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Our Morning Routine

It’s 10:40, and, naturally, we are at Panera. I am a creature of habit. That is no surprise to anyone who knows me well. That personal quirk coupled with Kate’s Alzheimer’s has made for an interesting few years. The good news for both of us is that I am also flexible when I have to be, and I have had to be. In fact, I look at much of the adapting that we have done in a humorous way. As someone with a few compulsive tendencies married to someone who is pretty much a polar opposite, I would say we have made it work quite well for what will be 55 years at the end of May. I consider that an excellent training as Kate’s caregiver.

After a period during which she has slept later than usual, she seems to be working back to what I hope is a normal pattern. She has been getting up around 9:00 and is ready for Panera around 10:00 or shortly thereafter. That gives me three and a half or four hours to get up, eat breakfast, take a walk, check email, take care of any household responsibilities, check Twitter, and work on this blog.

Kate used to get up earlier, go to the kitchen for juice and yogurt, and return to bed. For some reason, she gave that up recently. Now she sleeps later. When she gets up, she takes her shower and gets dressed. This goes on while I am in the kitchen which serves as my office. When she is ready, she walks into the kitchen. That is often when I first know that she is up. The funny thing is that when I say “she is ready,” I mean right now. The problem is that I am not. I am still dressed in my walking clothes and need to change for the day. It annoys her that I am not ready to leave that minute. There’s always a way to deal with a new issue like this. Now I periodically go back to our bedroom to check on her. At some point, I discover that she is no longer in bed. When that happens, I change clothes, get her medications and put them on the island in the kitchen with a glass of water, get her iPad and her cup along with my own cup to take with us to Panera. Then when she walks into the kitchen, all I have to do is close my computer and put it and her iPad in my computer bag. I can easily do that in less time than it takes for her to take her pills.

On those mornings when I am late in discovering that she is up, I have to rush getting dressed and gathering our things together. While I am doing that, she usually goes to the car and waits for me. Even on cold mornings, she usually forgets to wear a sweater or coat. Fortunately, she has never had to wait long. I pick up a coat for her along with the other items mentioned above, and we’re off.

She hasn’t always been in the position of waiting for me. That’s what adds a dimension of humor to the situation. Like other things, this has not been of great significance in the morning. If I apologize for keeping her waiting, she says, “You didn’t take too long.”

When we arrived at Panera this morning, I noticed a group of women were seated next to the table at which we usually sit. They come to Panera about once a week after their morning run. They are usually pretty loud. When they arrive before us, I try to find a table in a different location as I did today. I stayed near the table while Kate got a drink. I stood so that I could see her, and she would be able to see me. I knew she would not remember where I was. After getting her drink, she walked directly to our regular table. I walked over to get her. She was waiting calmly for me, and I noticed that she had taken my cup instead of hers. Her ability to distinguish things that are different has diminished as well. My cup is smaller and made of stainless steel. Her cup is a larger green plastic cup. They are just the same to her. Similarly, she often picks up my iPad thinking it is her own even though mine is a larger version with a keyboard. Naturally, I am going to be a little sensitive about this since she is usually eating a muffin. Inevitably, that means crumbs and oil on the keyboard and screen. I try not to let on that this bothers me, but sometimes I fail.

Kate always enjoys being around children. We sat by a couple with a toddler at the table beside us. She initiated a brief conversation with them just before they left. On the other side of our table sat a mother and  her two girls, one who is 4 and the other 2. Just watching children brightens Kate’s day. I think it’s going to be another good day for us.

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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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Coordination Problems and Confusion

For someone like me having a schedule is helpful in getting things done. Since our return from Texas, Kate has been getting up later. That has meant getting to Panera has been later. That hasn’t presented a problem since I haven’t had any meetings or other obligations during the holidays. Today is different. I go back to Rotary. That means the sitter comes at noon instead of 1:00.
Today is different in another way. Kate got up earlier, probably related to the fact that she went to bed shortly after 7:00 last night. That influenced our morning schedule. We got to Panera earlier, and she wanted to come home before lunch. I generally try to get her to lunch at 11:00 so that we can be back for the sitter in plenty of time. When I went to our bedroom at 11:00, she was resting in bed. I asked if she would like a sandwich. She said she would rather stay in bed. I decided to let her remain in bed and that the sitter could take her to lunch.

A little after 11:15, she came into the kitchen with her coat on and iPad under her arm. She was ready to go back to Panera. Knowing that we might have difficulty getting back home in time for the sitter, I called the agency and asked the sitter to meet us at Panera, something I may establish as a regular routine. That would be a better way of handling the situation rather than rushing Kate.

Before leaving the house, she took a can of Dr. Pepper out of the refrigerator to take with her. She is particular about the mixture of Dr. Pepper she often gets out of the machine at Panera. When we got out of the car, I took the can of Dr. Pepper. When we got inside, I offered to get some ice. When I came back to the table, I pulled the can of Dr. Pepper out of my pocket and poured it into her cup. She said, “Aren’t you smart.” When I asked why, she indicated it was because I brought the Dr. Pepper for her. She had forgotten that it was she who had actually thought to bring it.

Then I left to go to the counter where I ordered her sandwich. As I returned to the table, I noticed Kate at the drink machine. She had emptied the Dr. Pepper, replaced the ice, and was getting another drink from the machine. When I asked about her Dr. Pepper, she had no recollection of having had one. I don’t know why she poured it out. I just let it go. She took a sip out of her drink. She didn’t like it and gave it to me to taste. She had gotten carbonated water. I went back to the machine and got her an Arnold Palmer. She is now happily working on her iPad while eating her lunch. She seems happy. So am I.

The major learning in this episode for me is that I should be prepared to let the sitter meet us here every week unless there are other reasons for doing otherwise. I can’t be too rigid with my own desire to stick to a regular schedule. By letting go, I will save myself a little stress.

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Coordinating Can Be Challenging

Last night I told Kate that our Y breakfast was today.  She likes to attend, but she also likes to sleep in the morning. The past 2-3 months we have not made it because she didn’t want to get up. Thus, last night I asked her if she really wanted me to get her up. She said she did.

At 7:00, I woke her up and asked if she still wanted to go to breakfast. She groaned but said she did. I turned on the TV and started changing from my walking clothes to my regular clothes for the day. She got up and went back to her room. When I finished dressing, I went to the kitchen where she was getting some apple juice and yogurt. I reminded her of the breakfast. She had forgotten. By this time it was 7:20. I told her we would leave in about 20 minutes. As she headed toward our bedroom with her yogurt and apple juice, she said, “I’m going to eat my breakfast.” I reminded her that we were going to the Y breakfast. She had forgotten again. I reminded her that we were leaving in 20 minutes. At 7:45, I went to our bedroom to see if she were ready. She was sound asleep in bed. I went back to the kitchen to fix my breakfast. I suspect we won’t go back to the monthly breakfast together. I believe I will go back at a later time when I have care for Kate during the morning hours

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Other Signs

After Kate and I got home from lunch today, I came inside. She wanted to pull leaves in the backyard. I had a 2:00 doctor’s appointment and had decided to take her with me rather than leaving here home alone. When I told her I was taking her, she didn’t question it at all. The same was true the last time I paid a visit to his office. My plan was to leave the house at 1:25 in order to be there 15 minutes before hand. At 1:10, I went outside and told her it was time to get ready to leave. She said she wanted to change tops. I told her that would be fine, but we didn’t have time for her to take a shower. She didn’t like that, but I thought she had agreed. I gave her a few minutes to change. Then I went back to her room where it appeared that she was getting ready to put on clean clothes. I told her I was just checking, that we needed to leave. I left her again. When I went back, she had just gotten out of the shower. I told her it was time to go and to hurry. I hate doing this, but she moves as though time doesn’t matter at all. Then I said, “I really need to go.” That led to a panic attack that didn’t fully cease until after we were in the doctor’s waiting room. What really bothers me more than that I caused the attack is that she is then so sorry that she has upset me.

We are now back home. She was fine even before we left the doctor’s. That is one of the positive things about Alzheimer’s. Shortly after we got home, she wanted to go outside to pull leaves. She asked me if she could do so. I told her she could. She asked if she could pull leaves in front. I told her she could. She came inside and put a shirt on over the top she was wearing. I was here in the kitchen. She walked in and asked if she could go outside. Again, I said she could. She asked if she could use the clippers. When I told her yes, she gave me a look of surprise as though I sometimes say no. I don’t ever recall doing so.

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Coordination Problems

I have often mentioned some of the coordination problems that arise because Kate doesn’t remember what I have said. Right now we are experiencing one of those occasions. At 6:05, I went outside to tell her the time and that we should be getting ready for dinner, something we typically do between 5:45 and 6:30. She reacted negatively and said she wanted to plant a few other plants we had bought at Lowe’s yesterday. I said OK, but I really felt like it would be best to start getting ready now because she will need to take a shower and then dress. That sometimes takes an hour. I know, however, that she might need only 30-45 minutes. As I get to this sentence, I see that it is 7:11, and she is still outside.

This is one of those occasions that almost any married couple could face almost daily. In a normal situation, however, they could talk about it and negotiate something that would suit each one. I recognize, of course, that it can also end up in a standoff. My view is that such a standoff in our situation is simply unproductive. For example, if we had an appointment to be someplace at a particular time, I would need to push her a little. In tonight’s situation, we don’t have any such obligation. This is the more typical case for us; so I am simply letting her stay as long as it takes (that is, unless it gets close to 8:00). While I take this position, I have to be honest in saying that I am really ready to eat and would like her to see that and do it for me. On the other hand, I know that her brain doesn’t work normally. She would never have been like this before Alzheimer’s. I truly miss being able to have normal conversations about things like this, but those days are gone.

Something similar happens with the temperature in the house or in the car. Most of the time I am comfortable, and she is hot. That means that she wants me to make the house or car cooler. I always comply with her desire, but I do sometimes let her know that I am either comfortable or in some cases cold. She totally disregards this and actually thinks I am crazy. I, naturally, believe that her own body thermostat is not working the way it used to do. I do recognize that she feels hot and try to see that she gets relief, but I would love it if she gave just a little recognition to the fact that I am cold. Alas, there is no way to reason with someone who has Alzheimer’s.

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Lots To Think About

We are now at Panera, something I had planned for the morning though it didn’t happen quite the way I intended. That is one of the commonplace occurrences in our lives nowadays. Each day I list the day of the week, the date, and our activities for the day. Except for meeting and other appointment times, I am flexible though I put down a specific time. This morning I put down 10:00 for Panera. Most days Kate isn’t ready before that time. Once in a while, she is. Today was one of those days. It is also an example of how short-term memory affects coordination. Shortly after 8:00, I mentioned that we might go to Panera this morning and have an early lunch before a United Way communications meeting I have at noon. Here is how things turned out.

At 9:15, Kate walked into the kitchen and said, “Well, I think I will work outside for a while.” She sounded as though it was not something she was excited about, just something to pass time. I said, “I thought we were going to Panera.”  She smiled and said, “Oh, I forgot.” Then she turned around to go back to her room to change. She looked happy that we were coming here.

At that point, I was still in my walking clothes and needed to change for the day since we would not be coming back home in time for me to get ready for my meeting at noon. It turned out she got ready very quickly but she had only changed clothes. She had not gotten her iPad that she uses while at Panera or her cup that she also uses for her drink. I also noticed that she didn’t have a sweater, and it is usually a little cool at Panera in the morning. So I gathered all my things as well as these things for her, and we left at 9:35.

All of this occurred without any angst on her part or mine. I have learned to consider these kinds of things normal. She is always ready to do something that she likes. Most of the time Panera fits the bill, especially if it is in the morning. First of all, I think she considers the blueberry muffin to be a treat. Second, it is a comfortable location to pass time. We almost always see people we know.

My intention in writing down this experience is to convey that this is the kind of thing that happens multiple times during a day. They are not horror stories in any way, but they are examples of how the caregiver is always shifting gears and trying to head off or solve a problem. There are so many of them that I find myself slipping.

A good example is a phone call I placed this morning. About a month ago, I took Kate to see a neurologist who said he would need her to get an MRI. We did that a few days after the appointment. I expected to hear from the Doctor the next week that he had the results and wanted to schedule an appointment. I have thought of this a number of times since then but never remembered to call the doctor. It turns out that the doctor has never received the results. His office is going to call today. Then we will schedule a follow up appointment with him. This is the kind of thing that I could and should have taken care of right away, but it somehow just didn’t rise to the top of my list of things to do. That is happening with many of my obligations.

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Another Example of Coordination Problems

I came back from my morning walk at 7:00 and went into our bedroom where Kate was sleeping. I asked her if she wanted to go to our monthly Y pancake breakfast. She said that she did. See was a little groggy and didn’t show a lot of enthusiasm. I told her that she didn’t have to go. I went back in a few minutes and saw that she had gotten up. I came into the kitchen to load some photos onto my computer. I like to leave at 7:45 for the breakfast which starts at 8:00. About 10 minutes later, she called to me and said she didn’t think she would go. I met her in the family room and asked if it was because she didn’t know what to wear? She said yes. I told her I could find something. I got her a pair of black slacks that had just come back from the cleaners along with a pink top. She took them to her bedroom to put on. In the meantime, I went back to the kitchen and my computer. At 7:45, she had not appeared for us to leave. I decided not to rush her. Then at 7:55, I went back to the bedroom and found her in bed working on her iPad. I asked, “Did you decide not to go to the breakfast?” I reminded her that I had gotten clothes for her to wear. She wanted to go; so I went with her to her room where her clothes were on the bed. She got ready quickly, and we went to breakfast where she had a good time. She had just completely forgotten that we were going to the breakfast.

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Coordination Issues/Problems

I know I must have previously written about my newly discovered appreciation of short-term memory. When Kate was first diagnosed, she had some difficulty remembering things from one week to the next or sometimes one day to the next. These are not unlike all of us. I think it may have been more of an irritation to Kate than to me.

What was a minor thing then has become a significant issue in coordinating plans. This is something I never thought about until it occurred. Let me give you a couple of examples, one from yesterday afternoon, the other from this morning.

Kate and I went to Lowe’s to buy more plants after we finished lunch yesterday. I was motivated to do this because I knew that today I have an 11:30 meeting of the executive committee at the foundation followed by an afternoon at our Rotary golf tournament where I will be a volunteer for a beverage cart. I thought that would give her something to plant while I am away for about six hours or so.

When we got home, she wanted to go outside to work in the yard. She stayed outside the balance of the afternoon. We normally go to eat around six o’clock. When she hadn’t come in at 5:50, I went outside to let her know the time. I was careful not to rush her. I just asked if she were getting hungry. She said she was. I told her the time and she said she be right in. I went out again at 6:20. Once again, she said she was coming in. Finally, I went out at 6:50 and told her we should probably get ready for dinner. She came in, and I expected her to get ready rather quickly. Sometimes she does when we are not going out for a special evening which calls for something dressier. This was one of those nights when she took a long time. We finally left for dinner at 7:50. We returned home just before nine.

Our son sent me a text right about 6:00, shortly after I had gone outside the first time to let Kate know it was getting time to eat. He wanted to chat by phone concerning a meeting he is going to have this coming Friday with the owners of his company. He is exploring the possibility of his buying the company and wanted to discuss it with me. I responded to his text and told him Kate was coming in, and we would be going to dinner. I indicated I would text him when we got home. At that time I was thinking we would leave for dinner around 6:30 and return home shortly after 7:30. As it turned out, I could have spoken with Kevin at that time, but it was 9:30 before we actually did speak. (I normally go to bed about 9:15.) We didn’t finish until after 10:30.

Normally I would leave for the Y on Monday morning at 6:30 am and get home around nine. I decided not to go to the Y because of how late I got to bed and wanting to be with Kate as much this morning as I could before meeting my obligations of the day. I got up at 5:15 and had breakfast before taking a walk for an hour. I was back at the house by 7:35. Before leaving for my walk, I wrote the daily schedule on the memo board that I keep on the island in the kitchen. I noted the time I would be back from my walk, that we would go to Panera at 9:30, and that I would leave at 11:15 for the balance of the day and where I would be.

When I got back from my walk, Kate was dressed and headed outside to work in the yard. I reminded her that I will be leaving at 11:15 but didn’t stop her from working in the yard. I tried to work things out so that I could keep her busy this morning. Now I wonder if she will want to spend an equal amount of time in the yard this afternoon. If not, she may be left without something to do. That will happen if she puts in her new plants this morning. So far it doesn’t look like she is doing any planting. That is good. All in all this is a good illustration of how hard I work trying to see that things go smoothly for her only to discover that her short-term memory keeps her from going with the plan.

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Communication Issues

We are back from PEO and lunch. As I we got close the  home where today’s meeting was held, Kate spoke my cell phone number. It was not correct; so I corrected her. Then I said maybe I should write it down. She said that would be a good idea. It turned out that I didn’t have anything to write with; so we rehearsed the number several times. She also asked me what to say if someone asked her about our cruise. I told her to say, “We went on a Caribbean cruise.”“She liked that. I felt bad for her because she has never felt the need to ask my number before. In addition, her asking about the cruise suggests to me that she continues to be alert to the fact that she is less able to remember things. I know this must create a good bit of stress, discomfort, and, possibly, fear.

Shortly after 11:00, she called me to say she was ready to be picked up. I was at Starbucks. I said goodbye, and started to leave. As I was driving out of the parking lot, I received another call from Kate. She said she was sorry, but the program just began. I turned and went back to Starbucks where I waited for another call that she was ready. When the call had not come after 12:00, I decided to leave and head toward house where the meeting was held. I figured Kate would probably call while I was on the way. When I arrived, all the cars were gone. I went to the door and rang the bell. I discovered quickly the meeting had been over for some time but Kate had not called. The hostess said encouraged Kate to call me, but Kate said she had called me and that I was on the way. It was 12:50 when I arrived. My guess is that the meeting had been over more than an hour. It had been a long wait for her, and she was not happy with me. She thinks I said I was coming but didn’t. The truth is that the communication was unclear. I thought she would call me back when the meeting was over. She thought that I would come ahead.