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Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.

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Kate Is Discouraged

Last night Kate and I had a good but very saddening evening. When I got home from seeing Dad, I sensed that she was upset. She was working on our pictures from Vienna. She is making an album similar to the one she and her did for the her mother’s family. I asked her if she would like me to get us a glass of wine and go over what she had done so far. She accepted enthusiastically.

I got a glass of wine for each of us, and she continued working for a short time while I sat on the sofa for her to bring her computer to me. She started to express her frustration. She simply can’t remember names or events that she needs for the album. She had called me twice while I was with my dad to ask the names of two operas we had seen in Vienna. She was still having trouble with that and where we had seen them.

This led to a brief, but much a longer and honest, conversation on how she feels about her AD. She told me she wishes she would rather have cancer, a heart problem, or anything else but AD. She talked about the frustration she has about not being able to remember anything. She talked about her anger over my spending 2 hours a day with Dad when she needs me. We talked together about my spending more time with her. I told her that I had already been thinking that the change in our office arrangements might be a good time for me to spend less time at the office. She then mentioned the possibility of her coming to the office to be with me because she feels she needs to ask me so many things. She seems to feel lost when she is alone. At the same time she talked about her continuing ability to do things. She mentioned specifically that she often finally figures things out even if she struggles to do so.

I have said it before, but I now want to SHOUT it. People say that at least the person suffering from AD doesn’t know it. How wrong this is. Of course, in the much later stages that is certainly true. However, there are years before that when the person does know something is wrong even if the condition has not been officially diagnosed. In a recent conversation, she said, she wasn’t so sure now that she was glad to know.

At any rate, she can see herself declining. It is not just my own observation. Still, I don’t think many, or any, people other than I know her situation.

I continue to be sometimes feeling panic as I see that we are moving toward a time when our lives won’t be as idyllic as they have been. We still want to travel, share good times with friend, etc. I feel like that may be affected within the next year or two. I am going to have to work hard to plan things in order for us to do as much as possible. This comes at the same time that I have to worry about the future of my business and taking care of Dad.

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Where Are My Keys?

I suspect it may be clear from what I said last time that I am going through a sad time as I think about Kate’s decline and as I imagine where we will end up.

Today I made two presentations to a client group just outside Knoxville. As I was leaving, I got a phone call from Kate saying she was at Bojangles and couldn’t find the key to the car. I told her to sit tight and went to meet her with another key. When I got there I looked for the key and found it in the console. She didn’t remember putting it there, and I don’t think she had actually gotten out of the car. Thus, it would not have been hard to find for someone else, but with AD, a lot of things are difficult.

I hated to leave her, but when I got home, she said she had gotten along all right. She was having trouble with email, and I helped her. We went to dinner at Altruda’s, and she has gone to bed. I went to the bedroom and she said she had forgotten to take her evening medicine. I got it for her. After she had taken it, she said, “I’m glad you are back.” This is the kind of thing she could have said to me in An earlier time, but I think we both read more into it now.

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More Discouragement

Last night we had a nice evening – a fire, wine and cheese and olives, and good conversation. Kate indicated that she was discouraged over her decline. We both talked about making the most of the time we have together. We never talk in terms of specific amount of time, but I think she believes we have more time than I do.

This conversation was brought up by my showing her a video on Michael J. Fox and Family Ties and a song, “At this Moment.” I first heard this on the show and loved it but didn’t know the name. Periodically over the years I have thought about getting it. Yesterday I went to YouTube and found a part of the episode that included the song and then downloaded it from iTunes.

I put it and 24 other songs on a playlist on my iPhone and played them while we talked. The last song was a repeat of the first one I played, “At this Moment.” She had no recollection of the song when it was played again. Even though I had played it a couple of times and she indicated she liked it as well. That is when she said something about being discouraged.

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Stressful Times

We’ve had a couple of stressful weeks following our trip. We still have to finish up an irrigation leak in the front yard that we identified before leaving, Kate got a cold that has lasted until the last day or two, her computer went out, and we bought another, Dad’s heart rate dropped to 30 and he went to the Heart Hospital for a couple of days, business is off and I have been deciding whether or not to close entirely, we’ve had a buyer for our building and settled on a contract, etc.

Kate seems to have felt better this week although she was a little upset with herself this morning as she prepared to get ready for a PEO Founder’s Day luncheon. She couldn’t remember the exact time of the lunch and waited too late to find someone at home who could tell her. Then she lost a magnet for the back of her PEO pin. She found it but said, “”I’m a disaster.” At 12:06 she asked me what time it was. I told her. and she thought it was earlier; so it meant that she was late for what turned out to be a noon lunch. I drove her which reduced her stress and told her I would try to take her places whenever possible.

The good news is that selling the building will take a little financial pressure off of us. In addition, Megan figured up the committed projects and our part of the income. It turns out that we almost have everything covered for the year. All we need is another 4-5 average projects to get that; so it looks like we will make it another year. That’s good because we agreed to sign a one-year lease with the new owners of the building..

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One Year Since Diagnosis

One year ago today, we met with Dr. Reasoner to receive the news that Kate’s results showed she has AD. During that year I have noted apparent declines in her memory, sometimes not quite sure whether the changes were real or not because they can be so subtle and similar to what we all do. At this point, there is no doubt that she has declined in a perceptible way.

A week ago last night we got back from our trip to Africa (Tanzania) with OAT. It was a great trip that we both enjoyed far more than anticipated. On the other hand, I felt as though I had to be watching and helping her every step of the way. I am having to assume more and more responsibility for everything.

She continues to get along well in normal interactions with people. I don’t think anyone on the trip would suspect her condition. Neither do I think our children or close friends suspect. I do sometimes wonder about her best friend, because she and Kate have had so many opportunities to talk and socialize together.

The most distressing thing to me is that Kate is so frustrated over her inability to do many things that she would have been able to do before. In the last 2 days she has commented that it’s the little things that bother her the most. From my perspective that would include things like remembering how to charge her cell phone or how to deal with a technician on the help line. She has great difficulty following a set of instructions. They simply overwhelm her. In our personal conversations when she indicates a problem and I automatically try to explain, she stops me because she can’tunderstand.

The whole situation makes me recall times when I hear people say something like, “Well, at least she doesn’t know.” I heard this when my mother was in the early stages. Kate is keenly aware that her memory is declining. She sees how much of her time is spent looking for simple things like car keys, her purse, etc.

It has gotten so bad that I feel I can’t depend on her to do anything. I either have to do it myself, or follow her to see that it is done. While on the trip, she picked out a bag to bring back to Doris. We bought it along with a couple of other things. Then after eating lunch (this was in our lodge) she went back into the gift shop. I saw her looking at the bags again and asked what she was looking for. She told me she was looking for a bag for Doris. She had not remembered buying the first one only 45 minutes to an hour earlier.

She is clearly discouraged. She is not sleeping well. I am not sure, however, how much is a result of jet lag and how much is anxiety over her condition. I think it is some combination of both.

Over the past year, I have cited specific instances of her memory failure. I suspect I may do less of that as so much occurs that I can’t recall the instances without writing things down at the time, and I find that impossible.

We enjoyed the Africa trip so much and are looking at possible trips to New Zealand, the Galapagos, Russia, and China. I fear, however, that our travels may be heavily influenced by her condition. Right now, for example, I am thinking of taking an OAT trip to New Zealand next January (2013), but I wonder whether or not that will be a good idea. I do believe we could do a cruise, but half of the time is spent on the water. I will wait until later in the year to see how things are going.

I need to be honest about my own anxieties. This is a very trying time for me. My business is so bad that I had to let Regina go before Christmas. She had been with me for 28 years. Now I am wondering how long I can keep the doors open. Dad requires attention. This week he spent 2 days in the hospital. I am spending less time in the office. I need to spend more time with Kate. It is a difficult time. I am not sleeping as well as I used to.

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Celebrating Christmas

The past few weeks have brought with it the usual stresses associated with Christmas as well as special ones related to Kate’s Alzheimer’s. Here are some of the key things that happened.

First, she started late with her Christmas shopping and then had great difficulty ordering online. She wanted to order 1 Vikings and 1 Falcons Pillow Pets for the twin grandsons. She ended up ordering 2 Vikings and having them shipped here which might have been too late for us to take with us. I ended up making a new order with delivery to Memphis.

I had given her instructions that we would give Kevin and Rachel, our son and his wife, a check for Rachel’s birthday as well as Christmas presents for the whole family. She ended up writing two checks for a total of less than we had agreed upon. Neither arrived for Christmas.

We had bought 3 gift cards to a yogurt shop for their children, and she misplaced one of these. Rachel had to arrange another. She didn’t get the other 2 in the mail early enough to arrive for Christmas. She also tried to order Sonic gift cards for the grandchildren but wasn’t able to do so. I ended up doing it for her, but it was too late to arrive for Christmas.

She worked 2 hours trying to order a TCU shirt for our oldest grandson but was unable to get it done. I did this for her.

On Christmas morning in Memphis with our daughter’s family, we opened presents as usual. We also took a break after opening some of them and returned to opening the rest later. We had purchased a gift card from a local restaurant for Jesse and Greg. When she hadn’t given it to them, I suggested she do so. She wanted to hold off. Then later she told me she wanted to do it “tomorrow.” That evening after our Christmas dinner, she told us (Jesse, Greg, and me) that she thought we should just wait to open the rest until tomorrow. I told her we had already opened all the presents. After we retired to our bedroom, she told me she had been thinking all day that Christmas was tomorrow. I could tell that she was troubled by this recognition of her mistake. Recently she has seemed more troubled by her Alzheimer’s though she doesn’t say much.

Last night our son, Kevin, called to say that most of the things that we had purchased had arrived. In the process of talking about things, he asked if we had opened the CD he had given us when we were in San Antonio for Thanksgiving. I told him I didn’t recall a CD. We told him we would look for it. This morning she found it while taking down our Christmas decorations. He had given it to Kate and hadn’t told me about it. Of course, she put it in the tree and forgot it.

We went to a movie last night, and she seemed especially pleased for us to be going out. I found myself a little down last night, as well. In fact, I woke up around midnight when I received a phone call from Dad. I couldn’t go back to sleep. I couldn’t get my mind off what I believe is the fact that she is declining faster than I had hoped. Furthermore, I think she is feeling the same way but not saying anything. I can’t help wondering about what things will be like next year and how we will be affected by her condition. I am feeling the same compulsion to be with her and hang onto her tightly.

All this comes at a time of great stress for me at the office. I had to let Regina go after 28 years, and I listed the building with a realtor just before Christmas. Furthermore, I see no signs of immediate improvement.

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A Successful Dinner Party

This past Saturday we hosted Kate’s PEO chapter for dinner. We had 23 including ourselves. Kate had worked for weeks (since just before Thanksgiving) getting the house ready which meant mostly decorating. I had encouraged her to ask a friend who is a decorator to help her, and she said she would but wanted to start by herself. She never did call her, and the house looked beautiful for the party. She enjoyed the task and had plenty of time to arrange and re-arrange for the weeks preceding the event.

To make things as easy as possible, we decided from the outset that we would get the entrée from Altruda’s, a local Italian restaurant, one of the other members would prepare a salad, I would get the wine, and Kate would prepare the dessert. As we got down to the wire on Thursday, there was still a good bit of work to do. I tried to gently hint that Kate prepare the desserts (flan and chocolate mousse) during the day on Friday. Time got away from her, and she still hadn’t started the desserts before we had to leave for a friend’s 80th birthday party. When we returned, she did the mousse and decided to wait until the next morning for the flan.

She took a long time to start and when she was preparing the mousse and the flan, she got confused regarding the specific ingredients and whether or not she had them on hand and whether or not she had already put them in. At one point she sent me to the store for condensed milk. When I returned home, she discovered she had it. Similarly, she said she was short 16 oz. of cream cheese. I went to the store. While I was gone, she found it.

Late in the day, I indicated that this was quite a job and that I had hoped to spare her the stress of doing the party. Her response was that this was probably the last one of these events she would do, and she REALLY wanted to do it. It broke my heart, and we didn’t talk about it again until the next day. It went off well, and I told her she could be very proud. I wasn’t just saying this. It was a terrific event.

One follow up is that she cannot find the power cord to her computer. I am guessing that when she was putting things away before the party, she put the power cord someplace and can’t find it. She asked me to help her locate it last night, but neither of us had success.

This morning after my walk I went into the bedroom where I saw her changing the time on her clock. She was concentrating intently. I wanted to help but let her do it herself. I think I did the right thing because a little later her hair dresser called to postpone today’s hair appointment. Kate worked a good while trying to change the appointment on her iPhone. When I offered to help, she said she wanted to do it herself. She told me she would ask if she wanted me to help. As I have noted before, I think both of us are wondering what things will be like a year from now.

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Getting Lost is Commonplace

Today was Dad’s Kiwanis Club luncheon. I assumed that Kate would go with me to pick him up. I also knew that would require more of her time which is precious since she is trying to get ready for my Sunday school class party at the church tomorrow at noon. She also has her PEO Christmas dinner at our house on Saturday night. She wanted us to go in separate cars. I hesitated knowing that she has both a time management problem (she runs late) and that she has no sense of direction. She assured me that she knew how to get there. I consented and told her we were to gather at 11:30 with the meal to start at noon. She had not arrived when the meal started. I slipped out at 12:15-12:30 and called her. She said she thought she was almost there. We hung up. Then she didn’t arrive until after 12:30. By that time we had finished our salads and the entrée had been served at our table. She indicated she had asked three different people for directions and that they had been very helpful.

When I got back home, she was working on her family album. She told me that she had ordered the meal for her PEO dinner on Saturday. She said that she had ordered lasagna and a chicken dish over spinach pasta. I reminded her that we had decided to have just spinach ravioli. She asked me to call back and handle the transaction.

Monday night was the December meeting of our music club. I was putting my shoes on in our bedroom when she walked in, and I said something about her clothes. She hadn’t realized I was in the bedroom and was quite startled when I spoke to her. I started to apologize and she broke into tears and didn’t want to talk about it. These are two common patterns. First, she is very skittish. I try to be very careful about announcing when I come in the house to prevent scaring her. The second pattern is her not wanting to discuss anything when I want to discuss the situation. She just wants to drop it.

Yesterday we had lunch together at Applebee’s. When we left, Kate said she was going to do a little shopping. About 3:15, I was about to walk out the office door when I received a call from Kate. She told me she couldn’t find her car. I asked where she was. She told me, and I told her I would be right there. When I got there, we decided it best for her to get in the car with me and for us to drive around to find the car. I asked her where she had been. That led to my driving along the street where she had been shopping. As we drove, I saw her car in a parking lot. I turned around and went back. She had absolutely no recollection of having left the car there even though that would be the most obvious place to park. Before we went our separate ways, I suggested that in the future she might try using her phone to take a picture of where she parks to help her find her car. That is something I do when I park in a parking garage. Of course, I realize in order for that to work, she would need to remember to take a picture.

Last night we talked about her experience and very briefly about how she was feeling. She acknowledged feeling discouraged and angry. She feels that she is too young to face this and that her lifespan has been unfairly shortened.

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Moments of Discouragement

Yesterday was a good day for me. I had taken my dad to the memorial service of his Kiwanis friend at First Presbyterian where we both saw some of Dad’s Kiwanis friends and others we knew including someone from Dad’s writing class. Afterwards we went to Ruby Tuesday where Dad had a bowl of clam chowder and Buffalo shrimp. We both had a cup of coffee. I thought it was a special time and enjoyed every minute. I called Kate to say I was leaving the restaurant to take Dad to back to his place and asked if she would like to go with us and then we could have dinner after that. She sounded down but indicated she would like to go with us.

We dropped Dad off and went to dinner. The meal was good, and it was a special time for us. The day ended on a high note.

A week before Thanksgiving Kate had a painful day. I could tell she was discouraged when I got home. That evening we looked over a photo album that her father had put together. We both enjoyed going through it and reminiscing. When we got in bed that night, she said, “This is the best I have felt all day.”

Friday night before Thanksgiving we went to Theater Knoxville. Just before the play started, she asked me for cough drops. At intermission she couldn’t find them. She finally found them in her purse. She said, “Welcome to my day.”This is a very typical experience nowadays. It is always something that is misplaced – keys, purse, wallet, power cord for computer, etc.

On Sunday night before Thanksgiving we stayed in a Residence Inn in Houston.  We were there to celebrate the holiday with our son, Kevin, and his family. She said she had forgotten her tooth brush; so I got one from the front desk. While preparing to leave, she found the one she had. She said, “Honestly, Richard.” I have a tendency to think that when she discovers something that was misplaced, she would feel better knowing that she had not done something strange with the item. She had simply overlooked it. On balance, however, I can easily see that she knows that the forgetfulness is getting worse and it bothers her a great deal.

It is not simply forgetting. She also overlooks things a good bit. For example, yesterday she told me that she couldn’t print because the printer cable was missing. When I went in to see, I saw that the cable was connected although it was mingled with a cord from a lamp.