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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.

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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.

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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.

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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.

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Frustrations at Chautauqua

We arrived back from Chautauqua late Saturday night after a great week. I do think it was a week of some frustrations for Kate and arousal of my concerns for her. She repeatedly misplaced things and forgot things. It makes me wonder what things will be like when we are here next year. I still want to be hopeful that we have a long time together before we enter the more serious stage of the disease, but I just don’t know. It will be interesting to see how we do in Africa the first two weeks of January.

The funny thing is that I had intended to write this note a couple of days ago and now find that I am unable to remember the specific instances of memory problems she encountered during the week. If I think of them later, I will come back.

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Being Directionally-Challenged is Worse for a Person with AD

We are in Jamestown, NY, having flown here (Buffalo then car to Jamestown) for our annual trip to Chautauqua. We will meet one of Kate’s PEO sisters who lived in Knoxville for a number of years. I thought of a couple of things. First, I did not mention that on Thursday of this week (7/28/2011), I was at lunch with someone from our church when I received a call from Kate. She was lost. She was in the car and had intended to drive to a neighbor’s house which is just around the corner from our house, but she didn’t remember exactly where it was. She wasn’t far from home or our neighbor’s house when she called. She seemed in a panic. She was able to tell me the street she was on.  She followed my directions and got there. Later I learned that she was the first to arrive which relieved her.

Kate is directionally-challenged; so it is not surprising that she could get lost; however, since she was just going a very short distance to a location near where we have lived for 25 years, I take this as another indication of her AD.

I don’t know that I have commented on this before, but we have gone through numerous such experiences over the past couple of years. On one occasion she missed a PEO meeting she was going to because she traveled around so long she was embarrassed to show up. She just called to say that she could not make it.

I should also mention that Kate has been working on a one-page flyer to mail out to PEOs in the Knoxville area inviting them to a book chat with an author. She has had this essentially finished since Monday or Tuesday but has had to make some edits based on suggestions from a sister PEO. The point is that this is a small task, but it has taken her an inordinate amount of time because of simple mistakes. She has indicated losing a number of things that I think are text boxes. I know that the problems she has had with the family album she is working on with her brother are largely a function of problems like this. She doesn’t remember how to do things, how to correct things, and generally digs herself in deeper as she works. It is like 2 steps forward and 1 step backward which makes her very frustrated.

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Signs of Dependence

This is really an addendum to yesterday’s post. Last night I remembered one other thing that I take as a sign of the progression of Kate’s AD. Several times lately she has seemed uneasy when I am at Dad’s, and she encounters problems working on the computer. This is the first sign I have had that she looks to me as her security. At this point it is minimal, but I can’t help remembering how Mom never wanted Dad to leave her presence. I have heard a church friend  say the same thing about his wife. It makes me think more seriously about how I will handle work at the office as the AD gets worse.

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Challenges of Everyday Life

When I arrived home from visiting Dad last night, Kate was on the phone with a person from tech support for the software that she and Ken are using for the the family album. When she finished, she seemed especially frustrated and said that she would be glad when this album is finished. Then we went to Chipotles for dinner. I commented on her frustration and asked if she had been able to recover a file that she had lost. She had not. In an effort to understand and possibly help her, I asked what she had tried to locate the file. She said she didn’t want to talk about it. This has become a very common pattern. She doesn’t understand what she is doing and can’t remember things she has done; so she is unable to communicate them to me which makes her more frustrated. I apologized for asking and said that I understood it was a problem for her, but I found myself reflexively trying to solve the problem.

All of this is back to what I wanted to say today. She finally said this had been a particularly depressing week. When I asked if there was anything particular that had happened, she just said that her brain was just not working the way it should. This conversation made me recall my mother’s frustration in the early stages of her AD when she would say, “I don’t know what’s happening to me. I just can’t remember anything anymore.” In the early stages people with AD know there is a problem and are frustrated. It is only in later stages when they are not bothered. I hope that is a long way off for Kate because when that point arrives, she will be different in other ways that she does not want (i.e., more dependent, less in touch, more obviously suffering from AD).

We have still not told anyone of her diagnosis and don’t intend to do so until some undefined later point. That will probably come when it is beginning to become more obvious to others that something is wrong.

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More of My Own Frustration

Yesterday I had another of those experiences in which I got frustrated with Kate. We planned to go to a movie at 5:30 yesterday afternoon. For that reason I got out to see Dad a little on the earlier side and left Kate at my office where she was working on her photo albums. I let her know that I would come back to pick her up at 5:10 so that we could make the 5:30 movie. Knowing that she doesn’t remember time very well, I called her when I was close to the office and told her where I was so that she could be ready. She asked me to call her again when I got closer which I didn’t do because I was already practically there. When I arrived (5:09), I called her from the car to let her know I was there. She said she would close up her computer and be right out. It’s not that she took a long time, but it does take a few minutes for the computer to shut down and then for her to get her things together. When she got in the car, I said something about her not being ready and then said what I wish I could take back, “You’re hopeless.” Now I am suffering guilt for not being more understanding.

Recently I have become more aware of her loss of short-term memory. Two or three times in the past few months, she has completely forgotten something we had talked about the night before. I don’t simply mean she had forgotten the facts or details; she didn’t even recall our having a conversation.

She continues to misplace her phone, keys, glasses, etc. I would like to get her an iPad because she has had such problems with her computer; however, I am concerned that she will leave it some place.

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Difficulty with Medications and Losing Things

Yesterday morning as I was leaving for church, I noticed Kate sitting on the bed looking just a bit sad. I asked if she was all right. At first she said fine and then she said that she had had trouble putting her pills in the pillbox for the coming week. I know she was seeing that as another sign of her AD. This followed her losing some clippers in the yard. She went to Lowe’s on Saturday and bought several new clippers as well as several pairs of gloves.

Later in the day she mentioned that she had been unable to find her debit card which has been missing 2-3 weeks. We drove her car to lunch and looked around the front seats and found it. I said, “I know you feel better about not having to go to the bank and tell them you needed a replacement.” She said it was not that so much as the personal feeling of knowing she had lost it.