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.

Deja vu and Salivation

Earlier today, I realized that I haven’t said anything Kate’s deja vu experiences in quite a while. That’s because they are much less frequent than they used to be. They had become so commonplace that I’m surprised that it took so long for me to notice the change. Now that I think about it, I remember her mentioning having been to several of the places we visited while we were in North Carolina at the end of September but not since. For years, she had “recognized” people and places that she had never seen before. The only similar thing that occurs now is her thinking that our house is either a previous house in Knoxville or her family home in Fort Worth.

One other issue is her  salivation. Over two years ago, she began spitting out her saliva instead of swallowing it. We experimented with several possible solutions recommended by her doctor. None of them worked. We even went to a gastroenterologist who felt the problem was a result of the collection of saliva in the throat which often happens as we age. Her dentist told us the same thing. I finally gave up. I started keeping a roll of paper towels in the car as well as a supply of unused paper napkins from places we eat. That had nothing to do with minimizing the problem. It only helped to prevent her wiping the saliva on her clothes. I bring this up now to say that the problem continues but seems to occur somewhat less frequently. I am still hoping it will disappear like the deja vu experiences.

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.

After Lunch

Once we were back at the house, I suggested we change clothes and relax a while. She told me she didn’t want to change. I told her that was fine. I got her a Tylenol to help the pain in her knee, and we sat in the family room. I started this post, and she worked on her iPad. We have been here a little more than an hour. She has been working on her iPad steadily and peacefully all this time. I thought all was well. Then she said, “I’m ready when you are.” I asked if she wanted to go to Barnes & Noble. She said, “I’m just tired of the same old thing.” We went to Barnes and Noble and were there about an hour before she was ready to leave. During the time we were there, she seemed fine.

On the way home, I stopped by Walgreens and bought a sleeve for her knee. I had no idea whether or not it would help, but I didn’t think the Tylenol had made a significant difference. I was ready to try anything. When we got home, I put it on for her. She immediately felt better. I should add that she hasn’t given it a real test so far. She has been sitting in bed with her leg stretched out straight. We’ll soon be off to dinner. That will give me a better idea of how well it works.

I just checked to see how Kate is doing and was pleased to see that her mood had changed completely.

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

Our Afternoon

Kate has a cold again. I had gotten it last week when Kevin was with us. Fortunately, mine was mild, I am hoping hers will be as well. Hers is accompanied by a cough that I didn’t have. That presents a problem in being in public places. When she coughs or sneezes, it is quite loud. I had planned for us to attend a play this afternoon but changed my mind at lunch because she was coughing so much.

On the way home, I suggested we stay at home. She said she would like to take a nap. I thought that was a good idea. At home, she went back to her bath to brush her teeth. When she came out, I gave her half a Benedryl assuming that might help relieve some of her symptoms while she napped. Then I noticed she went to the kitchen cabinet for a cup. It seemed clear that she was planning for us to go out. I didn’t say anything. I just went to get my jacket. When I got back to the kitchen, I looked out the door to the garage and saw that she was waiting patiently for me in the car.

As I started the car, she opened her door to throw a paper towel into a basket on her side of the car. As I think I have mentioned before, she brings home paper napkins from some of the restaurants where we eat, tears them into smaller pieces, and throws them into the basket. She does the same with the paper towels and toilet paper she uses at home to wipe the saliva from her mouth. When the basket reaches the overflowing stage, Libby, our housekeeper, empties the basket. Kate has never said a word about her habit, and neither have I.

That reminds me of something else that occurred the other night. As we were preparing to leave the house for dinner, she used her hand signals to ask if she should bring one of her family photo albums with us. I just said, “You can leave it here. I don’t think we will need it.” These are just a few more mysteries of Alzheimer’s.

We are at Panera now. She coughed a little after we arrived but that seems to have stopped now. I feel better about that. I had just about decided to leave and go back home. Kate was resistant to that. There are not too many people here now and none very close, so we may stay a while longer.

Getting Back to Life as Usual

Yesterday Kate and I took what I would call our first steps in getting back to normal after the flu. Kate was up somewhat earlier, and we got to Panera before 10:30. The best news of the day was that Kate’s cough has virtually stopped. That made for a much nicer day. We went directly from Panera to lunch and were back home in time for the sitter. Kate is still tired. She got right into bed when we got home. That is where she was when the sitter arrived. I brought Mary in to say hello and told Kate I was off to the Y. She remained in bed and stayed there another two hours or more according to the Mary. That is the first time I recall her resting so long with the sitter here.

I went to the bedroom about fifteen minutes ago to see if she were still sleeping. I saw that she was up. When I walked into the bathroom, I noticed that she had had another accident and went to get a towel to clean it up. When I returned, she was standing by our bed with her underwear and a pair of pants in her hands looking a bit confused. I asked if I could help her, she nodded. I asked what she needed. She said, “Something to wear.” In moments like these she looks so helpless. It is painful to watch. I went to her closet and picked out a top to go with the pants she had picked out (the ones she had worn yesterday and thrown over a chair beside the bed). I gave her the top, and she proceeded to the bathroom to take a shower. She can be very groggy in the morning anyway, but the kind of confusion I saw this morning can only be another sign of Alzheimer’s. It is just a little thing, but I see little things like this making their way into our lives. There’s no way to stop it.

This afternoon Kate has a facial at 2:00. Then we have Broadway night at Casa Bella this evening at 6:00. I am optimistic about our having a nice day.

Happy Valentine’s Day

I didn’t need a special holiday to celebrate our bouncing back from the flu. It is enough just to feel better. Today is clearly our best day in almost two weeks.
First, let me follow up on my previous post. In that one, I commented on the fact that Kate had not been in a good mood up until near dinner time. I am glad to say that she cheered up at dinner. She takes special pleasure in going to Chalupas where we eat on Monday nights. As I have described elsewhere, it is an especially friendly place where she feel very comfortable.

After that, we came back to the house where we adjourned to the bedroom where I watched the evening news, and she worked on her iPad. That has come to be a very good time of the day for us. We are both relaxed and without any obligations and know that we can go to bed any time we want.
Yesterday was a good catch up day. The only item on our agenda was haircuts at 3:00. Kate was up much earlier yesterday; so we arrived at Panera early. We stayed there about an hour and then came back to the house for another hour before going to lunch. After lunch, she was tired. She rested until time for haircuts. It was a quiet day but a nice one.

Today the sitter is coming again. I had cancelled last Wednesday and Friday because of the flu. I will go to the Y and then have coffee with Mark. We’ll have a Valentine’s dinner at 5:30 since they are booked up later. It should be another nice day.

Still Recovering from the Flu

We continue to make incremental steps forward in our recovery; however that isn’t the most important thing about which I’d like to comment. That relates to her mood today. She has been a little depressed, something that I don’t see that often. Part of the reason it made an impression on me is that she had a very good night’s sleep. She got up close to noon on Saturday and 11:00 yesterday. Today, I finally woke her up at 12:20. I didn’t rush her. She got up slowly, and we didn’t get to Panera until 2:00. Earlier this morning, I decided not to go to Rotary and to cancel the sitter. I think I did the right thing.

When she was ready, she was not cheerful. I didn’t think much about that at first. She is often not ready to engage in conversation when she gets up. She needs a little time. We were at Panera about an hour before I looked across the table and noticed that she was looking bored. I knew she was ready to go home. I asked to make sure, and she confirmed my suspicions.

It was about 3:15 when we arrived home. Recognizing that she was a little depressed, I asked if she would like to work in the yard. It’s not a beautiful day, but the temperature is warmer than we have had in a while. She indicated that she did not. I suggested that we might find a movie on TV or Netflix and watch it. She said okay without any enthusiasm. While she went to the bathroom to brush her teeth, I explored movies. I suggested an old Cary Grant and Audrey Hepburn movie. She indicated she didn’t want to watch a movie. I asked if she would like to look at some of our old photos from or past travels. She didn’t want that either. Then I gave her the iPad and told her to work on it in the family room, and I would find something. I found some old family photos her father had taken along with a couple of albums of our own and took them to the family room.

I sat down beside her and told her I wanted to show her something. I gave her the album with her father’s photos and let her look through them while I watched along with her. She enjoyed seeing them and took her time moving from one page to another. I was feeling good.

When she finished, I said, “Now let me show you something else.” I reached for a box of photos of our own and was going to show them to her. She said, “Do we have to do this now?” I told her no. I had already put on some music that I thought she would like and said we could enjoy the music while she worked on her iPad. She got up and went to the kitchen. In a minute, she had gone outside. I thought that might be a good thing. She hasn’t worked in the yard for more than a week. I think that is mostly because of the weather week before last. Last week, it was the flu.

She was outside for about twenty minutes before coming back inside. She asked if I were ready to go. I told her to give me a minute, and we would go. So here we are back at Panera where we are likely to stay for another 20-30 minutes before we head to Chalupas for dinner. I surely hope she feels better before bedtime tonight.