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Update on Kate’s Cold

Kate’s cold was a little worse yesterday. The good news is that she was in a good mood, and her cough occurred only periodically. She had one loud cough after we sat down for lunch but didn’t cough again until much later in the day. Even then her coughing was very infrequent.

She slept late but no later than on any other day. Our server at lunch had just about given up on us when we arrived close to 1:00. The most obvious sign that she is sick is that she is wiping more saliva and phlegm from her mouth than usual. I wish I could say all of it goes into the paper towels and napkins she uses. The truth is that she wipes a lot on her clothes. This happens all the time, but I am more sensitive to it now that she is sick. I want to avoid getting whatever she has, but it is going to be hard to protect myself. I washed my hands a lot yesterday and used hand sanitizer. I am also trying to avoid coming in contact with her clothes and hands, but that is tough.

She rested a couple of hours after lunch but didn’t appear to go to sleep. She also went to bed somewhat earlier than usual and without any prompting from me. She wasn’t asleep when I got in bed. That is beginning to be common.

She slept well until 3:00 this morning. That’s when she started coughing. It must have gone on close to thirty minutes though it seemed longer to me. After breakfast, I glanced at the video cam and saw that she was getting out of bed and looked confused as to where to go. I went back to the bedroom. She was looking for the bathroom. She used the toilet and brushed her teeth. In the process of brushing, she got her night gown wet. I got her another and put her back in bed. I suspect she will sleep until at least 10:30, perhaps later.

I had planned for us to attend the regional Metropolitan Opera auditions at a local college today. We have enjoyed going the past three or four years. They begin at 10:00, but I didn’t even think of trying to get there that early. I thought we would catch the last couple of hours this afternoon. Now I am doubtful about that. I don’t want to risk Kate’s coughing as well as passing along her cold to anyone else. That’s a shame because it is something she has enjoyed immensely, and it’s hard to imagine that we will be able to attend next year.

Yesterday I was reminded of how many lives are affected by dementia when I tried to reach a childhood friend and neighbor. I discovered she is now in memory care and unable to communicate. I am always saddened by news like that.

I am also thinking about a family member whose birthday is today. He was the husband of one of Kate’s favorite cousins. He is someone else who lived with dementia. We lost him five years ago. I have fond memories of conversations with him at Franklin family gatherings. We were both newcomers to the family and because of that connected in a special way.

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Something Unexpected

Every caregiver knows many of the daily tasks are routine. Along with those are a few unexpected things. They can be uncomfortable. We had one of those yesterday afternoon. As I have noted before, one side effect of Aricept is diarrhea. We have controlled that with an antidiarrheal. That has worked well. In the past few days, however, I’ve had the impression that Kate might be experiencing a little constipation. I’ve asked her about it, and she said she wasn’t. I have learned that she is often wrong about things like this. With that in mind, I decided to skip her antidiarrheal night before last.

Yesterday afternoon she had a minor problem with loose stools just as we were about to leave for her massage. She wanted me to show her where the bathroom is. I was surprised when we got there. She wanted me to tell her what to do. I showed her the toilet. She didn’t recognize it. I explained that she had to lift the lid. She was quite puzzled, so I lifted it for her, told her to drop her pants, and sit down. She said, “It’s got a hole in it.” I told her they were made that way so that one could urinate and defecate through it. Once she was on the toilet, I left her.

Very shortly, she called me. When I got to her, we were both upset, but for different reasons. I felt terrible about not giving her the antidiarrheal and thought she was upset about her accident. In the process of helping her, I discovered that she was upset about something totally unrelated.

This was one of those times that she began to talk as though we had been involved in something together. Thus, she thought I would understand what she was talking about. For me, it was like walking into an ongoing conversation and trying to figure out what in the world she was talking about.

What I heard first was, “I’m so sorry. It’s all my fault. I’m sorry to get you involved.” I felt bad and said, “It wasn’t your fault at all. It was all my fault.” She said, “Well, we both wanted to do the right thing.” As she continued talking, I got an entirely different, though never clear, understanding of what she was talking about. It was when she said, “I really wanted to help these people” that I understood that she wasn’t thinking about her diarrhea. It turns out that she imagined (my word, not hers) that she was working in some kind of overseas program helping the poor. I knew from past experience that it makes no sense to ask questions for clarification. That never works. It was better for me to play along as though I understood exactly what she was saying and why.

She continued to feel she had done something wrong. I tried to change her focus. I suggested that we both were trying to do something right and that things don’t always go the way you want them to go. She accepted that but never fully calmed down before we got to the spa for her massage. As soon as we were inside and saw her massage therapist, she looked somewhat calm, but tired.

After her massage, she and the therapist came out to the lobby. Kate was telling her therapist about this project she was working on. She mentioned how much the people need help and that they were smart. She expressed the importance of the project. I let her finish, and we turned around to leave.

As we walked out the door, she said to me, “My husband is working on it too. And he is really patient and can relate to them.” She continued telling me about her husband until we reached the car. I opened the car door, and she got in her seat. Then I leaned down to connect her seat belt, and she recognized me and said, “Oh, Richard, do you know him?” I told her I did. She said, “He’s a really nice guy. What’s his name?” I told her I didn’t know.

This may be a good place to interject that until she started talking about this project before we left home, she had seemed quite “clear-headed.” She hadn’t been especially talkative, but she seemed to know me as her husband and used my name several times. She has imagined things quite a few times over the past several years, but this talk about the “project” came on so suddenly that I was surprised.

She talked about the project all the way home. It was clear that my earlier thought was correct. She was talking about some kind of educational program in a foreign country. The only thing I can imagine that might have prompted this delusion is our experiences with two different trips with Overseas Adventure Travel. One was to Tanzania, the other to Peru and Ecuador. OAT has schools in both places and always takes its groups to visit them.

When we got home, she wanted to use the bathroom. When she came out of the bathroom, she asked me what she should do. I suggested that she work on her iPad in the family room, and I would join her. I put on some music and we relaxed there for an hour before going to dinner.

When we returned to the house, she worked puzzles on her iPad. I’ve mentioned previously that she is having greater difficulty working her puzzles. Last night she seemed especially confused. She couldn’t figure out how to work her puzzles and wanted me to work them for her. That seemed a bit strange, but she has wanted me to do that a few times in the past. I soon discovered that she did that because she thought we were choosing a puzzle to frame it and give to someone. She had a specific person in mind, but she couldn’t tell me who. She said it was somebody I had told her about. She wanted me to show her how to do the puzzles herself, but I tried in vain to teach her. I focused heavily on trying to get her to recognize the edge pieces, especially the corners. As hard as I tried, she never grasped it.

 

The good thing was that I was able to make her feel better. She thanked me profusely for helping her. She said I was the only one who recognized that she was smart. She commented specifically on the trouble she was having at that moment and the fact that she didn’t seem the way she usually is. That is one more sign of things that she is able to sense while being so seemingly “out of touch” with reality. The more she said, the more I began to think that she might be experiencing a reaction to Robitussin and/or Zyrtec. She started coughing night before last. I called her doctor yesterday morning. She suggested both of these medications. I told Kate about my suspicion and did not give her the evening dose.

I have since done a little exploration of the side effects of Robitussin and found that diarrhea is one of them. That could mean that my not giving her the antidiarrheal the night before may not be the cause of yesterday’s accident. I also noticed that I bought Robitussin-DM. When I did a search on dementia and Robitussin, I found something on the Alzheimer’s Association website that indicated that “DM” is contraindicated for people taking Namenda. That is one of Kate’s medications. Kate’s doctor had suggested either Robitussin or Mucinex. I think I will switch to the latter today.

Because she was having so much trouble, I got Kate to put away her iPad for the night and loaded Les Misérables in the DVD player. She watched intently for the next hour and didn’t want to stop for bed.

She slept through the night though she is coughing a little bit this morning. She is still in bed, and I am using my new video cam to check on her. I have discovered that the audio is particularly effective. After her first cough, I went to the bedroom. She coughed again, but it didn’t sound nearly as bad hearing it directly.

Today the sitter is supposed to come at 1:00. I am going to call the agency as soon as they open and cancel. I want to be able to monitor how well she is doing throughout the day.

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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.

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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.

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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.

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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.

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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.

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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

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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.

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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.