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.

 

Early Efforts to Cope

January 25, 2011 (6:07 a.m.)

I woke up early this morning (around 4:00 am) . I don’t know that this relates to Kate’s diagnosis, but it is consistent with problem sleeping the week before her appointment with Dr. Reasoner.

We both got through the day all right. I was busy with things at the office although I did find my mind wandering back to Kate. I checked online to locate support groups for her. I found a number, but did not identify just the right one.

I also looked up life expectancy for someone diagnosed with Alzheimer’s. I didn’t like the results. Results showed somewhere between 4.5 and 8.5 years. That is a contrast with the figure of 12 years that we got from Dr. Reasoner.

Kate specifically told me she got a long all right yesterday. She took a positive step to investigate a yoga class that she has been considering. She is also going with me to the Y breakfast this morning.

January 25, 2011 (12:10 p.m.)

I have found myself with a strong feeling that I need to be with Kate more. I have been thinking of the possibility of limited time to enjoy ourselves “the way they are” rather than “the way they will be” in the future. She went to the Y breakfast this morning, but I have tried to reach her about having lunch together. She hasn’t been at home and hasn’t answered her phone or text messages. She could possibly be at church where the connection is not so good although I thought she was almost fully disconnected from her responsibilities there.

I also keep thinking of things that she would like to do while she is able to fully appreciate them: seeing the grandchildren, traveling, visiting with friends, etc. I am also thinking about developing a To Do list of things we need to do: putting both our names on all bank accounts, checking our wills to see that they are in order, getting rid of lots of things in the house that we don’t need and that Kate has expressed an interest in doing but I haven’t, deciding whether Kate would be better off staying in the house as long as absolutely possible or moving to a continuing care community that could handle our changing needs.

 

Reflecting on the Diagnosis and the Future

It’s been a good day. That doesn’t mean either of us hasn’t dwelt on the news we received from Dr. Reasoner. One of the differences I notice is that we are more open with each other about the news. Prior to knowing, neither of us spoke about it except in moments when some instance of Kate’s loss of memory bothered her or me or both of us. It is as though instantly I am attributing all of her issues to the diagnosis.

She has brought up the fact that she is feeling all right, but also expressing that she is feeling a range of emotions starting with anger, sadness, etc. She did not go to church this morning, something that is not unusual since she retired from the church library in May. When I go home, we went to Casa Bonita for lunch. While there, she mentioned that she might want to check out support groups for Alzheimer’s patients. I suggested she look online and that that would offer her more anonymity.

After we got home I got online to look for options and found several. I did not identify one in particular that would be appropriate for her. I did, however, get a different slant on her condition. I believe, and I know she does as well, that Dr. Reasoner said something about “early onset Alzheimer’s.” From what I read today she must have meant early stage Alzheimer’s. Early onset is for people who are under 65. I believe this is not early onset and am now concerned that this may mean there is a shorter period of time before we face significant changes that will affect us. Up until getting this information, we have both been thinking that we will have quite a few good years ahead. Now I am wondering if we might not notice changes that affect us within the next 5 years.

We both have talked about the importance of her being active including participating in exercise. I am going to check on yoga classes near the house where she has had some interest. I am also thinking that we might start eating lunch together more frequently than in the past. We also talked today about her avoiding situations that are especially frustrating. That would involve preparing meals for company. She recalls being especially frustrated last summer when one of my friends  was in town to see Dad.

 

Follow Up to Yesterday’s Post

I don’t intend to write something every day, but I did want to add a couple of things from yesterday and today. First, I didn’t indicate yesterday that I had planned to take the full day off as soon as I knew Kate had the appointment with Dr. Reasoner. That worked out well. After our lunch at Casa Bella, we came home. We had picked up Kate’s laptop from the shop; so she wanted to catch up on email, etc., having been without the computer for the past few days. I took a little time to work on my Sunday school lesson and to start this particular document.

Continue reading “Follow Up to Yesterday’s Post”