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Kate’s Recent Ophthalmologist’s Appointment

A year ago, I reported on what I thought might be Kate’s last appointment with her ophthalmologist. The visit hadn’t gone as well as any of us would have liked, and the doctor said, “Well, I have good news for you. You don’t need to come back for a year.”

When we made an appointment for August 28 of this year, I couldn’t imagine that Kate would be up to another visit when the time came. I suspect her doctor felt the same way. I knew the potential problem would be Kate’s ability to follow the instructions of the assistant who does the initial eye test before the doctor comes in, but I felt it was worth it just to have the doctor examine her eyes.

This year we had the added problem of wearing a mask. I haven’t had a problem putting it on her, but she doesn’t want to keep it on. She usually asks if she can take it off at least once before we get inside a restaurant or her primary care physician’s office. Her ophthalmologist’s appointment can present a bigger challenge because we usually spend a longer time in the waiting room. We were lucky this time. She was called in with fifteen minutes. By then, of course, she was ready to remove it. Both the assistant and the doctor were very understanding and let her take it off it until she walked out of the examination room.

The real issue this time was the one we faced a year ago. She can’t follow instructions. That is actually worse now than a year ago. Thus, it was very difficult to get her to understand what she was supposed to see when the assistant said, “Tell me what you see.” She looked at everything but the letters used in the eye test. The assistant was very patient and finally got her to see the appropriate letters. Kate was also patient although it was clear that she didn’t understand why she was having to go through this.

Once again, she ultimately tested well, 20/40. That confirms what we have learned in past exams. Her eyes are not the problem. It’s the Alzheimer’s that prevents her seeing well.

We had gotten through two hurdles, the mask and the vision test. The next hurdle was more of a problem. The assistant needed to put drops in her eyes to dilate them for the doctor. Kate quickly closed her eye as she put in the first drop. The assistant was concerned that she didn’t get enough on the first try, so she wanted to try again. Kate was frightened. I got up and held her hand and told her to squeeze it. I’m not sure that made any difference, but we ultimately managed to get the drops in.

When the doctor came in, she had been briefed by the assistant and decided not to put Kate through any more than necessary. She did the pressure test for glaucoma. Kate handled that remarkably well. I was surprised that she didn’t balk at the bright light the doctor used to looked at her eyes.

We made an appointment for another year, but I am doubtful that Kate will be up to it again. Of course, we’ll see. I felt the same way last year.

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Very Talkative at Latest Doctor’s Visit

Last week, Kate had a regular appointment with her primary care physician. She sees her doctor every four months though covid-19 delayed this one by ten weeks. The only thing that wasn’t routine was Kate’s behavior. She was unusually talkative.

As always, the doctor began by speaking directly to Kate. First, she asked a general question about how things were going. Kate said, “Fine.” Then she asked more specific questions, none of which Kate was able to answer. After the last question, the doctor asked if she could get my thoughts. I had sent her an update in advance of the visit, but I mentioned a few minor changes.

Something I said prompted Kate to jump in and say something complimentary about relationship. The medical intern who had accompanied the doctor asked how long we had been married. Kate turned to me, and I mentioned that our 57th anniversary was coming up on Sunday.

Then Kate took the lead. She began what was a lengthy (for a doctor’s appointment) description of my care for her and the closeness of our relationship. It must have surprised the doctor who had never her heard her talk so much.

It was noteworthy to me because it came after several other recent experiences at home when we have had long conversations in which she was the primary speaker. In those cases, everything was fabricated, arising out of an apparent delusion. This time it was because the subject matter is one with which she is very familiar and, thus, about which she is able to speak comfortably, if not accurately.

In a way, it both pleased and tickled me. I say pleased because it’s always nice to hear your spouse say good things about you. I also thought she beautifully conveyed the nature of our relationship to the doctor. It tickled me because she has always expressed her liking for things that are not “overdone.” I’m pretty sure that if she had been an outside observer, she would have said this went several steps too far.

At the time, I didn’t make too much of it, but since then she has been much more talkative. As I often do, I wonder why this is occurring and how much more may be in store. I reported that in the last post and plan to report more on that topic in a post about yesterday.

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Our First Virtual Doctor’s Appointment

The last several times Kate has been to the dermatologist have been unpleasant for her. The visits were not routine. She had a squamous cell carcinoma on her forehead. The first visit she had a biopsy. She reacted strongly to the local anesthetic and to the scraping itself. It took at least fifteen minutes to calm her. Although she didn’t remember that on the two follow-up visits, she must have sensed this was not a place she wanted to visit. She didn’t undergo any pain either of those times, but she was uneasy and eager to get out.

These experiences were on my mind when I noticed a couple of other growths that could be a problem. One is very near her left eye just below her eyelash. The other is on her back. I planned to call before the doctor’s offices closed but didn’t. While I was walking in the neighborhood earlier this week, I bumped into her dermatologist who is a neighbor of ours. She asked how Kate was doing, and I told her about the spots. She asked if I would like to schedule a tele-visit appointment. I jumped at the opportunity, and we met her at our kitchen table via FaceTime on Friday. It was during that short interval that Kate was awake. I think it was the doctor’s appointment that enabled me to get Kate up for a brief time following our lunch and before she went back to sleep.

I know this type of meeting with a doctor could be less than ideal. This one was a perfect situation. It took no more than fifteen minutes during which I sent her pictures of the spots that concerned me. In one case, she wasn’t sure what spot I was talking about. She drew a circle around the area and send it back to me. I was able to confirm that she saw the area I meant. It was scar tissue left from the biopsy she had taken in the fall. It is practically invisible now. The other two spots were both benign. Kate has had a number of these in the past.

This episode reinforced my thinking that our current situation may serve to speed up the use of technology for purposes like ours. It was convenient. More importantly, it was non-threatening for Kate. It would have taken at least three times as long if we had driven to her office. If only there were a way for Kate to have her teeth cleaned and checked via a tele-visit with her dentist. That’s not in the cards; however, there must be many situations like ours for which this would be ideal.

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Consult with Kate’s Doctor

Yesterday, for the first time, I had an appointment with Kate’s doctor without Kate. It was a direct result of Kate’s recent desire to remain in bed rather than get up for lunch. Coincidentally, yesterday was one of those days. This was the fourth or fifth time in the past two weeks. Like all but the first time, she was relaxed and smiling. She seemed to be in a good humor. She just wanted to stay in bed. That’s what she did. I wasn’t able to get her up until after the sitter left just before 5:00 p.m., and she didn’t want to get up then but agreed after my coaxing. She had been in bed over twenty-one hours except for a brief bathroom break around 8:00 a.m. We did get out for dinner, but she went to bed before 7:30 and went to sleep quickly.

I interpreted the first incident as a case of depression. The others didn’t seem anything like that. She was just tired. On the days when she was willing to get up (ten out of fourteen), she was very tired, unsteady on her feet, and felt very insecure. These signs made me think that it was a part of the natural progression of her Alzheimer’s. When her doctor offered to see me, I was happy to accept.

It was a good visit and reminded me of why we have valued this geriatric practice for over twenty years. It is a partnership between our medical school and our largest hospital system. My mom and dad were the first of our family to go there in 1998. Since then, Kate’s mother, Kate, and my dad’s lady friend have all had physicians in the practice. We have always been pleased. There is virtually no wait time. In addition, the doctors spend a great deal of time with the patient and the patient’s family. They are especially good with dementia patients because the doctors always recognize them as the patient. In a situation like this it would be easy for a doctor to look at and speak directly to the family.

I was only there thirty minutes, but I achieved what I needed. I had sent a note of several pages describing Kate’s symptoms over the past few weeks. She had a variety of follow-up questions. I gave her my thoughts about the likelihood that Kate’s changes were just part of the natural progression of the disease. She agreed and handed me a piece of paper with a set of symptoms characteristic of the various stages of Alzheimer’s. They were expressed more specifically than what I had seen before. We focused on those for Stage 7.

7a. Ability to speak is limited to approximately a half-dozen intelligible different words or fewer in an average day.

7b. Speech ability is limited to the use of a single intelligible word in an average day.

7c. Ambulatory ability is lost (cannot walk without assistance).

7d. Cannot sit up without assistance.

7e. Loss of ability to smile.

7f. Loss of ability to hold head up independently.

Clearly, Kate doesn’t hasn’t reached any of these stages. She is losing her ability to talk as well as her ambulatory ability. Her doctor told me that Medicare eligibility for hospice begins around 7c above. I found that sobering. My impression from personal experiences is that the mention of hospice often catches caregivers off guard. It did when my mom’s doctor suggested it was time. She died a few months later. The same was true with my dad’s lady friend. She died less than a week after the doctor recommended hospice.

I don’t mean to suggest that Kate is that near the end of her life. My mom and Dad’s lady friend were much further into their disease than Kate is now. On the other hand, it is a sign that we are much closer to the end than I have sensed. This makes me think about something that I have mentioned before. I hope that Kate does not linger for long. She and I have shared the desire to die quickly. I don’t think we are unusual in that regard. I would love for her to be spared an extended period of time when she is completely bedridden or resting in a wheelchair.

Over the past few months, Kate has occasionally worried about, or at least been puzzled by, what is happening to her – why she can’t remember important things like her name or mine, being married, having children, or being able to remember how to do so many of the activities dialing of living. I wish she weren’t so self-aware. That is painful for both of us.

Ultimately, what I am concerned about is not within my control. All I can do is make her as comfortable as I can and provide her with as much pleasure as I can. It is almost 10:00 a.m. as I close this post. She is still sleeping. I really hope we will be able to get out today, but that’s another thing I may not be able to control.

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Ups and Downs This Week, Mostly Ups

It’s been a busy week. My daily schedule has been interrupted more frequently than in the past. That means I’ve been less regular with my posts. Several times I have started one and not been able to finish because of something else I needed to do. Kate has required more attention than usual, but that doesn’t explain everything. The other things have involved household chores.

Tuesday was one of those days about which I didn’t say anything. I was especially interested in writing about the events of the day as a follow up to Monday when she had a rough beginning. Fortunately, I jotted down a few notes so that I can cover the highlights.

The day started like the day before. Her brain seemed to be “blank.” She was very dependent on me; however, she didn’t appear to be disturbed the way she was on Monday.

I don’t know that my own behavior played a role in the way she responded. I do know that I tried to be more careful in waking her than I had done the previous day. I played a full 20 minutes of relaxing music before going to the bedroom to wake her. When I entered the bedroom, she was awake. I said hello and sat down on the bed beside her. This wasn’t planned or intentional, but I think it may have played a role in conveying a relaxed morning, not a moment when I was eager to get her up.

She didn’t know her name or mine nor our relationship. When I said I was her husband, she couldn’t accept it. As I have done on other occasions, I suggested she think of me as a friend. She liked that. I mentioned a shower, but she didn’t want it. I didn’t push.

I told her I loved her. Though a bit unclear, she responded with what she meant to be “A Bushel and a Peck.” I pulled it up on the audio system, and we sang it together several times. Then I suggested she get up so I could take her to lunch. She got up easily. I had started to wake her with plenty of time for her to take a shower. When she didn’t shower, we were left us with additional time to get ready.

As a result, we got to lunch earlier than usual. She was very talkative and initiated a conversation as though we had never met before. She asked me what I did for a living. I explained that I had started out as a college professor. She wanted to know what I taught. When I told her sociology and social psychology, she asked me to explain. I did, and she said that sounded interesting. I went on to say I ended up with my own market research company. She didn’t know what market research is. I explained that, and she also thought that was interesting.

When I finished, I said, “Why don’t you tell me about yourself.” I knew this might put her on the spot but thought my question wasn’t especially threatening. She handled it well and said, “There really isn’t much to tell.” I told her I knew a lot about her. Then I recounted her academic background and teaching career. I pointed out that she had been a good student and had earned two masters degrees. Then I told her about her volunteer career as our church librarian. She was quite interested and added her own comments.

It had been almost a year and a half since she had had a cortisone shot for the arthritis in her knee. Over the past couple of months, she has complained about it periodically, so we went directly from the restaurant to the orthopedic clinic. She was very childlike throughout the visit but handled herself well. We waited in the lobby for about fifteen minutes. Assuming we might have to wait a while, I took along her “Big Sister Album.” I thought that would occupy her for a longer period of time than her iPad. She enjoyed looking at it and made a lot of comments. There were only a couple of others in the room. I am sure they wondered a bit as they heard me identify all the people including Kate herself as she responded much like a child listening to a parent read a book.

We didn’t wait any longer after going back to one of the examining rooms. We met with two different people. Kate didn’t understand a lot of what was said and asked for clarification. I helped interpret what they said. She never understood, but she was satisfied. As we left, she thanked everyone including those in the waiting room.

The most important thing I should say about the day was that it was one of the nicest days we have had in a long time. I think that relates directly to her mood. She was very happy and quite at ease. Her memory wasn’t any better nor was she any less confused about things like whether we were in Texas or Tennessee, but she enjoyed herself. I couldn’t understand everything she said in our conversations, but she was surprisingly sharp in terms of her understanding about the importance of values and the role of parents in teaching them to their children. She has lost so much of her rational ability that I really enjoy hearing her express her opinions, beliefs, feelings, and values that remain intact. It keeps me in touch with the Kate I have always known.

Recently, especially this week, our lives have vacillated between highs and lows. The highs have been very special, and we experienced them every day. They far outweigh the lows. I know greater challenges are on the way. I am counting on the Happy Moments to sustain us.

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Kate’s Latest Insurance Evaluation Interview

Tuesday afternoon, we had an appointment with a nurse representing the insurance company that provides our long term-care insurance. They send a nurse out every six months to conduct an evaluation interview with us. It is part of their due diligence effort to prevent fraudulent claims. I understand why they do it, but these are often uncomfortable interviews for Kate. They ask many questions that she simply can’t answer. In addition, she thinks many of the questions related to activities of daily living are silly. They include things like “Can you turn the shower on and off?” “Can you dress yourself?” “Can you touch your toes?” And “Do you have any problem walking?” Although Kate recognizes her dependence on me, she still thinks of herself as “normal.” A lot of the questions call that into question. To say the least, they annoy her. It is also awkward for me since I want to give them accurate information and don’t like to say that Kate can’t do things that she tells the nurse she is able to do. Most of the time the nurse looked to me, and I was able to shake my head or silently mouth to confirm or deny what Kate told her.

Coincidentally, I read a section of A Most Meaningful Life: My Dad and Alzheimer’s by Trish Laub that very morning. She and her dad had a problem with these interviews as well. Her father suffered depression afterward. She contacted the insurance company and told them they would not accept such evaluations in the future. I had this in my mind when the nurse arrived at our house.

This was the second visit for this particular nurse. I had spoken with her in advance of her visit and explained that Kate is now at Stage 7. She wasn’t familiar with the stages and didn’t remember having seen Kate before or that she has Alzheimer’s. I found that disappointing. As a nurse doing evaluation of someone with Alzheimer’s, it seemed to me that would be a given. On the phone she agreed not to go through the routine dementia test questions (“What day is it?” Who is the President?” etc.), but it became clear that this would have been a better interview if I had been answering the questions without Kate’s presence. Late in the interview, I asked if she and I could talk privately. Fortunately, she wanted to see our bathroom to check it out for handicap accessibility. We left Kate in the family room, and I was able to respond more openly to her remaining questions. She closed the interview after that. I will make sure that I exercise more control over the next interview.

Although Kate was quite annoyed at many of the questions, she didn’t immediately give any signs that it had a negative impact on her. She started to work on her iPad. Then she said she was tired and got in her new recliner to rest. It wasn’t long before she asked if we couldn’t go out to get something to eat. It was only 3:30, but we hadn’t been to Barnes & Noble in several weeks. I took her there. She didn’t say anything more about eating, so I only got her something to drink. In a short time, she wanted something to eat. I got her a cookie. As soon as she finished it, she wanted to go home. She had been working on her iPad and was frustrated, but it also seemed like she was restless and needed a change. I don’t ever recall her being this way before. Coming off the interview, I couldn’t help but wonder if the experience might have affected her mood. There is really no way to know, so I am withholding judgment; however, the change did occur after the interview was over even if it wasn’t immediate.

We were home about forty-five minutes before going to dinner. She enjoyed the dinner but wasn’t as cheerful as usual. When we got home, she worked on her iPad for a while but got frustrated and quit. She decided to go to bed. While brushing her teeth, she said, “Maybe I’ll be all right in two or three days.” I said, “You’ve had a rough day.” She agreed.

I am still left wondering how much, if any, the interview influenced her. I know that she has trouble working her puzzles anyway, but she was especially discouraged. The good thing is that she still felt optimistic that, perhaps, she would get better. This is not unusual. Many times, when she is trying to remember things, she mentions improving in the future.

Once again, I take note of the fact that even at this stage of her disease, she knows something is wrong with her and is still bothered by it.

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A Very Good Day with our Son

Our son, Kevin, arrived Thursday morning from Texas. Weather wise, it was the best day we have had since last May. We took advantage of it by eating lunch outside on the patio of a sports bar a short distance from our house. It was a good start to his visit. Although Kate often has difficulty remembering that we have children, she responded to Kevin as though she knew exactly who he is. We had a relaxing conversation. The fact that it was just the three of us and that it wasn’t noisy added to the pleasure of the moment. There were times then and later in the day when she asked him his name as naturally as she asks mine.

She had a routine dental appointment at 2:00. Kevin went along with us. I thought it was good for him to be a part of the experience though he remained in the waiting room while she saw the hygienist and dentist. For the first time, I went in with her. I did so because of her experience on the previous visit six months ago. At that appointment, she was frightened when the hygienist cleaned her teeth, and they had to cut her visit short. This time I gave her a Xanax before going and went in the room with her. Everything went smoothly. I didn’t think that had anything to do with my being in the room with her, but the hygienist felt it was helpful and suggested we make this a habit in the future. Both the dentist and the hygienist commented that her teeth and gums were in excellent condition.

Once we were home, I picked up Kate’s “Big Sister” album and suggested that she show it to Kevin. They sat down on the sofa and started going through it while I went to the grocery to pick up a few things for Kevin’s breakfast. In just the few minutes before I left, I could see that they were having a good time.

When I returned, they were still enjoying going through the album. Kate continued to relate to Kevin very comfortably. He had a beautiful opportunity to see first hand the kinds of things I have noted in the blog. Since most of the pictures are of family, Kevin was able to tell her all or most of the names. I joined them in the room with the intention of just listening to their conversation. Kate asked me to sit with them, and I did. There were a few things I commented on, but I let the conversation between the two of them continue. At one point, Kevin pointed to a photo of Kate and me and himself. She asked his name. He told her, and she asked his last name. Then she said, “Who are your parents?” After two hours or longer, Kate said she was getting tired. It was also time for us to prepare to leave for dinner, but this conversation, like others she has had with her brother Ken, was a beautiful thing to watch. I love seeing her enjoy herself. That is especially true when she is engaged in conversation with someone with whom she is so comfortable.

We finished the day with a good evening at Casa Bella for Broadway Night. Kate enjoyed herself as usual although she was a little lost in the conversation. The other two couples were there ahead of us which left us with minimal choices about our seating arrangement. Kate and I sat across from each other. We could have sat side by side, but she would have been seated with her back to the singers. Everything worked out well until late in the program when I saw her looking around the room for me. She had forgotten where I was seated. I was able to catch her attention and reached across the table to take her hand. She was relieved and teary but recovered nicely. I doubt that anyone else noticed except the woman seated next to her.

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Kate’s Final (?) Appointment with her Ophthalmologist

We may be reaching a point at which we no longer schedule routine medical appointments for Kate except for her primary care physician. It is becoming a matter of assessing the risks vs. the benefits.

Yesterday she had a routine appointment with her ophthalmologist. This is one in which I had a special interest. I have commented many times on her eyesight problems. Kate is unable to recognize that she has a problem, but she seems to see some things and not others. For example, she may not see a large object on a counter but notice a small spec of dirt on our carpet or small particles of food on a restaurant table. Until recently, I had attributed her vision issues to her Alzheimer’s rather than a physical problem with her eyes. Two particular issues, however, have made me wonder if it could be something like macular degeneration. In a phone conversation with her ophthalmologist I confirmed that at the time of her last check up in February, there were no signs of a physical problem and that it was unlikely that it would have developed since then. Nonetheless, I wanted to know for sure. Yesterday’s visit provided the answer. It was just what I thought. Her eyes are fine. Her vision problem must be related to her Alzheimer’s.

There is more to report, however. Appointments themselves are becoming a problem. Kate has little patience, and waiting is a normal process in most health-related professions. The notable exception is her primary care physician who is associated with a gerontological practice. The wait time in the lobby is not usually more than 5-10 minutes. The appointments are not scheduled as closely together. Her doctor, and the others we have seen, always take a lot of time with their patients, many of whom have dementia. They know how to relate to patients like Kate.

I don’t mean to suggest Kate’s eye doctor and/or staff are insensitive to the needs of patients with Alzheimer’s. They aren’t, but the system is set up for non-dementia patients. That means waiting times exceed Kate’s patience. Her appointment was at 1:15. She didn’t see her doctor until 2:15. To be fair, she was only in the waiting room about fifteen minutes. She spent another 15-20 minutes with the doctor’s assistant who was getting information, checking her vision, and giving her the necessary drops before the doctor arrived. That left about thirty minutes before she saw the doctor. Kate has trouble understanding the instructions anyone gives her, so that complicates every portion of the examination. Neither does she understand why she needs the exam in the first place. Yesterday’s exam was particularly difficult for both Kate and the assistant.

The good part is that she took it somewhat good-naturedly. She joked a lot, and both the assistant and the doctor got a kick out of her comments. Sometimes she was quite serious. When the assistant checked her eye pressure, Kate was startled, pulled herself away, and told the assistant to stop. Then she did something that surprised me. She looked at the assistant and spoke to her  as though she were a teacher. She said, “Talk slowly. Go one step at a time, and give me clear instructions.” That is exactly what she needs. Of course, not even that will insure that she understands. At the end of the visit, the doctor looked at Kate and said, “Well, I have good news for you. You don’t need to come back for a year.”

When we checked out, it was a challenge finding an afternoon appointment at our preferred location. We finally found one at 11:55 on August 28 of next year. I can’t imagine that Kate will be up to another visit when the time comes around. I feel sure her doctor felt the same way, but, like so many other things, we will see.

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Another Milestone in Our Journey

It was January 21, 2011, when Kate received her Alzheimer’s diagnosis. Late yesterday Kate had a routine appointment with her gerontologist. As I have done prior to other appointments, I posted an update to Kate’s chart via her doctor’s online portal. That way I am free to explain how Kate is doing without worrying about her feeling talked about or my taking over the visit. It worked especially well this time. The doctor took far less time exploring how she was getting along.

She began by asking questions of Kate. Because my report had mentioned a concern with her vision, she asked Kate to read a sign on the back of the door to the room. She was able to see the first word, “Our,” but not pronounce it. She never got to the rest of the words. The doctor asked about her daily routine. Kate hesitated and then mentioned something completely unrelated to the question and unintelligible to us. I had feared that they were going to go through the usual questions related to the President’s name, date, drawing a clock, etc. but was relieved that the doctor felt she had enough without going further. Kate also mentioned working in the yard, but, of course, that is something she hasn’t done in two or three years.

The doctor was accompanied by a man serving a residency with the practice. She asked Kate if it would be all right if she and I stepped out for a few minutes and let the resident collect some additional information. That was fine with Kate, and we left. While we were out of the room, the doctor gave me the prescription and application for a handicapped sticker for our car. That is something I had requested in my update. She also gave me a sheet with a detailed list of symptoms for the 7-Stage Model of the Progression of Alzheimer’s. She agreed with what I had already estimated, that Kate is at the end of Stage 6 and about to enter the final stage. I looked over the list when we got home. It seems rather clear that is correct. As I said in a previous post about two weeks ago, no one can provide a precise estimate of the length of any of the stages, but it was sobering to receive the information.

I thought back to the time of Kate’s diagnosis 8 ½ years ago. Kate and I both expected to hear that she had dementia. Hearing the doctor say it; however, had a great effect on both of us. That was also true for her current doctor’s confirmation of where she is now. I suspect most people who are around her would never guess that she is this far along. I am personally surprised that she is able to function as well as she does now that she is on the cusp of the final stage of the disease. I am able to see all the signs without any problem, but it seems to me that she couldn’t be at this stage just yet. I was also struck by the specific symptoms of each stage. There are quite a few for Stage 6, but very few for Stage 7. I am copying them below.

  • “Frequently lose the ability for recognizable speech although words or phrases may be uttered.” Just beginning for Kate.
  • “Need help with eating and toileting, and there is general urinary incontinence.” Just beginning for Kate.
  • “Lose the ability to walk without assistance, then the ability to sit without support, smile, and to hold up head; reflexes become abnormal, muscles grow rigid, and swallowing is impaired.”) Just beginning for Kate.

Like so many things, I find myself wishing I knew more precisely how much time we have, but it may be better that I don’t.

Looking back, I am satisfied with the way in which we have approached her diagnosis. Our goal was to make the most of whatever time we had. That goal has served us well. It is my intention to continue the same game plan. I realize that we will reach a point at which we are much more restricted in what we are able to do, but we won’t stop until I find that it is wise to do so. I remember that my dad took my mom with him wherever he went, except Kiwanis, until shortly before her death. I hope that Kate and I will be able to do the same.

This is one of those sad moments, but I want to emphasize that we are still experiencing happy moments and will do so for the foreseeable future. Apart from that, I have accumulated a treasure trove of memories before and since her diagnosis. I never imagined that we could enjoy life so much while living with Alzheimer’s. I am truly grateful.

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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.