Last night Kate and I went to a movie at our local arts theater, Olympia. When we got home she started to put Dad’s clothes in the washer. Then she discovered that the washer had clothes in it. She had turned the washer off when we left for the movie. I saw her do it but thought she was setting the washer for washing Dad’s clothes upon our return. She couldn’t imagine why she had turned the washer off. She said, “I don’t know what’s happening to me.” This is another indication that she is getting back to looking at life normally and not thinking about AD all the time.
I just realized this morning that it was 2 months ago on Monday that we got the news of Kate’s diagnosis. The fact that I hadn’t specifically realized it when I wrote my thoughts on Monday underscores the fact that we are making the adjustment.
Just a quick note. Yesterday Kate went to her annual visit with Dr. Edwards, her GYN. In the context of asking her how things were going, she told him about the PET scan and diagnosis. Kate gave me her review of the visit last night. She said she had told Dr. Edwards about the AD diagnosis and to him that she was doing rather well. I confirmed that. She is doing remarkably well. She said that Dr. Edwards gave her a hug when she left and noted that seemed a highly unusual thing for him to do. I commented that it was nice that he had shown such sensitivity and she, of course, agreed.
I underscored how well I thought she was doing and indicated 2 things. (1) That we can’t always maintain any given emotion for an extended period and that we seem to gravitate back to “normal.” We seem to have entered a period of time when we recognize that life itself hasn’t changed; it is only the diagnosis, and we can go on with life. At the same time, we now view time as more precious than before. Things will never be looked at in the same way as before the diagnosis. (2) That we had both been encouraged by Dr. Reasoner’s assessment that she has plenty of good time before the part we fear the most.
Once again I don’t have a lot to report. I was out of town Tuesday through late Friday afternoon last week on a focus group project in Florida. I could note a couple of things. First, we are both settling into what I suspect will be a normal lifestyle. That means we are not driven by emotion surrounding Kate’s AD. However, we don’t forget it. I have continued to be patient in situations in which I would not have been patient before. I am amazed at how much actually knowing the reason for Kate’s behavior (rather than suspecting) has affected my reactions to her forgetfulness.
Another thing I noticed is that when I returned on Friday evening, she said she had missed me. That in itself is not unusual, but this time she went on to say that her missing me related to not having me there to help her through “my problems.” She is still working on a family album with her brother, Ben. That has introduced a variety of frustrations. Many of these are related to the problems working with computers. She can’t remember how to solve problems. She can’t remember where she has saved information. Yesterday she asked me to help her when she was trying to clean up the files she has for the album. She must have 20 or more different files she has used. The large number annoyed her, but she didn’t know how to delete them. I suggested she not delete them but put them in a new folder for “Old Files.” I helped her set that up, and she was fine.
I know she is also frustrated since she knows Ben wants to complete the album as fast as he can. I suspect she is working more slowly than usual since her AD prevents her brain from moving quickly. This has probably been a frustration to him, but she does not want to tell him about her diagnosis. We still have not told anyone and don’t intend to do so for quite some time.
Yesterday after Sunday school I talked with one of our members whose husband has AD. He seems to get along pretty well, but she tells me it is getting to be difficult for her to get him dressed and ready for SS each week. I asked her how long she had known he had AD. She said 5 years since his diagnosis but, perhaps, 10 years of suspicions. I wasn’t sure whether she meant an additional 10 years or 10 years including the diagnosis. I suspect the latter. I was interested, of course, since I can’t help but wonder how long we will be able to go without other people knowing.
Not a lot to report today. For the most part the days since my last entry have not been too eventful. The one thing I would say is that Kate is feeling frustrated more easily and, I think, less patient with herself. The biggest source of frustration right now is the family photo album that she is working on with her brother. I know she is working more slowly than he would like. He has indicated in several communications that he wants to wrap things up. She feels that the album needs more work and that there is information not currently included that should be there.
She continues to be forgetful. The Aricept has certainly not changed that (nor is it supposed to). In a brief conversation we had at Chalupas over the weekend, she indicated that she thought she had deteriorated since January 21 when Dr. Reasoner first told her the results of the PET scan. I told her that I couldn’t see any sign of that and wouldn’t expect noticeable changes to occur in so short a time frame.
One example of her forgetfulness is that she wanted to get into her online bank account to pay a bill for some work on the flowerbed in the front yard. When I helped her, I discovered she had been using the wrong password. I offered to help her with making the online payment and she wanted to do it herself. I take this as a sign that she doesn’t want to give up all independence. She ultimately was able to do it, but it took a while to do so.
I don’t know where the time has gone. We met with Dr. Reasoner last Wednesday afternoon, and I felt like I wanted to write down our thoughts following the meeting. I just haven’t gotten to it. In fact, I am getting ready to leave for Orlando today and may not write much now.
The key thing to say is that Kate felt much better after our meeting. While she felt as though she “could cry” after Dr. Furner’s briefing, she felt like she was getting a reprieve. Since that time we both have felt better.
Dr. Reasoner asked Kate how she had been getting along, and Kate told her. Kate seemed very much at ease and comfortable with everything even before she asked Dr. Reasoner how far along she was in the disease. Dr. Reasoner told her she was very early and conveyed (or at least we inferred) that she has a good bit of good time ahead of her. We specifically talked about travel plans, and Dr. Reasoner said there would be no need to restrict ourselves for a long time to come.
Since that meeting, we have both seemed pretty much normal except that I continue to be very accepting of behavior that might have annoyed me before the diagnosis. She does continue to experience frustration with some tasks. She is working on a family photo album with her brother and has been bothered by his urge to finish. She doesn’t like to be rushed. This is one of the signs I had noticed some time ago.
Except for these things, life is very much the way it was before the diagnosis. On the whole, however, we have been more active in doing things since we have known about her AD. We have been to Trustus 3 times and planning to go to Town and Workshop in the next couple of weeks. We have eaten out a lot.
I should also say that I am prepared for us to notice that significant changes might occur in the next 3-5 years which means I still want us to push on doing things. Kate also talks more about her bucket list than before the diagnosis. In fact, I don’t think she had even used the term bucket list before then.
We are definitely committed to the trip to Scotland in May and the trip to Africa at the end of December and first 2 weeks of January. I am also beginning to think about New Zealand in the Fall 2012.
Yesterday Kate met with Lillian Walters, a social worker with a physician’s practice. Kate had previously known Lillian through counseling sessions a few years ago in connection with her depression. When I got home from seeing Dad at Life Care, she filled me in on the meeting with Lillian.
First of all, she was pleased with Lillian and how things went. She indicated that Lillian seemed to think of things that she had not thought of. I can’t begin to remember any order to what Kate told me, and I suspect she didn’t tell me in order either. Here are some of the things I remember.
Lillian asked about telling the children and friends. Kate indicated she didn’t plan to tell either until what we think is an appropriate time down the road. Lillian asked her why, and she said that she felt the children and friends would want to “mother” her. Kate has been sensitive to being told what to do by others. She doesn’t like it at all.
Lillian asked if there were anyone she felt she would be comfortable confiding in. Kate thought of two people at church, although she told me last night that she might not want to burden one because she has some current issues herself. The other one might be a better one to talk with. I asked her if she would do that before others knew. She said, “yes.”
Lillian asked her about planning for the future. Kate told her she was going to write her own obituary and that she would begin on that soon. She also asked if Kate had a bucket list. Kate indicated that we were creating that right now. She told Lillian that she was trying to simplify her life. As an example, Kate told her that she was not going to cook anymore. She went on to tell her about a couple of recent examples that led to too much frustration.
Kate also told her about our travel plans. Kate also indicated that as she progressed, we might take more cruises that would not be too taxing on her. She also indicated that we might be able to enjoy Chautauqua even after we feel overseas trips are not best.
Kate expressed satisfaction that she is with her physician’s practice. Dr. Reasoner, Lillian, and a psychiatrist in the practice have also been valuable resources from the past and will be in the future as well.
Kate told Lillian about our meeting on January 21 with Dr. Reasoner and how she directly, but sensitively, told her the results of the PET scan. Kate is still eager to learn as much as she can about how far into the disease she is. She told me she remembers watching Dr. Reasoner’s reaction when I had mentioned Kate’s getting lost on the way to the airport to meet Kevin and his family at Thanksgiving. Kate interpreted the reaction as an indication that this meant a strong sign of AD. Lillian told Kate something similar yesterday.
This afternoon at 2:15, we meet with Dr. Reasoner. I want to ask about her Aricept. She is currently taking half a tablet a day, and I thought I recalled that Dr. Reasoner said she would switch to a whole table in a month or so. Kate wants to ask Dr. Reasoner how far along she is in the disease. I am suspecting that will be a difficult question for Dr. Reasoner to answer, but she may be able to give some general guideline.