Frustrations of Everyday Life

Tuesday was a bad day. I mean in the sense that Kate felt depressed about her forgetfulness. To start the day, I told her to watch the dishes as she took them out of the cabinets because I noted that when I emptied the dishwasher, there was at least one dirty glass. She felt bad knowing that she had put something dirty in with the clean dishes. I sensed immediately that she was hurt and tried not to make a big deal of it.

Shortly thereafter we took her car to Firestone to get a new tire because one of hers had gone out the day before. The man at Firestone noted that the wheel rims around the tire had been scraped and said we could blame that on me. Of course, she knew he was really talking about her. After leaving Firestone, I told her that we couldn’t have lunch together because I was planning to go see Dad at noon instead of late afternoon as I usually do. I was doing this because we were planning to go to a 5:30 movie at the Olympia. I could see that she was depressed; so before leaving for the office, I told her I had changed my mind and that we could have lunch together and suggested Applebee’s.

The final blow came before we went to the movie. She came home with her laptop that had been repaired by the computer store and told me that she dropped it. She said, “I cause most of my own problems.”

We went to the movie, a documentary about Bill Cunningham a longtime photographer with the NY Times. She and I enjoyed it and then went to a light dinner at Mojito’s. That made the day end on a good note.

On another front, Dad was more alert on Tuesday and Wednesday afternoons, especially yesterday. The invitations to his 98th birthday party were being delivered to many folks yesterday, and I took his invitation to him. He was like a child – very pleased and showed it to a few people at dinner.

Getting Lost and Frustration

Life has been a little hectic lately; so I sometimes find it hard to jot a few notes at the time I want to. Here are a couple of things from the past few days.

Last Wednesday Kate had a routine appointment with Dr. Reasoner. I had asked her if she wanted me to go with her. She said she was fine. What she didn’t consider was getting lost. I told her how to get there, and also told her to use her GPS. We had eaten lunch across the street from my office, and I walked back to the office while she went to the doctor. A short time later she called saying she was lost. I asked where she was, and she was able to tell me she was “by” the University of Tennessee Medical Center; so I knew she was close. However, as I pressed, she couldn’t tell me more precisely where she was. I got out my iPhone and opened the GPS. Between her telling me about street signs and my looking at the map, I saw where she was and guided her step by step to the building.

The next day she was going to Dad’s condo to dry clothes since our clothes dryer is not working. Although she has been there many times, she got lost and had to use the GPS to get there. She was headed there going north and went past the turn and found herself a few blocks away where she turned right. It was a few blocks later that she realized she was lost and needed to use the GPS.

On Saturday when she had forgotten or lost something, she said, “”At least now that I know that I have Alzheimer’s, I have an excuse.” She is having many experiences where she can’t recall where she has put things, where she is supposed to go, what time she is going someplace, or that she is going someplace at all. I am trying to remind her of some things. I do best at reminding about social engagements. I am not doing well in making sure she remembers to take her purse with her from a restaurant, etc.

Yesterday I met with the communications committee of the United Way. I sat next to a former client and learned that his wife has dementia. I asked how long they had known. He said a couple of years. Then he said it had been less than that. I asked if she was aware. He said that the doctor had told her when he gave her the the MRI diagnosis but that she does not seem to know or pay much attention now. He indicated she is happy and that they are getting along all right. The conversation, however, was sobering for me in that it added fuel to my existing fears that in 1-2 years we’ll be further along on this journey than we had hoped.

One final thought. A few minutes ago Kate and I were making plans for the day when she said, “Just tell me what to do.” This is something she says frequently, and I am trying to learn not to throw too much at her. My interpretation is that she is facing so much frustration over losing things and not remembering things that it is too frustrating for her to attempt to rationally work out a plan for almost anything.

Symptoms from Kate and Dad

After lunch this past Saturday, Kate went to Lavender, her favorite dress shop. I stayed at home. As I was on the way to see Dad, I got a call from her. She asked where I was and sounded disappointed when I said I was on I-77 almost to Dad’s nursing facility. I asked what she needed, and she said she couldn’t find her car. I asked her a number of questions trying to help her remember but took an exit and went to meet her at my office. When I was a couple of blocks from Lavender’s, I saw her car in the parking lot of a restaurant. When I picked her up, I told her I had good news that I had found the car. It was only then that she recalled that she had gone to a shop down the street looking at clothing to take on our trip to Africa. She was clearly discouraged by this lapse.

Although I started this document with Kate in mind, I am going to make an observation regarding Dad as well. In many respects, his condition plays a significant role in my relationship with Kate and how she feels about things. For quite a while I have gotten phone calls from Dad in the middle of the night. I am not alone. He sometimes calls my brother as well as several of his friends. He told me that he had called one of his buddies just after midnight last week.

At any rate, Dad called me at 2:33 yesterday morning. He told me that he was in West Palm Beach at the Shrine Club. I suggested that perhaps he had had a dream, but he couldn’t seem to hear well which is pretty normal. He placed 3 calls to me around 5:25. Each time he left a voicemail message saying that I didn’t need to come get him that he was at his nursing home.

On at least 2 occasions, he has called to let me know that he thought this was the end, that he was completely blind, and that he had had a wonderful life and wanted to thank me. Each time I have tried to reassure him and told him I was going to plan on seeing him later in the day. When I finally see him after these calls, he always remembers making them and even seems to take some pleasure in them.

For Kate, I am sure this causes some pain as well as amusement. I know she must be thinking of what she is going to be like as her AD progresses.

An Emotional Moment

I am not sure, but I think I have seen signs of Kate’s becoming more emotional that may be linked to AD. At the moment, I cannot recall any past incidents that have made me feel this way. Yesterday, however, she called me while I was visiting Dad at Life Care. She asked if I could come home right away. I told her I would and asked what was up. She told me that an orange cat that has been around our neighborhood recently had been found in the street and that she had taken the cat, who was warm but appeared to be dead, around to our patio. Before I got home, she called me once again to ask how long it would be before I got home. I told her I was just turning on to our street and would be there in a minute.

When I got home, I found her sitting on the loveseat on the patio holding the cat in her arms just as if she were holding a baby. She was not wildly emotional – just sad to have lost the cat that she had recently befriended and to which she had felt attached. I told her I thought we might contact the neighbors across the street to see if they knew whose cat it was. They did. It belonged to our next door neighbor. We called and left a message, and he came over when he got home. We had put the cat in a basket in our garage.

Even when we went to bed, she was still moved by the loss. This may have nothing to do with AD, but it seems to me that this was a somewhat different emotional behavior than I have observed in the past.

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.

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.

Forgetting Appointments and Responding with Humor

I took a call from Kate about an hour ago. She was calling from the hair dresser’s to tell me that she had locked herself out of the house and would need to stop by the office to get a key. She also said that she had forgotten her hair appointment again and that Evelyn’s daughter had had to call her to come in. Kate has mentioned before that she thought they suspected her AD. I suspect ongoing behavior is confirming it.

I find it interesting that she is able to take a humorous approach to this instance of forgetting. It makes me think of my dad who is responding similarly. I feel like this is a further sign of the progression of the illness that instead of expressing frustration, she is able to laugh about it and make no effort to hide her forgetfulness.

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.

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 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.

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.