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.
Today I’m wondering if we will ever go through a day in which we don’t think about Kate’s AD. It seems (and I think is reality) that all of life gets reinterpreted in light of her diagnosis. After our company left yesterday, she and I discussed how things had gone. At one point she said, “I don’t think anyone would have suspected.” I assured her that they wouldn’t have. She also acknowledged that they might have thought she wasn’t “as organized as she used to be, etc.”
Today at Rotary our speaker talked about our CART Fund (Coins for Alzheimer’s Research Trust) and asked us to raise our hands if we knew anyone who had/has AD. As I raised my hand, my eyes started to water. I’ve been in this group before when this question has been asked, but I never felt the same emotion as I did today.
Today is Dad’s brother’s birthday. He and his wife, Elizabeth, and my brother, Scott, arrived here on Wednesday for a visit with Dad. All of them stayed at our house. They were all great guests, but it is more stressful for Kate to make plans and execute them. This is a pattern that has been developing over the past few years. Since we received her diagnosis, we have been working more deliberately to minimize stress. We did that this weekend by taking a meal from an Italian restaurant near Dad’s nursing facility on Wednesday night, bringing in meals on Thursday night and Saturday noon (when we celebrated Tom’s 80th birthday), and eating out Friday and Saturday nights.
In addition, I took care of breakfast each morning by bringing in bagels and muffins. I also got a mixture of fruit for Elizabeth on two mornings. I let Kate sleep as long as she wanted. That meant that she didn’t get up on Thursday or Friday morning until after our guests had left for Dad’s.
The weekend went well. We took note of some things that we wouldn’t have thought of before. For example, Wednesday night Tom told us about someone they had known who had AD and that she had wandered away from home and how frightened her family was. He mentioned that it might be good if AD patients had a chip like the one they use in dogs implanted in them so that they would be easily found. When we went to bed, Kate wanted to be held and comforted and mentioned something about Tom’s remark. I find myself holding back from saying things like this. Some of those are in reference to my mother’s dementia. Others are related to my father or someone else, In fact, Kate asked me recently how long Jane, one of her friends has had AD. When I told her about 12 years, she was bothered. I thought that would encourage her, but it was discouraging. I assume because Jane’s condition has been obvious for a few years (2-3?). I am sure it may have hit Kate in two ways. (1) It may only be a few years until her condition is obvious to others, and (2) she may live a long time in the latter condition, something she dreads.
In addition to the visit with family, we met with Kate’s psychologist on Wednesday afternoon to receive her evaluation. Although she had areas of strength, primarily verbal, she is functioning below normal in many areas for someone of her age and education. Dr. Taylor indicated evidence of mild dementia. Kate asked her if she had received the PET scan results, and she had not. We told her about the diagnosis. When we left, Kate said, “I could just cry.” This typifies most of her response to the diagnosis. She has not had any significant emotional outbursts. She is experiencing mostly a sadness and worry regarding the future. I am sure she must be thinking about time with grandchildren and missing out on important family events in the future.
It was one month ago today that we met with Dr. Reasoner and received Kate’s diagnosis. The world for us changed in that moment. Everything we do now is interpreted in light of that. Many times I have been in a Sunday school class or other conversation when someone has asked what you would do if you knew you had ”X” amount of time to live. I recognize that Kate’s situation is not exactly the same. We don’t really know how long it will be until her death, and we don’t know how long she will be able to live a mostly normal life. It is hard to articulate what I mean by “mostly normal life.” I think I mean at least 2 things: (1) that she will be able to continue enjoying life in the same way that she does now – going to movies, the theater, out to eat, driving a car, spending time with friends, etc., and (2) that though some people might think she is a little spacey, they wont know that she has AD. I use the terms spacey because she has often said that the people at her beauty shop think of her that way. Over the past few years, she has occasionally forgotten to come to her appointments or left things at the shop. I suspect that Ellen, her best friend, has observed more than a little bit of this. At the moment, I doubt that she suspects AD.
As I think my earlier posts suggest, not all, nor even most, of our moments have been overshadowed by sadness. I do believe that Kate’s response has been in keeping with what you would expect from her depression she has experienced over a long period of time. She finds it hard to do the things she doesn’t want to do. She has busied herself in little things around the house like cleaning out drawers and closets. On the other hand, she has taken the positive step of attending yoga pretty regularly. Each day she tells me if she has a class the next day and what time it meets. I make sure that I set the alarm clock so that she doesn’t oversleep if it is a morning class. She also is working to avoid things that frustrate her. We talk about these things, and she is relying on me more as a partner in this effort than in the past. This blends with her adjustment to depression. Because she knows I tend to be more optimistic and upbeat (overly so she would be quick to say), she tries not to drag me down with her depression. She has suffered mostly in silence for many, many years. Now we seem to be operating as partners in adapting to her condition.
My own reaction has been anxiety. I fear, not her death, but her gradual incapacitation that will terminate our plans for many shared experiences in the future – celebrating our grandchildren’s maturity, graduation from high school, going to college, taking jobs, raising families of their own but also our own private time together – drinking wine by the fireside, lounging by the pool in the summer, travel to many places, theater trips to New York and so many other things.
My anxiety over losing these experiences has led me to try to be with her as much as I can. We eat lunch together a lot now. I am more sensitive about how long I stay with my dad each day. She always felt I spent more time with Dad when she would like me to spend more time with her. I am only now interpreting some of her recent concern about this as a symptom of AD. For example, on one occasion recently she sent me a text while I was visiting Dad. She wanted to know where I was and when I was coming home. When I got home, I learned that she thought that I had been gone all afternoon. In reality I had been gone about two hours, my normal time to drive there, spend time with him, and drive back home.
Another change in my behavior is loss of any frustration over her forgetfulness and other symptoms of the disease. Until yesterday, I had not experienced the first sign of irritation or frustration since before the diagnosis. Even yesterday was minor. On Wednesday, Dad’s brother and his wife as well as my brother are coming for a 4-day visit. The primary objective is to work on Dad’s condo – sorting through his things to determine what needs to be disposed of and what should be kept. This is a first step in putting the condo on the market. At any rate, Kate and I were discussing plans for the visit and trying to work out meals. I could tell she was getting frustrated. That led to my feeling a sense of frustration. The key difference from the past is that I might have pushed a little, and we both would have felt bad. This time I backed off and suggested we’ll get it worked out.
Last night she was trying to determine if she could host a women’s club meeting at the house in July or August. When I told her the August date would be right after we returned from Chautauqua, she asked if I were still planning for us to go for the week on Iran. I felt irritated because we had decided together while we were at Chautauqua last summer that that was the week we would go and put a deposit down on the inn where we have wanted to stay in the past. Now it is really late to make changes. Again, instead of pushing it, I told her that I would see if we could make a change if she really wants to do so, but we had put down a deposit long ago. She, too, decided to back away, and we left it that we would keep the week we had planned on.
The other thing I would say is that our relationship has been the best I can ever recall. Of course, I know I am forgetting the courtship, our new beginning in Madison and in Raleigh where our children were born. I find myself simply going over to her and giving her a big hug. We have eaten out a lot over the years but are doing so more now. Last week we didn’t eat a single meal at home. When I went to take the garbage out to the street for pickup today, I noticed there was no garbage in the container.
We had a wonderful night out at one of our favorite places on Saturday night. We had a cocktail in the lounge and talked for about 30 minutes and then went to the dining room for our meal. We talked about many things. Some of the things involve AD and her reaction. For example, we had a brief discussion about planning our funerals. We agreed this was something we would do together.
But it isn’t only the special nights out like Saturday. I feel even having soup and a sandwich at an ordinary place is a special moment together. We both frequently comment to the other about how nice the meal has been when we really don’t mean the meal at all. We mean that moment in time when we really connected. During the past month we have had many of those moments, and I trust they will continue.
This Wednesday, Kate goes back to Dr. Taylor, the psychologist, as a follow-up to her test of last week. On March 2, we go back to Dr. Reasoner. We anticipate that she will give us more information on the PET scan as well as Dr. Taylor’s evaluation.
Not much to report, but I have experienced a little anxiety yesterday and today. That coincides with Kate’s not having a good day yesterday. We went to Ruby Tuesday last night. It was Valentine’s Day, but we had been to the Valentine’s Ball Sunday as our celebration. We didn’t talk a lot about how she was doing, but after our meal, I said, “You didn’t have a good day today.” She acknowledged I was right but didn’t say it had been bad. I think we are both thinking about how long we are going to have while things are “normal.” We both know it hasn’t really been normal for a while. She has been frustrated over her forgetfulness a long time. I would guess it has been about 2 years. She hasn’t said so, but she may also be thinking about other things than forgetfulness – things like increasing frustration with doing everyday tasks, especially things on the computer, the TV, or the phones.
Tomorrow she has her behavioral evaluation with the psychologist. That is designed to determine how broad the effects of AD are. I have felt she has been unable to function effectively for at least a year if not longer. Again we haven’t exchanged this information, but I think we both fear that she is further along in her journey than we want to believe. One indication is that I mentioned our plans for our trip to Tanzania in January and said that I wouldn’t be booking the trip for a little while although I wanted to check what we need to do regarding any inoculations that are necessary. She said that was good because she wanted to hear what Dr. Reasoner has to say about the progression of her AD at her next appointment on March 2. This is coupled with her comment the other night that indicated she had a question about whether or not she would be able to make that trip.
I asked her last night if she felt I was hovering over her. She said I had not and that she would let me know if that occurred. I can’t say that I have felt like doing everything for her, but I have wanted to be with her and have been more willing to help her with things than I was before the diagnosis. I also sense a difference in her. She seems more willing to seek my help with things. It’s too early to be sure about this, but I know we each feel so dependent on the other because we can’t let others know about the diagnosis just yet. I keep wondering how long we will keep it to ourselves. It could be quite a while, especially if the disease progresses slowly as we hope it will.
On Sunday afternoon we had a brief conversation in which I mentioned some blogs written by people with AD. She said that was something she wouldn’t want to do; however, she could see herself journaling. I encouraged her and will follow up to see if she starts this. I think this could be good for her.