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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.

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More Pleasure from Her Book

A couple of days ago I commented on the pleasure Kate had gotten over the discovery of a book that I thought had belonged to her mother, Birds of Wington. Since then it had remained on the floor board of the passenger’s side of the car. This afternoon we made a stop by the pharmacy to pick up a couple of things. Kate remained in the car while I went inside. When I returned, she was looking at the book again, just the way she had done the other day. It was like seeing it for the first time.

It is a cold, rainy day, and Kate has been coughing. I told her I would build a fire in the fireplace, and she could look at the book a little more if she wanted. She did. While she was brushing her teeth, I took a look at the title page and found a note her other had written. It said that it had been given to Kate on her 11th birthday from a friend and used for three months in church for Sunday school lessons. For the past 25 minutes, she has been going through the book from front to back. As she looked at it, she kept saying, “This is wonderful.” “This is priceless.” “ This is a treasure.” She tried, and did, read a few sentences to me though it was a struggle. She mostly picked out a few of the Chapter names. Several times she mentioned “Birds of the Bible,” one of the early chapters. Each time it was as though it were the first time. I know this would seem a little thing to many, but I take great pleasure in her pleasure. I’m sure many a caregiver can identify with that.

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Follow Up to My Previous Post about Explanations

Yesterday I commented on Kate’s putting an 8 x 10 frame, two tops, and underwear in the back seat of our car yesterday. What I didn’t say is that I had washed clothes earlier in the day. I had taken her underwear and placed them on a towel in the kitchen to dry. In addition, I put several of her tops in the dryer. After they were dry, I had put four of them over chairs in our family room and brushed out the wrinkles. I left these things with the intent of putting them up later in the day. Near the time we were to go to dinner, I noticed that the underwear and two of the tops were gone. Two other tops had been thrown over another chair in the family room. The two tops that were missing were the ones Kate took to the car. I assume that the one pair of underwear was part of those I had put out to dry.

This morning as we were getting ready for our trip to Panera I got an umbrella from the trunk of the car. When I did, I noticed a pile of Kate’s underwear piled beside the garbage bin. It was then that I realized that instead of taking the underwear to her room and putting them away, she must have carried all of them out to the car took out one pair to put in the car and threw the others on the floor of the garage. Just one more thing I can’t explain except to say that it is Alzheimer’s at work. This is a devastating disease. It doesn’t play by our rules.

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You just can’t explain everything.

I have sometimes said that the job of an Alzheimer’s caregiver involves two things. One is to prevent problems. The other is to solve them. To do this well calls for a good understanding of the person for whom you care. Ordinary life has led us to search for explanations for just about everything. Some things are easy. For example, if you know that your loved one is cold, you can turn up the heat or add blankets or warm clothing. Most of the time caregivers are able to find the right explanation. Other times, we don’t. That makes me think of Kate’s salivation problem. For about a year and a half, she has almost given up swallowing saliva. Instead, she uses napkins or a variety of paper products to wipe the saliva from her lips. When nothing is available she simply wipes the saliva with her hands or her clothing. I have now consulted three different physicians who have offered several possible ways to address the problem without success. They don’t know why this is happening.

The salivation issue is an unusual one, but there are numerous other things that dementia patients do that are not easily explained. For example, why would Kate hide her iPad in the back of the coat closet in our laundry room? Why would she put her underwear on a shelf in her closet where she keeps her shoes? Why would she put her pill box on the next-to-the-top shelf in our bathroom where it is a challenge to reach? The fortunate thing is that these things are harmless. They just cause a problem when you can’t find what you are looking for.

There are other things that do no harm but are inappropriate in one way or another. Some time ago, perhaps a couple of years, Kate started putting or two or occasionally three tops on when one would do. That in itself is no problem. Layering is often recommended to keep warm in cold weather. Layering could also be done as a fashion statement. Sometimes Kate’s choices could pass for that. Typically, however, they involve multiple tops that don’t match or complement one another in color or style. I never recall her doing this before Alzheimer’s.

This afternoon she did something else for which I have no explanation. Kevin had called. After a few minutes, Kate hung up her phone. It wasn’t long before she came into the kitchen where I was. She was carrying two different tops and an 8 x 10 picture frame containing pictures of our twin grandchildren. She walked outside. When we went to dinner tonight, I noticed that she had put them in the back seat of the car. For the first time, I noticed that she had also put some underwear with them.

For quite a few years, she has brought home left over food items from our restaurant meals. She brought them home in a paper napkin. Originally, these went into the compost. Over time she has forgotten about the compost. Now she frequently just brings our used napkins home. Before we get home, she tears the napkins in smaller pieces. When she gets out of the car, she throws the napkins into a basket on her side of the car. Over time the basket is overflowing with napkins. Then our housekeeper empties them into the garbage, and the process starts all over again. Oh, how I would like to know what is going on in her brain when these things occur.

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A Moment of Pleasure, For Her and For Me

Kate hasn’t read any books or periodicals in years, but once in a while she picks up a book at home and puts it near her chair in our bedroom or near a chair or sofa in our family room. Although I’ve never seen her look at them, I assume she must have taken a glance before taking them off a shelf and setting them aside to be read “later.” She has taken particular interest in books that were from book shelves in her parents’ home.

This morning before going to Panera, she brought a book to the kitchen and said she wanted to take it with her. (She wasn’t just informing me; she was asking if that would be all right.) I told her that would be fine. When we got to Panera, she left the book in the car.

I had left a cup at Barnes & Noble yesterday afternoon. After lunch, I told Kate I would like to drop by B&N to see if it had been turned in. She was fine with that. I parked the car in the lot in front of the store and told her she could come in with me or sit in the car. She said she would like to remain in the car. When I returned, she was looking at the book. It was entitled Bird Life in Wington. She told me it was fascinating and wanted to read a passage to me. Her eyesight (from cataracts and her Alzheimer’s) make reading nearly impossible. She struggled, but didn’t read to me. She just leafed through the book and, periodically, would stop and attempt to read. I don’t know much about the book. From what I could see and what little she could read, it is a novel about a fictitious town called Wington in which all the characters are birds.

As she was perusing the book, I noticed her mother’s handwriting on one of the pages. I pointed this out to her. She was touched by that and pulled the open book to her chest. She was so taken with the book at that point that she didn’t want me to drive away; so we sat in the car 5-10 minutes as she skimmed through the book, stopping periodically when something on a page caught her attention. As she did this, I pointed out other places where her mother had written something. Although I don’t believe she understood much about what she was reading, she was thrilled with the book. It was a thrill for me to see her get so much pleasure from this discovery. I told her it looked like it might be a book that her mother had used in her Sunday school class she taught for so many years. It appeared that each chapter may have focused on a particular moral lesson. Of one thing I am sure. This was a special moment for Kate and, thus, for me.

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Staying Busy Helps

Kate’s experience of boredom and my effort to relieve it leads to a somewhat active life. Yesterday could have been a problem in that I didn’t have anything planned except her monthly massage at 2:00. We made our daily pilgrimage to Panera, arriving earlier than we have in a couple of weeks. That meant that Kate was ready to leave before time for lunch. She seemed somewhat bored on the way home. Upon our arrival home, she asked what she could do. Since the sun was out and the temperature a little higher than it has been in the past couple of weeks, I mentioned that she could work outside. She liked that idea. About thirty minutes later, I went outside to let her know it was time for lunch. She was sitting in the middle of a flower bed. I have learned to control myself when I see her working like this in her everyday, but good, clothes. That doesn’t mean that I don’t notice. I didn’t say a word.

We went to a deli for lunch where she got an orange cranberry club sandwich that she likes. I got a salad that I like along with a cup of chili. It was a rather typical lunch. She spoke very little but didn’t seem bored as she had been earlier. I think working in the yard helped. It really is her therapy.

We had about forty-five minutes at home before we needed to leave for her massage. She talked about going outside again, but came directly inside and worked on her iPad for a few minutes. Then she rested in bed until I let her know it was time to leave. She was very comfortable and did not want to get up. When I reminded her about the massage, she wasn’t enthusiastic. It was clear that she would rather nap than have a massage. For a couple of years, I have arranged for her to go to a spa twice a month, once for a massage and the other for a facial. I am wondering how long this may be of some psychological benefit. I don’t honestly know how much she gets out of it now. My plan is to continue this schedule for the time being just because it offers another diversion for her, and it must be of some pleasure as well.

Before taking her for the massage, I got her cup and iPad along with my own things with the thought of going to Barnes & Noble (B&N) afterwards. After she was finished with her massage, I asked if she would like to go back home or to B&N. With no hesitation, she said B&N. We were there until just after 5:30 when we left for dinner. For some reason, she seems to be able to stay there longer than at Panera. I don’t know whether that is because we go to Panera more or if there is something about B&N that she likes. I do know that she seemed perfectly happy for over two hours. She never got up. I asked if she was ready for dinner several times. Each time she said, “Let me finish this one.” It is amazing how much time she spends on jigsaw puzzles. For quite a few months she has experienced frustration because she hits something that takes her to the store to buy more puzzles. When that happens, I have to get her out. More recently, she has been doing better. I am glad about that because this is her primary activity now. I hope that as the weather improves, she will spend more time outside.

The interesting thing to me is that she seems to like being at home only when she can work outside and in the evening after we return from dinner. It appears that she feels she spends too much time trapped in the house and needs to get away. Whatever the reason, I will continue to arrange things for us outside the house.

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When will I fully adjust to having a sitter for Kate?

It’s Wednesday morning. It’s one of three days a week that a sitter comes to the house to stay with Kate. She’ll be here four hours. During that time, I will go to the Y followed by meeting my friend Mark for coffee. That will leave me with another thirty to forty minutes to run errands. I know and read about caregivers who would love to have this kind of freedom. It means a lot to me as well. I only engaged a sitter when I no longer felt comfortable leaving Kate alone. If I didn’t have a sitter, I would be much more restricted. Best of all is the fact that Kate has accepted a sitter and seems to enjoy having someone with her while I am gone.

So why is it that I still don’t feel completely comfortable? I find this discomfort hard to describe, and I’m not going to attempt an explanation for it. At the moment, it is only something I want to acknowledge. It begins in the morning of the days we have a sitter. For example, it is now a little after 8:30. Kate is still sleeping. I don’t know how long she will sleep. I do know that I am going to leave her for four hours starting at 1:00 p.m. The longer she sleeps the less time we will have together today. I also know that when I tell her that I am going to the Y or to Rotary or a meeting, she often responds with, “What am I going to do?” At that moment, I have a tinge of guilt about leaving her. I am typically rescued from this burden quickly because I never tell her I am leaving until right before or at the time the sitter arrives. That leads me to say something like, “Well, you and Mary (or Anita, the other sitter) can stay here or you can go someplace like Panera.” When the word “Panera” comes out of my mouth, she jumps on that right away even if we have just returned from there. By the way, that happens frequently on Mondays when I take her there (or remain there) for lunch. On a couple of occasions the sitter has arrived early before we are home. This past Monday Kate didn’t even come in the house. She just got out of my car and into the sitter’s car for the trip back to Panera.

Another pattern has developed in connection with having a sitter. As soon as the sitter leaves, Kate gets her iPad and sometimes her cup and comes to me in the kitchen. If she says anything at all, it is, “I’m ready.” That means she assumes we are going back to Panera or to Barnes & Noble. Then I get my computer and/or iPad and a cup, and we are off again. The afternoon visit is a short one because we usually go to dinner between 5:45 and 6:00.

As you can tell, the sitter is working out well for Kate and for me too. I wonder if some of my discomfort is not wanting to hand over any of her care to someone else. That makes me think of my dad. He cared for my mom without in-home care except for a short trial that my brother and I pushed him into. I know there were other factors, but financial considerations were among them. Now that I am walking this same road, I suspect part of his unwillingness to accept help was his desire to do it himself. He might have thought no one else could do it with the same sense of compassion and joy. I can identify with that.

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More Good Times With Friends

Today has been a good one for social engagement. Angie and Tom Robinson were in town for lunch and a pleasant afternoon of conversation. We had lunch at Carla’s. They had liked it year or two ago when we had first taken them there. I am glad we went. It offered them a glimpse of why I say that eating out is a social occasion for us. We go to Carla’s frequently and know several of the restaurant staff. One of those is the manager, who stopped by our table to say hello. She ended up giving us complementary desserts. As we were about to leave, the newly retired CEO of United Way took a table next to us. We introduced him to the Robinsons, and we spoke briefly before leaving. After that we came back to the house for more conversation.

It had been a good visit. Kate participated more than she usually does. She was more animated than normal, sometimes more assertive as well. I’ll have to talk with Tom about his impressions, but I felt she handled herself well. She is changing, but she does far better in social situations than I would expect knowing how little memory she has. At one point, she asked Tom about Bruce, a mutual TCU friend and one of my former roommates. I was surprised she recalled his name. As usual, I knew that some of the things she said were figments of her imagination. They aren’t, however, the kind of things that provide an immediate alert to others that she is confused.

After they left, I told her how well I thought the visit had gone. She agreed. Then she said, “Who are they?” After I reminded her, she said, “Oh, yes, from TCU.” Part of our discussion this afternoon was about our days at TCU. I was glad to see that she still had not totally forgotten that connection. Then she asked, “Who are they again?”

She is having significantly greater trouble recalling names in the past couple of weeks. Today, she asked, “What is your name?” I find it hard to believe that she has forgotten, but that is what it sounded like when she asked the question. After I told her my name, I asked, “Now what is your daughter’s name?” She couldn’t answer. I said, “Jesse.” Then she immediately gave me Jesse’s middle name. Clearly, the first name triggered the middle name even though it is one we do not use.

The changes in her memory make me think that making another trip to Texas in the spring and a trip to Asheville for our anniversary may not happen. If that is so, there are likely to be other changes on the horizon, and not as distant as I would like.