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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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Little Things

We’ve had a string of good days lately. I say that because Kate seems happy and has appeared to enjoy herself. It doesn’t mean there has been any lessening in the other symptoms of Alzheimer’s. Her memory only gets worse, and I observe new signs of confusion.

As we prepared to leave the restaurant after lunch the other day, she asked (using hand signals) if she should take her napkin with her. That is the first time I recall her ever asking that. She has frequently taken paper napkins. She has used them in the car to wipe the saliva from her mouth or to store in a basket in our garage (after she has torn them into smaller pieces). This time it was a cloth napkin. Perhaps I shouldn’t have been surprised. On several occasions, she has asked if she should take her glass with her. Two or three times she has actually taken her glass. In two instances I caught her and returned the glass. Another time, the owner of the restaurant saw her walk away with the glass and asked if we would like a “To Go” cup.

Later at dinner that night, she asked, “Are we in Fort Worth?” I told her we were in Knoxville. She said she thought she recognized the buildings across the street as buildings in Fort Worth.

When we got home, I turned on the TV to a recording of CBS Sunday Morning while she worked on her iPad. After a while, I told her I was going to take my shower. She had her robe in her hands, pointed to herself, and then pointed in the direction of the hallway to her room where she keeps her clothes. This is one of those situations in which I misinterpreted her hand signals. I thought she was going to her room to get a night gown. I said, “Yes,” and she left.

When I got out of the shower, I noticed that she wasn’t there. I just thought that she was taking a while to find something and would be back shortly. When she hadn’t come back in another ten minutes, I went to check on her. The first thing I noticed was that all the lights were out. That made me wonder if she had gone to bed in her room. That has happened before, but it had been a long time. I called her name, and she said, “I’m in here.” She was on the bed in the guest room next to our bedroom. It turned out that she thought I meant for her to go to bed in there. The only thing I could figure out was that when I thought she was asking if she should get a gown for bed, she was really asking if I wanted her to go to bed in the guest room.

I felt really bad about that. I know that she has become much more accepting of my suggestions about clothes that she wears. She also asks me what to do a lot more than in the past. In this case, I felt like the master who had sent her away to her room. I quickly explained that I never would suggest she sleep in another room without me. She said she would prefer to be with me, and I told her I always wanted her to be with me. This is just one more of those things I’ll never understand.

On a brighter note, last night she was lying in bed working on her iPad while I was reading in my chair. She became unusually talkative. She began by saying she was glad that we had married and that we had had a happy marriage. This is a conversation that we have a lot. We both reflect on the things for which we are grateful, especially for our marriage. She talked about our children and how proud she is of them. This led to her talking about her mother and how glad she was that we had kept her in our home for the last five and a half years of her life.

All of these are things we have talked about many times, but there were two things that stood out about this occasion. One is that she would stop and start to go back to her iPad. I took this as a signal that she was finished, but very shortly, she would continue the conversation. This must have happened three or four times before she really stopped. It made me feel that she was having a powerful sense of gratitude.

The second thing that stood out was her talking about her mother’s having stayed with us during the last years of her life. Although she was not detailed in her description of those days, she clearly had not lost her memory of our having kept her. I have discovered so many things about which she has absolutely no memory that I was thrilled to know she remembered this special time. Moments like these are precious.

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Some things change. Some things haven’t.

I tend to focus on the changes that are going on in our lives, but it strikes me that there are some things that continue. I was reminded of that this morning when I went to the back of the house to tell Kate that the service man from our heating and cooling service was in the house. When I got to the door of the room, I spoke her name. She screamed. I had frightened her in a way that I have not done in a long time. It wasn’t long after her diagnosis that I first became aware of how easily she can be frightened. That led to my announcing my presence as I came in the door whenever I had been out. These days I am with her except for those days she has a sitter, so I haven’t thought as much about startling her in quite a while.

It is not just around the house that she is startled. This frequently happens when we are in restaurants. A couple of days ago at Barnes & Noble, two women walked by our table. As they did, one of them dropped her keys. Kate jumped and made a sound  that was loud enough for the women to hear. That brought an apology from the one who dropped the keys. As much as Kate loves children, she is sometimes  bothered by their high pitched voices.

One of the other things that has annoyed Kate is the music played in restaurants. This may have been a problem for her before Alzheimer’s, but I don’t recall her making an issue of it the way she does now.

She still has Déjà vu experiences although I don’t think I have heard her mention anything in the past few weeks. Maybe that is something that is changing rather than a constant.

Her use of hand signals began one or two years ago. For example, instead of asking me if she should take her iPad with us when we go out, she might point to her iPad and then point in the direction of the garage. Similarly, if we have our own cups in the car when we get to a restaurant, she often points to her cup and then to the restaurant. In the evening, she often brings a robe into our bedroom and points at the robe and then to herself and then to her chair or the bed. I don’t always read her signals correctly, but she rarely helps me out with words. Of course, usually I know what she is asking.

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Working Jigsaw Puzzles at Barnes & Noble (For Hours)

It is 5:06 p.m. We’ve been at Barnes & Nobel for almost three hours. When we got here, I thought we might be here no more than a couple of hours, perhaps less. What is amazing is that as I look across the table at Kate, I see that she is working intently on her iPad. She hasn’t moved since we arrived. She is doing the only thing she does on her iPad, working jigsaw puzzles. Over the past two-to-three weeks, she has spent almost no time in the yard. She must average 6-8 hours a day.

(At this point, she looked at me and gave me the look that says, “It’s time to go.”  We decided to go to the restroom and then to have an early dinner.)

Here’s the rest of the story that started at Barnes & Noble. I was saying that Kate has not been working outside much in the past few weeks. That means her only activity is working jigsaw puzzles on her iPad. Starting as much as a year ago, she began to have some difficulties with the puzzles. This meant she relied on me to straighten things out every time she got in trouble. That has improved substantially in recent weeks. It is nice to report that something is better. I have a tendency to think that everything only gets worse.

My concern now is that if she lost interest in her puzzles, she would be left with nothing. That would be a serious problem. Watching her today gives me renewed hope that she will continue to pursue this activity for the indefinite future.

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Happy Valentine’s Day

I didn’t need a special holiday to celebrate our bouncing back from the flu. It is enough just to feel better. Today is clearly our best day in almost two weeks.
First, let me follow up on my previous post. In that one, I commented on the fact that Kate had not been in a good mood up until near dinner time. I am glad to say that she cheered up at dinner. She takes special pleasure in going to Chalupas where we eat on Monday nights. As I have described elsewhere, it is an especially friendly place where she feel very comfortable.

After that, we came back to the house where we adjourned to the bedroom where I watched the evening news, and she worked on her iPad. That has come to be a very good time of the day for us. We are both relaxed and without any obligations and know that we can go to bed any time we want.
Yesterday was a good catch up day. The only item on our agenda was haircuts at 3:00. Kate was up much earlier yesterday; so we arrived at Panera early. We stayed there about an hour and then came back to the house for another hour before going to lunch. After lunch, she was tired. She rested until time for haircuts. It was a quiet day but a nice one.

Today the sitter is coming again. I had cancelled last Wednesday and Friday because of the flu. I will go to the Y and then have coffee with Mark. We’ll have a Valentine’s dinner at 5:30 since they are booked up later. It should be another nice day.

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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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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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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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Off to a Late, But Good Start

As she has done several times lately, Kate slept late. She opened her eyes when I walked into our bedroom about 8:30, but she didn’t get up until 10:30. That is after going to bed around 8:45 last night. Until recently, she had been going to bed between 8:00 and 8:30 and getting up around 9:00. It is quite possible that our recent trips to Texas have thrown her off a bit. On the other hand, I always wonder if she might be establishing a new pattern.

This is a light day for us. The only commitment we have is to get haircuts at 3:00 this afternoon. Because we have plenty of unscheduled time, I decided to drop by Panera for Kate’s muffin even though it was 11:30. I thought it would be good for her to be occupied for an hour here before we go elsewhere for lunch. It’s a sunny day though a bit chilly. I suspect she may want to work in the yard a little between lunch and our haircuts. That will leave us with another hour and a half or so before having dinner. I find that the day seems to go well when Kate’s activity is divided into small “chunks” of no more than two hours.

She is in a good mood today and is happily working her jigsaw puzzles on her iPad. She hasn’t asked me to help her once, and we’ve been here about fifty minutes. That is a rare event. I am optimistic we will have another good day.

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Wanting to Help

Among the first signs I noticed related to Kate’s Alzheimer’s was her lack of attention to some of her major household responsibilities. The most obvious one was that she often didn’t have dinner ready. It also included less obvious things like washing clothes but leaving them in the washing machine for a day or two before putting them into the dryer. Over the years, I have jumped in to take care of these things without our ever talking about it. It was as though she didn’t notice that I was taking care of meals, the clothes, and other household chores.

Thus it has come as a surprise to me that on several occasions recently she has asked if she could help me with something. Two of those occurred yesterday. She saw that I was taking clothes from the washer and putting them in the dryer. She asked if she could help. I felt little need for the help. This is a pretty easy task, but I was so pleased with her offer that I said yes. Later, I brought the dry clothes into the family room where I usually listen to music while folding them. I had already separated her things from mine when she walked into the room. Once again, she asked if she could help me. I quickly said yes. She picked up all of her things and walked back to her room. I later discovered that she hadn’t folded or picked up her clothes, but I was happy with her offer to help. That and her enjoyment of Darkest Hour that we saw yesterday afternoon made yesterday another good day.