Posted on

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.

Posted on

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.

Posted on

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..

Posted on

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.

Posted on

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.

Posted on

The Challenges of Everyday Life

Last night after leaving the visitation for a church friend, Kate and I planned to meet at Panera Bread. This followed a terrible thunderstorm during the visitation. As we came back toward Panera, she and I got separated (we were in separate cars). The power was out along the street leading to our home. I went home to wait and then went back out to look for her. Before going too far, I got a phone call from Kate saying she was at Chalupas; so I went to join her. I discovered that she had thought I had said we would go to Chalupes if Panera was not open (which I had not said at all). When I got there, she told me she had accidentally gone past the restaurant and realized it sometime down the road and had to turn back. In turning around she had run over a curb and thought she might have damaged the car (though I don’t see any signs of damage).

Over dinner she told me she is beginning to lose confidence. I assured her that the confusion of the night and weather conditions made it difficult to see (which was true) and that it could have happened to anyone. She understands that, but I could tell she still thinks part of the problem is AD. She is seeing more and more signs of it as am I.

Posted on

Eight Months Since Diagnosis

This Wednesday it will have been 8 months since our meeting with Dr. Reasoner when she diagnosed Kate with AD. We have both adapted well, although we continue to have our moments of melancholy. I am convinced, and I believe Kate is as well, that she is declining more rapidly than we had hoped given that Dr. Reasoner described her condition as early onset AD. There are little things like operating the TV that seem to be more confusing than in the past. She has to ask me to help her with many routine tasks. Yesterday, she asked me how to operate the TV in our bedroom with the new DVD player that permits us to stream movies from Netflix. I think she would have had trouble with that without the AD. Then after I had shown her, she asked if I would show her how to turn on the TV in her office. Before I could do that she had done it herself. I can’t recall the exact conversation but in the latter part of the process of showing her how to operate the TV (which I know she will not remember) she said, “Well, remember I do have Alzheimer’s.” I said that I know but sometimes forget. She said, “Most of the time I do too.”

There are 2 other recent illustrations of her asking for help. She misplaced her shovel someplace outside and asked me to help her find it. We walked around the flower beds in the backyard. In a moment, she saw the shovel right after I had walked by it and didn’t notice it.

Yesterday afternoon she asked me if I would help her find a new plant that she had purchased on Saturday but couldn’t remember where she planted it. I walked around the flower beds again and found it. A little later she asked me where the plant was. I told her, and she remembered.

These are the kinds of things that don’t get noticed by most people since normal interactions involve such routine things that she can do almost reflexively. I think this is fortunate because I don’t want a lot of people to know about her condition, and, as I have mentioned before, she doesn’t either.

The fact that her deterioration over the past 8 months is noticeable makes me concerned about the future —  for example, a trip to New Zealand in the winter of 2013. I am beginning to think that we will want to make the most of 2012. I don’t really think we will have to stop traveling after 2012, but it will be different if her condition continues to decline at the present rate.

I do find that I feel a greater need to be with her and to enjoy our time together. We both enjoy snuggling in bed and taking moments together with a glass of wine out on the patio. Without saying it, we both want to make the most of the time we have remaining. I am hoping it is longer than I am presently thinking. I recall a friend’s saying a good while after his wife had been diagnosed with AD that they were able to enjoy conversations together.

Posted on

Ongoing Challenges and Frustrations

No need to go into many specifics, but it is clear that Kate is having more difficulty remembering things. This usually involves where she leaves her iPhone, her purse, or an item of clothing. What I find more disturbing is that her organizational ability is declining. Last night we sat outside for a while and then got in the spa. She commented that she is trying to concentrate on those things that don’t require a lot of thought. Anything that requires her to put together a sequence of things seems to be a problem. That would include getting dinner ready, getting things together for a meeting like PEO, and especially the family album. I can hardly wait for her to finish. For a while I thought it was good that she had something like this to focus on. She loves it, but she faces many frustrations. I am confident that a good bit of the problem involves her condition, although certainly working with a new piece of software brings its own problems.

Right now the plan is that she will not be working on another album with her brother. It is too stressful for her to coordinate with another person. She is going to work on albums for our own family and grandchildren. She has already started getting organized for these by going through many of our old photos and arranging them into categories. There will be no timeline which will be a good thing. Even though her brother has been very understanding, she feels pressure to complete the project ASAP. I am hoping the next 2 weeks will end her part.

I should also mention that I have noticed her own discouragement, although when I used this word last night, she corrected me. She felt that was too strong an expression for her current state. Nonetheless, she sees all the little things that are signs of her slipping.

I forgot to mention that last week Kate told me about the University of Tennessee women’s basketball coach who at 59 has announced that she has dementia. That provided an opening for me to ask if she had thought about when and how she might tell our children or others of her diagnosis. She said she felt she wanted to tell the children but that she saw that as something that was a year away. I suggested that, because we were not with the children very much, they would probably not suspect anything for a while. I then asked her what she would want me to do if either of the children asked me about her. She said she would want me to tell them. Actually, I don’t think she was that specific. I think I would probably try to open the door for her to tell them.

I also asked her what she would want me to do if someone outside the family asked me about her. She said that was another story with the clear implications that she wasn’t ready to announce.

She also indicated that there would be no necessity of a more public announcement. She feels, and I agree, these are things that are done by celebrities. We both are inclined, I think, to let this evolve naturally without having a defined time to tell others. I believe this is the way that most people handle it.

Posted on

Reflecting on the Past and Looking Ahead

Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.

This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.

I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.

Posted on

Are We Imagining, or Is She Getting Worse?

Yesterday Kate and I both recognized signs of confusion and inability to do everyday things. She couldn’t find her shirt that was on the back of a chair in the kitchen, she couldn’t find the power cord for the computer, she couldn’t handle some minor printing issues. At one point she said, “We know I’m getting worse.” I tried to comfort her, but there are aspects of this that I know are so personal that I am unable to relieve her burden only ease it.