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Enjoying Time With Long-Time Friends

Two days ago I mentioned that I had received a call from Jan and Scott Greeley while we were in Barnes & Noble. They were in town for the memorial service of a friend and were to let us know when they were ready for lunch. We met them and had a great time catching up on things they were doing. They are among our most traveled friends. Recently they returned from trip to Costa Rica. Scott and Kate have been friends their whole lives. Their mothers were friends and were pregnant at the same time. I understand from Kate that the two mothers occasionally tried to encourage a more serious relationship. By the time that might have happened, Scott’s family had moved to Midland, Texas. The two families saw one another from time to time, and they both ended up at TCU where Kate and I met.

I say all this to convey that Scott is someone Kate has known well and liked her entire life. Since they have lived in Nashville as long as we have lived in Knoxville, we have been able to get together several times a year, especially during the past few years. So when I told Kate, that the call was from the Greeleys and that we would be leaving to meet them for lunch, I expected to see her eyes light up. Instead, she said, “Tell me who they are again.” I explained and thought she understood though she still expressed no excitement. I put away my computer in preparation for us to leave. I expected her to close her iPad. Instead, she told me she wanted to finish her puzzle before going. It turned out that she was not just on the last couple of pieces but several. It took her another five minutes or so to finish. Then we left. For me, her nonchalant response to our meeting the Greeleys was a significant sign of how much her memory is deteriorating. It is one more of many little signs that tell me we are moving more quickly to another stage of her disease.

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There’s A Difference Between Short-Term and Immediate Memory

During the early stages of Kate’s journey, I thought “short-term memory” referred to remembering things that occurred yesterday or this morning. As time has passed and her condition has worsened, I am now focused on what is called “immediate memory.” That is just what it sounds like and is very important in coordinating with people. A few minutes ago, I observed a good example of Kate’s very weak immediate memory.

We are at Panera, and she got up to go to the restroom. When she returned, I noticed a label on the pants she is wearing. The pants were inside-out. This surprised me because I had noticed the same thing at home before leaving. She had taken them off and put them back on again. When I mentioned this to her, she went back to the restroom to change. Then she returned again wearing them inside-out. This time I haven’t said anything. I suspect we will go home shortly. I will tell her then so that she can change before we go to lunch.

Another example of weak immediate memory occurred at home before coming to Panera. I had placed her morning pills on the island in the kitchen with a glass of water beside them. I do this almost every day. I thought she had started taking her pills but noticed that she opened the cabinet and took a glass that she was about to fill with water. I told her I had a glass of water on the island with her pills. She turned around to take her pills while I started getting ready to leave. Then I heard her say, “Somebody put salt in this glass.” When I looked up, I saw that she had picked up the glass that I was using to gargle with salt water. I had deliberately put the glass in a spot where I thought she would not see it. I was wrong again. I reminded her of the glass that I had put with the pills. This time she got it.

Perhaps the most common daily example of this involves her clothes. Whether she puts her own clothes out to wear or whether I do it, she frequently forgets them and gets something else to wear.

Her reaction to these things is different now than in the earlier stages of her disease. At that time she expressed more frustration and depression. Now I don’t notice any emotion. I think that occurs for two reasons. The obvious one is that she has no memory of what she has done. The other is that she seems to have reached a point at which she is not as bothered by how others perceived her nor how she perceives herself. I usually don’t say anything to call attention to these things, but sometimes I do. When that happens, she often says something like, “Who cares?” In some ways, I am both surprised and pleased that when I tell her about clothes that are either inside-out or backwards (both of which are very common), she often thanks me.

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Planning for Next Year

Despite losing Kate twice and experiencing several awkward or unpleasant moments, I am making plans for next year. I have found a place where we can stay the first two weeks of the season. It is a very short walk to the Amp and right across the street from the Brick Walk Café where we eat many of our meals. I get my coffee there each morning. It is also the primary place where we get ice cream.

Kate has enjoyed herself, but she gets bored a lot despite the activities. I am just grateful that she enjoys most of the lectures and entertainment because I know she can’t follow much of what she sees and hears. She gets irritated with me and not just in playful way. She resents my help. From my point of view, I see that she is not able to do many things; so that leads me to try to prevent problems.

The first part of the week she wore the same clothes three days in a row. After I suggested a change, she has worn a different outfit three days in a row. I didn’t even say anything to her. I did notice some soiled spots on her slacks and cleaned them off.

Her short-term memory creates some surprising experiences. For example, yesterday after the afternoon lecture, I asked if she would like to get some ice cream. She gave me a strange look but said she would. When we arrived at the café for ice cream, she wanted something more substantial. I got her a pizza and got an ice cream for me. She ate one small slice of her pizza and couldn’t eat any more. She said she wished she had gotten ice cream. At dinner she told the server she wanted water to drink. In a few minutes before our drinks were delivered, she asked the server for a Coke. She had completely forgotten that she had already ordered water. Yesterday afternoon she asked me a question. Then she said, “”Of course, I won’t remember it 10 minutes from now.” I told her that was all right. I would give her the answer again.

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Two Surprises

Yesterday two things happen that are further signs of Kate’s recent decline in both short-term and long-term memory. The first occurred when I attended a communications committee meeting of the United Way. On the way over, the thought hit me that Ross Kilgore, CEO of UW, might indicate knowledge about Kate. When I saw him, that is exactly what happened. He asked me how she was “doing.” It was clear this wasn’t the usual inquiry. ” I responded that she was getting along well. I told him that we had been very fortunate and were grateful that we had been able to enjoy such a long period of time without any major disruption in our lives. I also told him that 2015 was the beginning of a new and more difficult phase. He expressed concern and told me that his mother had had AD. He also mentioned anpther couple who are going through the same thing. I told him I had spoken with the husband just the day before.  The significance of this exchange with Ross is that the word is beginning to get around. In most respects this is a relief. I don’t have to be as careful in guarding Kate’s secret as I have done in the past. I also don’t worry that someone is going to say something to Kate.

The second, and bigger, blow occurred last night at Casa Bella. We were there for their opera night. Our regular order is to split a single order of the veal piccata and then share one slice of amaretto cheesecake. Last night, however, I decided to order the piccata for Kate and try something else for myself. I expected her to say something about this change since we have eaten the same thing for so many years. She never said a word. From our conversation afterwards, I know that she didn’t notice that is what I had done.

The even bigger occurrence was that when the waiter asked if we wanted dessert, she asked him what they had. She has loved their cheesecake for years. It is one of her very favorite desserts. Even when she is trying to watch her eating, she and I split the cheesecake. Interestingly, the waiter mentioned the their bread pudding but not the cheesecake. Before Kate could order, I said, “We usually get the cheesecake.” This memory failure is significant because it is a clear indication that something of great importance to her over the years is now drifting away.

Although I have said since late fall that 2015 was going to be a different year, it is painful and anxiety inducing to experience the reality of this decline. I am now more clearly facing a major change in the nature of our relationship because so much of what is involved in a marriage involves the sharing of common memories. I don’t mean to suggest that they are all gone. We are quite a way from that I hope. Nonetheless, she is declining more rapidly than in the past.

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Challenges to Coordinating

We got home from Switzerland a week ago this evening. It has been a week for catching up. I have had only one meeting, and I have not pushed myself. Part of me says this is a good thing to do. The other part says it would be better to be focusing on other things than Kate and myself. I feel a slight sense of anxiety over her changing condition. I sense that it makes it hard for me to focus.

Our 52nd anniversary is tomorrow. Last night we went to a dinner that I considered our anniversary celebration. I had told Kate the day before that I had made dinner reservations. When I tell things I have planned, I know she won’t remember them, but I find it is a natural thing to do. An hour before we were scheduled to leave for the restaurant, I told her how much time we had. I believe I also reminded her where we were going to dinner. I know I had told her earlier in the day. In fact, I had mentioned our celebrating our anniversary, and she thought it was yesterday. I told her it was not until Sunday but that given other things we would celebrate tonight. When it was about 35 minutes before we were to leave, she was still in bed. I told her I thought it was time to get ready. She asked how much time she had. I told her 35 minutes. She said that was a lot of time and started to relax in the bed again. I asked if she knew what she was going to wear. She looked puzzled. Then she asked where we were going. I told her. I mentioned it was our anniversary dinner. She said, “Oh, is it today?” I told her that it was Sunday etc. This is just another example of the deterioration of her memory. Life is changing for both of us.

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Short-term memory problem

About 45-55 minutes ago I told Kate that we should dress for the funeral of a church friend before going to lunch. She had been outside working and was a mess. She thought my idea was a good one. When she had dressed, I told her that I thought we should go to Panera to save time before the funeral. She had completely forgotten that we were going to the funeral. She said, “Well, I can’t wear this to a funeral.” Then she went back to her room to change. Now we have even less time to dress before the funeral. It is now 1:07, and the service is at 2:00. This is the kind of thing that is becoming a daily occurrence. Even though I know that her short-term memory is going fast, it never crossed my mind to remind her.

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The Flight Home

Kate’s iPad’s battery ran down with a couple of hours to go. I let her use mine. Then they served a snack and she gave my iPad back to me. After the snack she wanted to work more jigsaw puzzles. She reached over to my lap and got her iPad. When it wouldn’t turn on, I reminded her that the battery had died. I gave her mine again. After a while she decided to try to sleep. Then she got her iPad and discovered the battery was dead.

As long as I have known her, she has avoided eating anything with coconut in it, but today they served coconut cake. She ate it without even thinking what kind of cake it was. I have observed similar things back home.

She has continued to have deja vu experiences while on the trip. At lunch in Bern yesterday, she noted having seen the photos on the wall.

Our waiter set two places across from each other at a table for 4. After I took my seat, she sat down diagonally across from me. When I mentioned that she might want to join me, she said, “We can each choose individually.” This is also something she has done when we are eating out at home.

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Big Week for Communications

Coming off the holidays, I have had a more relaxed scheduled. Perhaps that is what led me to take a number of steps to communicate with some people that I don’t regularly communicate with.

On Wednesday or Thursday, I sent a letter to Ken and Virginia via email updating them on our situation here. I have felt a need or responsibility to communicate with them much more than I have in the past. It has been over a year since we told each other about Kate’s and Ken’s illnesses. Since there are so few people who know, I have felt that I should reach out to them and make sure they know that I care about their situation as well as our own. I posted this exchange below. I trust it will lead to further exchanges in the future.

I also called Betty,my dad’s brother’s wife, to make sure that she knows. After a fairly lengthy conversation, I told her that I wanted to update her on things in Knoxville and thought that she might very well know what I am about to tell her. It turns out that she had believed that Kate was in the early stages of dementia. I thought that she might have suspected because of her times with Kate during the past few birthday celebrations for Dad. I was correct. She related a number of things she had observed, mostly during the days leading up to Dad’s 100th birthday.

Yesterday I called my former dentist. I have known for quite some time that his wife has dementia. His son, my current dentist, had suggested that I call his dad. I am not quite sure that I called to get tips or simply to connect with somebody going through what I am experiencing. Whatever the reason, I did find that his wife is much further along than Kate. That means he is feeling the need for support more than I am at the present time. He told me a little about his wife and his struggles. I told him a little about ours. At the end, we agreed to get together periodically. He seemed interested, if not eager, to do so. I told him I would take the initiative and call him to arrange something.

Finally, I had an hour-long conversation with our son, Kevin, yesterday morning. This one was initiated by him. He has been interested in staying in touch and doing whatever he able to do since I told him of Kate’s Alzheimer’s almost a year ago. During our conversation he mentioned once again the possibility of his making a trip to Knoxville, perhaps along with our daughter, Jesse, just to stay in touch with Kate. He really wants to do whatever he can to help her. I told him there is really very little he can do except to stay in touch with her. She loves to hear from her children and grandchildren. We specifically talked about a visit in March.

I have enjoyed the communications with these people and should make an effort to do more of it in the future. I do recognize that I am like my father in that I am energized by interaction with other people. As Kate continues to decline, I will probably need more of this to keep my spirits up. In my conversation with my former dentist, he said that he missed being able to have a conversation with his wife. He also noted that his social contact had diminished as his wife had declined. He noted that even her best friend only stopped by about twice a month. I have seen this with Dad. More importantly, I have noticed how this has happened in my contact with other people who are now in nursing homes or confined to their own homes. This means I will have to work hard to keep from becoming isolated. I hope that I will be as successful at this as my dad was.

In all my communications I have tried to convey that up to this point, Kate’s and my relationship has been strengthened and that we are enjoying ourselves despite the adjustments we are both making. Right now, for example, we are sitting in front of the fireplace. It is a cold morning, and I know how much a fire means to her; so I built one. This is not a great sacrifice on my part. I also enjoy it. During the past 3 winters, I have made it a practice to have more fires than we had prior to her diagnosis. It seems to comfort her. When she is comforted, I feel better as well. As they say, it is a “win-win situation.

I have been journaling while Kate works on her pictures. She also enjoys looking at them. Sometimes I think she gets more out of just remembering the past than preparing a photo book. As I have noted before, I do not expect that she will ever finish another one, but I don’t think that is what matters. It is wonderful that she has a project to work on in the same way that her work in the yard is good for her.

While I am writing, I should mention that this Thursday I took her to her monthly PEO meeting. She was to call me when I was to pick her up. I got the call around 11:30 while I was talking to Betty. When I got there, I noticed that all the cars were still parked on the street in front of the house. I went to the door and rang the bell. The woman who was hosting that day answered the door and said they were still meeting. I told her Kate had called me. She said she knew but that she thought Kate had forgotten that they hadn’t yet had their program; so I waited in the living room until they were through (about 20-25 minutes). This just an example of the many points of confusion that occur each day.

On the way home from PEO Kate told me that she had volunteered to have the meeting at our house in April 2016 and was going to give the program. She plans to do a program on the wild things we do in our youth. She is going to tell about our trips with our children to Spain and France and to Colombia. The first thing I thought of was what she would be like when the time comes. It wasn’t easy for her to host and do the December program, but by April 2016, I can’t imagine that she will be able to do it. Now I will consider whether to alert the program chair so that they can be prepared with a backup.

Short-term memory continues to be a big issue. Two weeks ago, perhaps less, we went to see Into the Woods. She saw a trailer for the movie this week and said, “that’s one that we’‘ll have to see.” She had completely forgotten that we had seen it.

As I have been writing, she asked me if I knew anything about The Judge. I told her that I did and gave her a little information. She had no recollection that she had asked me about this earlier this week. I didn’‘t tell her we have seen a trailer for this movie at the theater at least two times.

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Two Examples

Each day brings numerous examples of AD. Here are two. Yesterday afternoon I arrived home from visiting Dad. When I came in I heard Kate on the phone. She had her computer in her lap. I thought she might be handling some details concerning our neighborhood directory for which we requested updates yesterday afternoon. I busied myself with a few things on my computer. When she hung up, I discovered that she had forgotten about a commitment she had made to prepare a flyer announcing an annual fundraiser for her PEO chapter and that she needed to have it. She ended up stressed, but together we got it done.

This morning she has her PEO meeting. I planed to drive her and told her we would leave around 9:30. Around 8:00 she was dressed in her yard clothes and said she was going out to take the yard trash to the curb for pick up this morning. At 8:45 after I had dressed for the day, she had not come inside to get ready. I went out to let her know it was time to come in. When she came in, she asked me if I could get the second wheelbarrow filled with trash and take it out. I hesitated and said I would have been happy to do it if she had asked me before I got dressed. Of course, I went out and emptied the wheel barrow on the curb. My point is that she loses track of time so quickly and then doesn’t do the things she originally started to do even though may have been the more important things she wanted to do.

Because of the flyer for PEO we had a late dinner – almost 9:00 at Hathaway’s. While there she commented that she is relying more on me for help than in the past. I told her I understood and recognized that I find myself trying to take more initiative to do so but that there are times when she wants to do things herself. She acknowledged the situation. We both then indicated that we thought each of us is handling things pretty well.

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More Happy (many) and Sad (some) Moments

I find that my own mood which by nature is upbeat is heavily influenced by how my dad and Kate are doing. I have had a number of very good days with Dad since returning from Chautauqua. I continue to enjoy life to its fullest with Kate. On the other hand, I do notice things happening with her that make me sad. One thing that does both is her working in the yard. She loves to get out and prune and plant. She continues to buy new plants even though we are now approaching the end of the summer season. What makes me sad is that I believe she does this because it is the only thing that she is able to do without suffering any frustration. It seems like just about everything she tries to do on her own ends up with a problem of some sort. I must admit that I also have a tendency to get irritated when she neglects things that she might do in favor of working in the yard. Then I stop and realize why she is doing it and feel sad that she is left to this limited area of activity. Then I feel happy that she has something like gardening that I hope she will be able to do for a long time to come.

Yesterday afternoon I arrived home just as an upholsterer was about to load all the cushions from the patio furniture into his truck. I told him that he was supposed to be getting the cushions from the kitchen, not the patio furniture. Kate had pointed him to the patio cushions and forgot completely about the cushions in the kitchen’s bay window. Today when we went to a shop to order new cushions for the patio furniture. Our decorator asked if the upholsterer had come by. Kate told her that he hadn’t. I corrected her. In a few minutes she told me she was glad that I had come in at that time. She said she had already embarrassed herself by forgetting the upholsterer had come yesterday.

Another sad moment came the other night as we were driving somewhere to dinner. I asked her how she was, and she told me she felt “secure” when she was with me. This made me feel good that she knows she can depend on me; however, it made me feel sad that she is insecure in so many situations. She really wants to do things independently. In fact, she sometimes tells me that she can do something that I took the initiative of helping her with. As I indicated earlier, when she starts on something it becomes a problem for her. Here is one example. She wanted to do send an email to a friend from Denver  who is coming to visit us next week. She could never get around to doing it. I ended up writing the email and sending it from Kate’s computer so that our friend would see it came from Kate and not me.