’s license. This is the second time in two weeks that we have done so. We have now placed the driver’s license and her ATM card in a small change purse and put it in the storage area under the console between the two front seats. I hope this works.

I know this has been hard on Kate. She has been stuck at home. Monday she was particularly cooped up. She was glad to have her license back for the psychological boost it gave her. One of the ways I notice she is down is that she pays no attention to dieting which she talks about for a few days and then goes off. While we were in Jackson Hole, she said she was going back to Weight Watchers as soon as we got home. She has made no effort to do so. She did take a stab at watching her diet a few days, but then gave in. I have not worried about this much since I feel that I want her to be able to enjoy herself as much as possible.

It is so hard for her to do much nowadays. She continues to devote herself to the yard. I think this is because it is one thing she can do. Everything else requires more thought than she wants to give. She even asked me to answer an email from the treasurer of our neighborhood association. She had offered to reimburse Kate for the newsletter she distributed in May or early June. All Kate needed to do was tell her how much to pay. She asked me to write it for her.

Before leaving for Dad’s yesterday afternoon, I could tell that she was down. I told her I would take her to dinner when I got home. I headed for a nearby Thai restaurant when she asked where I was taking her. When I told her, she didn’t react positively. I suggested another place, and she was happy about that. We went and had a good time as well as a good meal. It’s just that we spent more than we usually do for a weeknight dinner. Although someone might think we spend too much eating out, I feel that it is worth it. Before we started eating out for all our meals, I spent time preparing food by myself. Then I cleaned up by myself. Now we can spend that same amount of time together. Of course, I know that we won’t continue this forever. How long is the real question. I feel confident it could go on for more than a year and perhaps as long as 3-5 years.

Dad has continued frequent calls yesterday and this morning. At 3:00 yesterday afternoon he called to say he didn’t know where he was and that his phone was not working. When I was there for dinner, I asked him about both of these things. With respect to not knowing where he was, he said, “”Oh, I knew where I was, I just didn’t know what else to say.” As for the phone, he told me that it said it was Tuesday, July 9. I told him that was correct. He said it hadn’t moved all day.

This morning he called twice while I was at the Y. He said he didn’t know where he was but he was in a real nice restroom. It had bars on the wall that you could hold and everything. He went on to say that he was sitting on the side of his bed at Mountain Valley. I told him to stay there. I told him what time it was and that I would be there this afternoon. I got a call back in about 30 minutes. He asked if I were looking for him. I told him know. He said he was still in bed and that he was all right. I told him to stay there, and I would be there this afternoon.

I can’t help noticing similarities between some of the things he does and those that Kate does. They both get confused and don’t like to be questioned for explanations. Kate regularly says, “Let’s not talk about it now.” Dad says almost exactly the same thing.

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Odds and Ends

We still have not found Kate’s driver’s license. That means I am driving her wherever she needs to go. This Thursday is her monthly PEO meeting. I know she would like to drive since she wants to take a neighbor with her this week. I am not optimistic about finding it before then.

I got five phone calls from Dad between 1:52 and 2:12 this morning. He said he didn’t know where he was. He said he was on the floor and his legs were on each side of the commode.( I called Mountain Valley, but the phone never answered. I have since discovered that a lightning strike the other night damaged the phone system. It is now working.)

I got a couple of calls from him while I was at the Y this morning. He still did not know where he was and couldn’t find his call button. Dad has been going down and continues to have these periodic experiences in which he finds himself some place other than Mountain Valley. He is generally looking for help in getting him back where he belongs.

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Losing Things Again

Before leaving for Jackson Hole, Kate had misplaced her driver’s license, ATM card, Medicare card, and her supplemental insurance card. Last Friday we replaced her driver’s license and arranged for a new ATM card. I can’t recall how many ATM cards we have replaced. This morning as she was ready to leave for Lowe’s, she found that she had misplaced the driver’s license that we got on Friday. She has looked everywhere and continues to look, but no luck yet. It is most discouraging to her and to me. I am afraid I am going to have to take charge of these things .

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Great Family Time

Late Saturday night Kate and I returned from Jackson Hole, Wyoming, where we had rented a house to celebrate our 50th anniversary with our children and grandchildren. Everyone was able to be there which is a very rare event. In fact, this is the first time all of us have been together for a full week. I am glad to report that it went swimmingly well – at least from our standpoint. I also believe the others had a great time as well.

I thought that Kate got along well. I suspect that no one may have been suspicious about her Alzheimers. She is more withdrawn than she used to be and did not pretend to help in the kitchen which could have been a clue. I guess I will find out when the day finally comes that we make it known to them. It would not surprise me that when that happens they will have already been suspicious.

This has made me reflect once again on the timing of telling them. From Kate’s standpoint, she would just as soon never tell. They would simply come to realize it the way I did with my mother. On the other hand, I has meant that I have been able to take advantage of our time together. I wouldn’t give anything for this time. We have been very conscious and deliberate about making the most of our time. The interesting thing is that despite Kate’s own frustrations over having AD, she thinks she will have more time than I believe she will have.

By the way, she commented on how caring Jesse and Greg were during the week. She wondered if I might not have told them. I told her that I hadn’t said a word. I think they were responding to the nature of the hiking trails we were on. We all noticed that she is less stable. They also know that she is geographically challenged.

Kate was quite careful to ask me for help when she needed something. For example, she didn’t know where any of the kitchen utensils were kept; so when she fixed her cereal in the morning she needed help identifying the right drawer. She asked me discretely, and I don’t think anyone noticed.

One reason I don’t think people noticed is that no one has said anything to me. If they know, surely they would say something to me.

I will write more later when I have a moment. I want to comment on the grandchildren and the letters I had for her.

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Cards Lost Again

I believe I mentioned that we have replaced Kate’s ATM card several times over the past year , three times since Jan 1, I believe. A few days ago, I gave her a leather card holder that I had used in the past to carry my business cards. I put her driver’s license, ATM card, Medicare card, and supplemental insurance card in it. Yesterday afternoon she told me that she couldn’t find it. This morning she let me know that she has gone through all her purses and looked in all the places she thought it might be without success. I looked in the car and around our bedroom and laundry room. Still no luck. I told her we would look for it later. I also told her we could use her passport when we travel to Jackson Hole on Wednesday. In addition, I suggested that we put the new cards in the glove compartment of her car and that we leave them there.

Of course, I stopped short of saying what I think is coming – that I take all her cards and hold them for her.

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Our 50th Anniversary

This past Friday we celebrated our 50th anniversary. I spent most of the day with Kate, and we went out to dinner that evening. This entire week we have reflected on the things we have experienced together. Our relationship continues to be special. Although it has always been good, it has taken on a different nature since Kate’s diagnosis. As I expressed before, I wish that I had been able to respond to her before the diagnosis the way I have since. I have been significantly more understanding and , thus, accepting. Many little things that annoyed me before (for example, the way she loads the dishwasher) I simply accept now.

This is also to underscore that many of the things that I attribute to Alzheimer’s are things that were manifest earlier. They are just significantly worse now. One example would be the fact that when she opens a pack of sugar substitute, she leaves it on the counter rather than putting it in the trash which is immediately below where she dropped it.

I continue to observe that she accepts her dependence on me. She wants me to help her with most of her tasks (PEO, neighborhood, calls to people, etc.). I acknowledge that this puts some degree of stress on me, but it is quite manageable right now. I know the future will be different. Adding to this is care for Dad. He celebrates his 100th birthday on Oct. 19. We begin to act as though he will live forever. While I know this is not so, he could live long enough to complicate my care for both of them. I suspect, however, that it will work out. By that I mean that he will pass away before Kate reaches a point at which she requires constant attention.

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Things For Which I Am Thankful

I realize that much of my conversation may have a negative tone to it and want to present the other side for a change. It’s not that something especially good has happened to us in the last day or two but that overall we have much for which we are grateful. Perhaps I was prompted by a conversation I had with our banker the other day. I initiated steps to become power of attorney for Kate’s financial accounts and explained to the banker that she has AD. Last week I spoke with him for the first time in 6 months or more. He asked how we were doing. I told him that all-in-all we were doing quite well. Then I explained that one of the benefits of knowing early about her AD enabled us to place more emphasis on our relationship and making the most of the time we have together. Even with the natural frustrations that I experience with Kate’s inability to do or remember things, I have become decidedly more patient and understanding. That has made all the difference in our relationship. Even though we have had a strong relationship in the past, it is at its strongest now.

Beyond this, we are not under the financial pressures that might prevent our doing many of the things we enjoy. In addition, her diagnosis came at a time when I am able to take time away from my business and invest more personal time Kate.

When we consider everything, we are incredibly blessed, and we recognize it.

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All Went Well

Last night our dinner with friends went well. The woman who mows the lawn came earlier in the day, the weather was pleasant, and everyone showed. No disasters occurred in connection with our preparations. Kate stayed out in the yard until 90 minutes before the guests arrived, but I had already settled on taking care of all things that I could. It worked. The sad part is that she thanked me for taking care of everything both last night and again this morning. It makes me sad for her to recognize her dependence on me.

When I left for the office this morning, she was pulling weeds in the front yard. I know that one reason she likes to work in the yard is that it is something that she can do. There aren’t as many “rules” that she has to follow or things she has to remember. She can just pull weeds, plant plants, and prune shrubs. It troubles me (and I know it troubles her) that she is so unable to do so many things.

I can’t recall whether or not I said this in an earlier post, but she told me the other day that next year she is going to ask Shirley Hazel, the PEO sister with whom she works on the scholarships, to do all the computer entry and letters of recommendation. She does still want to go with her to interview the candidates. I had been wondering about her telling Shirley that she didn’t want to continue, but this is much better that she chose this direction for herself and that she can maintain some involvement though minimal.

I think she needs to do the same with the responsibilities for the neighborhood newsletter and directory. Perhaps she will come to this conclusion herself without my saying anything.

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In A Quandary

It is now 2 ½ hours before we are having 3 other couples over for a light dinner. We are doing this informally. We hope the weather will cooperate and permit us to eat outside. If not, we’ll simply adjourn to the family room. Despite the informality, we have a good bit to do. I cooked pork tenderloin last night. We are going to thaw some shrimp and have shrimp cocktail. In addition, we will have assorted cheeses, fruit, and caprese salad. All of these are things we need to have in order by the time everyone arrives. At the moment Kate is outside working on plants. Some of this work has been pruning behind the shrubs on the side of the house where no one can see anything. How should I respond? Do I push her? That will annoy her. Do I let her go and just let the chips fall where they may? It is the latter that I am tending to do more and more often. I do believe we are very near the time when I will simply do everything except what she may want to do to make her feel a part. I don’t mean tonight although that is where we are headed. Thus far she has done very little except for the yard. It looks great, and I appreciate her work. However, I consider it secondary to the things that must be done to serve dinner.

Another issue is her weight. She loves eating snacks and treats like Wendy’s Frosties, candies, etc. She is frustrated over her weight gain. I am only 10-12 pounds heavier than she, and we found on our trip to South America that she can comfortably wear my jeans. I can understand she wants to enjoy herself while she stills knows and understands what is going on around her; however, I also know that she is troubled by her weight. She decided to go to Weight Watchers before we went to South America. She decided to start after our return. She went to one meeting and never returned. Again I have decided for the moment that I will not put any pressure on her. I feel like she needs to enjoy herself.