Turning Point

On Sunday Kate went to the church library while I went to my SS class. After class I went to pick her up for the worship service. When we began to walk to the sanctuary, I could tell Kate was down and not so interested in going to church. I asked if she would like to skip today and go directly to lunch. She said, “Yes” and breathed a sigh of relief.

On the way to lunch, I told her I would not get her into a discussion but I wanted her to know that I saw her frustration and recognized that she doesn’t like to talk about her problem(s) but that I also felt I had to say I want to help her. She acknowledged that I was right and said, “I am feeling more frustration.” We didn’t discuss anything more, but I did ask her if she felt we were at the time to tell the children. She gave a strong no.

Yesterday afternoon I dropped by the church to pick up a DVD from one of our church staff. I saw several people and one of our associate pastors, invited me into her office. She offered to help me in any way if I wanted anything. This was the second time she has offered which confirmed that our senior pastor had told her about Kate. I suspect this means that all of the pastors are aware of the situation. We had a good, though brief, conversation about the situation. I told her I was struggling with whether or not to tell the children and that I thought we were getting to that point even if Kate does not.

After I got home, Kate received a phone call from her hairdresser who said she had left a message that she could take Kate for a 3:30 appointment. Kate had not checked messages; so she didn’t know. It was 3:40; so I offered to take her to the appointment. After picking her up, she volunteered that she thought she had reached a new level. I told her I agreed. She noted that it was not a dramatic, but a gradual change that has occurred. I agreed with that.

I have been increasingly worried about her driving. After picking her up, I had to leave for a meeting at a law firm at 5:30. She told me she planned to go to a Mexican restaurant near our house for dinner and leave at the same time I did. I told her I would feel better if she went to Panera. It’s even closer. She suggested she would be all right.

When I got out of my meeting, I looked at my phone and saw that I had a couple of voicemails, one of which was from Kate. I quickly listened to it. She told me she was back home and all right. Then she conveyed information that let me know she had been in an accident. It turns out that she was presuming that I had listened to an earlier message from a number I did not recognize. That was a call from the police officer who was at the scene, gave her a ticket for running a red light, and took her home.

Not everything is good

Yesterday afternoon we went to see the movie, The Book Thief. It is a good movie, but gut wrenching. Deals with the holocaust. As we were about to leave the theater, I said to Kate, “I hate to say this, but I fell asleep before the movie started and missed the beginning.” She sensed I was about to ask her how it began when she suggested going online. She seemed a little depressed which I associated with the movie. As we walked down the hall she said, “I can’t even remember anything about Captain Phillips,”a movie we had seen 2-3 weeks ago. I sensed then that she was depressed over not understanding the movie we had just seen. I have mentioned before that she finds it hard to follow movies and plays and it is frustrating. This time she was more depressed than usual. I said something intended to be supportive, and she gently said, “Don’t say anything. I know you want to help me.” We drove home quietly. I made a fire and thawed some chili from the freezer. We sat quietly in front of the fire until she wanted to go to bed. We talked very little during that time. Before going to bed she said, “I’ve been pitying myself all day.” I said, “You’re entitled.” After I had taken my shower, I got into bed and hugged her until we were both asleep

I am also realizing that her behavior sense Dad’s death is not entirely part of our grief. The weather has changed, the party is over, and she is not spending a good part of the day pruning. That was a major activity before the party. Thus she is left with little that she is able to do, but play Free Cell on her computer.

This has led me to go back to my thinking about telling the children about things after Christmas.

From the Mountain Top to the Valley

This past Monday morning at 6:20 am I received a call from Mountain Valley saying that Dad’s leg had swollen during the night, that it had developed blisters, and that the doctor felt he should go to the hospital for treatment. I concurred. When I saw his leg, I understood why they had wanted to do so. It was partially blackened from blood. The leg was swollen more than I had ever seen before. Subsequently I have heard doctors say it was the worst they have ever seen. They took him off Lovenox and put him on heparin. Then his hemoglobin dropped even lower than it had been in August when he was here.

I had already made arrangements for Kate and me to go to Nashville on Thursday to see Aida. Larry came over to relieve me. Friday while we were doing some shopping before returning to Knoxville Larry called to say he had spoken with the doctor. She had given him the news that there was little they were able to do for him except something extreme like amputating the leg and that he was too old and fragile for this. Thus hospice was recommended.

We came on back to Knoxville where Larry and I talked and quickly agreed that hospice was the only sensible thing to do. He left for Atlanta, and I told the on-call doctor that we wanted to move forward with hospice care. Even though that would not officially happen until yesterday afternoon, they quickly shifted their care of Dad to keeping him comfortable and making sure he suffers no pain. Ironically, he has not had pain and is not on any pain medication. It has amazed the doctor.

I spent the entire day with him yesterday. I emailed three of his good friends to tell them they could come by to say their goodbyes if they wished. One of them came by yesterday afternoon. Another may drop by this afternoon.

We have someone coming in at 7:00 pm each night and staying until 7:00 am. She had taken care of Kate’s mother for 5 years. She was the weekend day shift person, but she filled in when someone else had a conflict.

I should make a personal note about how I am feeling. My rational, logical side knows that this is a good thing – not that he is “sick” – but that this means the vascular dementia initiated by his stroke 3 ½ years ago will not lead him to a vegetative state. In addition, he would want to go out with a flare. For the past 12 months he (and I) lived for his 100th. There were times when he wondered if he would make it. He did, and it was everything we could have wanted. It was a great celebration of his life, and now he can go in peace.

Now for the emotional side. I find watching him die is emotionally draining. I find myself moved to tears through the day. I have tried to tell him I love him and that he was a good father. I have done so, but each time I have done it through tears. As I have read him email from friends, I have broken down in tears. When I have talked with the staff here, I end up in tears. Last night Kate and I went out for a late dinner. By that time I was feeling like I had gotten the tears out of my system. Then I came in this morning. He is so weak he can hardly speak. Periodically he is able to get out a word or two, but it takes all the strength he can muster. He is hungry, but it is getting difficult to swallow. I gave him a piece of peach which he wanted. Once in his mouth, however, he couldn’t swallow it; so I asked him to spit it out.

He gets worn out after eating or drinking anything. He asked that I lower his head. For some reason he never likes the head of the bed raised. At the hospital and at Mountain Valley, they always want it raised a little. He always asks me to lower it. After eating or drinking, his breathing gets more strained. I think that is because he aspirates some of everything that he swallows. He has done so since the stroke. Fortunately, it has not been so bad as to lead to pneumonia which is the expectation.

Yesterday when I spoke with the doctor, she said she thought he couldn’t survive more than 2 days to a week. This will be another blessing.

Mini-Crisis

Memory loss is generally believed to be the primary symptom of AD. For Kate I think it is the dysfunctional way she addresses everyday tasks. Part of this I believe may relate to memory. Let me give this example that occurred this morning and the previous few days.

Kate recently learned that she would be interviewing candidates for a PEO grant this morning. She knew that she would do this with one other other person. Knowing that I would need to take her because she would get lost, I asked her what time she was meeting. I did not ask the location because she has always met in the library. Kate told me she didn’t know, that she had the information in an email on her computer. I asked her again last night what time she had to be there. She said she would check. This morning I asked again. She simply said, “Not yet.” I asked again a little later. Finally, at 9:20 I asked again. She did not seem concerned but a little frustrated that I would keep asking. I told her that I only wanted to know because we might have to be leaving right away. She got upset and started to cry and said would call the PEO sister she was working with. I followed her. Kate didn’t know where her phone number was. She ultimately found it in her PEO directory and called her at 9:25. She found out it was 9:30. We rushed right over to the meeting place. We got there at 9:45 and found the building was closed. We went to another building to see if we could find any information that would help us. We finally learned where the meeting would be and got there right as the first candidate was leaving.

I know this was an embarrassing situation for Kate. This is the kind of thing that is going to catch up to her, and her friends are going to recognize that something is wrong.

In addition, I talked with Kate last night about her role in this year’s process of selecting candidates. I reminded her that when she finished the last time she said she would only help with the interviewing of candidates and would not get into writing letters of reference and helping the candidates get their applications in online. She did not remember this of course and did not like the idea. I told her if she wanted to do what she did last year, she should get me to keep the records, including contact information, for each candidate because she misplaces the information and then is frustrated when she needs info and can’t find it. This kind of thing is going to become a nightmare. We’re on the edge right now.

More Examples

Dad’s 100th birthday party is now less than 2 weeks away, and we are trying to put the finishing touches on the house, yard, and details. I have mentioned that Kate has worked incessantly trimming plants in the yard for months. She believes (correctly, I think) that pruning the shrubbery helps to let in light that ultimately leads to the shrub’s filling out. The problem I have seen from the beginning is that they looked good when she started, and I wanted to have everything looking good for the party. She has trimmed things back so much now that she is now going to spend money hiring someone to buy and plants new plants to fill in the bare spaces she has created. I have tried to diplomatically mention the need to stop pruning, but she has taken offense. I backed off and have let things go. If it’s bare, it’s bare. I’ll focus on other things.

Another issue is that we have been collecting gnats in the house. She does not fully rinse yogurt containers and other containers and plates and leaves them on the counter. Not wanting to hurt her, I told her the other night that I discovered a yogurt container that I had left in the house covered with gnats because it had not been rinsed well. I suggested that we would have to watch that if we wanted to control the gnats. It means nothing. She continues to leave items with food on them; so I am trying to control myself and just not say anything. While I can do this, it is quite frustrating.

Everyday Surprises

Today Kate is hosting her PEO chapter and is also doing the program. At last month’s meeting something came up about the September meeting. It wasn’t until then that Kate remembered that she was hosting it and that she had the program. A couple of weeks ago she was working on her program and felt good about her progress. Since then she has not worked on it. I think that is because she felt it was in pretty good order and wouldn’t have much to do to complete it. On Monday or Tuesday of this week I mentioned that it would be nice if we cut the grass and cleaned up the yard. Kate didn’t respond. Then yesterday while we were at lunch I mentioned her PEO meeting for today. She said, “It’s tomorrow?” She had completely forgotten. This is another example of my need to remind her of her commitments, appointments, etc. The trick is that she seems to be getting more sensitive about my playing a larger role and is quick to show me that she can remember, that she can be on time, etc.

I got the coffee ready for her and wrote a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. I wrote another note telling her that the half ‘n half was on the top shelf of the refrigerator in the kitchen. I went to Panera and bought bagels and cream cheese. I put the bagels on the island where she couldn’t miss them and attached another note saying that the cream cheese was in the refrigerator in the laundry room. Before leaving I showed her the notes and reviewed what she was to do and where to find things. Not too long after I got to the office I received a call. She asked in a semi-panicked tone, “What about the coffee?” I told her there was a note in front of the coffee maker telling her to press the on/off button 10 minutes before she wanted to serve the coffee. She then asked me where the coffee maker was. The surprising thing is that the coffee maker is always in the same place on the kitchen counter right under the cabinet that holds our everyday pottery. In other words, she opens that cabinet every day for something. These things don’t bother me at all except that I feel sad for 2 reasons: 1) It is another reminder of the progression of her illness and that things are getting worse and 2) I feel sad for her because I know she must experience an immense amount of frustration over such things.

Something that bothers me in a different way is what I consider her misplaced emphasis on priorities especially when time is short. First, on occasions when we are going somewhere together, I get frustrated when she spends time doing things that don’t need to be done at that time. Second, because getting ready for anything is difficult for her, I have to play a greater role in seeing that she is ready. I find myself getting irritated even though I know that she can’t help it.

This morning is a case in point. When it was 45 minutes before she was having company, she was outside piddling in the yard. When I went out to get her, she said, “I know. I am coming in.” This is an everyday occurrence. As I have mentioned several times, I think she gravitates to the yard because it is the one thing that she can do that doesn’t involve her feeling that she is doing something that is wrong or having me tell her she has done something wrong. I am sure that if a master gardener were watching her, he/she would point out many things that she is doing wrong or inefficiently, but this is one thing she can do without that kind of experience.

Because she can spend hours in the yard even when it is hot, I need to come home early if we are going someplace at a particular time. She isn’t able to answer the phone when she is outside; so I need to be home early enough for her to start getting ready. I cannot count on her remembering.

And More Signs

Late yesterday afternoon we returned from a trip to see Jesse in Memphis and Dorothy Hinely in Jonesboro. In the car I reminded Kate that she had a PEO meeting tomorrow morning. As I expected, she had forgotten. She couldn’t remember where they were meeting. She called someone and found out it is in Collierville, southeast of Knoxville. She called a couple of people to see if she could get a ride. That was a relief. I couldn’t have let her drive alone.

We went to Hathaway’s for dinner and had a special time. She went right to bed on our return home.

This morning I could tell she was somewhat disturbed. It turns out she had misplaced her PEO bag with all of her PEO information that she apparently is supposed to have at each meeting. All I know is that she takes it with her. Then she couldn’t find her credit cards and driver’s license. After taking her to meet her ride, I came back home and found her cards except for her driver’s license. In addition, she misplaced her ATM card a week or so before we went to Memphis. She had only had the replacement card a couple of weeks before losing it. She still has not found it. That was at least the third replacement ATM card she has had in the past year. If we don’t find it, we will have to get another one.

This continues to reinforce what I have said so many times. The person with AD really does recognize the problem and suffers dearly from it. It is just as frustrating to her as it is to me. We are reaching a point at which I need to take charge of everything. This is a challenge for me. For example, I really need to make sure she has her purse when we leave a restaurant or some other place; however, I just don’t think about such things. I will have to learn.

The other thing that still holds true is that her biggest problem is not in the kinds of things she has to remember when she is with people. She can handle ordinary interaction without people suspecting she has AD. The big problem is how well she functions throughout the day. She simply can’t get things done. I have to believe that within the year she is going to need to give up her work with the neighborhood association. I have a hard time imagining that she will get the directory done, and newsletters will be harder and harder to complete.

More Signs

Two days ago on Wednesday, we had another unpleasant experience. Dad was to receive his 65-year pin and certificate from the Masonic lodge. They went to Mountain Valley to present it. We were scheduled to meet at 3:00 pm. I left the house before Kate in order to get Dad dressed for the occasion. As I was driving out of the driveway, I realized it had been a while since she had been to Mountain Valley. I called her to make sure she knew how to get there. I gave her instructions. While Dad and I were waiting for her and the Masons, I received a call from her. She was lost though pretty close. I gave her instructions again. When she didn’t show up on time, we went ahead with the ceremony. After the Masons left, I called her and got no answer. I called several times. I even texted her to call me. She finally called me. This was now about 3:30 or later. She was located further away than when we spoke earlier. I told her to wait for me, and I would get her.

I got there and asked her to follow me back to Mountain Valley. I also set the address in her GPS but didn’t realize the sound was off. Just before getting to back to Life Care, I made a right turn. There was one car in between us. She didn’t see me turn. I called and called her but got no answer. It turned out that she had put her purse with her phone in my car thinking that she would drive back with me instead of following me. (I don’t know what she thought about how we would get her car back.) Finally she called me from a phone at a car wash that was about 2/10 of a mile from where I was waiting at a gas station. I told her to stay put and I would walk to her and drive her in her car back to where I was. I did so and then she followed me back to Dad’s where we visited with him while he ate his dinner. When we left, she was feeling quite low. I told her I was going to take her to dinner at Hathaway’s, something we do frequently on Wednesday nights. She was pleased. We had a nice evening together, but it was a frustrating afternoon for both of us.

The experience makes me concerned about her driving anywhere. She can get lost at any time. She has resolved to start using the GPS more regularly, but I am worried she will not be able to remember how to use it. This is just a small sign of what lies ahead. It’s going to be a rough road.

Reflections on our trip to South America

It has been almost 2 months since my last post. That is because of our recent trip to Peru (Lima, Cusco, and Machu Picchu) and Ecuador (Quito, the Amazon, and the Galapagos). Before the trip we were busy getting ready. We were gone 3 weeks and a day. Since our return, we have spent a lot of time getting back to normal living. Our pictures are mostly organized.

On the whole, the trip went very well – better than I might have predicted. I am, of course, talking about Kate’s AD. I did, however, find it challenging. We were on a fast-paced schedule that required getting up early, meeting the group on time, and hiking on unlevel surfaces. I had to keep my eye on her and hold her hand a lot. In addition, I not only had to get myself ready, I also had to make sure she got ready and had the things she needed. I didn’t always succeed in this endeavor. In particular, I should have taken greater control over the packing of her bag. She left without some of the basics like sufficient underwear and slacks. She ended up wearing some of my underwear, jeans, and a pair of nylon pants I had gotten for our trip to Jackson Hole in June.

I found it especially difficult traveling with Kate in a group. She has never had a good sense of time, but now she is almost completely devoid of any sense of time. The reason this was especially frustrating on the trip was the many appointed times the group was to meet. This meant that I had to make sure she was ready. Beyond that there were lots of other challenges like getting her wet suit on and off, getting her flippers on, helping her with snorkeling. Ultimately, she gave up on snorkeling, and I went by myself or stayed behind with her. I must admit that this was not our best snorkeling experience. The waves stirred up the sand, and we were never in truly clear water.

Since being back at home, she has had her own frustrations. She has been working a collage of pictures to share with our group of travelers. It is something she should have finished in a week, but she still hasn’t got it done even though several times she has indicated that she is practically finished.

A few moments ago, she told me, “I am losing it.” We hugged each other quietly for a few moments. Then she said, “Well, let’s move on.” She doesn’t want to dwell on her decline, but I know she worries more and more. As I have said in the past, I don’t believe there are many people who would ever suspect she has AD. That is because most encounters with people are periodic and involve a set of programmed comments. We ask, “How are you?” We answer, “Fine.” “What have you been doing?” “We just got back from a fantastic trip to South America.” And so on.

Yesterday Kate had lunch with  Ellen. As Kate’s closest friend in town, Ellen should suspect, but I doubt that she does. The ones who most likely to have suspected something are her hair dresser who has been aware of the confusion Kate has had about appointments and has missed a number. She has another church friend who mentioned something to our pastor almost a year ago. Beyond these people I doubt that anyone else would know.

Last week I noticed that she seemed to be a little depressed. One evening as we were talking on the patio, I told her I knew that she had had a frustrating week. She acknowledged that it had been a bad week. We didn’t go any further.

On the whole, Kate is still doing well. Her decline is very gradual, but she is definitely declining. What I notice is that she is much more likely to turn things over to me. She is even turning over selection of restaurants to me. In the past, I have usually asked her where she would like to eat and given her several choices. She would pick one, and we would go there. Now when I do that, she says, “You pick.” It is as though she just doesn’t want to be bothered with making a decision.

She also has many computer problems and needs to ask for my help. She is especially bothered when I am with my dad. She likes me to be around. Most of all she recognizes that she is less able to do everyday things. She is to fix sweets for next Monday night’s music club, and I am concerned about her getting this done and done right. This used to be her strong suit, but now she is not used to cooking. When she tries, the process is too confusing. She gets mixed up, and things don’t turn out.

We continue to be blessed. We continue to enjoy being together. We are even talking about making a trip to New Zealand or Russia or both next year. At the same time, everything I plan for the future involves some guestimate of what her condition will be like at that time.

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.