Dealing with Squamous Cell Carcinoma

Except for our regular appointments with our doctors and dentists, Kate and I have had little reason for medical treatment since her diagnosis. A year ago, Kate’s arthritis in her right knee led us to an orthopedic clinic for a shot of cortisone. She has gotten along well since then although she complained of a little pain a few months ago. More recently, I have asked her on several occasions if she felt any pain. She has always said she didn’t.

Four or five weeks ago, I noticed a small growth at the edge of her upper lip. It had been well over five years since she had seen her dermatologist. I made an appointment, and the doctor performed a biopsy. A week later, I received a call that the she has a squamous cell carcinoma. We arranged an appointment to have it removed. It was scheduled for noon yesterday.

I much preferred an afternoon appointment. That would have been much easier for Kate and for me as well. That’s because I would have to wake her earlier to have lunch before the surgery. Unfortunately, we would have had to postpone the appointment until much later. They didn’t recommend that.

Every time I face getting her up early, I do so with a bit of trepidation. This time there was no problem at all. Although I had to wake her, she got up easily. That enabled us to have a leisurely lunch and arrive at the doctor’s office twenty minutes before noon. I didn’t mention where we were going until lunch. Kate didn’t understand why we needed to see the doctor and quickly forgot. I explained again on the way over, but she never really grasped the problem.

The doctor who was to perform the surgery was not her regular dermatologist. This doctor is a specialist in squamous cell carcinoma. He immediately noticed that it was hard to see the spot where the biopsy had been taken. Her dermatologist had either removed a large portion of it or it had diminished since the biopsy. The specialist summarized five or six options for treatment. They included complete surgical removal, radiation, freezing, and a topical chemical treatment that we could give at home twice a day for three weeks. After a brief discussion, we settled on the chemical treatment. That requires a compounding pharmacist. I took the prescription to the pharmacy, but they said it would be 24 hours before they would have it ready. I’ll pick it up later today.

As you might expect, the whole process was confusing for Kate. I tried to translate the doctor’s explanations, but she never really understood why she was there and that she had almost had surgery. In this situation, I didn’t think that was a bad thing. She didn’t seem annoyed or frustrated by it all. She wanted to understand what the doctor was saying. She just couldn’t.

I had a United Way meeting at 1:30 and had arranged for our sitter to meet us at the dermatologist’s office at 1:00. She arrived a few minutes before that as we were checking out. Perfect timing. This was one of those times it was really nice to have a sitter. She was able to take Kate home while I went to my meeting. Kate mentioned that she was hungry, so they dropped by Panera on the way. That meant she had a second lunch, but it also helped Kate pass the time until I got home later.

The balance of the day went well. At dinner, we ran into three people we know and had nice conversations with them. At home, we watched an Andre Rieu concert from London on YouTube. Kate enjoyed it more than usual. I’m glad to report it was a good day.

Meeting Kate’s New Doctor

We are very fortunate to have an excellent gerontologists’ practice here. My mother and father were the first in our family to be patients there. That was 1998. Two years later Kate’s mother joined them. My mother died in 2002, and my dad had a significant other who became a patient. Kate became the next member of our family to go there. She had an excellent doctor who left the practice two years ago. Kate then switched to the same doctor that treated Dad. He was recently assigned to hospital duty. This past Tuesday Kate had her first appointment with her new doctor.

In advance of the appointment I sent the doctor an update on Kate. I have done that before each appointment for the past several years. It enables me to give the doctor an accurate picture of what is happening and the changes that have occurred since her previous appointment. I feel it is a better way to communicate than talking with Kate in the room.

I was very pleased with the new doctor. I went in with high expectations and discovered they were justified. My only previous connection with her was about six years ago when I spoke with her on the phone about my dad. She was on weekend duty and took my call to the office. I don’t remember why I had to call her or what she told me. I just remember that I was impressed with the way she handled my call.

Kate’s appointment yesterday was a simple checkup, not her annual physical. The doctor spent an hour with her. Most of that time she focused on getting acquainted with Kate. Very early in the conversation, she told Kate she would be asking her a variety of questions and would address some of them to me if that would be all right with her. This is one of the things I like about this practice. All of the doctors are very careful to make sure their patients feel they can express their own thoughts about what they are experiencing. That is difficult with Kate because of her memory loss. For example, on the way to the appointment, she complained about pain in her knee where her arthritis is beginning to cause her problems again. She didn’t remember to tell the doctor. When the doctor gave me a chance to make a few observations, I was able to bring that up.

Kate was quite comfortable in the doctor’s office. She was especially talkative with the doctor’s nurse who took her vitals before we saw the doctor. The doctor got to see a bit of her confusion about our relationship. Kate told the doctor that I was her uncle. She looked at me. My expression must have conveyed that wasn’t right. She asked me if that was right. I said, “Actually, I am your husband.” She was surprised. As we were leaving, she said goodbye to each of the staff we passed in the hallway.

It was a good visit. Her next visit is in four months. We had just started that schedule with her previous doctor. That seemed to make sense to me. Except for her arthritis, her problems are those associated with her Alzheimer’s. She seems to be following an expected set of changes that accompany that diagnosis. That is enough to deal with. I am glad we don’t have any other complicating issues facing us as yet.

Day 9: The Cold Becomes Something More

I was interested in getting an idea of how Kate was doing yesterday morning, so I tried to get her up for lunch. That would have given us time to be together as she was getting ready as well as at lunch. This was one of the many occasions when she just wanted to remain in bed. The first time I walked into the bedroom, she was lying in bed awake. I took a glass of water and asked if she would like some. She said, “In a minute.” She looked mildly confused or disturbed. When I asked if something were wrong, she held her hand up to let me know she didn’t want to talk about it. I sat down on the bed and said, “It looks like something is bothering you. Could you tell me about it?” She shook her head no. Then I asked if she would like me to let her rest a little longer. She did. I told her I would be in the kitchen if she needed anything.

About twenty minutes later, I went back to let her know that I would be going to the Y a little later and wondered if she would like to go to lunch with me or let the sitter help her dress and take her. She opted to stay in bed and let Mary handle things. Then I noticed she was wheezing slightly. It wasn’t much, but I took that as a warning sign and called her doctor. Unfortunately, they had just closed for lunch, but her doctor’s nurse called me back as soon as she returned to the office. She advised us to go to an urgent care center to have her checked.

We went to a nearby office that has quite a few locations in various parts of town. We have been to one of their other offices in the past. I like the fact that you can schedule appointments online and wait at home until they text you thirty minutes before your appointment. That doesn’t mean that you don’t wait in the waiting room, but the wait is significantly shorter. I also like that they have a TV that lists the order in which patients will be called. Both times we have used this system, Kate has been the next person called. That happened again yesterday.

This was a time I could have used my cards indicating that she has Alzheimer’s, but I forgot. Instead, I discretely told the woman at the front desk and the nurse who led us to the examination room. That was good because Kate had trouble following very simple directions like stepping on the scale to be weighed and where to sit. I knew that when we got to the x-ray room, she was going to have a problem. It worked out fine, but she did get confused and spoke fairly strongly (for her) to the nurse to be clearer about what she was supposed to do.

Her vitals were just fine. Her blood pressure (139/80) was higher than it used to be, but her temperature was 98, and here blood work showed no sign of an infection. She had lost five pounds since her last doctor’s appointment in the fall. Of course, scales can vary, but I couldn’t help thinking that might be a result of eating fewer blueberry muffins. That doesn’t happen nearly as much now that we are not at Panera every day. The x-ray, however, did show congestion in the bronchioles. Although it appears that she does not have a bacterial infection, the doctor put her on an antibiotic and advised us to contact her doctor on Monday.

She slept well through the night and had only one coughing spell that occurred shortly after going to bed. She was up at 6:30 to go to the bathroom. I took the opportunity to give her the next antibiotic and Mucinex. I didn’t detect any wheezing; however, a few minutes ago, I went to her beside and listened carefully. She was wheezing very slightly, less than she was yesterday. I hope we will see some improvement today.

Kate’s Cold and Her Pre-Operative Appointment for Cataract Surgery

I had hoped Kate’s cold would have improved significantly yesterday, but it didn’t. I am glad that it didn’t get worse. She had a good night, no coughing until the morning. Even that didn’t last long. That has been the pattern since her cold began five days ago; however, when she coughs, it is quite loud. Because of that I called the agency that provides our sitters. I arranged for someone come to the house this morning. I am attending a luncheon and need to be there at 11:00. I had planned to take Kate with me. Under the circumstances, I felt it was best that she stay at home. Our regular sitters were already committed to other assignments. This will be the first time that I have had a new sitter without having interviewed her before hand and letting Kate meet her. She will be here at 10:15. I will give her instructions and introduce her to Kate before leaving. If this is like most days, Kate is likely to be asleep when she arrives and continue to sleep after I leave. Kate needs help dressing now, so I will be eager to see how well she accepts the sitter’s help. I am already a bit uneasy about leaving her. The good thing is that we may be approaching the time when I need to add another sitter. It will be good to have someone else who might be able to fill in from time to time.

Speaking of sitters, yesterday was my day for Rotary. Kate was still sleeping when Valorie arrived. She walked into the bedroom with me when I told Kate goodbye and that Valorie was here to help her get dressed. She said, “Thank you.” Then she closed her eyes, and I left. Kate had a 3:40 pre-operative appointment with her ophthalmologist in advance of her cataract surgery scheduled for February 12, so I asked Valorie to take her to the office where I met them. Unfortunately, it wasn’t a time when I could talk to her privately to see how things had gone after I left for Rotary.

I was waiting for them in the lobby when they arrived. I stood up and walked over to Kate. She didn’t recognize me from a distance. When she got closer, she looked somewhat puzzled and said, “What’s your name?” I said, “Richard” and stopped to see if she said the rest of my name, “Lee Creighton.” She does that sometimes, but not this time.

Valorie left, and we took our seats in a separate waiting area for the pre-op patients. There were several other patients waiting and Kate waved and said, “Hello-oh” to them before we sat down. She didn’t do it in a natural way. It was more like someone with some kind of mental problem. I may have imagined it, but I thought several of the people gave her strange looks. No one returned her greeting.

We did not see the ophthalmologist on this visit. First, we saw her assistant who explained what we would need to do in preparation for the surgery and gave us prescriptions for three different types of drops we are to use several days before the surgery. Kate was unusually active in our meeting. I think she felt too much of the conversation was between the assistant and me. At one point, she said something that indicated she was the one to get the surgery and would need to know what to do. I was amazed at how well she understood that. She also stopped the technician a few times to ask her to tell her what certain words meant and re-explain what she had just said. It was an interesting combination of wanting to be on top of the situation but not being able to. It reminded me of her continual attempts to remember names, where she lives, or to understand the news she hears on the radio of TV. She wants to know but can’t remember.

When we finished, one of the technicians took us to a room where they performed two different scans of her eyes so that they can properly size the implant. Having tried to give various instructions to Kate since she got her cold, I took particular note of the challenges the technician had with her. The first issue was getting her to sit on the stool in front of the scanner. I suspect there were two issues. First, was her eyesight. As with many people with dementia, she often overlooks things that are right in front of her. Second, this was a short, round stool. It didn’t look like a typical chair. After she was seated, the technician asked her to “put your chin right here.” It took a little more coaching for Kate to know where to put her chin. The technician was very sensitive to Kate’s situation and treated her just the way I would have wanted.

The scans didn’t take long. We were soon on our way. As we walked out the door, Kate said, “I have no idea where I am.” I told her we were in Knoxville, Tennessee, where we live and were leaving the eye doctor’s office.” Although I had told her about the cataract surgery and the appointment, I know she can’t remember. Thus, the entire process must have seemed strange. I can’t imagine what it was like for her.

We went directly to dinner from the ophthalmologist’s office. When we got home, Kate started to work on her iPad while I watched the news. It wasn’t long before she encountered problems with her puzzles. She said, “What can I do?” I said, “I have an idea. Why don’t I put on some music on the TV while you get ready for bed?” She liked the idea. I selected several brief choral videos and then an entire concert by the Wartburg College Choir. She enjoyed it while lying in bed. At the end of the concert, I turned off the TV, and she gradually went to sleep.

Several times during the night, she coughed but not for long. She is still sleeping. I don’t intend to wake her before the new sitter arrives. I will introduce the two of them and then let Kate choose whether to get up or stay in bed. I would be very surprised if she wants to get up.

I feel like a parent leaving his child with a new sitter. I will be occupied while I am gone, but I am not going to be comfortable until I return home and find that everything went well.

Our Appointment with the Ophthalmologist

The biggest event on Kate’s birthday was her semi-annual visit to her ophthalmologist. We have been monitoring her cataracts for the past several years. During the previous two visits, they had reached a point that her doctor said we could go ahead or wait a little longer. After our discussions, I decided her vision wasn’t poor enough to necessitate surgery. Since the last visit, however, I had noticed what I thought was a significant decline in her vision. She was being exceedingly careful when going up or down stairs or curbs as well as pavement with light and dark sections or cracks. I wasn’t sure if the problem related to her Alzheimer’s or the cataracts or something else. Yesterday’s examination confirmed my suspicions about the decline and that the cataract in her left eye is the problem. We spent most of our time talking about the procedure itself and how comfortable the doctor felt about doing it with Kate at this stage of her Alzheimer’s. She was quite comfortable but said it was my call. At first I said I wanted to think about it and would call back with an answer. We talked a little bit more, and I decided to go ahead. We made an appointment for surgery on February 12. We have no plans to follow up with the right eye since it is a long way from requiring surgery.

It was interesting to observe Kate during yesterday’s examination. At the very beginning the woman who took care of the initial eye test asked how she had been getting along, if she had noticed any changes since last time. Kate said she could see just fine and had no problems. As the technician was about to jot that down in her record, I asked if she would like my impression. Then I told her that I thought the cataracts were causing more problems now.

It wasn’t easy for her to follow the instructions. When asked what she could see, Kate often asked, “Where?” She actually expressed some irritation when the technician tested her peripheral vision by holding up her fingers and asking how many fingers she could see. Twice Kate said in a stern voice, “Wait a minute!” The biggest challenge involved her reporting if she could see the “Big E.” That’s the one that encompasses the whole screen and must be 12” high. Kate first said that she couldn’t see anything. I think this was a result of her Alzheimer’s and not her eyes. I believe she saw the E but interpreted it as a bunch of lines and not a letter. Finally, she recognized it as an E.

The exam made me more appreciative of the challenges Kate has seeing everyday things. This happens a lot when we are in the car. I will say, “Look at that” and point to something. We often have passed whatever I was pointing out before she can figure out where to look. There are also many times that she doesn’t see objects that are in plain sight, for example, the clothes I lay out for her. She doesn’t know what to focus on. I believe this is largely a problem created by Alzheimer’s and not a physical problem with her eyes.

Having made the decision to have the surgery, I am now eager to see how much her vision improves. I am optimistic that it will help her feel more secure when she goes up and down curbs and stairs and across pavement. It would be great if it also makes it easier for her to work her jigsaw puzzles. We’ll soon find out.

Our Trip to the “Doc-in-a-Box”

The other day I wrote about Kate and conversation and mentioned that I wondered if she might not have a buildup of wax in her ears. This has been a persistent issue for her since childhood. Yesterday seemed like a perfect time to find out if wax had been a primary source of her hearing problem. On one other occasion, I took her to a local clinic (Doc-in-a-Box) to have her ears washed out. Since then, I had learned that you can go online and book an appointment. They will call you thirty minutes before they are able to see you, so that’s what I did. It was interesting that they ask if this was something that would require a nurse or a doctor. I indicated a nurse figuring that would make it easier to get in.

Except for a brief sign-in procedure to update our/their records, we waited only a few minutes. In less than ten minutes, they checked Kate’s vitals and put us in an examination room. Shortly thereafter, a physician’s assistant came into the room to take a look at Kate’s ears. She quickly discovered a good bit of wax in both ears. She left and someone else came in to handle the task of cleaning it out.

The interesting part of the experience was Kate’s response. After the PA came in and introduced herself, I introduced myself and said, “This is my wife, Kate.” To my surprise, she said, “And I am smart. <pause> That’s what my mother and daddy tell me.” Later, during the examination, she repeated that she is smart.

Once she was on the examination table and the PA started to look into her ears, she became anxious. She wanted me beside her and to hold her hand. Both the PA and the person who did the cleaning were very gentle and non-threatening, but the exam itself scared her. This has to be another consequence of her Alzheimer’s. Even though I told her where we were going and why, she couldn’t remember where we were or why. This was only the second time we had been in this office, and that was three or four years ago. In addition, she didn’t seem to understand the instructions she was given. For example, when she was asked to lie down on her side so the attendant could put drops in her ears, it was very difficult for her to understand. I wonder now if part of the reason was that her ears were blocked up.

After she had gotten the drops in one ear, she had to lie on her side for fifteen minutes. Then the attendant came in to “irrigate” the ear and put drops in the other ear. Once again, I could see the power of music. She wasn’t fully at ease yet, so I got my phone out and played one of her favorite songs, “Send in the Clowns” from A Little Night Music. She loved it and seemed to relax. I was surprised that she was able to mouth some of the lyrics before they were sung. From there, I played a variety of songs from folk to opera.

It took a little longer than might have been expected because they weren’t able to remove all of the wax on the first try. Kate got a little restless, and several times, she asked when we could go. While we were waiting, she asked, “Who are you?” I told her I was her husband. As frequently happens, she was surprised and didn’t believe me. A few minutes later, she asked, “Are you my daddy?”

As we were about to leave, the PA asked what we were doing for Thanksgiving. I told her we were going to Texas to be with our son and his family. Kate said, “What’s his name?” I am sure the PA understood the situation. Their records should have shown that she has Alzheimer’s. To make sure, I told the attendant who took Kate’s vitals. As I said earlier, they were very understanding.

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