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Back In Business

Yesterday we got Kate a replacement driver’s license. This is the second time in two weeks that we have done so. We have now placed the driver’s license and her ATM card in a small change purse and put it in the storage area under the console between the two front seats. I hope this works.

I know this has been hard on Kate. She has been stuck at home. Monday she was particularly cooped up. She was glad to have her license back for the psychological boost it gave her. One of the ways I notice she is down is that she pays no attention to dieting which she talks about for a few days and then goes off. While we were in Jackson Hole, she said she was going back to Weight Watchers as soon as we got home. She has made no effort to do so. She did take a stab at watching her diet a few days, but then gave in. I have not worried about this much since I feel that I want her to be able to enjoy herself as much as possible.

It is so hard for her to do much nowadays. She continues to devote herself to the yard. I think this is because it is one thing she can do. Everything else requires more thought than she wants to give. She even asked me to answer an email from the treasurer of our neighborhood association. She had offered to reimburse Kate for the newsletter she distributed in May or early June. All Kate needed to do was tell her how much to pay. She asked me to write it for her.

Before leaving for Dad’s yesterday afternoon, I could tell that she was down. I told her I would take her to dinner when I got home. I headed for a nearby Thai restaurant when she asked where I was taking her. When I told her, she didn’t react positively. I suggested another place, and she was happy about that. We went and had a good time as well as a good meal. It’s just that we spent more than we usually do for a weeknight dinner. Although someone might think we spend too much eating out, I feel that it is worth it. Before we started eating out for all our meals, I spent time preparing food by myself. Then I cleaned up by myself. Now we can spend that same amount of time together. Of course, I know that we won’t continue this forever. How long is the real question. I feel confident it could go on for more than a year and perhaps as long as 3-5 years.

Dad has continued frequent calls yesterday and this morning. At 3:00 yesterday afternoon he called to say he didn’t know where he was and that his phone was not working. When I was there for dinner, I asked him about both of these things. With respect to not knowing where he was, he said, “”Oh, I knew where I was, I just didn’t know what else to say.” As for the phone, he told me that it said it was Tuesday, July 9. I told him that was correct. He said it hadn’t moved all day.

This morning he called twice while I was at the Y. He said he didn’t know where he was but he was in a real nice restroom. It had bars on the wall that you could hold and everything. He went on to say that he was sitting on the side of his bed at Mountain Valley. I told him to stay there. I told him what time it was and that I would be there this afternoon. I got a call back in about 30 minutes. He asked if I were looking for him. I told him know. He said he was still in bed and that he was all right. I told him to stay there, and I would be there this afternoon.

I can’t help noticing similarities between some of the things he does and those that Kate does. They both get confused and don’t like to be questioned for explanations. Kate regularly says, “Let’s not talk about it now.” Dad says almost exactly the same thing.

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Odds and Ends

We still have not found Kate’s driver’s license. That means I am driving her wherever she needs to go. This Thursday is her monthly PEO meeting. I know she would like to drive since she wants to take a neighbor with her this week. I am not optimistic about finding it before then.

I got five phone calls from Dad between 1:52 and 2:12 this morning. He said he didn’t know where he was. He said he was on the floor and his legs were on each side of the commode.( I called Mountain Valley, but the phone never answered. I have since discovered that a lightning strike the other night damaged the phone system. It is now working.)

I got a couple of calls from him while I was at the Y this morning. He still did not know where he was and couldn’t find his call button. Dad has been going down and continues to have these periodic experiences in which he finds himself some place other than Mountain Valley. He is generally looking for help in getting him back where he belongs.

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Our 50th Anniversary

This past Friday we celebrated our 50th anniversary. I spent most of the day with Kate, and we went out to dinner that evening. This entire week we have reflected on the things we have experienced together. Our relationship continues to be special. Although it has always been good, it has taken on a different nature since Kate’s diagnosis. As I expressed before, I wish that I had been able to respond to her before the diagnosis the way I have since. I have been significantly more understanding and , thus, accepting. Many little things that annoyed me before (for example, the way she loads the dishwasher) I simply accept now.

This is also to underscore that many of the things that I attribute to Alzheimer’s are things that were manifest earlier. They are just significantly worse now. One example would be the fact that when she opens a pack of sugar substitute, she leaves it on the counter rather than putting it in the trash which is immediately below where she dropped it.

I continue to observe that she accepts her dependence on me. She wants me to help her with most of her tasks (PEO, neighborhood, calls to people, etc.). I acknowledge that this puts some degree of stress on me, but it is quite manageable right now. I know the future will be different. Adding to this is care for Dad. He celebrates his 100th birthday on Oct. 19. We begin to act as though he will live forever. While I know this is not so, he could live long enough to complicate my care for both of them. I suspect, however, that it will work out. By that I mean that he will pass away before Kate reaches a point at which she requires constant attention.

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Occasional Setbacks and “How am I?”

Thursday afternoon Kate took a call from the body shop that is repairing her car. They said her car was ready to be picked up and that the cost was just under $3,000. This is pretty close to their original estimate, but I had not told Kate how much it was going to be. She called me right away to let me know, and I could tell she was depressed. She had no idea what it was going to run. That has continued through today and has been reflected in a little irritability. I believe she is coming out of it though. When I returned from the grocery store about 15 minutes ago, she said she wanted to tell me she loved me. I considered that an apology for her mood the past couple of days.

In my previous post I was intending to say how each of us is getting along as we approach the second anniversary of our receiving the official news that she has AD. I believe I conveyed how she is getting along but ran out of time before commenting on my adjustment. Here it is.

On the whole I am doing well. I have made many adjustments. Among those has been accepting things that she does that are not the way I would do them (the way she loads the dishwasher, or leaves dirty dishes on the counter without rinsing). It also includes responding to her wishes more quickly. Things that I would have tried to explain, I don’t. That is because she stops me. It is amazing how many times she stops me during a given day. She simply says, “Let’s not discuss it.” I immediately drop the subject.

Thinking of my actions, I believe I am doing very well. On the other hand, I do feel the stress involved in taking care of Dad and Kate. It is remarkable how similar some of their symptoms are. One example is their desire not to discuss anything that I want to discuss or hear more about or to have them explain. I interpret this as occurring because the condition of their brains does not enable them to do it. The simplest things can cause problems; so explaining why she wants something or did something is just too difficult, really impossible.

The other things that cause more stress than I am accustomed to involve the sheer amount of time required to take care of them. For that reason I get behind on other things like returning phone calls, paying bills, or completing other tasks.

I am taking more time away from the office and will probably stop going in every morning in the next few months. That will give me even less time to do the various things I need to do for myself or to run the household, but I will be able to spend more time directly helping Kate. Her condition has given me much appreciation for the need for two people to run a household. Since I am doing it all, I am always hopping.

The last thing I would say is that my mood goes up and down. Sometimes I feel very good. At other times I am low. That is directly related to my experiences with Kate as well as Dad. I come home visiting Dad worn out from trying so hard to please him and discovering that it doesn’t appear to make any difference.

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Phases and Frustrations

I don’t think I was explicit on the change in my schedule as a result of care for Kate and care for Dad. Let me be clear now. When I learned about her diagnosis, I immediately changed my schedule as it relates to work so that I could spend more time with her. The care for Dad required more changes in my time at work. While I have never told the staff about Kate’s AD, I had let them know that she and I were going to try to spend more time together. I also told them I wanted them to assume greater responsibility for running the company. That has worked well. So well in fact that I do very little in terms of the daily affairs.

This evolution of the business as well as the growing needs of Kate and my dad have led to my coming into the office each morning, but I do only personal things. Some of that has involved plans for the 3 trips that we have coming up – -NYC in December, the Peru and the Galapagos in Feb/March, and the week in Jackson Hole in June. It also includes responsibilities with my SS class and our music club. I am occasionally asked if I am retired. I generally hesitate in answering by saying I spend less and less time at the office, but I believe I am really at the point of saying, “I am retired, but I go to the office in the morning.”

Now to the frustration part of this commentary. I find that even though Dad is in a nursing home, I feel the need to spend a good bit of time looking out for him. That involves taking something to eat each afternoon, making sure he has bananas, peanut butter, crackers, and Oreos as well as getting his clothes cleaned. In addition, there are routine visits to the cardiologist and less routine things like the dermatologist and the surgery he had last week to remove a tumor from his right forearm. He keeps me quite busy when I am with him. He always needs something.

Yesterday I took him to his cardiologist. We waited over an hour to see the doctor. I almost always take him someplace to get something to eat before taking him back. Before I could address this, he mentioned that he would like to get something to eat. I said that I had thought we might go by Wendy’s and get a baked potato. I have brought him baked potatoes on a number of occasions but not in 3-4 weeks. I like to give him a potato because he likes them and is able to eat and swallow them easily. However, he told me that he was getting tired of potatoes and wanted something else. While I went into his surgeon’s office to change an appointment from the coming Monday to this Friday, he thought more about what he wanted. When I got in the car he told me he wanted either a cheese omelet or spaghetti and meatballs. I thought for a moment and told him that we were not too far from a Waffle House and that we could get an omelet there. We went there. When the waitress came to the table, I told her he wanted a cheese omelet and asked him if he wanted anything with it like sausage or hash browns. He said that he didn’t. As soon as the waitress put the omelet at his place, he told me he wanted a waffle to go with it. I called the waitress over and let her know but told her not to put in the order until we saw how interested he was after eating his omelet. As it turned out, he didn’t want the waffle.

As we were leaving to go back to Mountain Valley, he noticed that Office Depot was directly across the street and asked me to stop in there to get him several ball point pens because the folks at Mountain Valley had done something with the ones he had had. I bought the pens and got back in the car. He then said, “I should have asked you to get some postcards as well.” At this point, I told him I would do that another time and that we needed to get back.

As we were driving he told me he thought he would need something else to eat. I told him that we would be arriving at Mountain Valley as they were serving dinner. I took him directly to the dining room, and after giving his nurse instructions from the cardiologist, I left for the day. The total time for all this was 4 hours. Had I stayed longer there would still have been things to do. For example, I noticed that he needed a shave, I hadn’t gotten his teeth brushed, etc. It never ends. Although he periodically says something about all the time I spend with him, he never really seems to be bothered by it.

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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.

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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.

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Everyday Life

Earlier this week, Kate expressed her frustration over my getting home as late as I do after my daily visit with my dad. I told her I would go out a little earlier and be home earlier.

I started this new schedule yesterday. This involves a clear choice to put her over Dad in that I like to make sure Dad’s teeth are brushed and he gets his sheet and bed spread covered over him.

Today, Kate had a routine appointment with Dr. Reasoner. She couldn’t remember the doctor’s name when asked to put it in a form. She has known her doctor for years and has been seeing her every four to six months since her diagnosis. I was a little surprised that she couldn’t recall her name.

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Frustration

I have commented a number of times about the fact that the person who has AD recognizes that she has it and finds it frustrating. For example, last night when I arrived home after visiting my Dad at Mountain Valley, Kate said, “Finally, you’re home. One day I’ll be dead, and you’ll still be visiting with your dad.” After that she apologized, and said, I’m just so frustrated.” I asked, “You mean by the general situation (trying to be subtle instead of “your AD.). She said, “Yes,” and then, “Let’s not talk about it.” We then went to the kitchen where we put some things together for dinner. I had cooked chicken thighs over the weekend. I made a chicken soup, and she sliced tomatoes and cooked green beans. Then we had a delightful evening eating outside with a glad of wine.