Posted on

So how am I feeling?

A couple of days ago I had the thought that much of what I report is simply a description of what Kate or my dad are doing to give a picture of their present state. I should also be clear about how I feel about things and also how both Kate and my dad are feeling.

My general impression is that my own feelings move up and down depending on specific things and events surrounding Kate and Dad. For example, last Monday when Kate told me that she had gotten lost when she tried to walk to our neighbor’s house, I felt sad for her. It gives me pain to see her hurting, and she hurts when she sees how AD is affecting her. Similarly, we went to a local heater Saturday night. She didn’t applaud once during the entire performance and by the expressions on her face, I could tell she was not enjoying herself. I, on the other hand, felt the performances of the actors was terrific. They danced well, sang well, etc. I can’t say that I loved the musical itself but did enjoy the evening. While we were there I was feeling that she was letting her own judgment of the musical influence here judgment of the performers; so she wouldn’t applaud. When we left, I asked her about that. She told me that she was unable to follow it. I am sure that part of that related to not being able to understand much of the words. That may have related to the fact that the band was directly in front of us. I also think they simply played too loud and overrode the singers. At any rate, the moment she said she was unable to follow it, my feelings changed. Then I felt sad for her. It also makes me sad because I know that there will be many other occasions like this in the future.

As for my feelings about Dad, I have been discouraged about his progress since his fall a little over 2 weeks ago. I was particularly low one day last week when I entered the dining room to see him with his head and arms down on the table sound asleep. Besides that he has been more confused and much more like the other dementia patients at Mountain Valley. He still has moments of clarity, and I am hopeful that he will rally as his birthday approaches.

Posted on

Caught Between Father and Wife

This afternoon after we returned home from church and lunch, Kate encountered a frustrating situation that I suspect will either become more common or she will adapt to avoid such things. Either way life will change. Here’s the story.

She is working with a PEO sister in connection with a scholarship program. She has done this for a couple of years. This past year she found herself in an awkward situation when she failed to send in a candidate’s recommendation to the international PEO office. I don’t recall the exact details, but she ultimately sent the recommendation by FedEx but apparently gave the wrong address. She suffered no ill consequences except for some embarrassment for not having gotten the letter in at the time it should have been in.

A week ago the two of them met with about 10 new candidates for the upcoming year. Nominations must be in by June 15. They decided on two candidates their chapter would nominate and were looking for other chapters to nominate the others. They were scheduled to meet this afternoon at Bojangles to go over the details. Kate’s assignment was to simply type the basic information about each of six candidates. She had all the information on handwritten notes she had taken down at the time of the interviews.

I was in the kitchen while she was working in the family room. I could hear that she was frustrated. She finally asked if I could come and help her. As it turns out, I did very little but stay with her until she was finished. It took her a total of 3 hours to complete 3 pages of material. For the most part it was a straight copy from notes to the computer file. She is finding it very difficult to work with the new version of Microsoft Word and Windows 7. I can understand this as I am trying to do the same thing; however, she makes many mistakes that are in my opinion a direct result of her AD. She would delete information she shouldn’t delete. Her use of the program was so inefficient that she kept having to correct herself. That took more time than it should have.

She commented specifically on her inability to do the task. The real problem was that she doesn’t want to tell Shirley that she has a hard time doing this. That would be embarrassing and also might tip her off that she has AD. At one point, I tried to sympathize with her and said she would have to decline these types of things in the future. She said she knows that and was slightly annoyed at my suggestion. This is really hard. This is one of the things that others can’t quite imagine unless they have gone through it. Most people only think of the latter stages of the illness and believe that, as I have noted before, that the person with AD doesn’t know enough to experience frustration or sadness or any of the multitude of other emotions that go along with AD.

During the time I stayed with her as she was completing the task, she repeatedly said, ”Don’t leave me. You don’t know how much you are helping me.” For the most part, I was simply a source of security for her. I don’t mean to minimize the importance of this, but want to make clear that I did little in the way to actually organize the task or do it for her.

Since this occurred at the time of day when I would normally visit Dad, I did not get out to see him until she left to meet Shirley. I was a little anxious since Dad is sick right now, and I felt the need to check on him. It turned out not to be a problem. When I arrived, he was still asleep as he usually is. He had not eaten dinner. The nurse had checked his blood sugar. It had been 49 and 79 a little earlier. She had given him something to raise it. I told her to call me with any problems and that I was concerned about the low blood sugar.

It is now 6:35 pm, and Kate is not yet home. I expect her to be here any minute. We’ll take some time to be together and attempt to lower the stress level until the next time rolls around. This was the most serious situation since the problem with the letter of recommendation, but was similar to what was going on when she and her brother were working on a photo album on their mother’s family. I know Ken was probably wondering what was going on. One day he will know.

Posted on

Stress, Frustration, Depression?

Kate does not talk in depth about her AD. She mentions it mostly indirectly and fleetingly. That is, she says something like, “”I just don’t know; I can’t remember anything.” Then she moves on. I have learned (mostly, anyway) not to push her to say more. She seems to want to be comfortable to recognize her AD but not to dwell on it in a discussion. She does make reference to the stress of life. She also seems down at times. I also note that there are related things that have nothing to do with memory. For example, over the past few years, she has been reading the newspaper less and less. Nowadays, she reads only infrequently. I think she is frustrated by not understanding what she is reading, but again, I don’t press her. I do sometimes joke with her about not being able to probe for more information about anything she brings up.

Another thing that has become next to impossible is operation of the DVD player or doing a number of things on the computer. I think one of the reasons she likes having me around is to be there to help her address the never-ending resolution of problems.

Yesterday she called me to say that she had forgotten another hair appointment. Neither one of us had written it down. Later she said that the message she received from her hairdresser indicated that she had forgotten to make a reminder call, something that is not routine but something she has started doing for Kate.

Posted on

Experiencing the Consequences of Fregetfulness

I continue to feel that Kate has been feeling the pain of losing her memory. A week ago today she had a PEO meeting. I am trying to drive Kate to places that might be confusing for her. That morning I got the address and wrote out directions from our house to the home of the woman hosting the meeting. I had a meeting that morning while she would be en route; so I told her I would stay in touch with my phone for any messages. When I didn’t hear from her, I thought everything was all right.

When we spoke on the phone later that afternoon, I asked if the directions had worked. She indicated that she didn’t want to talk about it. That evening she told me that the meeting had been changed to another member’s house. She had received an email the week before letting her know of the change but had forgotten. When I asked about her getting there, she told me that she hadn’t made it. I asked what happened, and she said she didn’t want to talk about it. I honored that request; so I still know only that she didn’t make it to the meeting and assumed that she was unable to find it. It is also quite possible that she got to the original place and then couldn’t reach anyone to tell her where the meeting was.

There are other examples of her forgetfulness, but I can’t remember them at the moment. Suffice it to say that she continues to be frustrated by her inability to remember things.

Posted on

Beginning To Think About Our50th Anniversary

During this week Kate continues to feel some frustration over her AD. She has said “I am a disaster.” Also “I am a basket case.”

Our pastor called me on Thursday afternoon, and we had a lengthy conversation. He was calling related to a personnel matter (a replacement for our church organist) but also asked about Kate. I gave him a rundown on the situation which corresponds rather well with what I have written within these pages.

Last night Kate and I had a conversation related to our desire for travel in the years ahead. We also talked about our 50th wedding anniversary in 2013. Her priorities are to go to the Galapagos and New Zealand and then Russia. We also agreed that we would like to have a family celebration for our 50th. I am going to look into a beach house somewhere along the Gulf coast of Florida or Alabama. I didnt tell her, but I am especially interested in this experience in connection with her Alzheimer’s and decline. I can’t help wondering now if the children will know by then. I have to believe that if we spend a week together, they will have to suspect.

Posted on

Kate Is Discouraged

Last night Kate and I had a good but very saddening evening. When I got home from seeing Dad, I sensed that she was upset. She was working on our pictures from Vienna. She is making an album similar to the one she and her did for the her mother’s family. I asked her if she would like me to get us a glass of wine and go over what she had done so far. She accepted enthusiastically.

I got a glass of wine for each of us, and she continued working for a short time while I sat on the sofa for her to bring her computer to me. She started to express her frustration. She simply can’t remember names or events that she needs for the album. She had called me twice while I was with my dad to ask the names of two operas we had seen in Vienna. She was still having trouble with that and where we had seen them.

This led to a brief, but much a longer and honest, conversation on how she feels about her AD. She told me she wishes she would rather have cancer, a heart problem, or anything else but AD. She talked about the frustration she has about not being able to remember anything. She talked about her anger over my spending 2 hours a day with Dad when she needs me. We talked together about my spending more time with her. I told her that I had already been thinking that the change in our office arrangements might be a good time for me to spend less time at the office. She then mentioned the possibility of her coming to the office to be with me because she feels she needs to ask me so many things. She seems to feel lost when she is alone. At the same time she talked about her continuing ability to do things. She mentioned specifically that she often finally figures things out even if she struggles to do so.

I have said it before, but I now want to SHOUT it. People say that at least the person suffering from AD doesn’t know it. How wrong this is. Of course, in the much later stages that is certainly true. However, there are years before that when the person does know something is wrong even if the condition has not been officially diagnosed. In a recent conversation, she said, she wasn’t so sure now that she was glad to know.

At any rate, she can see herself declining. It is not just my own observation. Still, I don’t think many, or any, people other than I know her situation.

I continue to be sometimes feeling panic as I see that we are moving toward a time when our lives won’t be as idyllic as they have been. We still want to travel, share good times with friend, etc. I feel like that may be affected within the next year or two. I am going to have to work hard to plan things in order for us to do as much as possible. This comes at the same time that I have to worry about the future of my business and taking care of Dad.

Posted on

One Year Since Diagnosis

One year ago today, we met with Dr. Reasoner to receive the news that Kate’s results showed she has AD. During that year I have noted apparent declines in her memory, sometimes not quite sure whether the changes were real or not because they can be so subtle and similar to what we all do. At this point, there is no doubt that she has declined in a perceptible way.

A week ago last night we got back from our trip to Africa (Tanzania) with OAT. It was a great trip that we both enjoyed far more than anticipated. On the other hand, I felt as though I had to be watching and helping her every step of the way. I am having to assume more and more responsibility for everything.

She continues to get along well in normal interactions with people. I don’t think anyone on the trip would suspect her condition. Neither do I think our children or close friends suspect. I do sometimes wonder about her best friend, because she and Kate have had so many opportunities to talk and socialize together.

The most distressing thing to me is that Kate is so frustrated over her inability to do many things that she would have been able to do before. In the last 2 days she has commented that it’s the little things that bother her the most. From my perspective that would include things like remembering how to charge her cell phone or how to deal with a technician on the help line. She has great difficulty following a set of instructions. They simply overwhelm her. In our personal conversations when she indicates a problem and I automatically try to explain, she stops me because she can’tunderstand.

The whole situation makes me recall times when I hear people say something like, “Well, at least she doesn’t know.” I heard this when my mother was in the early stages. Kate is keenly aware that her memory is declining. She sees how much of her time is spent looking for simple things like car keys, her purse, etc.

It has gotten so bad that I feel I can’t depend on her to do anything. I either have to do it myself, or follow her to see that it is done. While on the trip, she picked out a bag to bring back to Doris. We bought it along with a couple of other things. Then after eating lunch (this was in our lodge) she went back into the gift shop. I saw her looking at the bags again and asked what she was looking for. She told me she was looking for a bag for Doris. She had not remembered buying the first one only 45 minutes to an hour earlier.

She is clearly discouraged. She is not sleeping well. I am not sure, however, how much is a result of jet lag and how much is anxiety over her condition. I think it is some combination of both.

Over the past year, I have cited specific instances of her memory failure. I suspect I may do less of that as so much occurs that I can’t recall the instances without writing things down at the time, and I find that impossible.

We enjoyed the Africa trip so much and are looking at possible trips to New Zealand, the Galapagos, Russia, and China. I fear, however, that our travels may be heavily influenced by her condition. Right now, for example, I am thinking of taking an OAT trip to New Zealand next January (2013), but I wonder whether or not that will be a good idea. I do believe we could do a cruise, but half of the time is spent on the water. I will wait until later in the year to see how things are going.

I need to be honest about my own anxieties. This is a very trying time for me. My business is so bad that I had to let Regina go before Christmas. She had been with me for 28 years. Now I am wondering how long I can keep the doors open. Dad requires attention. This week he spent 2 days in the hospital. I am spending less time in the office. I need to spend more time with Kate. It is a difficult time. I am not sleeping as well as I used to.

Posted on

Moments of Discouragement

Yesterday was a good day for me. I had taken my dad to the memorial service of his Kiwanis friend at First Presbyterian where we both saw some of Dad’s Kiwanis friends and others we knew including someone from Dad’s writing class. Afterwards we went to Ruby Tuesday where Dad had a bowl of clam chowder and Buffalo shrimp. We both had a cup of coffee. I thought it was a special time and enjoyed every minute. I called Kate to say I was leaving the restaurant to take Dad to back to his place and asked if she would like to go with us and then we could have dinner after that. She sounded down but indicated she would like to go with us.

We dropped Dad off and went to dinner. The meal was good, and it was a special time for us. The day ended on a high note.

A week before Thanksgiving Kate had a painful day. I could tell she was discouraged when I got home. That evening we looked over a photo album that her father had put together. We both enjoyed going through it and reminiscing. When we got in bed that night, she said, “This is the best I have felt all day.”

Friday night before Thanksgiving we went to Theater Knoxville. Just before the play started, she asked me for cough drops. At intermission she couldn’t find them. She finally found them in her purse. She said, “Welcome to my day.”This is a very typical experience nowadays. It is always something that is misplaced – keys, purse, wallet, power cord for computer, etc.

On Sunday night before Thanksgiving we stayed in a Residence Inn in Houston.  We were there to celebrate the holiday with our son, Kevin, and his family. She said she had forgotten her tooth brush; so I got one from the front desk. While preparing to leave, she found the one she had. She said, “Honestly, Richard.” I have a tendency to think that when she discovers something that was misplaced, she would feel better knowing that she had not done something strange with the item. She had simply overlooked it. On balance, however, I can easily see that she knows that the forgetfulness is getting worse and it bothers her a great deal.

It is not simply forgetting. She also overlooks things a good bit. For example, yesterday she told me that she couldn’t print because the printer cable was missing. When I went in to see, I saw that the cable was connected although it was mingled with a cord from a lamp.

Posted on

Kate Is Discouraged

Last Thursday was a painful day. I could tell Kate was discouraged. That evening we looked at a photo album of her parents. We both enjoyed reminiscing. When we got in bed, she said, “This is the best I have felt all day.”

Friday night at the theater, she asked for cough drops. I gave her 2 and asked where she was going to put them. At intermission she couldn’t find them. She finally found them in her purse. She said, “Welcome to my day.”

We arrived in Houston last night  to spend Thanksgiving with our son and his family. She had forgotten her toothbrush. I got one from front desk this morning. The next morning she found the one she had. She said, “Honestly, Richard.”

I hear people say when talking about someone with dementia, “At least she doesn’t know.” I am sure that is true in the latter stages of the illness, but I know that many people with dementia do know that something is wrong.

Posted on

Entertaining Is Becoming Difficult

The big thing in our lives right now is Dad’s 98th birthday party which we are having at our house this Saturday, the 29th. In connection with our preparations, I have had several observations related to Kate. First, she has really wanted to have the party and to work hard to be ready. At the same time these things introduce frustrations that would have been different in earlier times. For example, she decided to do 2 collages of photos to display in a frame during the party. One is of Dad with his family; the other with friends.

This seems straightforward enough and falls within the kinds of things that she likes to do. However, we have had to take pictures from my computer to upload to hers which introduces some frustration. She can’t remember where she loaded pictures. As she was working on the collages last night, she exclaimed how confused she was. I told her not to be too hard on herself and that she knows this is something she can’t control. Even as I said this, I recognized that this is a simple thing to say but difficult to do.

Last night she was trying to dial the phone number of one of her PEO sisters and kept misdialing. She ended up giving me the phone to dial.

She is also planning to host a PEO dinner on December 10. Fortunately all she will have to prepare is the chocolate mousse, but there will be lots of things to do to have the house ready for this group.

She has also indicated a willingness to host our  music club for its February meeting. I love the fact that she wants to do these things, but it concerns me that it introduces too much frustration in her life.