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Change and Adaptation

Like most people, I tend to look for explanations for why “things happen.” I think that is part of our natural curiosity. In addition, I have spent a career looking for reasons that people do what they do, why they change, and what they might do in the future. Since Kate’s diagnosis, I have tried to understand everything that is happening as well how to prevent and solve problems. The most important thing I have learned is how difficult it is to know what is coming next and why.

I’m thinking about this while at Panera. It’s 8:37, and we’ve been here about thirty minutes. This is about the third time we have been here in the last few days. In some ways, this doesn’t seem unusual to those who have read my earlier blog posts or those with whom I have talked about our almost daily visits here. Those regular visits declined over a year ago. I related that to changes in her sleeping. In turn, I attributed her sleeping later to the progression of her Alzheimer’s. For months our visits have been infrequent. What has made her get up earlier recently? Is this something that will continue for a while, or are these a few isolated events?

The answer to these questions is “I don’t know,” and that is the answer I have given for most of the changes that have occurred during the past nine years. What I do know is that Kate’s changes mean that I have to change as well. My natural tendency, however, is to continue doing what I have done before. I admit to being a creature of habit. The only thing that saves me is my desire to provide Kate with the best care possible. If that means I need to make a change, I do it. I don’t mean that making a change is necessarily easy. Each one comes with a measure of psychological discomfort. I like routine and predictability.

Early on, I thought that a writer like Neil Simon could have a field day writing about a couple like us, one with Alzheimer’s, the other with OCD. It really could be comical. On the other hand, I am pretty sure that even if a caregiver were not driven by a desire for order and routine, he or she would ultimately find it challenging to deal with the unpredictable changes that take place with this disease. I feel for those who can’t. I have read many posts on Facebook and Twitter and online forums in which caregivers rant and rave over the behavior of their loved ones. I know it can be very hard. My own situation is much easier because the relationship that Kate and I have now is a pretty good extension of what it was before. The major change would be her dependence on me, but she is generally cooperative and loving.

This morning was a good example. I keep a close eye on the video cam so that I can get to her quickly if she calls me or is getting up. I don’t, however, keep my eyes on it every moment. Today, I went outside to check the water level on our pool that has a leak. When I got back inside, Kate walked into the family room. She was looking for me.

It turned out that she had waked up and was ready to get dressed for the day. Of course, she didn’t know where to go or what to do. She was glad to see me, but she hadn’t panicked and was in a good humor. I apologized for not being there as she got up. It hadn’t bothered her. She just wanted her clothes. I told her I could help her. Then I took her to the bathroom to get the process started. When she started to brush her teeth, she asked, “I sure am glad you are here. <pause> Who are you?” When I gave her my name, she wanted to know “Who are you to me?” I told her I was her husband. She was surprised. I said, “Would you rather think of me as a friend?” She said no. During the next twenty minutes, we repeated this exchange several times. She was always surprised, but comfortable, with my answer. When I helped her dress, she said, “You know, you’re a pretty nice guy. I think I could like you.” I think that captures well what her attitude is like.

Now what does this have to do with change and adaptation? I’m about to tell you. This is the third day in a row that Kate has gotten up early. Each time it has been before or during my morning walk. I like that walk. It is not simply a time for a little exercise. I also listen to books. For me it’s a nice way to start the day before my responsibilities with Kate begin. After my walk, I work on my blog. When Kate is up early, it leaves me to find another time to write.

My point is that I like routine, and changes like her getting up much earlier change that routine. I’d rather not change. On the other hand, she was so nice this morning that I want to take advantage of the time we have to enjoy ourselves. That is a higher priority for me, especially at this stage. I may be having a harder time getting other things done, but it is a pleasure to have time like this.

An hour has passed since I started this post. We are still at Panera, and Kate is still working her puzzles. That’s an unusually long period of time without her getting frustrated. I have been helping her throughout, but she is doing better than she has done in a while.

BREAK

Whoops, it is now 10:45. As I was in the middle of the previous sentence, Kate hit a roadblock with her puzzles. We came home where I will now close and upload this post.

Despite her having trouble and wanting to stop, she was still in a good humor and wanted to help me gather our things together to go home. Once here, she hit her recliner where she is resting. That’s a good thing because I have a noon lunch meeting at United Way. That’s an hour earlier than the sitter comes. I arranged for a church friend from to take Kate to lunch and get her back home for the sitter at 1:00. I have done that once before, and it worked well. This is a person who used to be on the staff at church when Kate was the church librarian. They ate lunch together frequently and have always had a good relationship though we don’t see her often these days.

While Kate has rested, I took care of a number of household chores. Those never end, and I am always behind. It’s been a nice morning. I am glad she got up early even if it meant no walk that I didn’t finish this post until now. Until next time, have a nice day.

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Our Thanksgiving

Like so many other things, Thanksgiving has come and gone. Despite the rough beginning in the early morning hours, it was a nice day though it was bitter-sweet. There was no denying the dramatic change in Kate since last year when we were in Texas with our son’s family. I predicted then that it might be our last Thanksgiving with family, and it was.

I’m not at all sure what next year will be like, but I know Kate’s changes will not be for the better. Kate is unable to grasp this, but I am convinced by the things she says that she recognizes her condition is not good. She was essentially saying that when I went in to get her up for lunch yesterday morning. I said, “It’s Thanksgiving, and I’m thankful that I have you.” She reached up and grabbed both of my arms and said, “And I am thankful for you.” I said, “I know that.” She said, with emphasis and with a slightly sad expression on her face, “I want you to know I really mean it. I mean it.” She knows she couldn’t make it without my help and is very appreciative. I continue to be amazed at her self-awareness.

Since we eat out for lunch and dinner, finding a place to eat on Thanksgiving is a challenge. We did, however, have a good Thanksgiving meal at Ruth’s Chris. For a long time, Kate has been able to get along quite well without anyone’s suspecting she has Alzheimer’s. That is one of the big changes that has occurred in recent months. It was evident yesterday.

As the hostess walked us to our table, she was walking rather quickly. Kate is always very slow. The hostesses at our regular places are well aware and take their time. I decided to let this one know. We hadn’t gone far when I looked behind me and saw that Kate had stopped to talk with a woman at another table. I walked back and discovered that she was complimenting the woman on her hair. She was overdoing it, and I know the woman thought it somewhat strange. When we got to our table, we went through something with which I am accustomed. I am sure that our hostess was not. She was, of course, supposed to wait until we were seated and hand us our menus. It took what must have seemed to her an interminable amount of time for Kate to realize which seat was hers and to be seated. I was glad I had informed our hostess. She was very understanding.

After Kate’s making a few initial comments to our server, I handed her one of my Alzheimer’s cards. I was glad that I had although she might have guessed anyway. Both when I ordered and when the food arrived, Kate asked, “What is that?” She was referring to the sweet potato casserole. She also asked the same question when I ordered a filet for us to split. I think she was confused about the whole situation. We are not regulars at Ruth’s Chris, and it had an air of formality that we don’t experience at most other restaurants. She was very concerned about doing something wrong and asked my advice a number of times. That is not something unusual, but the way she asked sounded like she was more uneasy about this situation.

Despite these things, the lunch went quite well. There were two other couples seated at the tables beside us, but the sound was quite muffled. We felt a certain measure of privacy even though the restaurant was packed. We had a good conversation and talked about the many things for which we are thankful.

Once we were home, Kate wanted to rest and did so for about an hour before getting up. I asked if she would like me to read The Velveteen Rabbit to her. She did. She was more enthusiastic this time than before. Once again, I was also touched. It is so good to see her enjoy herself in this way.

It didn’t take long to finish. Then I asked if she would like me to read some of the Diary of Anne Frank. In spite of her previous interest, I was a little afraid this would sound like too much for her. I am glad to say I was wrong. We read another 20 pages. As I did before, I asked if she wanted me to continue after each entry. We only stopped because it was time for dinner.

It was another good day for us. The meaning of this holiday did not fall on deaf ears. Each of us experienced the spirit of Thanksgiving.

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Alzheimer’s Doesn’t Know It’s a Holiday, But We Do.

Kate and I talk a lot about the many things for which we are grateful. We’ll do more of that today. Let me say first that I am grateful to those of you who take time to read my often rambling accounts of our lives. I hope it provides an accurate glimpse of what “Living with Alzheimer’s” is like for us and that you may be gaining a little insight into the world of Alzheimer’s. The overriding message for us is how well we have gotten along. That easily claims first place among the things for which I feel most fortunate. I only wish that could be true for everyone who lives with this disease, but I am very mindful that others face far greater challenges than we have.

I am grateful for the kindness of family, friends and acquaintances who provide support, often without realizing it. I have also been touched by those who serve us in restaurants and customers in places we visit. Just this week I took Kate to the restroom at lunch. I’m always a little concerned in these situations because she has on several occasions locked a door to the stall or the restroom itself and been unable to open it. Sometimes she doesn’t know where to go once she is in the restroom or how to find the exit door. That day I opened the door and peaked in to see if anyone else might be in there. A lady was washing her hands. I pointed Kate in the direction of the stall and told her I would be right outside the door. It wasn’t long before the door opened and the lady who had been washing her hands invited me in. She told me she was a nurse and would stay with Kate. That wasn’t the first time people have helped in that situation. Little gestures like that have made the road smoother for us, at least emotionally.

It is a beautiful day. The sun is shining, and the today’s temperature will be in the low 60s. I look forward to this day with Kate. It will be the first we celebrate alone. Now don’t feel sorry for us. We will certainly miss being with family, but it will be easier on both of us that we are not traveling or hosting this year. I have an increasing recognition that our time together is limited, and I treasure the good times that we have when it is just the two of us.

Now let me segue to another aspect of our lives. Although we have many “Happy Moments,” they vacillate with more trying ones. Thus far, we have been able to handle each one of those. That includes one we had early this morning.

At 3:00, Kate said, “How do I get inside?” I said, “You’re inside right now. You’re in your own bed.” She wasn’t buying that. She asked again. I said told her I would show her but that it was the middle of the night and thought it would be better to do that in the morning. That wasn’t of any help. Then I told her I would show her. The first stop was the bathroom. Then we walked hand-in-hand through the bedroom, down the hallway outside our room, into the family room and kitchen, stopping in the laundry room. During our walk I tried to comfort her. She kept asking if we were going inside. I assured her that I was taking her inside. I turned her around and we walked back to our bedroom where I helped her into bed.

As I pulled the covers over her, she said, “You’re not going to leave me, are you?” I told her I would never leave her and that I would be right there on the other side of her. When I turned around to walk to the other side of the bed, she must have thought I was leaving. She said, “Don’t leave me.” She seemed very frightened. That didn’t stop immediately. I got into bed, moved close to her, and put my arms around her. She gradually felt at ease. By that time it was about 4:10. She was quiet until 4:30 when she asked again not to leave her. I assured her I wouldn’t, and I didn’t hear anything more from her. I think I went to sleep pretty shortly after that. I know I slept until 6:50 which is unusually late for me, but I know I needed it.

My best wishes for a Happy Thanksgiving to each of you.

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Another Morning Surprise

It was just a few days ago that I reported on the unpredictability of our mornings. That continued this today. Kate was awake, or woke up, when I got up at 5:50. I thought she might want to go to the bathroom, but she declined. I had been in the bathroom only a few minutes when she opened the door. I walked over to assist her to the toilet but found that it wasn’t the bathroom she wanted. She said, “Is she all right?” I did what I should know not to do. I said, “Who?” She gave me a dirty look. Often she says, “You know who.”, but just as often she gives me a look that communicates the same message. Fortunately, she asked “Is she all right?” several more times. That gave me a chance to say the right thing. Each time I said, “She is fine.” That seemed to provide her with momentary relief, but she continued to be concerned. During the next few minutes, she made other comments like “Are you sure she is all right?”  “I love her so much.” And “Could I see her?” I feel sure she must have been thinking about her mother but never found out.

When we got back to bed, I asked if she would like me to stay with her. Of course, the answer was yes. Unlike the other recent times when she has wanted me to stay, I hadn’t already dressed. I put on an album of very soothing music and got back in bed with her. I stayed there until just before 7:00. She was still awake but relaxed.

I knew she was likely to go to sleep and expect I wouldn’t hear from her until I woke her at 10:45. I was wrong again. I saw her on the video cam at 8:10. She was sitting up. When I reached her, she was wide awake and ready to get dressed. This was another day when she wanted me to take her “home.” That has become more frequent in the past few weeks. I told her I would. Strangely, she wasn’t persistent this time. She mentioned going home a couple of other times but seemed to have forgotten before we left for Panera. We got here about 9:15. She is just now finishing her muffin. I suspect it won’t be long before she will be ready to leave. How long depends on how well she is doing with her puzzles.

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Saturday Afternoon Conversation

 

Kate and I had a pleasant day yesterday though she was somewhat confused about where she was for an extended period of time. She also experienced some delusional behavior during the afternoon. Here is a sample of some of the things she said.

As we walked into the family room after lunch, she said, “I remember being here before.”

As usual, she rested and actually went to sleep. She woke up and said, “It’s really nice to be back here.” I said, “Yes, it is.” She said, “You know I was born here, don’t you?”

A few minutes later she said, “It’s a nice place. The owner has done a lot of things.” I asked, “Do you know the owner? She said, “I think I am one of them.”

She moved from the recliner to the sofa to rest a little more. Off and on for an hour she made numerous comments. I jotted down a few of them. In each case, she seemed to be talking with someone else, not me. She often does this while sleeping at night, and sometimes responds to me if I speak to her. Yesterday’s experience was different. It was much more like something I reported on a week or so ago. She was awake but talked in a style that was more like she was dreaming. Her eyes were open and displayed nothing that would suggest she was asleep. She also talks to herself. It was more like that except that I was just a few feet away from her. What she said frequently seemed out of context as though I were hearing her side of the conversation and not the person with whom she was speaking. Here are a few examples.

“She said we could stay this night and see what we like about it.”

“I think I will close my eyes, but not for long. Then I will get up and make some friends.”

Looking up at the ceiling and laughed she said, “I can see you. . . Oh, look.” She was pointing to the trees out back.

“Wouldn’t it be nice if we could sleep here.? That would be nice.”

“I like this room.” <pause> “You know, this is bigger than I thought.”

“Yeah, I like this place.”

“Do you live here? <pause> I don’t remember her name.” (She chuckles.) “Yeah.”

“Well.” <pause> “Uh huh.” (She chuckles.)

“It looks so pretty out there. Those tall trees. I don’t know what that blue thing is. That real pretty blue. Can you see it?  <pause> Uh huh, right over there. You got it.”

“I’ll just rest here a while.” “Yeah, we’ll come back. You’ve been so nice.”

“That girl over there talked with us a little. She lives here. <pause> To live here. That would be fantastic. We’ll just have to see.”

“My goodness, when did you come in. You’re a pretty lady. <pause> Uh huh. There are a lot of people here.”

I wondered what she would be like when I got her up for dinner. She seemed normal. I didn’t notice anything during or after dinner that was like the way she was in the afternoon. It reminds me somewhat of the urinary tract infections that my dad used to get during his time in a skilled nursing facility except that she exhibits the symptoms so infrequently. This was only the second time she has been like this other than when she is sleeping at night or when I am in another room. I will be watching out for any further signs and be prepared to contact her doctor if I think it is necessary.

 

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Weekly Data on the iPad

After several years during which Kate worked jigsaw puzzles on her iPad 6-8 hours a day, she has decreased her time substantially over the past few months. She has leveled out the past five weeks. Her total screen time for the past week was 3 hours and 15 minutes. Her daily average was 27 minutes, close to her 4-week average of 25.5 minutes.

The time she would have spent on her iPad has been replaced by resting and looking at photo books. The latter she usually does with me and also with the sitters. Last night was a notable exception. After dinner, she and I spent about thirty minutes looking through her “Big Sister” album that her brother made for her. Then I wanted to watch a football game, and she wanted to continue. She did that for almost forty minutes. I was pleased to see that because that would give her something she could do on her own; however, I can easily see that it might be hard to retain her interest for long since she has such difficulty recognizing the people in the photos. That includes her as well as other members of her family. On the other hand, sometimes she does recognize her mother, her father, her brother, and herself. Maybe that can sustain her for a while. I am sure both of us would like that.

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Problems with Toes, Teeth, and Hair

Kate’s “hair-pulling” is an old story, but I’ve said less about her toes and teeth. They are beginning to play a more prominent role in her personal care. Let me tell you about an episode earlier this week.

It was a very good day. Kate got up to go to the bathroom around 5:30 and went to bed. She got up around 7:30, and we went to Panera shortly after 8:00. We came back to the house and relaxed until lunch. She was in a good mood. We had a nice conversation at lunch. The sitter came at 1:00. Kate received her warmly and didn’t seem disturbed in the least when I left. She was happy to see me when I returned but didn’t express any sense of relief as she has on a few occasions. We had a good experience at dinner.

While we were eating, she told me she was likely to get to bed early. I didn’t think much about it since she often says that but doesn’t get in bed. I have to admit, however, that she has been getting into bed earlier lately now that she hasn’t been occupied with her iPad. That night was one of those times.

First, she went to the bathroom. She spent 20-30 minutes “brushing” her teeth. She didn’t really brush them all that time. Much of the time she was rinsing her mouth with water and using her fingernails like dental floss. She always feels like she has food caught between her teeth. I often help her with flossing, but that doesn’t seem to work. She finally gave up and came back to go to bed. I got her nightly meds and helped her get into her night clothes.

She was disturbed about her teeth. She mentioned she hadn’t been able to get all the “bees” out. She followed that by other words that didn’t fit what she meant. She was talking about something in her teeth. She also talks the same way about things between her toes and in her hair. Sometimes she refers to them as “these little things” and says they are “smart.” She says they know when you’re trying to get them. I was able to calm her by talking to her softly and telling her I would help her. That is when she focused her attention on her toes. She wanted me to get a towel or wash cloth and get “them” out. I followed her instructions, and she felt better.

Then she got in bed and started pulling her hair. It wasn’t long before she became frustrated. She said she was tired and hadn’t been able to finish and would have to do it tomorrow. A few minutes later, she asked me to come over and pull her hair for her. I did that for a couple of minutes before reminding her she was going to rest and work on her hair in the morning. She said I was right that she needed the rest and thanked me for helping her. She was fine after that; however, I don’t expect this to be our last episode with “them.”

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A Rare Experience

Kate and I have been married fifty-six years, and I can’t recall a time when we have sat down to breakfast together except when traveling or the few occasions when she has attended a YMCA breakfast with me. The reason is simple. I like breakfast, and she doesn’t. In addition, I have always gotten up earlier than she does. When she was working, she used to have some juice and yogurt just before leaving the house. She continued this after retiring until we started going to Panera for a muffin. Since she started sleeping late almost a year and a half ago, she hasn’t been eating breakfast regularly because we go directly to lunch.

I am not expecting that routine to change, but yesterday morning was quite different. She wanted to get up to go to the bathroom at 5:30. She was back in bed in twenty minutes. I stayed up and got ready for the day. As I was about to dish up my scrambled eggs, I looked at the video cam and saw that she was about to get out of bed. I went to the bedroom and found that she was wide awake and quite cheerful. I assumed she wanted to go to the bathroom again, but she said, “Do we have anything to eat?” I told her I had some scrambled eggs and some granola but no milk. She wanted the eggs. That was quite a surprise, I can’t remember the last time she had scrambled eggs. The only times I recall her having eggs at all is when we have been out for breakfast, and then it is usually pastries, pancakes or Eggs Benedict.

I walked her to the kitchen, got out two plates, and split the eggs between us. She enjoyed every bite and chatted too. I didn’t notice any of her usual grogginess. Having given her half of my breakfast, I needed a small dry serving of granola, but it was a special occasion. It’s a rare day when we have breakfast together.

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Dreams, Delusions and Hallucinations

Here’s another post in which I will never be able to capture the details. Let me start and see where it goes but understand you will not be getting the whole story.

Kate has talked in her sleep off and on during her life with Alzheimer’s. In the early years, the focus was almost always her teaching and library career. Most, if not all these experiences, involved her speaking to students. She was very deliberate in what she was telling them. Her memories of those days faded away long ago, but she continued her talking just in different situations.

Yesterday morning at 3:00 she had another “dream” experience similar to one she had a week or two ago. She seemed wide awake and very clear-headed. She wanted to go to the bathroom. On the way and back to bed, she looked and sounded normal but she appeared to be “dreaming while awake.” That’s hard to describe, but she talked as though we were someplace away from home. She mentioned other people. Then she said, “What do we have planned for tonight?” I told her we were going to have dinner at Casa Bella. She asked if we were going with anybody. I told her we would go by ourselves and sit with the same people with whom we usually sit. She was pleased we were going by ourselves although I thought she missed the fact that we would sit with others.

I thought that was it, but after we were in bed we spent the next fifteen minutes or so repeating the same conversation. Then we both went back to sleep. This kind of thing has occurred several times in the past. I think she has a dream about some obligation and is concerned about it. In a couple of instances, it was clear that she thought she had an appointment and needed to get ready. Most often, she just asks the question and the repeats it a number of times without any expression of anxiety.

About 10:15, I noticed that she was sitting up in bed. I went back to see if she wanted to go to the bathroom. She smiled as I got near the bed. It looked like everything was fine. We chatted a few minutes. She said, “Where am I?” When I told her we were at home, she wasn’t satisfied with the answer. She wanted to go home. At first, I told her she was at home, but that didn’t sink in.

I tried to divert her attention by taking her to the family room. She enjoyed seeing all things she usually admires, but she still wanted to go home. She was also tired. I led her back to the bed. She didn’t want me to leave her although she didn’t remember who I was. I brought my laptop and sat with her for another thirty minutes before suggesting that we go to lunch. By that time, she had forgotten about going home, and she didn’t say anything more the rest of the day.

When we got home, she had a brief hallucination as we got out of the car. She pointed to something leaning against the side of the garage. She thought it was a girl. There wasn’t anything I could see that might cause her to think that, but I just went along.

She had another unusual experience after she was in bed. She pointed to the ceiling and mentioned something about the “people over there.” I was never able to make much sense out of what she was saying. Then she said she wanted me to help her understand what was going on. I told her I would be glad to and asked what she needed to know. She pointed around the room and said something I never understood. It was another sign of her aphasia. She used a word that had nothing to do with whatever she meant. I think she was talking about all the objects in the room, but I was never clear. Periodically, she would say, “See them over there.” A couple of times, she mentioned animals in the room.

We got through the night without any special “happenings.” She was up early to go to the bathroom and was in a cheerful mood. She has been back in bed for almost two hours. I noticed on the video cam that she is moving around in bed. I’ll check on her. It’s about time to get her up for lunch. I wonder what’s up for today. Clearly, her brain is making changes. I never know where it will lead.

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An Example of Kate’s Self-Awareness

Over the past few days, Kate has snapped at me several times. As in the past, she quickly apologized with tears in her eyes and said, “I shouldn’t have said that.” I’ve been struck by her awareness that she has spoken to me in a way she hasn’t done before Alzheimer’s entered the picture. Two nights ago, I was even more surprised.

We had just finished a very pleasant dinner at Bonefish Grill. I started the car, and she said, “May I tell you something?” Her tone of voice made me think she was going to say something nice about my caring for her as she often does. I was surprised when she said, “I know I’ve been hard to deal with lately, and I want you to know I’m sorry.” I was both touched and stunned. Here she is trying to adapt to the changes taking place in her brain, and she feels bad about the way she has treated me. Apart from that, I was amazed that she said this “out of the blue.” I think it had been more than twenty-four hours since she had last snapped at me. That tells me this is something that really disturbed her. That matches her other concerns related to not knowing “anything.” To me it is a remarkable example of her kind heart and self-awareness. It also increases my desire to see that she gets the best care I can give her.