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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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My Own Moments of Frustration

Just a quick update since the last entry. Last week for the first time, I found myself being a little bit bothered by Kate’s forgetfulness. In addition to the usual things that happen, phone misplaced, plans forgotten, etc., two small things actually led to my not being understanding the way I have been. What I mean is that I intellectually understood, but I was emotionally bothered anyway. Here is what happened.

First, she didn’t make any effort to get ready for the visit of our friends, the Robinsons, this past Wednesday. Normally, she might work to get the house in the best shape possible. She arranged for the person who helps her with landscaping to come over at 10:00 that morning even though the Robinsons were due to arrive between 11:00 and 11:30. Then she stayed outside working with her longer than I thought she should have. I went out at 10:30 just to remind her of the time and that they were coming as early as 30 minutes from now. She ultimately came in closer to 11:00. She wanted to scoop up some things that were in the family room and dump them on the floor and chairs in our bedroom and to close the bedroom door. I told her I felt it looked better to have the door open. She accepted that and put things in our bathroom and closed that door.

The other thing involved her completing a letter of recommendation for a local college student’s application to PEO for a scholarship for the fall. This is something she was supposed to do at least 2 weeks ago. She was going to do this before her PEO meeting on Thursday morning. The first complication she ran into was that her computer “died.” That meant she needed to use mine. Her time ran short. She decided not to go to PEO and to come to my office to work on the letter. It took her almost until lunch to get to the office. Then I was going to lunch and she went with me with plans to work on the letter after lunch which she did. I left to go see Dad around 4:00. When I got home after 6:00, she was not there. I called and reached her on her cell at the office. She was still working. When she was ready to leave, she couldn’t fine her purse. I suggested she call the restaurant where we had eaten lunch. She did so and got the purse. (The week before she misplaced her primary car keys and is now using one of the backups that I had made the last time she had lost her key).

Although I thought the letter was essentially finished and all she needed to do was mail it, she worked at the office Friday afternoon. She needed help getting it printed and checked and rechecked the letter and the student’s written statement of need. She found this difficult and was very frustrated. I said that in the future she might try to minimize her doing things like this. She said she had been thinking the same thing. This is another recognition of the impact of AD. By that point, I found myself more sympathetic and haven’t felt anything but acceptance of the situation since.

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Missing Hair Appointments and Other Things

This past Thursday, Kate had a bad day. I had realized it in the afternoon sometime when we spoke on the phone but didn’t know what was wrong. When I got home from seeing Dad, she was lying down on the bed with the TV on. She didn’t want to talk at first and I backed off. Ultimately, she, of her own volition, told me that she thought her hairdresser “knows.”

I seem to recall that she had missed an appointment on Tuesday and this was a rescheduled appointment on Thursday. Instead of seeming to be annoyed, they were very understanding and kind. When she left, they said something like, “We love you.” Over the past few years, they have become accustomed to her missing a fair number of appointments. She suspects that they are just now putting it together. She was down only that day and evening. She seemed fine the next day.

In the meantime, she continues to show signs of forgetfulness. This most commonly involves the misplacing of something – her phone or something else. I am facing this from 2 sides , Kate and Dad. He is regularly “losing” something at his nursing facility. Typically he can’t find his phone. That happened over the weekend, but he found it in his top drawer. Yesterday when I started to put his bridge in his mouth before dinner, it was missing. I decided the dentist had come by and taken it to make an adjustment since I had left a message for this yesterday morning. As it turned out, Doris, who washed Dad’s clothes yesterday, found his bridge in one of his pants pockets. On the way to dinner last night, Kate told me that was the good news. The bad news was that she can’t find it. She looked all over. This morning she called Doris who told her she was sitting in a chair in the bedroom when she had given her the bridge. Kate went to the chair and looked all around it and found it on the floor.

Just as typical are the issues with the computer. She can’t seem to understand and recall how she downloads books from the computer to her Nano. I feel confident other things are happening with the family album she is working on. It is bound to be taking her longer to complete it because of this.

We are having lunch together today and going out to a benefit tonight. I try to keep us as active as possible and we have been more active since the diagnosis. In the next 10 days or so before we leave for Scotland, we have several events. I like to think this is good for her.

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A Phone Call for Comfort

Just got a call from Kate. I had missed a call from her about 30 minutes ago. I sent her a text and asked if she were all right. Thus her call. I asked where she is, and she said she was headed back home. Then she asked where I was and what I was doing for lunch. I told her I was lunching with her. She asked where she could meet me. I said, “How about Casa Bella?” She said, “That would be great.” I asked her to stop by the office and we could go together.

She was obviously distressed. I fear that she either got lost on the way to the meeting or she did something embarrassing at the meeting.

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Life is Normal, But Not the Same

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.

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Our Latest Doctor’s Appointment

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.

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Implications of the Diagnosis Everywhere

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.

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A Visit from Family

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.

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Reflecting on the Past Month

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.

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Feeling Down

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.