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.

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.

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.

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.

The Importance of Time Together

A few minutes ago I returned from lunch with Kate. As we ended lunch, I said, “Well, I guess I need to go back to work.” She said, “You need that. You can’t spend all your time mothering me.” I responded, “I don’t want to mother you; I just want to be with you. I treasure every moment.” She gave me a very knowing look, and I did the same to her. We seem to do a lot of communicating through our expressions that we both understand. I just didn’t want to leave her. She was wearing a white turtle neck with her red vest, and I told her I liked her vest. As we were leaving, I asked if we had a picture of her in that vest. She said she thought so. I was thinking that I want to get as many pictures of her as I can. Yesterday I told her we didn’t have many pictures of us together. I was thinking we need to have a picture of us made. Again, I am worried that I will discover it is too late and I will not have done things that I wish I had done.

Time is more precious now.

As Kate and I ended our lunch today, I said, “Well, I guess I need to go back to work.” She said, “You need that. You can’t spend all your time mothering me.” I responded, “”I don’t want to mother you; I just want to be with you. I treasure every moment.” She gave me a very knowing look, and I did the same to her. We seem to do a lot of communicating through our expressions these days.  I just didn’t want to leave her. She was wearing a white turtle neck with her red vest, and I told her I liked her vest. As we were leaving, I asked if we had a picture of her in that vest. She said she thought so. I was thinking that I want to get as many pictures of her as I can. Yesterday I told her we didn’t have many pictures of us together. I was thinking we need to have a picture of us made. Again, I am worried that I will discover it is too late and I will not have done things that I wish I had done.

Talking About the Future

Last night we had a fire and some wine and talked a good while. We didn’t specifically focus on Kate’s AD, but it is an unspoken part of all our conversations and time together. As I mentioned in an earlier post, she is worried that she is further along than either of us would like. We talked last night about our plans for the May trip to Edinburgh and next January’s trip to Africa. When I mentioned the Africa trip, she said, “If I am able to make it.” I told her I couldn’t envision that her condition would deteriorate that quickly, and that we would have quite a number of trips before she would be unable to travel. I wasn’t just saying that to comfort her; I really believe it. At the same time, I tend to feel that she is well into AD. We discussed the fact that this is the toughest challenge we have faced. We tried to reassure each other that we would do this together the way we have done everything else. I didn’t say this, but I believe we will do this better than anything else we have done together. We feel intensely close. The fact that we will keep this secret for as long as it seems possible demands that we hold each other up. Earlier yesterday she told me that the social worker at her doctor’s office had returned her call, and they were going to schedule a time to get together. She had been in some counseling with Jean a few years ago and believes it might be helpful for her to get together with her again.

We both have a variety of reactions to knowing. One for me is that I want to be with her as much as I can and that while we are together, I try to make the most of our moments together. The second thing is that I do not find myself frustrated at all with the kinds of behavior that I now see as symptoms of AD. I seem to be able to accept anything she does. I also find myself trying to reassure her when she does something that could be viewed as a symptom of AD. For example, today at lunch, she didn’t get the top of her plastic glass screwed on straight. I told her that it is hard to get it screwed on just right and that I make the same mistake. She said, “”You don’t have to try to make me feel better. I know it really is hard to do.” At lunch, Kate mentioned that she had thought of 2 people at church that she felt she would be able to talk with. She indicated that she wouldn’t do this any time soon however. The implication was that she would wait until we were more public about her AD.

I continue to feel moments of sadness. These come when I am not distracted by activities that require my attention. We took a walk around the neighborhood this morning, and I couldn’t help thinking of how much she had wanted a house like ours and that I could never walk these streets alone without feeling a great deal of sadness that she wasn’t with me. I have found my mind drifting to the travel we have done and the experiences we have had together and the fact that we won’t be traveling as long as I had expected. I fully expected to do so into our 80s. Now I feel she may be gone, or incapacitated, before she is 80.

Kate is now at yoga. She is trying to get there several times a week. I am encouraging her. She likes the instructors and finds yoga relaxing and good for her physically. We now have her medicine in the bathroom off the master bedroom. That is so that I can check to see that she has taken her medicine. This was her idea, not mine. She has a tendency to forget to take it. This is not a particular problem except for her antidepressant. She suffers nausea if she misses a day.

Changing Moods

We both have expected ups and downs. We’ve gotten along for the past few days without dwelling on things. Yesterday, however, I detected Kate was down when I called her to see if she was going to her yoga class. When I got home, she was in bed in the small guest room. She insisted she was all right – just tired. She got up shortly and got ready for a reception in connection with this week’s symphony concert. When we got home, I asked her how she was getting along, and she said, “”Oh, all right.” I said that didn’t sound that all was well. She said she was anxious to get her behavior test done with Dr. Taylor and her follow-up meeting with Dr. Reasoner that she wanted me to attend. She is worried about how far along she is and what impact that has on doing things around the house, etc. I felt I didn’t handle this well. I suggested that as far as the house goes that we wouldn’t want to make any major investments just because of this stage of our lives, but that she could certainly do lots of little things. I reminded her that we also wanted to keep the house in good condition and replacing the slate in the atrium was something we definitely needed to do. I found that I was down a little this morning. I am influenced by her moods. When she’s not happy, I’m not happy. That was true before her diagnosis. She did not go to yoga yesterday, but she went this morning and said she was going to another class at 1:00 today. She likes yoga, and it makes her feel good. I am hoping she continues this.

A Short Getaway to Asheville

We seem to be settling in a somewhat normal life after the rush of emotions and related conversation. I don’t mean to suggest that we won’t continue to have our ups and downs but to point out that the week has gone pretty well. I had a presentation near Asheville, so I took Kate with me. She shopped while I was doing my presentation. When I finished, we had dinner at a nice restaurant. It was a great meal. She had had lunch at a seafood restaurant where she enjoyed the scallops she loves so much. We came back to the hotel and got to bed early. We stayed once again at the Haywood Park Hotel where we have stayed the last 7 or 8 times we have been to Asheville.  We love it and think of it as our second home. In fact, Kate mentioned (in jest) that when she needs more care she wants us to move there because it is so nice.

The next day we took a walk in the downtown area near our hotel. Before returning to Nashville, we had lunch at a new place a friend had told us about. It was fantastic. We will return there.

Kate has gotten started in yoga this week. She is going this afternoon for the third time, I believe. She enjoys it, and it is something she should be able to do for a long time (a long time being undefined). I tend to think, but would not say to her, that she is farther along than we want to believe. I suspect we won’t be able to keep this secret for more than 2-3 years, perhaps less.

 

How I’m Feeling and Making Plans

This will be a brief entry as I just finished breakfast and am getting ready to leave for the Y. I did want to mention a couple of things. We spent more time together last week and were more active rather than just being at home together. We have had lunch together most days since 1/21. We intend to keep that up as our schedules allow. We also went to two theater productions,  one of which was Harvey that was a good lighthearted evening.

Last night we had an emotional conversation in which we shared with each other the feelings we have had since the diagnosis on 1/21. We both had suspected this for quite some time. We had been seeing signs for at least 2 years. Kate, like my mother, has expressed frustration over not remembering things. At first, I denied the possibility saying we all forget things and that I felt her memory issues were probably related to her depression. For the past 6-12 months, however, I had become increasingly concerned that it may be Alzheimer’s. Despite my suspicions, I found myself getting irritated when she would forget things. I kept saying to myself that she can’t help it, but I would still be irritated. Since the diagnosis, I have not had the first sign of irritation.

The official news has affected Kate as well. She opened last night’s conversation when we sat down in the family room to watch a movie on Netflix. As we sat down, she said, “I am so scared.” That began an extended conversation that was good for both of us. (We never got to the movie.) She is not only scared. Beyond that she is angry that this is happening to her now. She feels this would have been easier to accept if she were 80 and not 70. She is beginning to feel she is already being treated as a non-person in social interactions and that this will just be exacerbated as she declines.

January 31, 2011 (9:16 a.m.)

I am now at the office and want to quickly finish my notes on last night. We talked about a wide range of things and how much our thinking about the future is different now.

1. Keeping things constant rather than making significant changes in the house that we might have done before. Neither of us feels major changes are in the offing since we might not remain in the house as long as we had expected.

2. Planning for a move to a continuing care community. We both agree we want to stay at home as long as we are able. I also told her that I would not remain in the home without her. It is a wonderful place to share with her, and it is filled with many great memories. Without her I would rather be in a place like one with continuing care. I would not buy another house.

3. Thinking about time with grandchildren and trying to make the most of the time.

4. Kate is wondering how far into the disease she is now and plans to ask Dr. Reasoner to give some indication based on the PET scan results.

5. We talked about how not being able to tell anyone about this drives us even closer together than we have been before. We both recognize just how interdependent we are.

6. We spoke about a balance of practicalities (planning things like finances, arrangements for help, etc.) and emotional support that I can provide.

7. She is going to check with one of the social workers at primary care practice about support groups when she is ready to be more public. She really wants to talk with other people in the same situation as she. I noted that I had checked on line but not found just the right thing yet.

8. We reminisced about the places we had enjoyed together  and even specific moments that were special (e.g., the native dancing at the Christmas market in Bratislava).

9. We talked about places she might like to visit. Santa Fe is definitely on the list. We had previously said we would look at Australia and New Zealand in 2012.

10. I also told her I avoided saying much about things because I didn’t want to aggravate the situation. She said she wanted me to be as free to say things as she is.

11. She asked me if I had thought about her cousin’s husband since getting her diagnosis. He is in the latter stages of Alzheimer’s. I said that I had. One of the things she doesn’t want but knows will happen is that people will pity both of us. This is not a problem for me at all, but is for her.