Latest Doctor’s Appointment and Opera Night

Kate’s getting up earlier helped to make the day go smoothly yesterday. We spent about an hour at Panera before going to lunch. Then we had just enough time to drop by the house to brush teeth before going a routine doctor’s appointment for Kate. This was an uneventful visit. Dr. Reynolds asked Kate how she was doing and if there were any special things she wanted to report. She didn’t have anything. That, of course, is not surprising. Even if she did, she probably would have been unable to remember it. I did mention that she had been sleeping later in the day but didn’t think we needed to do anything special to counteract that. I told him we had continued to keep up an active schedule. He asked that I drop the Ibuprophen I had been giving her. He doubted that the low dose I was giving her (one tablet in the morning and one at night) made any difference at all. I had also cut back on her acid reflux medication. He said it is best to continue as it was before.

From the doctor’s office we stopped by Barnes & Noble for an hour and a half. Then we came home and changed clothes before going to opera night at Casa Bella. I got Kate’s clothes for her. After I had changed, I went to check on her. She was wearing a pair of black pants I had given her but had not put on the top I picked out. I found it in the bathroom and brought it to her. She put it on. As she did so, I noticed that she had put the black pants on over the tan ones she had worn all day. I decided not to say anything. A few minutes later, I saw her going through a drawer in her bedside table. She took out a small plastic container that had several ball point pens. She also found a glove and put it in the tray as well. She took it with her to the car. We were off to Casa Bella.

As Kate started to get out of the car at the restaurant, I noticed that she was about to bring the pants she had brought to the car earlier in the day. I told her I thought she could just leave them in the car. She accepted that without a question. It has been a good while since she has expressed any reservation about following any suggestion I make. I feel this is further evidence of increasing sense of dependence on me to know what it best.

The evening went well. A new couple sat with us and the couple we always sit with. We had a good time getting acquainted. At one point, the wife asked Kate about her work. She said she was retired and had been a teacher. The husband asked her where she taught. She was stumped and said, “Around Tennessee.” I interjected and gave the names of the schools. The wife asked her what she taught. She was unsure what to say. Once again, I spoke up for her and said that she had been an English teacher and school librarian. The rest of the evening went smoothly. It had been another nice day.

Update on Salivation Issue

Two years ago this fall I heard Kate burping when she took her medicine. It wasn’t something she did all the time, just periodically. I’ve heard it even in the past few days. It hasn’t been a big issue, but a short time after it started, I noticed that she was wiping saliva from her lips. She used almost anything she could put her hands on. In restaurants, that was mostly napkins. In those restaurants with paper napkins, she would have used her original napkin as well as the small napkins under our drinks before the meal arrived. We regularly ask for more napkins. That was how she began bringing them home and depositing them in a basket in our garage. At home, she used toilet paper and lots of it.

I spoke with her doctor about it. I told her that it did not appear that she was having a reflux problem. It seemed like she was just not swallowing her saliva. When I talked with Kate about it, she found it repulsive to swallow. I was able to get her to try it, but she would never continue.

Despite my sense that it wasn’t a reflux issue, we began to think about the burping. The doctor thought it might suggest reflux after all. She had been on a reflux medication for a couple of years or so. The doctor recommended several ways we might address it. We started by increasing her reflux medication. Then we tried an antihistamine. After that we tried another medication that is supposed to reduce salivation. Nothing worked.

A few months later, her doctor accepted a medical director’s position in a clinic offering free medical care to those who need it. Kate’s new doctor prescribed another medication that reduces salivation. That didn’t work. Finally, we went to a gastroenterologist. He couldn’t find any physical reason for her problem. He did, however, say that as we age we seem to accumulate a little saliva in our throats. He thought that might be causing her not to swallow. We decided to live with the problem. Later, her dentist told me she had observed this among a lot of her older patients.

My update today is to say that the problem continues. She still goes through lots of napkins and paper towels. I keep a supply of both in my car. If we have any extra paper napkins at a restaurant, I am quick to take them to the car for when we need them. I often keep a couple of sheets of paper towels in my pocket. When she doesn’t have a paper product, she often uses her hand. Then she wipes the saliva on her clothes.

I know that she does swallow sometimes. One day at Barnes & Noble, I watched her for a while. During that time, she never wiped away any saliva. As recently as the past week, I also noticed a short time when she was swallowing; however, those are infrequent occurrences. I would like to think this is a problem that will just go away, but it doesn’t look like it.

Addressing the Knee and Sleep Issues

Yesterday via email, Kate’s doctor responded to my question about the pain in Kate’s knee. He suggested a referral to an orthopedic clinic associated with UT. We were fortunate to get in this afternoon. Her x-rays did not show a severe case of arthritis, but it is obvious that her mobility is hampered as a result of the pain she is experiencing. The doctor gave us a couple of choices. We opted for an injection of cortisone. I feel good about our taking action. We are headed to Texas next week, and I was worried about how Kate might handle the trip. Hopefully, this will help.

I also have a follow-up on the matter of her sleeping and the use of Trazadone. As he suggested, I gave her half of her normal dose last night. It didn’t help in getting her to sleep quickly, but it apparently lasted a long time. I let her sleep until 10:45 this morning. Then I felt I should wake her so that we could have lunch before going to the orthopedic clinic. She was sleeping soundly, so it took two other attempts before she actually got up. She was groggy at first but seemed fine after taking her shower. More importantly, from my viewpoint, she was, once again, in a good humor. We have quite a string of successes on that front. I just hope discontinuing the Trazadone doesn’t have any ill effects.

Kate’s Latest Doctor’s Appointment

Two days ago, Kate had a routine doctor’s appointment. It was a timely one in that she had caught a cold that I had had during the previous week. In addition, she has complained of a pain in her knee for several weeks. She had said it was mild, but in the past two weeks it has led to her walking more slowly as well as getting into and out of the car more slowly.

Dr. Reynolds listened to her lungs and asked her to cough. He decided to put her on an antibiotic and to let him know if the cough persisted after she finished taking it. As of last night, her symptoms had not changed; however, I am glad that we were able to address it quickly. She went to bed a little earlier last night, and she is still sleeping right now at 9:30. That is good since she was up unusually early the past two mornings. I am hopeful that she will make some progress in the next day or two.

As for the pain in her knee, the doctor believes it is arthritis and recommended that she take Tylenol as needed. I hope that will address the problem. I also wonder if part of the problem arises from lack of exercise. She spends most of her day in a sitting position since she has not been working in the yard. I am going to encourage her to do a little more walking. I’ve already mentioned that to her, and she was receptive.

The balance of the appointment involved the normal procedure. Dr. Reynolds asked her to tell him how she thinks she is doing. She said, “Fine.” He asked her what she does with her time. The first thing she said was that she works on family photo albums. She hasn’t worked on photo albums for at least two years, but this is a customary response when someone asks her about her activities. She didn’t mention working jigsaw puzzles on the iPad, but I did.

Until now, the doctor has scheduled Kate’s appointments every six months. This time he set the next appointment for four months. He asked both of us if that would be all right. We agreed. Of course, I don’t believe Kate thought anything about this change. I believe he was reacting to an email I sent him prior to our appointment in which I outlined the changes that had occurred since her previous visit. I also wondered if his suggestion of four months indicates an expectation that she may be entering a stage at which change is more dramatic than in the past.

Here are a few excerpts of my email to Dr. Reynolds.

Dr. Reynolds,

Here is a brief update prior to Kate’s appointment this coming Tuesday afternoon. My general opinion is that she continues to do remarkably well considering that it has now been seven years and two months since her diagnosis. We continue to be active and enjoy life and each other. That said, I definitely see signs that she is entering a new stage. Here are the most significant changes since her last appointment in September:

1. Her memory has declined. Although she used to have trouble with most people’s names as well as our grandchildrens’ names, she is now losing the names of our children. It is not unusual for her to ask me the names of our son or our daughter. Just moments later, she is likely to ask again.

 It’s not just people names. She is also forgetting that we are in Knoxville. She often asks, “Where are we?” or “Where am I?” when we are in familiar territory. In most cases, she means, “What city are we in?” Sometimes she means the restaurant where we are eating. We go to Panera almost every day. Several times recently, she has asked me the name while we are there. She often says, “Does this place have a name?” I believe that most of the time she does not know what city she is in or what place (restaurant, church, etc.).

 2. She has become more dependent on me. She regularly asks (frequently with hand not her voice) questions like “Should I put on my night clothes?”or “Should I go to bed now?” The other day at a restaurant, she asked (in hand signals) if she could take a drink of her iced tea. Although I have ordered her meals in restaurants for several years, she occasionally tells me to order for her. If I give her a choice of options, she often throws it back to me to make the choice.

3. She is more compliant. She accepts more of my suggestions than she used to. I notice that especially with her clothes. If she is wearing something that is inappropriate for the occasion or if it is soiled, she is more willing to change than before. She also takes more suggestions from me without putting up a fuss.

One area in which she continues to do well is in short-term social interactions. Both family and friends are still amazed at how well they think she is doing when they have been with her a short time. I am very grateful for this. It means that we can go places, and she seems to be normal. I think this helps other people respond to her in like manner.

One other comment. During the early stages of the disease, Kate was quite frustrated over her symptoms. She displays little or no frustration now. She is happy and generally good-natured. I am grateful for that. We never talk about her Alzheimer’s. She has simply chosen to go ahead and live her life as though she doesn’t have the disease. Although I would have chosen a different approach for myself, I am comfortable with her choice. Especially at this point, I see little reason to inform her of where she is headed.

We’ll see you on Tuesday.

Richard

Health Update

Kate and I have been fortunate not to have had any significant illnesses since her diagnosis. Almost two weeks ago, we both got colds. They were the first this season and very mild at that. Neither of us felt bad. The primary symptoms were a post-nasal drip and a mild sore throat for me. Kate had no visible signs of her illness except for a periodic cough. As of today, we are almost completely well.

The most troublesome health issue for Kate has been her eyesight. We have been monitoring the growth of her cataracts for the past two to three years. Monday afternoon she had her latest ophthalmologist’s appointment. She is now ready for surgery to remove the cataract in Kate’s left eye. For the first time, she was tested as “legally blind” in that eye. Situations like this require consideration of the value of the surgery versus putting her through the process. For me, it was not a difficult decision. We scheduled her surgery for January 23. For some time I had been concerned about her insecurity when she walks up or down steps. This is especially true at night when she walks much like some who is blind. I have also noticed her having difficulty looking at photos of family and friends. My only question has been how much of this is a function of her AD and how much is her eyes. There is no way to determine the future, but I felt being able to see better would improve her quality of life.

Symptoms

Yesterday our daughter Jesse called to coordinate plans for a couple of trips to see her and her family. Kate had just taken a shower and was getting dressed. I put the phone on speaker and walked back to her room. I told her it was Jesse on the phone. She said, “”Hi, Jesse.” Then she waved me out so that she could finish dressing. When she was ready, she walked by me as I was talking. Then she went outside to pull leaves. Before her Alzheimer’s, she would never have done this. She would have eagerly gotten to the phone and enjoyed a conversation with her daughter

I called Kate’s doctor’s office shortly after 9:00 this morning. I left a message for the nurse. Her doctor was out of the office today. They said the nurse would get back to me. I then called the agency that provides the sitter who was to have been here at noon. I let them know that we might have to go to a doctor’s appointment and that we might not need a sitter. They understood.

After getting up a second time this morning, Kate got dressed to go out for her muffin. She was moving very slowly and acted the same way she had been a good bit of the past 3 days, but we went ahead to Panera. We stayed for about an hour. When we got home, she went back to bed. At noon, I asked if she felt like eating. She said no. This was the first time she had not wanted to eat at mealtime during her illness. Before I ran out to get a sandwich, I received a call from the doctor’s nurse saying we could see another doctor at 1:30. I told her we would be there

Kate got up when I told her we had an appointment, but she was moving very slowly, once again walking as though she was very unsure of herself. They took us in right away and took her vital signs. Everything looked fine. The doctor asked for me to give an account of what had been going on. I did. She said they wanted to draw blood and get a urine sample and that the results would be available tomorrow

When we left, Kate seemed much better. We stopped by Panera to get her a sandwich and stayed an hour. As we reached the house, she asked, “What can I do?” I told her that she could work in the yard. Then she asked me, “Where?” I told her she could start in the back if she wanted to. Then we both came inside a few minutes. Then she asked, “Now what?” Before I could answer, she asked, “”My room or the bedroom?” I assumed she had decided to work on her iPad inside.” I told her that I thought she had said she wanted to work outside. She said, “”I would like to.” She was outside for about an hour before I went out to see if she wanted to get ready for dinner. She said she was just about to come inside anyway. When she is ready, we will go to Chalupas for dinner.

Doctor’s Visit/Medications

This morning at 9:30 a.m. Kate had her annual physical. This was the second visit with her new doctor. I was happy but not surprised that her weight was almost exactly the same this time as before. In fact, it may have been a pound or two less than last time.

The first part of the visit was with the social worker. This was also a person new to the practice. She had recently graduated from college but had interned with the practice her last semester. I was quite impressed with her. The interview reminded me of the one Kate had recently with the nurse engaged by our insurance company to determine her eligibility for in-home care. She had such a hard time on the questions related to math that she asked the social worker to move on, and she did. She had an especially difficult time subtracting 23 from 100. She finally guessed 97.

The visit with her doctor went well. He asked a lot of questions related to what she could and couldn’t do around the house, health care power of attorney, living wills, DNR instructions, whether at this stage she wanted to go through any treatment that might be required if a mammogram or colonoscopy identified a problem. He explained DNR, and Kate said at this point, she would want to be resuscitated. I would have said the same. We are to get back to him regarding mammograms and colonoscopies. I plan to tell him I don’t see a need to do any more.

Our decisions on the DNR as well as mammograms and colonoscopies represent new markers on her journey. I believe she has too much quality of life ahead of her to have a DNR. On the other hand, if she were diagnosed with cancer, I would not want her to have to undergo surgeries, chemo, or radiation

We also discussed the donepezil (Aricept) she is taking and whether or not we might want to discontinue it. He asked if we thought it had worked. I told him I wasn’t sure because I don’t know how she would have been without it. I also said that what I know is that the progression of her Alzheimer’s has been very gradual. He pointed out that there is some evidence that discontinuing is followed by a more significant deterioration. We are going to stick with it.

This discussion about the donepezil came about because one of its side effects is diarrhea. Kate has been taking 1 tablet of loperamide each night as well as 1 tablet on Sunday and Wednesday of each week. That seems to be the perfect balance to prevent diarrhea and avoid constipation.

I had completed an information sheet before the appointment. It included the kinds of things that she does or doesn’t do around the house like laundry, house cleaning, bathing herself, dressing herself, etc. It also asked about any in-home care. He asked me to explain. I told him that I had engaged Daybreak to provide someone to stay with Kate when I needed to be gone from the house. He wanted to know when that had started. I told him September 6. I was interested that Kate didn’t respond to this discussion in any way. I wonder if she understood or whether she just accepted without thinking it indicated a problem at all. I suspect she didn’t process it at all. There are times like that when she just tunes out and lets me take care of things.

We also talked about her salivation problem. He asked a lot of questions. We (I) described the symptoms as clearly as I could. I had already talked with him by phone yesterday afternoon. We decided then for him to make a referral to a gastroenterologist. We will hear soon about an appointment.

He probed for other problems. We just didn’t have any. Once again, I feel we have been fortunate.

Where does the time go?

I meant to check in before now and was surprised to see that my last entry was a week ago tomorrow. It has been a pretty busy week and a good one. Let’s see if I can hit the highlights. On Monday we went to see a neurologist, Kate’s regular doctor had made the referral after I had expressed interest in getting an opinion of a neurologist. As I have expressed earlier I hadn’t felt a special need for a neurologist until recently.

I liked the doctor, but I still feel unsure of our present need for him. He said that Kate was already taking the appropriate medication for someone with Alzheimer’s. I also was honest with him about my being unsure we needed him. He understood. We decided to start with an MRI so that he can see get a better grasp of her condition. He asked a lot of questions of Kate and of me to understand as much as he can, but I fully expected that he would want to avail himself of more diagnostic technology. Yesterday afternoon, we went in for the MRI. I suspect the results will be sent to the doctor early this week.

On Monday night we went to our music club meeting. Several voice students at UT provided the music for the evening. They were outstanding. Kate loved it. Two of the singers were people we had heard at Casa Bella.

On Tuesday we had lunch with an old TCU friend and housemate of mine who lives in Nashville. We have seen him on a couple of occasions when we have been in the area. This was another good experience for Kate and me.

For some reason I got all mixed up on Wednesday. That is the day for us to attend the Shepherd’s Center. I forgot and went to the Y as has been my custom. When I got home Kate was working in the yard. We have been to Lowe’s for plants three days this week; so she has been back in the yard. That, too, is good for Kate. I am happy she has this. We headed out to lunch about 11:30. When we had almost reached the restaurant, I remembered the Shepherd’s Center and that I had signed up for lunch. It was a little early and we had already missed our classes. Knowing Kate was hungry, I took her back to Panera’s for a muffin. From there we attended the lunch.

Thursday I had a morning meeting at United Way, a lunch meeting at church, and an evening reception and auction for the foundation. I felt bad about being away from Kate so much, but she didn’t seem to mind at all. A funny thing happened when I got home that night. I arrived home early, about 8:20. She was sitting in the family room with the TV on and working on her iPad. She said she had been sleepy but had stayed up. Remembering that on one other occasion, she had stayed up because she thought I had asked her to do so, I asked, “Did you stay up because I told you to?” She said, Yes. You told me not to go to bed until you got home.” Very shortly thereafter, she went to bed. She wanted me to come to bed as well, but it was too early for me. I delayed a little. At one point, she was disgruntled because I was taking so long. She said, “I think I’ll go back to Fort Worth and marry Rick Wainwright, (pause) but he’s dead.” Rick was her high school sweetheart. She didn’t sound irritated with me as she said it. She was just needling me.

That makes me think about humor in our relationship. It has become a regular part of our daily conversations. She likes to kid me about being vague in just about everything I say (or so it often seems to me). I have to be very clear, or she won’t follow me. It often happens when we are talking about someone or some event or place. I will make a follow-up statement like, “I haven’t seen her in a while,” or “I wonder who’ll be there?” Most people would understand that I was referring to the person or the event we were just talking about, but she usually doesn’t. I will then say, “I guess I wasn’t as clear as I could be.” She will roll her eyes. Then I say, “I will be clear next time.” She will say one of several different things. “We’ll see,” or “You’ll never learn.”

I can’t think of other examples at the moment, but we have a lot of interplay like this in which she is criticizing me for not remember or doing the right thing. By the way, she is often correct. I believe that it is because so much of her behavior is normal it elicits a normal response from me. In time it may get easier though I am not sure.

On a completely different note, I continue to observe that she is depending on me more for things that not long ago she would not have done. The examples I can think of involve clothes. When we get ready to go someplace, especially if it requires her to look nice, she asks, “What will (or can) I wear?” Then I will show her. I try to give her a choice of 1-3 things. I have learned why she has gravitated to wearing my socks. She has forgotten where she keeps her own. Now she just says, “I need some socks.” I go to her drawer and get them. Another example occurred this week when I took her to Target to buy some clothes for her to wear when she is working in the yard. She was quite comfortable with my picking out things for her to try on. After the first pair of pants did not fit, I brought her several others until we got the right size. What I did was move from the women’s to the men’s department. I got her 4 pair of slacks with a 40″ waist. I didn’t tell her. She would be horrified as she was at the neurologist’s office on Monday when she weighed in at 171. She had forgotten that she had been at 174 at her last appointment Dr. Reasoner.

The last point I will make today will be short. We have had a good week, one that had followed a couple of good weeks before. I feel good about this as I was very discouraged after our cruise in January. I thought our good times might be over. She is more dependent now and that saddens me; however, we can still have fun together.

Kate’s Latest Appointment With Her Doctor

Yesterday Kate had her annual physical. In advance of that, I had written a lengthy letter asking a number of questions and updating the doctor about Kate ’s condition. It turned out that my letter had not gotten to the doctor even though I had mailed it a week ago. I was able to chat briefly with her just before she went in to see the doctor. In addition to letting her know the questions for which I wanted answers, we talked about my being included with Kate and the doctor during every visit. We accomplished this by the doctor’s bringing me in the examination room and telling Kate that she thought it might be good to have another person who could her what was said. Kate agreed. Now I expect this to be a regular part of all future visits.

Before joining Kate, the doctor and I talked about the possibility of Kate‘s seeing a neurologist. She said that would be fine. She told me that not many of their patients see a neurologist. She thought that was because they have a much larger practice of dementia patients. Most people with dementia go to a regular family practice physician or internist, and they are not as familiar with the treatment of dementia. That made sense to me. I did explain that I thought it might be a good idea just to check in with one and not set up routine appointments with one. She asked how Kate felt about it when we were together. Kate looked to me and I gave my nod of approval. We didn’t leave with a referral, but if I don’t hear from the doctor by early next week, I will be in touch to arrange it.

We talked about Kate‘s PremPro and that her insurance company no longer includes it in their formulary. Dr. Reasoner had talked with them, and they agreed to continue it. We also talked about trying to wean Kate off of it. Dr. Reasoner said that would take 4-6 months. We are going to start that right away by her taking 1 pill every other day rather than every day. I’ll start that tomorrow.

We talked about Kate‘s being bored. Dr. Reasoner asked if she felt depressed, Kate said no, something that did not surprise me. She agreed that she is bored. We talked about things she could do to relieve the boredom. Dr. Reasoner encouraged walking, suggesting that would also be good for weight control. She weighed in at 174. That is 8 pounds heavier than six months ago. The doctor mentioned the Shepherd’s Center. I told her we knew people there and would check it out. I had already mentioned to one of them that I was thinking of doing that.

On the way home, I asked Kate if she would be interested in exploring a support group. She expressed an interest, and I am going to pursue this with the social worker. Kate said she thought now would be a good time to do this. She had not been interested in the past.

We also discussed Kate‘s customary visits to her OB/GYN. We decided to have Dr. Reasoner take care of all the things that he has done in the past. She gave Kate a pelvic exam. She also scheduled a mammogram and a bone density scan for March 28.

A Day of Confusion

Kate and I are both trying to recover from colds we got late last week. She got hers about 2 days later than I, but hers was more severe. Sunday (2 days ago) was very hard for her. She moaned and groaned very audibly. She often does this anyway, but this was much louder and more intense. She was miserable. Fortunately, today has been much better though as I write this post, she is saying, “Oh, Oh, Uh . . .” She sounds as those she is in serious pain. I am hoping tomorrow is closer to a normal one.

By that I mean our “new normal.” Given Kate’s decline, our normal is quite different than it was even 3-6 months ago. Today she has experienced several moments of confusion. This morning, for example, as we were getting ready for lunch, she said she was going to get her clothes and take a shower before leaving. In a few minutes, she came back to the bedroom where I was dressing and asked, “Did you say you laid out my clothes for me?” I told her that I hadn’t. This was apparently one of those occasions when she thought I had told her something but hadn’t. I can’t remember them now, but she mentioned 2-3 other things that she thought I had said.

This afternoon we went to her dentist to pick up her new night guard. She had lost the other one a while back and has been using a temporary one since a week or so before we left for our cruise in January. While she was with the dentist, I went over to Starbucks for a cup of coffee. I got a call that she was ready. When I walked in the door, I walked over to Kate and planned to leave. Kate told me that the dentist was going to come out and explain something. We waited about 10 minutes. Finally one of the women behind the counter called to us. I told her we were waiting on the dentist. She told me that Kate was all finished and that we were free to go.

Shortly after returning home from dinner this evening, Kate called to me. She said, she had left her night guard at the restaurant. She described to me how she had taken it out of her mouth, wrapped it in a napkin, and put it on the table. She just knew that it had been picked up and thrown out as trash. I called the restaurant to see if our server might have found it. She had not. I told them we had just picked it up this afternoon and that it cost almost $600. The person on the phone said they would be happy to look in the trash. Before I could answer, I could hear Kate calling to me that she had found it. It was in its container. I suspect this is only the beginning of many such occurrences.