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Some People Begin to Wonder

This past Thursday a significant event occurred. I had lunch with our pastor who had scheduled the lunch about 3 weeks earlier. I thought this was a bit unusual, and he indicated that he had no special agenda. He just wanted to get together.

We chatted a long time, and finally, he asked, “Is everything all right with Kate?” It hit me like a ton of bricks. Tears came to my eyes, and I was unable to speak for some time. It seemed like forever but must have been no more than a minute. Before I could answer, he said, “I think you’ve answered my question.” Choked with emotion, I said, “She has Alzheimer’s”

I asked why he had asked. He told me that a couple of people had sensed that something was wrong. He told me two people in particular had been concerned, his wife and a staff member.

I told him we had been very quiet about her diagnosis and that he was the first person other than her doctor that we had spoken to about it. I told him that we had received the diagnosis in January but that we had suspected it for some time. I also asked that he keep this confidential as Kate was not ready for this to be public. He said that he would do so. I also told him that I did not plan to tell Kate of our conversation.

Now that a few days have passed and I have had time to think a little more, I am inclined to tell Kate but to do so after our granddaughter, who is visiting from Houston, has left. I have not wanted to add to her worry while Heather was here. We take her back to Nashville on Wednesday to catch her plane home. At an appropriate time after that I will let her know. She has wanted her doctor to be honest with her, and I feel that she may want me to do the same.

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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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Continued Problems at home and on the Road

We are still at Chautauqua, and I sense this has been a tough week for Kate. She told me a couple of days ago that she is a basket case. After I gave her a second toothbrush yesterday (she failed to bring one with her, and I had given her an extra that I carry for that purpose), she also made a remark that a friend whose husband died of AD, told her it only gets worse.

She continues to work on fer family album, a project that should have been completed long ago. To her credit, she is also editing some of the work that her brother had done; however, I am confident that given her mental state, she is taking 3-4 times as long as she should to complete everything.

I have also noticed that she has seemed more needy in the sense of wanting to be close. We were to meet in the Amphitheater for the morning lecture yesterday. I never saw her come in, and she did not see me. When it was over, I waited for her to come out. When I didn’t see her I came back to our room. She finally arrived and was panicked because she had not been able to find me. I am thinking this is one of the early signs of fearing to be out of my sight.

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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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More Signs of Change

Just a couple of quick notes. Over the past couple of weeks I have noticed additional signs that Kate’s memory may be worsening. She continues to misplace her phone, keys, purse, etc. She also forgot to go to a dentist’s appointment this week. One day this week while we were at lunch, she asked me if she had been awake when I left that morning. I told her yes and that she was up and we had spoken, but she didn’t remember it.

I am also finding that she is more irritable and is almost terrified if you accidentally startle her. When our grandson was here, he accidentally did so. I frequently startle her if I come in the room when she doesn’t realize I am at home. I am trying to make sure she knows I am home before walking in on her.

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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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Events That Make Me Think About the Future

Several things have happened this morning and the past several days that make me think more about Kate’s condition and progress. As usual, we went to church separately and were to meet in the sanctuary. When she didn’t show up, I thought she must have gotten detained with someone after Sunday school and ended up sitting in the back of the sanctuary. When we drove to lunch after church, she said she had had one of those experiences in which the brain just didn’t work. It turned out that she had entered the sanctuary on the left side rather than the right side where we (I) always sit. She looked along the rows in the area where she thought I would be and finally took a seat by herself. It was only later (I think after the service) that she realized she had gone to the wrong place and that I was sitting right where I always do.

The other events involve updates on several people we know who have dementia. At our recent (this past Wed) meeting of the executive committee of the music club, someone asked about one of our members who has dementia. The word was that she has good and bad days. She and her husband have moved to a continuing care facility. This has been a problem for him because his photo studio is in their house and he is still active in his photography.

In addition, in Sunday school this morning one of our members reported that her husband will be staying permanently at the nursing facility where he has been in rehab. Although he has recovered physically from recent surgery, it has been a setback mentally. He was diagnosed with dementia 7 years ago. It made me think about Kate’s progress. Seven years would put her at 77 which is much sooner than I care to think although I have feared from the first that she might move along more quickly than we have wanted to believe.

Another member of our Sunday school class was there this morning. She seemed to have progressed further in her dementia than I had noticed in the past. She gave me a gentle but big hug and told me she loved me. It breaks my heart to see her and to imagine where Kate will be in a few years.

In this morning’s paper I read an obituary of an old acquaintance who would have been my age. Donations options were given, one that included a day care facility, and I thought he might have had AD or dementia. I found out that is correct.

On occasion I mention to Kate about someone’s having AD, but most often I find myself unwilling to say anything because I don’t want to add any anxiety to that which I know she already feels.

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Reflecting

Kate and I spent a little time in the pool Friday night and had a brief conversation about her adjustment. She indicated some frustration with her inability to handle things. I told her I thought she was handling things well. She agreed, but she said she thought part of what was happening was denial. She went on to explain that she accepted the situation intellectually but emotionally she hadn’t fully accepted it. I also commented on her sense of humor regarding her forgetfulness.

Yesterday morning she told me that she had made two other mistakes. One of these involved her giving a date of June instead of July in an email to a member of PEO. Another was to have left one of her Library Ladies off the email list for her communication regarding the lunch she is trying to arrange for them. Neither of these represents anything of consequence. In context of all the other little things that are happening, they do represent further reminders that her brain is not functioning the way it should.

During a conversation at dinner last night, we talked about aging and said something about 80. She said, “By the time you are 80, I will be –”  (here she did not say anything, she simply drooped her head the way she might do at a later stage of her AD). We made a few comments and then she started to tear up and suggested we change the topic.

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Odds and Ends

Brian left last night after being here for a week. During the week that he was here, Kate exhibited periodic “fright/annoyance” at various loud noises he made. She repeatedly had to tell him to stop making certain noises. He always stopped, but would forget and make them again later.

Kate  also had her most recent appointment with Dr. Reasoner on Wednesday afternoon. This time I did not go with her since I was taking care of Brian. I felt Kate would be all right by herself. I had suggested a few weeks ago that we postpone the appointment, but she wanted to go ahead. She found talking with Dr. Reasoner to be soothing. She likes her style of being forthright but in a sensitive manner. She doesn’t sugarcoat things.

On the way to the doctor’s office, Kate got lost and called the office for directions. They were quite understanding and got her there.

As we waited for Brian’s plane to leave last night, Kate asked for my help in arranging a time for her “Library Ladies” group to have lunch. It is her time to set the date and place. She just hadn’t done so and needed my help in figuring out when people could come. Several had sent her emails with possible dates, but she couldn’t manage to go through them and see what dates were best. Only 4 people had responded; so it wasn’t a big deal, but it was too difficult for her. I gave her the best dates, and she entered it in her iPhone. When we met for lunch she said she had been unable to locate the information and couldn’t remember it and asked for my help again. We went through it one more time, and this time I think it will work.

Her willingness to ask for my help is good but also makes me sad. She recognizes that she can’t keep things straight, so she needs help. This morning she sent me an email with 2 appointments for next week. She likes for me to put them on my calendar so that I can make sure she doesn’t forget.

On the positive side, I am amazed at how well she is accepting her condition. I know she has ups and downs, but, on the whole, she is doing remarkably well. Given her chronic depression, I would have thought this would be a much lower blow than it has been.

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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.