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.

We’re on a different schedule today.

Kate slept unusually late this morning. I decided that given the flu, rest would be a good thing. I checked on her just after 11:30. She was still sleeping soundly. That gave me plenty of time to have my breakfast, wash, dry, and fold two loads of clothes, as well as checking the morning email and spending time on my blog.

In addition to rest, I know that she is supposed to get her Tamiflu approximately every 12 hours. That led me to wake her at noon. When I got to the bedroom, I saw that she was already up. I went back to the kitchen which serves as my office. I continued to work on another blog entry on social isolation that I will probably post on Monday while waiting for Kate to get ready.

Kate finally walked into the kitchen about 1:15 not knowing at all what time it was but ready to go. She was a little grumpy. In a cheerful tone of voice, I told her I was so glad to see her, and I wasn’t going to do anything to upset her day. She smiled. I gave her a hug, and she was fine. I had already decided to skip Panera and go straight to lunch at Bluefish. It was 2:00 when we sat down at a table. By this time I was already getting an impression that we were both making steady progress recovering from the flu. Except for having slept so long as well as several times she coughed, Kate seems back to normal. I also feel better but know that I still need another day or to before I am where she is now.

We left the restaurant at 3:05. I knew that Kate would not want to spend the rest of the afternoon at home; so I had brought our iPads and cups planning to go directly to Barnes & Noble. That is where we are now. Before settling down at my iPad, I had one of those experiences that every parent knows about but might not think of in connection with a person with dementia and her caregiver.

I selected a table for the two of us and gave Kate her iPad while I got her a passion fruit tea with lemonade. I returned to the table with her cup. Then I took out my iPad. Before I could start, she asked me where the bathroom was. It is located off the main area; so I don’t feel comfortable letting her go or return on her own. I closed my iPad and carried hers and mine as I led her to the restroom. I waited right outside and brought her back when she had finished.

This kind of shift from one thing to another is not a big deal, but it happens so often that it can be a problem for the caregiver. I should note that sometimes I can predict such things. In fact, this was one of those times. I had thought of asking her about going to the restroom at the restaurant. Then I thought I would wait until we arrived at Barnes & Noble. That plan failed when I forgot to do it. It’s another illustration that as a caregiver, I am frequently making these kinds of mistakes. There is just so much to remember.

We have the flu.

Since my last post two days ago, both of us tested positive for the flu. Like many others, we had had our flu shots last fall. Each of our doctors has prescribed Tamiflu. Kate has faired better than I. She was getting better before we started the medication. This morning I feel much better than last night when I took my first dose. So far this morning I have not coughed, and my aching feeling is much better. Of course, it is still early in the day, but I have taken my morning medicine. Maybe I’ll see more progress this afternoon. In the meantime, I cancelled the sitter for Kate. That is two times this week, but I feel the priority right now is to conquer the flu. We’re on the way.

I am always worried about illness might affect Kate. I do know that this past Monday, she was showing some signs of confusion. Since then, however, she has been pretty much normal except for the symptoms associated with the flu. I consider that a victory.

Making Progress on the Health Front

Today I received a call from Kate’s doctor’s office and made an appointment for this afternoon. Ironically, she seemed better today, both in terms of the cough and confusion. She didn’t get up until after 11:00 this morning. I heard a cough or two before she was ready to leave for lunch, but she has coughed minimally the balance of the day. I didn’t notice any drooling.

She had a low-grade temperature (99), but everything else looked normal. The doctor said she doubted that Kate has the flu but went ahead to test her. We have not received the results but should tomorrow. She suggested continuing what I was already doing, giving her Mucinex and keeping her hydrated.

As Kate has improved, my condition moved in the opposite direction. That was not a surprise since I experienced the first symptoms yesterday. If I have what Kate has, I should be making some progress tomorrow.

Update on Our Health

Kate is no worse today. She slept quite well except for a thirty-minute spell during which she coughed a good bit. I expected her to sleep late, but she was up early enough for us to leave for Panera around 8:00, something that is unusual. I, too, slept well, but when I awoke, I had a better understanding of how Kate must feel. I now have her cold. For me, the first symptom was the collection of phlegm in my throat. I suspect that will be followed by a sore throat. This seems very much like what we had during the holiday season.

The good thing is that Kate has gotten along reasonably well in terms of her cough. We spent all morning at Panera. That, too, is unusual. She usually only lasts an hour, perhaps an hour and a half. What surprised me is that she did not cough much, but when she did, it was loud.

Her behavior has been of greater concern to me. She is always slow when she walks and when she gets up from a seated position. Yesterday she must have cut her speed by half or two-thirds. It took her a very long time to get into and out of the car today. She was also very insecure when going up or down from a curb. At the restaurant where we had lunch, the hostess reached the table before we were even close to it. I signaled to her that she could go. We had to walk down two steps to the dining room. Kate was very hesitant. She almost appeared blind and was using her foot to indicate where to step next.

While we waited for our food, she sat with her eyes closed. She drooled on her top even though she had a napkin to use. I haven’t noticed any significant signs of confusion. She worked jigsaw puzzles on her iPad the whole time we were at Panera without asking for my help. That is different from yesterday. For example, as we got up from the table to leave the restaurant last night, she picked up the pen and folder that had contained our bill and was going to take them with us. When I told her we could leave them on the table, she did, but I am sure she didn’t understand why.

As we were leaving for dinner tonight, I noticed that she was wearing her underwear over her pants. I mention it to her, and she took them off.

I am waiting for a call from the doctor’s office for any advice they have for me. Otherwise, I just plan for us to take it easy and drink plenty of fluids. Kate has been resting for about an hour. That can’t hurt either.