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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.

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Reflecting on Kate’s Social Isolation

Much is written about the social isolation faced by people with dementia and their caregivers. Isolation has had a significant impact on Kate. Until her diagnosis, she was a very active volunteer librarian at our church. She took this position after working  as a librarian/media specialist with the Knoxville schools. She derived much satisfaction working at the church. Even though she was a volunteer, she spent a lot of time there and developed a good relationship with the staff. She was included in their staff meetings and social activities. She often went to lunch with several of the staff on a regular basis.

In addition to the staff, she also got to know a lot of the church members and their children. Sunday school teachers often came to her for resources for their classes. If she didn’t have anything in the church library, she would find the appropriate material elsewhere and get it to the teacher. She developed a strong collection of books and media for children. As our church has a lot of young married couples, we added lots of children. Parents brought their children to the library. Kate loves children and cultivated relationships with them. She offered story time for children in Sunday school and in our weekly day school. Kate’s volunteer work at church became a central focus of her life. She only gave it up when she recognized the symptoms of Alzheimer’s made it difficult to manage her responsibilities the way she wanted.

After her resignation, I invited her to join the Sunday school class that I was teaching. She tried it periodically but never fully engaged. We had a lot of class discussion. I think she found it too difficult to follow.

Beside the church, she had two other important social connections. One of those was her very close friend, Ellen Seacrest. Gordon and Ellen had been good friends since the early 1970s. Our children grew up together, and we spent a lot of time together socially. They were the couple with whom we celebrated New Year’s Eve many years. After leaving her volunteer position at church, the relationship between Kate and Ellen grew stronger. Then after Gordon died in 2013, they became even closer friends. Except for Kate’s brother and his wife, Ellen is still the only person she has told about her Alzheimer’s. Two and a half years ago, Ellen had a stroke while visiting her daughter in Nashville. She was in the hospital followed by rehab. Several months passed before she moved into assisted living in Nashville. Although we visit her almost monthly, it is not the same as having her in town. In addition, Ellen’s speech was affected by the stroke, and it is very difficult to understand what she is saying.

I should add that Kate has had three other close relationships since we have lived in Knoxville. One of those died quite a few years ago. Another, Ann Davis, moved out of state for a number of years. She and her husband now live in Nashville. We often stop to see them when we are there to visit Ellen. The third close friend moved to Arkansas following her marriage after the death of her previous husband with whom we were also close friends.

There is one other social connection that was important to Kate but is now broken. That’s PEO. She had been involved with them for more years than I remember, At one time she was their chapter’s President. She frequently hosted meetings in our home and was occasionally in charge of the program. She was never close friends with any individual members, but she enjoyed and respected the members and valued PEO’s mission. She was especially supportive of PEO’s grants and scholarship program for women to attend college. Over time Kate’s memory of the members began to fade. That was especially true since they only meet once a month. The result was that she no longer felt comfortable going to meetings. For a while, I encouraged her to go, and she agreed to do so. Eventually, I sensed that when she was with other members, the conversation didn’t involve her as much. She didn’t know who was talking or grasp what they were saying. She simply couldn’t keep up. One time when I reminded her of her next meeting, she told me she had resigned and wasn’t going anymore. I never pushed her after that. I spoke with one of the past president’s who had been sending me all communications since Kate did not read her email. I informed her that I thought it best if Kate resigned. She suggested that she simply go on inactive status. I agreed to that. We still pay her annual dues as well as making a contribution to their annual fund drive, but Kate is no longer involved.

This is a sad story. Kate, who had had several very strong social connections, now found herself without a close friend in Knoxville. I know that she is not the only person with Alzheimer’s who has faced this problem. It can be hard to avoid and requires some initiative and creativity. The good news is I have found ways to address her isolation. I’ll say more about that later.

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Addendum To My Previous Post

Now the story gets funnier. After finishing my previous post, I told Kate I was going to the men’s room and would be right back. She said she was ready to go home anytime. That surprised me because she has never indicated a desire to leave Barnes & Noble. I’m not sure we have ever stayed less than an hour and a half sometimes two and a half hours.

When I returned from the men’s room and sat down at the table, Kate asked again where the bathroom was. I told her we should get our things together and I would show her. Then we would go home.

We arrived at home, I remembered it was time for her to take a Tylenol, one of the other things recommended by her doctor. She asked me, What now?” I reminded her that she had wanted to come home and that she could work on her iPad. She said she would like to do that and would come to the family room. I gave her the Tylenol and asked where her cup was. That was silly of me. Of course, she couldn’t remember. I know that. Why then did I ask? I told her it was probably in the car and stepped out the door to get it. As I brought it inside, she was getting another cup. At any rate she was going to take her Tylenol.

I went to get her iPad. When I returned to the laundry room, she wasn’t there. I looked around the rest of the house. She wasn’t anywhere. Then I thought she might have gone to the car. That is where she was waiting for me. I went out and reminded her that we had just gotten home and that she had said she wanted to work on her iPad in the family room. She said, “Oh” and got out of the car and came inside where she is doing just that. She is happy, and I have a moment to make this post. In another thirty minutes we will leave for dinner. Then we will be back home for what has become one of the nicest times of the day. We’ll turn on the TV. I’ll watch a little news. Then I will shower and watch a little of tonight’s Olympics before going to bed. Except for her grumpiness at the start of the day, Kate has been in a good humor. All in all, it will have been a good day in the Creighton house.

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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.

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Bizarre Case of Imagining Things

At lunch today, Kate asked me something about “a guy who wanted to make her naked.” I had no idea what she was talking about and said so. She looked frustrated with me and indicated I must have remembered. She went on to say that she had been in the restroom, and there was a man and a woman. The man wanted to disrobe her and walk her around the restaurant and parade her outside. She said she knew that I would not let that happen. I assured her that was the case.

A moment later, she asked me the name of our server. I told her it was Sandra. Then I said that reminded me of someone who was in her bridge club years ago. I could see that she didn’t recall and went on to tell her the names of each of the members and their spouses. She said, “Where was this?” I told her it was right here in Knoxville. I noted that two other members of the club as well as the two of us are the only remaining living members. She said, “Where was this? In North Carolina?” It was clear that she had little or no memory of the bridge club of which she had been a member for more than twenty years.
Then she asked me our daughter, Jesse’s, middle name. I told her. She asked what her last name is. She followed that by asking her husband’s name. After I mentioned the twins, she asked their names. I said something about having a son in Texas, and she asked his name.

These are not names that are lost forever. They come and go in her memory, but they are signs that the names will be forgotten sometime in the future. When I encounter moments like these, I am amazed that she functions as well as she does.

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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.

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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.

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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.

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An Hour Later

After posting this last entry, I told Kate I thought it was time for dinner. She said she wanted to finish her puzzle. Off and on over the past hour, I have asked her how she is doing. She was still not ready. The last time I asked, I told her I hated to stop her because she had gotten so absorbed. During this time she has not been coughing. Nor has she been wiping or drooling saliva to the extent she was when we arrived. She is simply engrossed in her puzzle. I really to hate to interrupt her. I don’t usually see her this intense. Best of all, she appears less tired now. Maybe the cough medicine did affect her and is wearing off.

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Kate is sick again.

Kate got up after 11:00 yesterday. Because of that we went directly to lunch just before 12:30. I noticed she was coughing. It was much the way she coughed when she was sick around Christmas or just before. She coughed a good bit during lunch. That caused me to reflect on whether or not we should attend a theater production of Big Fish at 3:00. On the way home, I stopped by the pharmacy and bought some cough syrup. I gave it to her right away. I built a fire and she looked at the book mentioned in yesterday’s post. Her coughing let up. In addition, it had been raining and had then stopped. I made the decision to go ahead to the theater. Kate did not enjoy it, but she seemed to get along fine in terms of her cough.

After the show, we stopped at a restaurant for dinner. This is when the coughing started again. She was coughing so loudly that I considered taking our meal home but didn’t. I was glad that we were served quickly and were able to leave fairly soon. Every time I asked her to tell me how she was feeling, she said, “Fine.” She also seemed fine except that her coat and top was wet from saliva that had dripped from her mouth. She was wiping some of it but letting much of it run down her chin and on to her top. The top portion of her coat was soaked when we came out of the theater. I assumed she had wiped saliva with her hand and then on the coat, but she may have drooled on the coat. It was in her lap. I gave her another dose of her cough syrup, and she went to bed about 7:30.

This morning she got up around 8:30. The first sound I heard was her coughing. When she was ready for Panera, I noticed that she was not in a cheerful mood. We stayed at Panera until after 11:30. Then we went home to meet the sitter who comes at noon for my Monday Rotary meeting. She seemed a little confused when I explained that I was going to be leaving for my meeting and that she and Anita could stay at the house or go to Panera. When I said Panera, she showed the only excitement I have seen all day. She was confused, however, and thought she and I were going. I told her she and Anita could do that.

Before the sitter left, she asked me if Kate were on any medicine. She had asked because she said Kate had seemed quite confused and was drooling. She also mentioned that Kate had gone back to her room and scattered a bunch of papers on the floor. Although Kate thanked the sitter after I had done so, she didn’t do it with the same enthusiasm that has become normal.

When Anita was gone, Kate and I got our things together and came back to Panera. She moved incredibly slowly getting up and walking to the car as well as from the car to Panera. I had planned to give her another dose of her cough medicine before we left, but I thought maybe that it was causing the confusion. As it has turned out, she hasn’t coughed that much since we arrived. I may not give her any more. I couldn’t tell that it made much difference.

I had thought of our making a trip to Nashville to visit Ellen tomorrow but decided this morning that we should hold off. Tomorrow will give me a chance to communicate with the doctor’s office for some guidance.