Posted on

What To Do About Driving

When I got home from Dad’s last evening, I discovered that Kate had run into something in her car. Her right front headlight was shattered, the bumper was loose, and the hood of the car crimpled a little. She told me that she bumped into something in the Belk parking lot. She simply hadn’t seen it because it was dark.

By itself, this is nothing to worry about; however, this has happened multiple times. It makes me wonder now if it was AD that played a role in other incidents that occurred before her diagnosis. I am able to recall that she had a panic attack when she got lost trying to find my brother’s house in 2006 when she went to Birmingham for our niece’sshower. I seem to recall that Kate was concerned about having AD at that time. We played as if it were a simple case of being geographically challenged as we continue to do. It is very clear now that it is more than that, but it makes it easier to say something about being geographically challenged. The big question for me is when does she stop driving. I know that will be a low blow. It also means that I need to be around her even more than I am now. That would mean going into the office less which I could do although it provides a nice escape for me.

Shortly after returning from dinner, I gave her a hug and told her I loved her. She said, “I like having you home with me.” She has mentioned this on numerous occasions, and I take it as a feeling of security she has when I am around. She encounters so many situations in which she feels the need to ask me how to solve some problem. When I am not there she simply has to endure her frustration. To some extent she wants to do this. Neither of us wants me to do everything for her. In fact, last night she asked what she could do to help with dinner. I started to say, “nothing” but I told her she could get the plates ready. Her facial expression told me she was pleased that she could play a role in dinner. I generally shy away from asking her to help with dinner because I feel she will do things differently than I want them done, but I may need to change this approach.

Yesterday afternoon I spoke on the phone with our pastor. I had called to invite him to our Sunday school class Christmas party. He is the only one that knows about Kate except for our attorney and the State Farm attorney who is representing us in the accident case in Alabama. He asked about Kate and to his credit asked if I were home with her. I told him I was and that she was on the phone in the next room. For that reason we did not say much. He did comment that in the times he has been with her he could not tell that she has AD. I told him one had to be around her as I am to recognize it but that it is easy to see from my vantage point. He then said that his only clue might be that she seems to look to me when we are together as though she is looking to me for security. I told him that is the case – that she depends on me for that security.

Posted on

Happy Moments in the Midst of Sadness

We returned Friday night (this is Monday) from a visit with Jesse’s family for Thanksgiving. Everything went well. Kate got along well. I don’t think a thing happened that would give either Jesse or Greg a clue that she has AD. One thing I will note is that Kate seems to have developed a more positive view of other people than she had before. I have noticed this for a good while – perhaps a year. That starts with me. She tells me much more often than she used to that she is glad she married me, that I am good to her, etc. I see the same thing in her judgment of other people. In particular she comments about how smart people are. I think this is a reflection of her inability to do so many things and her seeing others do these normal things without any effort.

Now on to the reason I chose the headline above. This past Saturday we went to Gregory’s for lunch. Near the end of our meal, Kate wanted to take a moment to update her calendar. She is working harder to jot down things she needs to remember in her calendar. She asked me when we were leaving for New York. I told her Wed., Dec. 5. I also told her that I thought she had already entered the information. She checked and said that she had. She asked me what time we were leaving. I gave her the departure and arrival times. First, she is getting good at trying not to digest too much information; so she held her hand up to stop me when I went beyond the departure time. Before moving on to the date and times for our trip back to Knoxville the following week, she struggled to get the correct information into her calendar. It took several minutes before she was ready to move on. I then gave her the arrival time in NY. That took her a little bit of time. Then we went to the return trip. This became a struggle, and she finally asked me to do it for her. When I checked the departure date and time, I found that she had entered it incorrectly. My point is that this can be looked upon as a sad situation and a frustrating one; however, we both laughed through it from beginning to end. This is not necessarily typical of these situations, but it is common. It reminds me of the way Dad reacts in many situations. He will just smile and say, “”My brain just won’t let me do it.” It is really something going through these things with both of them, but it is good news that we are sometimes able to make light of the situation.

An hour after writing the above I received a call from Kate asking me for the phone number for the president of our neighborhood association. The interesting thing is that I had just given her his cell phone number 20-30 minutes earlier. She also has both his and his wife’s cell phone numbers and home phone in the directory that she was using yesterday to make calls. She specifically indicated she had their numbers. I am sure, however, that she is simply unable to remember where she put the number I had just given her or that she has their number in the directory.

Posted on

Some Positive and Negative Aspects of AD

Last night we returned from Fort Worth where we attended the 50th reunion of our 1962 graduating class at TCU.  We had a wonderful time. Clearly time had not erased the connections we had with our good friends from those days. For Kate the really good thing was that this kind of situation relies on long-term memory which, for her, is still good. That meant she was able to comfortably converse with people and enjoy them.

This made me stop and think how fortunate it is that it is the short-term memory that goes first because much of our interaction with people depends more heavily on our long-term memory. Before going, Nancy Hardwick (a childhood friend of Kate’s and also a friend at TCU) had sent us an email letting us know that Charlie, her husband (who was a former roommate of mine), was having memory problems and that we should always copy her on any emails to Charlie because he doesn’t remember things too well. As it turns out, if she had not mentioned this to us, we would never have known he had a problem.

These experiences underscore what I have mentioned a number of times before – the person with AD and his/her spouse recognize the condition long before others do. Although Kate got along beautifully as far as her relationship with the people with whom she interacted, I know that she had any number of experiences of forgetfulness that are painful to her. Her memory continues to worsen, and she recognizes it.

Not to take away from the stress for her, but it is also a challenge for me. Because she is so normal in most ways, I continue to respond to her in the same way that I have always done. For example, we had talked during the weekend about going to Sadie’s Cafe for breakfast on Monday morning before leaving. On Sunday night we talked about going there the next morning and returning to the hotel to finish packing. Right after she woke up on Monday morning, I told her I thought we might get ready to go to breakfast at 8:00 and the come back to the hotel to finish packing. I assumed that she remembered our plans for Sadie’s Cafe. When she was taking more time to finish packing, I said I thought we should go and reminded her that we were coming back to finish before leaving. She had forgotten that we were coming back to the room. She thought we were leaving for the airport in Dallas.

When we went downstairs, she walked in the direction of the hotel’s restaurant as I walked toward the door to go out to the car. She looked puzzled, and I reminded her that we were going to Sadie’s. She had completely forgotten.

When something like this happens, I recognize that I should know by now that she can’t remember. What I should do is assume that she won’t remember and say something tactful that gives her the information again without saying, “Remember, we are . . .” or responding after the fact, “I told you . . .” or “Don’t you remember?” All of these things hurt her self-confidence and bother her. I need to do a better job saying the right things instead of the wrong things.

During the weekend there were quite a number of incidents that she forgot about after my telling her something we would be doing at a particular time. She frequently asks me what day it is and then asks again later. This is one of the things she has in common with Dad.

The good thing is that I am the one who will see these things and not others. Hopefully, she will be able to hide her AD from the world for a while longer.

Posted on

An Example of What It is Like.

Kate and I are leaving Thursday for Fort Worth for our 50th TCU class reunion. I just got an email she sent to the secretary of our music club. In it she says she is free for a meeting this Friday morning or Monday morning. I called her to remind her that we will be in Texas both those times. She had forgotten. She repeatedly forgets the moment to moment things although she remembers many things from the past. These must be troublesome things for her. In fact, although we don’t talk specifically about AD, we have so many of these experiences that she doesn’t have to say anything for me to suspect how frustrating it is for her.

The other day she had some simple problem on the computer, and she said something about “This is going to be a long road.”

I bought new phones at the house about 6 weeks ago. One has been missing for at least 2 weeks. We have remotes that go with each TV in the house. They are not interchangeable. The one in our bedroom disappeared a few weeks ago; so we borrow from another one when we need it, but it won’t do all the same things the correct one will do.

Posted on

Don’t you remember?

Quite a while ago I mentioned that Kate had asked me never to use “that word  ‘remember.'” I feel like I have tried to honor this request, but I have failed miserably. It is amazing how conditioned I (we) have become to automatically saying that when someone fails to remember something we told them. Normally this is not a big problem, but with someone who has AD, it is. That is because there are so many instances of forgetting something that has happened or something you have told them. It seems particularly difficult because for a long time, the person does remember so many things. These instances of remembering reinforce that the person is normal. Our expectations then are that she should remember everything.

I have been unusually sensitive to this pattern in recent months, but I continue to say, “Don’t you remember?” or “I told you . . .” When I do this, I feel guilty because I know it is a constant reminder that she cannot remember. At least she does not ask me not to say this. I feel confident she does not remember telling me not to say this. Last night was one of those moments of confusion. I had reminded her the day before that I had a meeting of the executive committee of our music club at 6:30 pm and that it might be a long meeting since the first one had been long. I must admit that I was never too specific about this; so it may have been clearer in my mind than hers. Nevertheless, she thought I would be home much earlier than I was and got worried. She had envisioned that we would spend a quiet evening together following all the activity of the past few days. The reality was that I didn’t get home until 8:30, and we still hadn’t eaten dinner.

As I have said before, this forgetfulness is getting worse. It makes me wonder when the children and others will notice. I suspect we will get along without revealing her forgetfulness when we are with our children at Thanksgiving and Christmas, but next summer in Jackson Hole for a week is another thing. I hope for Kate’s sake, they don’t notice.

Another issue that Kate is facing (and I along with her) is a loss of self-confidence. She is learning not to trust herself because she knows she makes so many mistakes. Last evening her computer was not working after she had supposedly charged it. I asked her to bring me the power cord. When I tried to plug it into the computer, it wouldn’t go in all the way. I got mine, and we charged it. This morning I looked at her power cord to see if I could identify the problem. When I did, I discovered that the slim metal connector in the tip of the cord was bent. A couple of months ago we had to buy another power cord because the first one was broken. This happened because Kate lies in bed or sits in a chair with the power cord attached. The way she holds the computer it often presses up or down on the end of the cord that is attached to the computer causing the connection to fail. When I found the problem this morning, I was able to straighten out the slim metal connector, and it worked. I reminded her how that happens. She said she already knew and looked hurt because I was telling her. I said, “I know it seems like I am always correcting you. I’m sorry.” Then I said, “It must seem like everyone is always correcting you.” She nodded yes. To me this is a further indication of the small ways in which she is feeling less confident and confused about things.

Posted on

Dad’s 99th Birthday

This past Saturday we had Dad’s 99th birthday party at our house. We had a total of 58 people on a beautiful, sunny day. Kate and I both had a feeling of relief yesterday. She was absolutely worn out. We both went to bed around 8:30. Besides the weather’s being great,  everyone seemed to enjoy the party, especially Dad.

We did quite a lot in preparation for the party. We painted the outside of the house, had some electrical work done, got a new rug for the family room, bought a new love seat for the family room, cleaned up the garage, did more than the usual cleaning of the house, and Kate did a lot of work outside with her plants. All of these things needed to be done anyway. The party was just a catalyst to do them now. Of course, they don’t include all the things directly related to the party like invitations printed and mailed, selection of a caterer and menu, decisions about handling the crowd outside, inside, and what to do if it rains, etc. I don’t like managing details, and event planning is far from my strength. With all this done I can now focus on other things for a while.

Kate’s AD had quite an impact on me during the preparations and during the weekend, but I don’t think anyone else would have been aware of her condition at all. There are things that came up that could have potentially alerted someone, but to my knowledge nothing gave her away. One time she came to me as we were preparing to serve dinner to the family Saturday evening after the party. She took me aside and whispered in my ear, “Where do we keep the wine glasses?” I got them for her, and no one knew.

I was aware that the preparations put her under a lot of stress. I felt a lot of stress myself, but it must be double or triple that for her because of insecurity that comes from her inability to think clearly and to remember the many details required to pull off something like this. One of the things that was troublesome to me was her focus on her plants and landscaping when I felt we should be focusing on more basic things like the cleanliness of the house. I also felt the load was completely on my shoulders. She gets flustered by making decisions, and thankfully, defers to me for most things. That meant that she did precious little to manage any of the little things like meals for our family. I do wonder if people notice this. She has just bowed out of the routine things she would have done in the past.

Posted on

Two Quick Things

Here are 2 examples of the types of memory problems that are occurring regularly.

1. For several years we have used our house as a periodic B&B as a fundraiser for Kate’s PEO chapter. Last night and tonight we are hosting 2 ladies from Erie, PA. We got the call about this B&B approximately 4-6 weeks ago. Last week we received a reminder call. Kate and I talked about it, and she added it to her calendar. On Tuesday evening she called our housekeeper to ask if she could come yesterday instead of tomorrow to help her get ready for our guests. I reminded her it was Wednesday and Thursday. We got a call from one of the guests who said they would be in around 1:00 pm or so on Wednesday. I communicated this to Kate. When I got home from the office around noon, she was trimming the shrubs outside. I said, “You must be feeling pressure.” She asked why, and I said they would be here soon. It turns out she was thinking it would be Thursday and not Wednesday when they would arrive. She then did begin to panic.

2. Sometimes she indicates she wants to do something and then forgets about it. For example, she is working on an update of the neighborhood directory. This was prompted by a request from our new neighbors. Knowing how long it might take her to do a complete revision of the directory, I suggested she just send a copy of the existing directory. She firmly resisted this. I dropped it. Then I saw the neighbor on Sunday morning as I was walking. He mentioned the directory, and I told him Kate was making a revision right now. He said he would like to have one just as it is. I told Kate, and she said, “No problem.” And got one for him.

Posted on

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.

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

Busy Day

Yesterday was a Monday which is usually a routine kind of day. Here’s what actually happened. I got up and went to the Y as usual. Before leaving, I asked Kate what time she was to meet our neighbor to go for a walk. She told me 9:00 a.m. I reminded her that we had a funeral service at 11:00 and that she should meet me at the office at 10:30.

I received a call from her shortly after 10:00 asking if I could come home to get her instead of her meeting me at the office. I told her I would do so. When I got home she was quite flustered, and I told her to relax. She asked how long we had before leaving. I said, “Seven to 8 minutes.” Back into panic mode. She was also upset that she couldn’t find her slip. She remarked that she couldn’t ever remember where she put things. This is once again a reminder that the person with AD experiences much frustration and probably a lot of frustration that is never recognized by other people – even someone as close as a husband. I see the frustration on occasions like this, but I am confident there are many more that I never recognize, many of them that occur when I am not around or that she doesn’t mention.

We got away in about 10 minutes. I put on the second movement of Brahms violin concerto. I consider it one of the most relaxing pieces of music I know. I asked if she had taken her walk, and she said she didn’t want to talk about it right then – that she might feel comfortable talking about it later.

We got to the church in time. Before leaving I thought it might be good if we went to lunch together instead of my going to Rotary at 1:00. She liked that. At lunch, she asked if she could have a glass of wine, and I said yes. We both had a glass. We took our time before going to the buffet. During that time she told me that she had called the neighbor to tell her she would need to take a shorter walk in order to get to the funeral. The neighbor told her to come by her house to get her. Kate couldn’t find her house and then got confused about how to get back home; so she never got to walk. She called her when she finally got back home.

At any rate we turned the whole thing around into a very special time for the two of us. We had a leisurely meal in a quiet place and let the worries drift away.

Other things were also going on this day. I had received a call from a hospital client on Friday asking me if I would interview 4 patients who had undergone bariatric surgery. I agreed to do so. My contact was to email me right after we spoke with information on the location for Tuesday morning (today) as well as an agenda for the interviews. I still had not heard from her when I left the office around 10:15 am. Late in the afternoon I picked up an email sent at 1:00 with location and times. Even later I got the interview guide.

In addition, I had talked with the admissions office at Mountain Valley on Friday about moving Dad from Hall 100 to Hall 200. She was supposed to call me yesterday morning. I called her, and she said she would get “right back” with me. She never called. I called near 3:00 p.m.The person with whom I had sphad gone for the day. The person I spoke with this time agreed to let me make the move even though the staff that handles moving would be gone for the day.

I went to Mountain Valley right away and took care of the move. It went smoothly. Dad has a new roommate that may work out better than the one he left simply because the old one stayed in the bathroom for an hour or more at a time. The new roommate appears to be a dementia patient who is not communicative.

Dad, by the way, has not fully recovered from his fall a couple of weeks ago. He seems more confused and less like himself. He is eating reasonably well and is able to talk with you all right except for not hearing well.

On top of all this I am also mentally preparing for 8 weekly meetings with a small group I am leading at the church. We start tomorrow night. This will not be hard. It is simply a responsibility that I am not too eager to undertake at this time.