New Year: So where are we? How is she? How am I?

I started to entitle this entry “Emotions change quickly” but thought that since it is the beginning of a new year some reflection is appropriate. Both things are intertwined.

Just yesterday I sent the following email to Tom and Carl, two email buddies whom I have kept up with since college days at TCU. Neither of them knows about Kate’s AD.

As I suggested in my previous post, each of us is approaching the stage of life with a different set of experiences and situations. I have never been a workaholic, but my job has necessarily required time apart from Kate. I used to travel a lot. I was reminded of this the other day when I noted that I have travelled only 23,000 miles this year. At one time I was travelling over 100,000 miles a year. That’s how I got to 3,000,000 with Delta. I must have flown 500,000 with US Air. Kate never complained. She actually likes alone time, and I think we were together just about as much as she wanted. Now that we have reached this stage, I just feel the need to make the most of whatever time we have left. That is why I have put as much emphasis on our 50th anniversary as I have done. I have also tried to attend as many social and cultural events as possible. We do about as much as we are comfortable doing. Sometimes it is just nice to be at home.

For me this is as much about attitude change as it is about just being together. I mean there is a difference when we are together. For example, as I finished the paragraph above, she came in to ask if I could build a fire. In the past I would have done it, but I might have thought, “Gee, we just had a fire each of the last 2 days. Do we really need another one today?” Instead I immediately started working on a fire that she will enjoy the rest of the afternoon until we go to dinner. Another way of expressing it is that I make more of an effort to make her happy than I did for a good bit of our married life. The great news is that I find that we are enjoying each other more than we did in the past. That’s saying something because we have always had a good marriage. Now it is almost like we are on a honeymoon. We don’t take each other for granted. Enough said.

Of course, this leaves a lot unsaid because I don’t want them to know just yet about Kate’s diagnosis. It also emphasizes how quickly my feelings can change. Yesterday I sensed that Kate was somewhat depressed. When I got home from visiting Dad, she was almost asleep on the sofa in the family room. We talked a little before dinner, ate at home, and went to bed. During the night she had some problems with diarrhea. This has been a chronic issue for her for some time; however it has gotten worse in the past 6-12 months. This made me think about her continuing inability to function effectively when doing a lot of tasks and what things will be like as she gets worse. It also made me think about our upcoming trip to Peru and Ecuador. I understand that almost everyone gets diarrhea on this trip. Will this be especially difficult for her? I don’t know. I hope that we will be able to take medicine that will help us. She has two doctors’ appointments coming up soon. One is with Dr. Reasoner, the other with Dr. Edwards. She also had a bad bout with acid reflux night two nights ago. I ended up calling the doctor on call at Dr. Reasoner’s office. He recommended she take Gravascon or Mylanta which we have bought subsequent to my call. My point in going through this is to say we can be up at one moment and down at another. My mood depends heavily on how I believe she is feeling.

So how is she doing? On the whole, I would say she is doing well. I think she would say the same. On the other hand, we both see signs of greater difficulty doing lots of things. I get the impression that she is sometimes just in a daze. On simple tasks like entering a new name in her contact list or an item on her calendar, she asks me to give her just one thing at a time. I can’t say, “”We are going to the Bijou on Thursday at 8:00.” That is too much information at one time. Another indication of how difficult it can be for her to do things involves her hair appointment. She missed one while we were in Tom for Christmas, and her hair dresser asked her to schedule a new appointment when we returned. I have been asking all week if she had done it, and she hadn’t. Last night I asked her if she would like me to call and make the appointment. She quickly said yes as though a load was lifted from her.

At dinner on New Year’s eve, she made a gentle reference to her AD, but we did not discuss it. It is clear, however, that she sees herself having more trouble. She does not believe her time is as short as I believe it is. She continues to talk about taking each of the grandchildren to NYC when they are 13. That would be the summer of 2014 for Heather and 2016 for the twins, and 2017 for Taylor. I am not even sure 2014 will work out. Kate certainly would be able to travel, but based on our recent trip to NYC, she requires a lot of help. (I have even thought we might consider taking Heather to NY this summer instead.) That said, I believe it is good that Kate does not believe the trips won’t work out. This would depress her.

Going to have to close now. I will deal with how I am doing in the next post.

Imagining the Future

While I believe I am living in the present much more than I ever did, that doesn’t mean that I don’t think about the future. Yesterday as I walked down the hall to see Dad, I passed by several of the residents that I see every day and thought “that is what Kate will be like some day.” Rarely do I actually get an image or even think of her in that condition. What is normal is for me to simply try to do things now since we may not be able to enjoy things in the same way some time in the future. The best example of that is my plans for travel in the next 8-9 months. We will be in Fort Worth November 1-5 where we will celebrate our 50th TCU class reunion. Dec. 5-12 we will be in New York. Feb. 24-March 16 we travel to Peru and then the Galapagos Islands. June 13-22 we will be in Jackson Hole with our children and their families. Finally we will make our annual trip to Chautauqua July 18-27 with a 2-night stay in Niagara-on-the-Lake. I am looking at these trips as a celebration of our 50th wedding anniversary that occurs May 31.

All of this takes money, more money than we receive in income; so what that means is dipping into our reserves. Over our entire married life, we have rarely done this. My justification for doing it now involves my concern that after next year, I am not sure how much special travel will be in the cards for us. I hope that Kate will continue to appear normal to others a year from now, but I am suspecting that the children might notice something different about her when we spend a week together next summer. I also am wondering how many more times we will take care of the grandchildren. If I have to take care of them and her, that may be a problem.

Kate’s short term memory continues to worsen. She tries to write down all of her obligations and to share them with me so that I can remind her. We are doing a good job with respect to her hair appointments. She is now making her next appointment at the time she goes for an appointment. Then she gives it to me, and I put it on my calendar. I don’t put down everything and don’t always remember to remind her. Last Friday, for example, she was to meet a PEO sister to interview a candidate for a scholarship or grant. We had talked about it on a couple of occasions. It turns out that I got in a rush and didn’t remind her of the appointment although she had remembered it that morning. That evening when I asked her how it had gone, she was shocked as she realized she had forgotten to go. This kind of thing on a less important scale happens daily.

I am gradually taking over more and more responsibilities in connection with here tasks. She still works on the computer, iPhone, and iPad, but she needs help with many things she does on these pieces of equipment. If she accepts some responsibility like arranging refreshments for our music club, I feel I need to make sure that it gets done. Early last week she finished and sent Brian a pictorial account of our trip to NYC in July. It is something she should have finished rather quickly, but it takes her a long time. She revises and revises and then she forgets about it for a while. The same is true with other photo albums she is working on for us. The good news is that it does give her something useful to do, and there really is no deadline.

The State of Our Lives

Yesterday Andy Griffith died. His passing took both Kate and me back. His show was in its heyday when I was a student at UW in Madison. We always love him and the characters around him. The way I expressed it to Kate he was a “marker” in our lives, one of those people and events that were significant to us.

At the moment we are in a period where we have both settled into recognition of Kate’s condition and do not belabor it, but it isn’t that we don’t think about it. In fact, it still hangs over everything we do. Not a day goes by without multiple times thinking in some way of Kate’s diagnosis. For me, in particular, I find myself both remembering and forgetting (or acting as though I have forgotten). Let me clarify this last comment. Although I know she can’t remember things, I find myself asking her things that require greater memory than she has. For example, yesterday she couldn’t find a pair of shoes she wears when she is working in the yard. This morning I noticed that she was wearing them and said, “I see you found your shoes, where were they?” She answered, “I don’t remember.” I don’t believe that this comment alone creates a problem, but it occurs so often that I feel it is a constant reminder to both of us that she is losing her memory. It is amazing how many times we ask these kinds of questions in the course of a normal day. “How did you . . .” “What did you do . . .” “Why did you . . .”

On Tuesday of this week I received a call from an attorney that State Farm has provided for us in a lawsuit against us for an accident that I had coming back from Memphis in March 2009. I am to give my deposition on July 13, and the attorney said that the plaintiff’s attorney had requested that Kate be deposed as well. I said ok somewhat hesitantly. After hanging up, I had 2 concerns. First, is that Kate is uncomfortable being pressed to explain herself. For example, when I ask her how she solved a computer problem, she will usually say, “Don’t ask me” which I take to mean it is stressful for her to try to explain, and she probably is not able to do so. The result is that I try not to press her to explain anything. My earlier comments above acknowledge that I often fail at this. She is quick to tell me when I am pressing her, and then I stop quickly.

The second concern is that in her attempt to explain herself, she gets confused and gives inconsistent information. I was afraid that the plaintiff’s attorney would take advantage of this. That led to my talking with Kate about the attorney’s request. She suggested I tell the attorney about her Alzheimer’s and that we could provide a doctor’s statement if needed. I called the attorney back, and he accepted my suggestion although he did indicate that we may need the doctor’s statement.

One question one might ask is, “Is her condition getting noticeably worse?” The answer is it depends on the period of time with which you compare her present condition. I would say she is noticeably worse than she was a year and a half ago when we got the diagnosis. I can’t say that I notice a difference in the past 6 months. What I do see is her working harder to minimize her frustrations. For example, she had agreed to solicit our neighbors for contributions to the Alzheimer’s Association. She hasn’t done it and told me yesterday that she would need my help to get her started or she would never do it. I also interpret her growing interest in tending to her plants relates to the fact they don’t talk back, ask her questions, or provide other frustrations. She is simply able to do what she can. If she does less than she intended, there are no great negative consequences. The only critical thing is to keep everything watered.

Being Forgiving/Understanding

Since Kate’s diagnosis, I have come to view most of her behavior in a completely different light. Being someone with more than a few OCD tendencies, I found myself annoyed by many things, all of them unimportant. These would include little things like the way she loads the dishwasher, misplacing the remotes, etc. I wish that I had always been so understanding as I am learning to be now.

I find myself thinking about the future, our relationship, and how life will be changing. This is especially true when I attend a funeral service. Something similar happens when we are attending happier events. For example, we recently attending the wedding of a close friend. I kept reflecting on our own wedding and the happy times we have had over the years.

A very different kind of event the other night also led to a feeling of sadness for her. She recently learned about a conversational Spanish class offered at a branch of the library near us. She went to the first class by herself. A few minutes after the class had started, she called me to come over. I did. We went to Chalupas for dinner. She told me that she was feeling intimidated and wanted me in the class because I speak a little Spanish. It saddens me every time I observe her insecurity that arises because so many things are difficult for her.

Symptoms from Kate and Dad

After lunch this past Saturday, Kate went to Lavender, her favorite dress shop. I stayed at home. As I was on the way to see Dad, I got a call from her. She asked where I was and sounded disappointed when I said I was on I-77 almost to Dad’s nursing facility. I asked what she needed, and she said she couldn’t find her car. I asked her a number of questions trying to help her remember but took an exit and went to meet her at my office. When I was a couple of blocks from Lavender’s, I saw her car in the parking lot of a restaurant. When I picked her up, I told her I had good news that I had found the car. It was only then that she recalled that she had gone to a shop down the street looking at clothing to take on our trip to Africa. She was clearly discouraged by this lapse.

Although I started this document with Kate in mind, I am going to make an observation regarding Dad as well. In many respects, his condition plays a significant role in my relationship with Kate and how she feels about things. For quite a while I have gotten phone calls from Dad in the middle of the night. I am not alone. He sometimes calls my brother as well as several of his friends. He told me that he had called one of his buddies just after midnight last week.

At any rate, Dad called me at 2:33 yesterday morning. He told me that he was in West Palm Beach at the Shrine Club. I suggested that perhaps he had had a dream, but he couldn’t seem to hear well which is pretty normal. He placed 3 calls to me around 5:25. Each time he left a voicemail message saying that I didn’t need to come get him that he was at his nursing home.

On at least 2 occasions, he has called to let me know that he thought this was the end, that he was completely blind, and that he had had a wonderful life and wanted to thank me. Each time I have tried to reassure him and told him I was going to plan on seeing him later in the day. When I finally see him after these calls, he always remembers making them and even seems to take some pleasure in them.

For Kate, I am sure this causes some pain as well as amusement. I know she must be thinking of what she is going to be like as her AD progresses.

Eight Months Since Diagnosis

This Wednesday it will have been 8 months since our meeting with Dr. Reasoner when she diagnosed Kate with AD. We have both adapted well, although we continue to have our moments of melancholy. I am convinced, and I believe Kate is as well, that she is declining more rapidly than we had hoped given that Dr. Reasoner described her condition as early onset AD. There are little things like operating the TV that seem to be more confusing than in the past. She has to ask me to help her with many routine tasks. Yesterday, she asked me how to operate the TV in our bedroom with the new DVD player that permits us to stream movies from Netflix. I think she would have had trouble with that without the AD. Then after I had shown her, she asked if I would show her how to turn on the TV in her office. Before I could do that she had done it herself. I can’t recall the exact conversation but in the latter part of the process of showing her how to operate the TV (which I know she will not remember) she said, “Well, remember I do have Alzheimer’s.” I said that I know but sometimes forget. She said, “Most of the time I do too.”

There are 2 other recent illustrations of her asking for help. She misplaced her shovel someplace outside and asked me to help her find it. We walked around the flower beds in the backyard. In a moment, she saw the shovel right after I had walked by it and didn’t notice it.

Yesterday afternoon she asked me if I would help her find a new plant that she had purchased on Saturday but couldn’t remember where she planted it. I walked around the flower beds again and found it. A little later she asked me where the plant was. I told her, and she remembered.

These are the kinds of things that don’t get noticed by most people since normal interactions involve such routine things that she can do almost reflexively. I think this is fortunate because I don’t want a lot of people to know about her condition, and, as I have mentioned before, she doesn’t either.

The fact that her deterioration over the past 8 months is noticeable makes me concerned about the future —  for example, a trip to New Zealand in the winter of 2013. I am beginning to think that we will want to make the most of 2012. I don’t really think we will have to stop traveling after 2012, but it will be different if her condition continues to decline at the present rate.

I do find that I feel a greater need to be with her and to enjoy our time together. We both enjoy snuggling in bed and taking moments together with a glass of wine out on the patio. Without saying it, we both want to make the most of the time we have remaining. I am hoping it is longer than I am presently thinking. I recall a friend’s saying a good while after his wife had been diagnosed with AD that they were able to enjoy conversations together.

Reflecting on the Past and Looking Ahead

Last week we took our granddaughter back to Nashville to catch her plane to Houston. We both felt we had had a great visit with her. At the same time we recognized that we focus so much on her and the other grandchildren while they are here, that we get behind on other things. We stopped for dinner on the way home. We talked about our aging and how much we value our time together. We wonder how much longer we will be able to do the one-week vacation with each grandchild.

This past Saturday I selected 600 slides to send to ScanCafe.com for them to scan. I am trying to convert our slides to digital. As I was going through them, I became very nostalgic. I found myself reflecting on our time together in Madison, the move to Raleigh, and Jesse’s birth. Those were such special times for us. I couldn’t help feeling sad as I thought about the path on which we are now headed. This rekindled my more intense feelings about making the most of our time together in the weeks surrounding Kate’s diagnosis in January.

I am also noticing what I believe is a continuing decline in her condition. It is not great, but it seems like there are so many little things that occur that wouldn’t happen if she did not have AD. I am in a sad mood. This comes as I am also seeing a decline in Dad’s condition and a worsening of business conditions. It is a stressful time.

Events That Make Me Think About the Future

Several things have happened this morning and the past several days that make me think more about Kate’s condition and progress. As usual, we went to church separately and were to meet in the sanctuary. When she didn’t show up, I thought she must have gotten detained with someone after Sunday school and ended up sitting in the back of the sanctuary. When we drove to lunch after church, she said she had had one of those experiences in which the brain just didn’t work. It turned out that she had entered the sanctuary on the left side rather than the right side where we (I) always sit. She looked along the rows in the area where she thought I would be and finally took a seat by herself. It was only later (I think after the service) that she realized she had gone to the wrong place and that I was sitting right where I always do.

The other events involve updates on several people we know who have dementia. At our recent (this past Wed) meeting of the executive committee of the music club, someone asked about one of our members who has dementia. The word was that she has good and bad days. She and her husband have moved to a continuing care facility. This has been a problem for him because his photo studio is in their house and he is still active in his photography.

In addition, in Sunday school this morning one of our members reported that her husband will be staying permanently at the nursing facility where he has been in rehab. Although he has recovered physically from recent surgery, it has been a setback mentally. He was diagnosed with dementia 7 years ago. It made me think about Kate’s progress. Seven years would put her at 77 which is much sooner than I care to think although I have feared from the first that she might move along more quickly than we have wanted to believe.

Another member of our Sunday school class was there this morning. She seemed to have progressed further in her dementia than I had noticed in the past. She gave me a gentle but big hug and told me she loved me. It breaks my heart to see her and to imagine where Kate will be in a few years.

In this morning’s paper I read an obituary of an old acquaintance who would have been my age. Donations options were given, one that included a day care facility, and I thought he might have had AD or dementia. I found out that is correct.

On occasion I mention to Kate about someone’s having AD, but most often I find myself unwilling to say anything because I don’t want to add any anxiety to that which I know she already feels.

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.