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Always Trying

Earlier this morning I walked into our bedroom where Kate was entering something in her iPhone. She asked me what channel CNN was on. I told her I didn’t know but that I would get it for her. She said the “Favorites” feature wasn’t working. I got the channel, and she asked me what number it was. I told her “1202.” She then entered it into her phone. This is a good example of the many things she does to help herself function better. I admire her for trying. At the same time, I feel sad as she works so hard trying to organize herself to prevent losing things or to help herself remember how to do things.

I continue to repeat the same old story. I don’t know that anyone else but her hairdresser suspects she has AD, but she has a serious problem functioning with daily tasks. This past week she missed another hair appointment which she rescheduled for two days later. She didn’t have it written down, and she hadn’t given it to me to write on my calendar. We had developed the practice of her telling me when her next appointment is right after she leaves her present appointment. We goofed. She doesn’t remember scheduling the next one; so she is going to have to call and either make one or jot down the one she made.

I haven’t said anything about Dad in a while. I suppose that is a good sign. That means he hasn’t had a lot of problems. This past week I have, however, noticed a change. Three or four days he has been very hard to wake up. One day this week he was so hard to arouse that we sat in the dining room for an hour without his becoming talkative – just saying he wanted to go back to bed. He didn’t eat the cottage cheese I had brought him, and we went back to his room before his dinner arrived. He just wanted to sleep. The next day he was fine.

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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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Going Through Different Phases

Right now I feel a little rushed. I have things to do to catch up on that I put aside when I was preparing for Dad’s party. Then it was the 50th TCU class reunion. Now we are leaving for Jesse’s for Thanksgiving. I have bills to pay and arrangements to make for various things. In addition, I continue to have responsibilities with Dad. In particular, I have been trying to work out a way for his blood sugar level to stay at a desirable level. I am concerned because he keeps having low blood sugar levels. The staff is concerned because he has high levels. He also had surgery on his right forearm this past Friday to remove a squamous cell carcinoma tumor. He is scheduled to go back next Monday to have the stitches removed, but we are going to Jesse’s that day.

At the same time, I am just becoming aware that Kate and I are moving into a new stage in our journey. Even before her diagnosis almost 2 years ago, I was taking a larger role around the house. She had given up cooking some time before then – perhaps 3-5 years. The only big change that occurred immediately after diagnosis was my making sure I spend as much time as possible with her. I started taking her to lunch everyday instead of eating alone. I was still working a full day at the office then. As time passed, she became bothered by the time I would get home after visiting with Dad. That led to my taking off work a little earlier so that I could spend the same amount of time with Dad but get home a little earlier. Gradually I have stopped working in the afternoon. I go to lunch with Kate. Then spend some time at the house working on the computer or other odd jobs.

Over the past 2 years, I have now come become responsible for almost all of the household arrangements except decorating and tending to her plants. Both of these things have been escapes for her. At least that is the way I view them. She gravitates toward them because they don’t involve any frustration for her. They are simple pleasures.

I have taken over almost all of her financial things. I had already before she had AD taken care of family trust activity. But now I have her American Express bill emailed to me and make the payment through her account. She doesn’t even know how much her bill is. She doesn’t see it. This morning she asked me if I knew where she keeps our envelopes. She wanted to mail a check to someone. She said she normally would have done an online bill pay from her checking account, but she can’t remember how to do that. I first found the envelopes for her. Then I told her I would be glad to help her with online bill pay. She indicated she didn’t want me to do that. I said, And I don’t want to take over everything for you.” She acknowledged her own need to continue doing as much as she can.

She did say there are somethings for which she would like help. I suggested we change our daily routine a bit. From now on we will go to lunch. Then we will focus on things that she needs help with. Then I will go to Dad’s. She seemed to like or accept that suggestion. So this is yet another step along a very long journey. I still think most people would not know what she is going through, but for someone as close as I am to her, it is a continuous series of incidents that are reminders that she has AD and it is getting worse.

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Dad Is Recovering

Dad has continued to improve, and I am optimistic that he will be better this afternoon when I visit him. Yesterday he was better, but he was grouchy and erratic in his behavior and comments. Part of this is normal for him. For example, he will say that he won’t eat something and then almost immediately start eating it. I took him some sliced peaches which he said were too hard and he wouldn’t eat them. Then he proceeded to finish them off.

I am trying to reshape my expectations for the staff at Mountain Valley. I simply think it is too difficult for them to do some of the required things and also develop a good sense of how an individual patient is doing. I feel I am going to be more observant of Dad’s condition than they are.

This week I am hoping to move Dad to another hall – 200. I have already discussed this with the social worker, and have identified the room to which he will move. Not sure that this will make any difference but Dad’s speech therapist believes it is a better hall.

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Dad’s Fall

Thursday morning at 3:30, I received a call from the night nurse on Dad’s hall. She was letting me know that Dad had taken a fall and cut his head and that they had called 911 for an ambulance to take him to the emergency room at UT Medical Center. He came through pretty well. Neither the CT scan of his head nor x-rays of his hip and leg showed any ill effects though they said to watch him over the next couple of weeks.

That night around 8:00 p.m. he called to report that there were a lot of people in his room moving things. I told him I would call the nurse’s station to see what was going on although I suspected he was imagining or had had a bad dream as he sometimes does. When I spoke with the nurse, Frederick he had just come from Dad’s room and there was no activity.

Yesterday I picked him up to take him to a surgeon to see about his tumor on his right arm. When I got there, he was still in bed. They had not gotten him up and ready for me. His call button was not in place. When I tried to get him up and into his wheel chair, I found it quite difficult. He simply wouldn’t wake up.

Getting him into the car was quite difficult because he couldn’t help much. He appeared to be drugged. The nurse on duty, said he had been up a lot on Thursday night and was probably just sleepy. This bugged me a little because it obviously showed that she is not sensitive to what he is normally like. Getting him out of the car, into the doctor’s office, in the car, and into Mountain Valley was difficult. Dad was simply out of it.

I told the nurses to watch him, that I felt he was not normal. They had him in the dayroom trying to feed him when I left him.

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Anxiety

One of the things that Barry Peterson touched on his book was the impact of caregiving on the caregiver. I have tended to minimize that, but during the past week or so I have experienced a sense of anxiety. It manifests itself in physical symptoms that have seemed either like a type of indigestion or angina. I have been doing my own self-diagnosis. At least 3 times I have felt it serious enough to take an extra aspirin when feeling symptoms. At other times I have taken Pepcid.

At this moment, I am feeling better. I do have a funny feeling that seems to be located in my esophagus above the level of my heart. Last night when I got into bed, I felt as though my heart rate had increased. I can only describe this as anxiety. I got up, took a Benadryl, ran in place for about 15 minutes, and got back into bed. I went to sleep rather quickly and slept well until Dad called at 4:27 this morning. As he does so often, he didn’t say a word. I would love to watch him when this occurs. What I imagine is that he is holding the phone out in front of him and can’t hear me say hello several times. When I have been with him I notice that he sometimes holds the phone upside down against his ear. Other times he holds the phone up to the side of his head but not over the ear.

This makes 2 days in a row that he has awakened me early. Yesterday morning he called at 3:30 and then again at 3:50. It was very difficult to understand him, but I got the message that he thought this was the end and wanted to say good bye and that he loved me. I never got back to sleep after that. I am getting to the point of debating about whether to tell him not to call unless he has some emergency, but I don’t want to prevent his calling if he really needs something. That does occur sometimes, but most of the time he simply wants to report that they haven’t brought him his breakfast or that nobody is around. I then tell him the reason is that it is the middle of the night and that he should just go back to sleep.

The point of my writing, however, is simply to say that I seem to be experiencing anxiety connected with all the things I have to do. Fortunately, business is better but I do have responsibilities for several other things – our music club, Rotary, the foundation, Sunday School, and another church responsibility I have just accepted. All that and being responsible for Kate and the household things as well as planning for Dad’s birthday party, our trip to NYC and our anniversary trip has made my plate pretty full.

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So what’s going on?

It has been a busy couple of weeks. Kate and I took Brian to New York July 17-21. We had a week to ourselves, and then we hosted the twins from Memphis. Yesterday afternoon we met Taylor at the airport in Nashville for a week’s stay. The twins are still with us and are actively having a good time. As soon as we got home last night, they played basketball, then took a swim, then watched the Olympics until just after 11:00.

During this same period of time, Dad has been getting along reasonably well. His latest challenge is a skin cancer on his right arm. We went to the dermatologist this week and found out it requires some careful attention. We had several options to choose from and have decided to take off the top crusty layer of the tumor and then go through radiation 3 days a week for several weeks. He is not in any great pain and is not experiencing any special emotional reactions to the procedure. He does continue to talk about his birthday party coming up on Oct. 20. I am feeling the pressure to get things organized, but that will have to await the departure of grandchildren.

In the meantime, Kate has enjoyed herself, but we continue to see signs of her Alzheimer’s. The other day she asked me for the umpteenth time how to view her pictures on her camera. I know she has hated to ask, but she increasingly doesn’t try to fool me about her memory. I am sure she does sometimes and suspect she is becoming more aware of how much help she requires. I really felt sad for her when she asked the most recent time she asked.

Recently she has said, “You’re so good to me.” I have several reactions to her comment. The first is again a sense of sadness for her. Another is one of guilt that I continue to lose patience with her at times.

Last night she asked me how to do something on her camera, and I showed her. Then she said, “You told me that before.” It was something that I didn’t recall her asking about and felt there was no reason for her to know; so I told her. She was so relieved, it was striking to me. I know she hates to encounter one instance after another in which she has asked about something but can’t remember it. I am continually running into numerous instances in which I have told her something, and a short time later she is unable to recall having been told.

This memory problem is an issue for the caregiver in that we frequently talk about events, issues, etc. in everyday conversation. It also limits the amount of conversation.

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Sometimes You Just Can’’t Win.

It has been almost two years now since Dad has been at Mountain Valley, a rehab and skilled nursing facility. During that time I have tried numerous ways to make life easier or more pleasant for him. Often I have been successful. The best things have been his birthday parties and going out to eat. On the other hand, there are quite a few little things that have failed. Early on he found he was unable to see the TV; so I bought him a table-top radio with a cd player. I found he couldn’t see well enough to work the controls. In a short time he had knocked it off the table and broken it. After that I tried a small transistor radio that was a real gem. I got ear buds so that he could listen to anything without disturbing anybody. That failed quickly as well. He could never work the controls and then broke the antenna.

There is no need to attempt a recitation of the many other things I’ have tried, but this week I found another issue. Dad got a new upper plate in the past 30-45 days. He complained that they wouldn’t stay in properly while he was eating which made it difficult for him to eat. I bought him some Fixodent and have been using it each afternoon when I visit him. He had mentioned, however, that he didn’t know where it was kept; so he was unable to use it at other times when I was not there. I put it in his top drawer and, unfortunately, assumed that either a nurse or CNA would help him. Yesterday afternoon when I arrived, he reported that his teeth were hurting him, specifically the roof of his mouth. He wanted to take his teeth out, but I said we were going down to the dining hall and thought he should wait until after eating. When we got to the dining hall, he complained again and I took out his teeth. When I did, I discovered that there was an enormous amount of Fixodent in the roof of his mouth. It turns out that he had applied the Fixodent himself and got too much. After that he didn’t feel like eating; so he didn’t touch anything except the soup I had brought him.

About 15 minutes ago he called to say that the roof of his mouth was very sore and that he couldn’t even eat a banana that I had left with him yesterday.

The point of all this is to express the feeling that many times I (and I assume other caregivers) can’t win. In fact, Dad is like a bull in a china closet. He can break almost anything around him. He is regularly losing things and always blames the staff. I am sure the staff is sometimes to blame, especially in the loss of things like his teeth and cell phone. At least twice his cell phone has been taken to the laundry. The same with his upper plate. On the other hand, Dad in his condition is hard on things.

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Miscellaneous

Yesterday was not a good day for Dad. Kate and I had gone out to together to see him with plans to go to dinner afterwards. When we got there, he was under the sheet and spread as usual. When I tried to wake him, I noticed that he was much more difficult to awaken than normal. I tried more than 5 times to get him from a seated position and into his wheel chair without success. Finally, he was able to turn around and sit in the chair. He did greet Kate but not in the normal way that he would have. He was very groggy. I also noticed that he was perspiring. This was not a special surprise in that he was under the covers and wearing a sweatshirt and the AC was not on. Yesterday was in the mid-80s.

We went to the dining room where he mostly sat in front of his food. He did eat his tomato soup and sampled his carrots and chicken and dumplings. He was never very alert during the whole time we were with him.

Kate and I went from there to Hathaway’s.  We have often done so on a Wednesday. We sat in a booth in the bar and enjoyed our usual dinner of grilled salmon with asparagus. As we often do, we also shared a key lime pie for dessert.

Kate had been to see Dr. Reasoner before we went to see Dad. She got a prescription for another medication (Namenda) the doctor had mentioned in earlier visits. She also got a prescription for something to help with hot flashes. When signing in at the doctor’s office, Kate forgot Dr. Reasoner’s name and came over to me to ask what it was.

I believe she was down a little after the visit. We spoke briefly about the visit at dinner, but she said she didn’t want to talk about it any further. After finishing dinner, she said, “”Could we just go home and cuddle?” Naturally, I said yes. I put on some music and got into bed and held her. I have mentioned in other posts that we have embraced more strongly and meaningfully since her diagnosis more than a year ago. Such was the case last night. When I first saw her this morning, I mentioned our having a nice evening, and she couldn’t remember. This is yet another example of how Alzheimer’s affects both parties. She felt she had had an experience but was robbed of it because she couldn’t remember. I was also disappointed because part of remembering is remembering together. I know that we will have more of these experiences as time passes.

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Problems with Dad

Yesterday Dad didn’t want to wake up when I visited him. I had arrived somewhat earlier than usual because I needed to get back home for Kate and me to get something to eat before attending a concert by a local choral group.

I took him several bananas thinking he might like/need the nourishment because he sometimes doesn’t eat much of what eats gets in the dining room. He didn’t hesitate to want to move from his reclined position to sitting up. We got into the wheel chair with minimal difficulty. He did seem somewhat more lethargic. We got to the library where I read him his mail. He made virtually no comment throughout. I finally decided to call my brother, Glen, thinking that this would arouse him. However, he continued to sleep in his wheel chair. I had a 7-8 minute conversation with Glen, and Dad never said anything.

Finally, I took him to the dining room. By this time he accepted a banana, and he indicated he would like a cup of coffee. I left him at the dining table before he finished. He had eaten his dessert and a few other things. He still was relatively uncommunicative. This is the first time I have observed this since the first week after he returned from his last visit to the hospital a few weeks ago. I have also observed more confusion since his return. In addition, he has had cold hands a number of times and the edema in his left arm and hands has continued without improvement. I have mentioned this to the doctor, but he has been unable to identify a specific cause. Somewhere along the way, I have heard that congestive heart failure can be correlated with swelling. I am beginning to think this may be the case.

Dad has also had more trouble with his telephone than in the past. I bought him a new one last week. Two nights ago, he called me 10 times and Glen 4 times. Most of those times he didn’t say a word.