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A Slow Start on the Day

Kate was late getting up today. It was a few minutes before noon when she appeared and said she was ready to go. She was dressed appropriately for the day except that she was wearing a bathrobe over her clothes. She was carrying two night gowns over one of her arms. As we walked toward the garage, I told her we were expecting it to be hot and that she might not need her robe. She accepted that without a challenge. I wasn’t going to say anything about the two gowns. Then she started to put one of them on over her clothes. When she did that, I said, “I don’t think you’ll need the night gowns either.” She put both of them down on the island in the kitchen and off we went to lunch.

After we ordered, she seemed tired and confused. She asked me to tell her my name. Then she asked me her name. That was followed by asking if we have children. I told her about them and their families. I pulled out my phone and showed her several pictures taken with them in the past few months. As we went from one picture to another, she kept asking me who the people were. Some of that is related to the size of the photos on the phone coupled with her eyesight. Her vision in one eye is 20/60. She also has cataracts that are affecting her sight as well. I’ve been in conversations with the ophthalmologist about surgery. We had decided to wait until her next appointment in January. I am beginning to rethink that decision.

On the way home, she said asked if she could take a nap. I told her that would be fine. She didn’t waste any time getting into bed. It is now 4:15, and she is still in bed. I woke her 25 minutes ago, but she hasn’t moved. Tonight is jazz night at Casa Bella. We’ll be leaving for that at 5:30. She always enjoys the musical nights. I hope this perks her up, but then I wonder about getting to sleep tonight.

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Another Attack. Sundowners?

We had had a very pleasant evening after dinner last night. We were in the family room for over an hour listening to music. Naturally, Kate was working on her iPad. I was writing this morning’s post. About 8:30, I told her I was going to take my shower and that we might watch the last of Sound of Music when I got out. She liked the idea. When I got out of the shower, she came back to the bedroom. She didn’t seem to know what to do. I suggested that she get her night clothes on before watching the movie. She went to her room. When she returned, she had taken off her clothes but didn’t bring her night gown or robe with her. She seemed confused and wanted to take a shower. I helped by walking her to our bathroom, turning on the shower, and getting a couple of towels for her.

After her shower, she started to put on her night gown. I got her “night-time” underwear. I went back into the bathroom to get my nightly medications. When I returned, she hadn’t put on the underwear or her night gown, and I couldn’t find the underwear anywhere. I still haven’t. I just got another pair. She seemed anxious as she tried to dress for bed. That ultimately developed into something more emotional.

She wanted me to dry her back which I did. I asked if she wanted me to help her get dressed. She said she did. Then she said she couldn’t live without me. As she often does, she added, “No, I really mean it. I couldn’t live without you.” I don’t remember her exact words, but she said she couldn’t do anything right.

Although it crossed my mind, I didn’t say anything about her having Alzheimer’s. Instead, I spoke very calmly to her and told her I was going to help her. I put my arms around her and said, “Let’s just relax a minute. Take a slow, deep breath. You’re going to be fine.” After holding her for a few minutes, I asked if she would like to watch the Sound of Music. She said she did. First, I helped her with her night gown. Then I suggested we get into bed and watch the movie. She said she wanted to sit in her chair and work on her iPad. She said, “That relaxes me.”

Right after that, she picked up her iPad and got into bed and started to work on a puzzle while I started the movie. Very quickly she became engaged in the movie and put the iPad down on the bed. We both watched the remaining part of the movie, almost an hour. She relaxed and enjoyed it. The attack was over.

The first time this happened I wondered if this might not be an example of sundowners. Now I have a stronger suspicion that might be what is happening. That doesn’t really explain it. It just gives the behavior a name. If this becomes a habit, it will make a radical change in our evenings. That has been the best time of day for us for several years. I think it is because we have no further obligations after dinner than relaxing and getting ready for bed. We are both very much at ease during that time. That is a time I don’t want to surrender easily. If this occurs again, I plan to do the same as last night. I will respond very calmly and with compassion. That seemed to do the job last night. That along with music might carry us a long way.

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Signs of Confusion

Kate’s imagination was active over the weekend. Before we got out of the car for lunch yesterday, she had a look on her face that signaled deep concern. She said, “I just don’t know what to think.” As often happens, she couldn’t explain what had happened. She said something about our daughter, Jesse. I asked if she thought something had happened with Jesse and her husband, Greg. She nodded. I said, “Did you think they were separated?” Again, she nodded. I told her everything was all right, that they had not separated. She said, “I must have imagined it.” Periodically, she has had experiences like this, and she seems to grasp that the origin is in her mind.

As we were leaving the house for dinner last night, she specifically went to our bedroom and turned on the lamp on the table next to here side of the bed. She asked if she should turn on the one on my side. I told her I thought we could leave it off. As we walked through the family room, she asked, “What time are they coming?” I told her we weren’t expecting anyone, that we would have the house to ourselves. She didn’t say anything else, and I didn’t ask.

While at Panera this morning, I received a phone call from Scott Greeley. We arranged for the Greeleys to visit us this Saturday. When we hung up, I told Kate it was Scott and that they would be in Knoxville on Saturday for lunch. She said, “Good. I really like them.” Then she added, “What’s her name?” I told her. Only moments later, she said, “Jan.” I said, “Right.” Then she said, “I know that you know her name; I just wanted to let you know I got it myself without asking you.” She had apparently forgotten that just moments before she had asked me for Jan’s name.

When I got home from Rotary, the Y, and the grocery this afternoon, Kate was ready to get out of the house. As she has done a number of other times recently, she was carrying a night gown, a robe, a pair of pants, and a top. She noticed that I was taking 6 new pairs of socks out of their packages and asked that I give them to her. She did not have her iPad and a cup. I got a cup and then used the Find my iPhone app to locate her iPad. When I returned to the kitchen with the iPad, she was still holding the clothes along with the socks I had just bought. I asked if she were planning to take the clothes with her. She indicated she was. I told her I didn’t think she would need them. She said that would be fine. I suggested we leave them on the love seat in the family room until we returned. She put them on the love seat. As we started for the car, she picked up the robe and brought it with her. It’s sitting in the car right now.

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Odds and Ends at the End of the Day

It’s been another good day for us. We didn’t do anything special. In fact, given that Kate slept until almost 11:00 and took a nap from 2:00 to 4:00 this afternoon, we’ve spent less time together than usual. We went to Barnes & Noble when she got up and from there went to dinner and back home for the evening.

At dinner, Kate looked across the table at me and said, “Tell me your name.” I said, “Would you like my full name or my first name?” She said, “The name your parents gave you.” I told her “Richard.” Then she asked my middle name. When I gave her that, she filled in the last name. She then asked me to repeat it twice more.

Leaving the restaurant we had to step down from the curb to our car. I gave her my hand which she accepted. She said, “Thank you for not thinking I am crazy.” I’m not sure what motivated it, but it appeared that she thought it silly that she was taking my hand for what seemed a simple task.

When we got home, we went to the family room where she worked on her iPad. She always likes to have the ceiling fan on but hadn’t turned it on. I was in the other room when she called to me. I went to the family room where she pointed to the ceiling fan. This was one of those times she was asking me something with her hand signals. I chuckled and turned it on. She laughed and said, “You must think I’m silly.”

As she was getting ready for bed, she called to me with a whisper from across the room. When I went to see walked over to see what she wanted, she whispered even more softly, “Are we spending the night and tomorrow night here?” Moments later as she was undressing, she asked the same question again.

She turned out the light and got into bed before 9:30. I was surprised because of all the sleep she got last night and this afternoon. I wonder if this will affect what time she gets up tomorrow.

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Another First

A few minutes ago, I was standing beside the bed as Kate was getting into it. She said, “Are we married, or are we going to get married?” “I said, “We love each other. It seems we should be married.” She said, “Me too. Good night.”

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A Follow Up on Kate’s Dependence

In addition to the signs of Kate’s dependence I noted yesterday, there are several others I would like to mention. One of those is her telling me on two or three occasions recently, “I want to go wherever you go.” I am not sure but immediately wondered if she might be making reference to the times that I leave her with a sitter. Whatever she meant, it was clear that is looking to me for security.

There are daily variations on “going where you go.” For quite some time, she has wanted me to walk ahead of her when we enter a restaurant or other building because she never knows where we are headed. When we returned home from dinner last night, she said, “I’ll follow you.” That is the second time recently that she has said that. Apparently, she didn’t immediately recognize our home and preferred to depend on me to know where she should go. Recently she asked me to wait for her right outside the restroom in a restaurant. Again, it was a matter of her not knowing how to get back to our table.

Another sign of dependence is the increase in the number of questions she asks. We are having more conversations like one that occurred at dinner last night. She began by asking my brother’s name, something she does occasionally. When I said told her Larry, she asked his last name. After that, she asked what he did for a career. I gave her a more complete answer than usual. She didn’t once tell me to stop or that I was giving her “too much information.” It seemed as though she were very seriously interested and trying understand what I was telling her. She was quiet for a few minutes. The she asked, “Where are we right now?” I said, “Do you mean this restaurant or the city?” She said, “The city.” I told her we were in Knoxville. She said, “So where we live.” I said, “Yes.” Then she asked, “Are we going to live here for the rest of our lives?” This surprised me because she has told so many people that we are moving to Texas. I answered her question by saying, “I’m not sure. I think that will depend on our health. If either of us should have any special health problems, that could lead to a move.” She seemed to accept that without a problem.

When she opens conversations like this, I feel a special closeness to her. Much of that arises from the fact that she doesn’t have anyone else with whom she can talk so personally. When we got into bed last night she was more talkative than usual. This conversation opened with her talking about how fortunate we are with respect to our marriage and our children. That led to her admiration for her mother and how much she had meant to so many people. Then she said, “I can’t even remember her name.” I told her and she said, “I know that. I just couldn’t call it right then.” I said, “Not to worry, I’m always here to help you.” Several years ago, she gave me the nickname “MM” for “My Memory.” I have found that she does not always remember that anymore. That doesn’t surprise me. She is slipping on my real name now. These are touching moments for me. She is so open, so authentic in these conversations. They remind me of what a great responsibility it is to be a caregiver for someone with dementia. They also remind me of how fortunate we are. I know many caregivers have to face far more struggles than we have. I feel for them.

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Rehearsing Names on Mother’s Day

Kate was up and ready for breakfast at 9:30 this morning. That is earlier than I expected given that she didn’t get to sleep until about 10:30 last night. As we walked down the hall to the breakfast area, I told her that our daughter had sent her a text this morning. She said, “What’s her name?” I said, “Jesse.”

I selected a table and went to the buffet to get her some juice and yogurt. She has been working puzzles on her iPad. A few minutes ago, I showed her the text from Jesse. It said, “I love you, Mom.” She said, “That’s sweet.” Then she asked, “What’s her name?” I told her, and she asked her boys’ names. I told her. Then she said, “What’s my mother’s name?”

She displayed some confusion while dressing this morning, but I don’t think it was significantly different from what happens at home. To make dressing easier when we are traveling, I put out her clothes (from underwear to shoes and socks) for her. I wish that prevented misplacing things or putting her clothes on backwards, but it doesn’t. Caregivers talk a lot about the challenges we face, but I don’t think it compares to what our loved ones experience. And Kate faces them with few outward expressions of frustration. I think she is remarkable.

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Travel can be confusing, especially in the middle of the night.

My mother had dementia. Dad cared for her without any help except for Wednesday morning when he dropped her off at an adult day care center. That allowed him to go to Kiwanis and then grocery shop. He told me very little about his experiences in caring for Mom. I do remember one thing. He said he tied a string from her arm to his when they went to bed so that he would know if she got out of bed. I feel a real connection to him now that I have become Kate’s caregiver. A large part of our responsibility involves either solving problems or preventing them. His use of string was one of the things he did. I have my own bag of tricks.

When Kate and I are traveling, I try, and usually succeed, in getting a room on the lobby level. That way I can get to breakfast and return to the room quickly. Before leaving on a trip, I also print signs that say “ We are in Lubbock (or wherever). Richard is having breakfast in the lobby.”

It’s impossible to prepare for everything. What happens in the middle of the night is one of those things. Last night, Kate got up to go to the bathroom. She found it easily since I left the bathroom light on and had her sleep on the side of the bed that is close to it. When she came out of the bedroom, she started walking toward the door to the hallway. (I always put on the security latch before coming to bed because she has started to go into the hallway on a previous trip.)

Recognizing that she would have no idea where we were, I said, “Kate, we’re in a Residence Inn in Lubbock.” 

She looked very confused and said, “Who are you?”
Richard: “This is Richard.”
Kate: “My husband?”
Richard: “Yes.”
Kate: “Where are we?”
Richard: “Lubbock.”
Kate: “Why are we here?”
Richard: “We are visiting Kevin and his family.”

She got back into bed and slept until almost 9:00. I can’t imagine what it is like to experience such confusion. I am amazed at how well she takes it. To me it would be frightening.

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Another First, Feeling Pressure Over Names

We arrived in Lubbock a short time ago and have checked into our hotel. For the first time, Kate is feeling a good bit of pressure concerning the names of our son and his family. As I have mentioned quite a few times, she often has difficulty remembering their names along with those of daughter and her family as well as virtually all of our friends. She has often practiced them with me. She does this even at times when we are not apt to be seeing those whose names she is trying to remember. Since leaving Knoxville yesterday, she has asked me to tell her the names of our son, Kevin, and his family a number of times. The difference this time is that she is really concerned. I asked if she might find it helpful if I showed her some pictures I have on my iPad. She said that might help. I brought up some pictures taken at Christmas. I quickly discovered that this was too overwhelming and stopped. She said, “You’re just going to have to help me with this.” I assured her that I would help her and that she would be all right. I told her that she would remember them as soon as she saw them. She was skeptical. Then she asked me to tell her my last name.

Our son is flying in from Chicago where he attended a professional meeting. His plane is scheduled to arrived in 45 minutes. In the meantime, I have spoken with our grandson, Brian, who returned home from his freshman year at TCU. We are all going to meet at Panera and then choose a place for dinner. The rest of the family will be attending a banquet for the band. This may be a good thing. Instead of trying to remember all five of them together at one time, she will just have two.

It would not be surprising for you to know that she also can’t remember where we are (Nashville this morning and now Lubbock). After all, that is nearly impossible when we are in Knoxville. It really is impossible when we are out of town.

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Traveling presents its own special problems.

Kate and I have been fortunate to travel a good bit during our marriage. We have always enjoyed the new experiences we have whenever we’re away from home. Of course, we have moments when we are confused or lost, but it’s all part of the joys of travel. For a person with dementia and her caregiver, it can be especially challenging. We have had quite a number of experiences like that since Kate’s diagnosis. We’ve had a few scares, but, thankfully, we’ve never had a disaster, but I can easily understand why couples in our shoes discontinue their travel.

Most often, our problems have been simple ones and short-lived. For example, going through security at the airport is more of a challenge than before. It’s hard enough for the average person to remember the routine, but it’s worse for someone with dementia. It’s especially difficult in a foreign country where the routine can be a little different. On a trip to New Zealand in 2014, there was a sign instructing us to stop and look straight ahead before going through a scanner. This was so that security camera could take a picture. I did it first to demonstrate what Kate should do. She didn’t understand me, and I could not get back once I had passed the security gate. I had to locate someone from security to let me go back to help her.

Most other problems are rather mundane. For instance, we had lunch at the Nashville airport. Along with a sandwich, I got Kate some fries and two packets of ketchup. We don’t often eat at a fast food place, and the ketchup came in a rigid plastic package with which I wasn’t familiar. It looks very much like the old-fashion plastic container except this one had an instruction to tear off the top portion to squeeze the ketchup out of what looked similar to the top of a ketchup bottle. It works quite well. I showed it to Kate and squeezed some ketchup on a few of her fries. A moment later, she had turned it upside down and was trying to dip her fries on the bottom of the container. She was treating it just like the ones we had been used to. She thought it was a cup of ketchup. I explained how it worked and squeezed a little more on her fries. I tried multiple times, but she never got it or, maybe more precisely, could never remember how to get the ketchup out. Finally, she said, “Don’t worry. I think it’s just easier if you do it.”

It’s about time to board our flight. I don’t think we can get into any trouble at this point. We’ll just sit back and relax for a couple of hours.