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A Surprise, But a Good One

Kate and I were sitting in the family room before leaving for lunch. As usual, music was playing on my audio system. This time it was a John Galway album. She said, “I love that song.” I said, “I do too, but I can’t remember the name.” She said, “Beauty and the Beast.” I said, “You’re right. I’m surprised you could remember that.” She laughed and said, “I am too.”

It has been many years since she saw the musical, and this is not an album I have played a lot. I am amazed she could recall the name. As she sometimes says, “Don’t count me out yet.”

It’s another reminder of the power of music.

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Taking Stock of Where We Are

Once in a while I like to ask myself how I am feeling about the way things are going. Right now, I would have to say that I am not as upbeat as I have been in the past. Kate is changing, and I am changing along with her. What is most encouraging is that we are still active and enjoying ourselves. On the other hand, she is finding it even more difficult to perform certain tasks that before.

A good example occurred yesterday at Panera. She was working a puzzle on her iPad and got stuck and asked for my help. When I looked, I could see that all but two pieces of a 16-piece puzzle were in their proper places. She thought she had put the other two in their right places. She couldn’t see that a little of the background was showing around the edges of each piece. She also didn’t notice that the images on each piece did not fit where she had put them.

To help her, but not do it for her, I moved the two pieces to the side. That left two vivid orange spaces begging for the right pieces. I not only placed the pieces to the side, I put one above the other that would match the location of the appropriate spaces. She struggled trying to figure out which piece went where. I don’t actually I know if she got them. I tried to look, and she blocked my view. She may have just started over. One of the surprising things is that she placed the first 14 pieces in their right places and does so all the time. I know from past observation that she works very slowly and goes through a trial and error process.

When I see the trouble she has with her puzzles, it isn’t surprising that she is having difficulty getting dressed and undressed. Both of those tasks demand a lot of time and also trial and error.

I attribute her increasing dependence on me as well as her compliance as a direct result of her recognizing that many tasks are becoming difficult. I still don’t see any signs that she is frustrated or emotional in anyway because of these challenges. I do see looks of bewilderment, but that’s it. I am taking that as a good sign, but I don’t like seeing her work so hard to complete such routine tasks.

It is clear to me that from an emotional standpoint, I am the one who is facing challenges. For the first time in my life, I have experienced anxiety. It is evidenced in my forgetting things that I would normally remember. Yesterday, for example, our sitter told me she would not be able to come on Friday. She asked if the agency had told me. I told her they had not. Later I spoke with the agency. The person with whom I spoke said she had told me last Friday and that they are sending the sitter who comes on Monday. I had completely forgotten it. I also find that I am waking up at night and having trouble getting back to sleep, something that rarely happened in the past.

Fortunately, we are still getting out. That provides both of us the kind of stimulation that we need. We are having lunch with church friends today. Tonight we will be at Casa Bella for opera night. We have several out-of-town visits with longtime friends. This Saturday we will lunch with the Robinsons in Nashville. After that, we will visit Kate’s best friend, Ellen. We’ll be back in Nashville next Tuesday for a visit with the Davises. The following week we will also visit with the Greeleys. Since all of these friends live in the Nashville area, you might think it would make sense to make a single trip and stay a few days. In some ways that is right, but doing it in multiple trips prevents Kate from having too much social contact in a single time frame. That wears her out and can be confusing for her. We avoid that by taking multiple trips and spread out the pleasure. It makes each trip a little more special.

Let me close by saying once again life is changing. It is more challenging in variety of ways. At the same time, we are actively engaged in supportive activities and happy about our lives. We are far better off than many others who are making this same journey. We continue to be grateful and wish that everyone could be so lucky.

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Eating out still works for us.

Last night we ate at Bonefish Grill, a place we have frequented more often recently. During our meal, I didn’t see anyone that we knew which is a little unusual. As we got up to leave, we passed by a couple whom we have known through the Knoxville Symphony. We chatted with them a little bit. Then I noticed a hand waving to me from another table. It turned out to be a former neighbor and her husband. We hadn’t seen them in a while. We must have had a ten-minute conversation. After that we saw a fellow Rotarian and his wife whom we also see at some of the music nights at Casa Bella.

We left having had a good meal and another social occasion. It didn’t require anything special on Kate’s part or mine, but it was the kind of thing that provides a little boost in the day. I am glad to say that we have many of these at meal times. While there are a lot of good things to be said about eating in one’s own home, in terms of our personal needs, eating out is just what the doctor ordered.

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Unusual Behavior Continues

Late this afternoon, I decided bring Kate’s extra clothes from the car. They included the the pair of shoes she had taken with her yesterday as well as the robe, night gown, shoes, socks, and the baseball cap. It was then that I discovered a pair of garden shoes she sometimes wears, and another 4 pair of socks. I was especially glad to see the socks as they seem to disappear over time. From time to time, I discover them in various places around the house, often just one sock.

As I would putting a pair of underwear back in its drawer, I noticed something that is not unusual (at least any more). All of the underwear I had carefully folded after washing them on Saturday were all messed up. Not a one was left undisturbed. As I say, this happens after every time I wash. Another unresolved mystery.

After coming home from dinner, Kate went brushed her teeth. She took much longer than I had expected. When she came to our bedroom, she was carrying a stack of books. One was on grandparents. Another was a book of editorial cartoons from our local paper. She also had a kaleidoscope that her brother, Ken, had given her quite a few years ago. It is made in the shape of a old airplane. She hadn’t remembered that it is a kaleidoscope. She put all of them on the night table beside the bed.

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More Unusual Behavior

When Kate was ready for Panera this morning, she was carrying a night gown, a pair of pants, and a pair of shoes and socks. To be clear, these were in addition to those she was wearing. On the way to the car, she picked up a baseball cap and took it with her. She left the clothes in the car but brought the cap inside with her. She hasn’t put it on. It is just sitting on the table.

Yesterday she had an extra pair of shoes with her. I asked if she were going to take them with us. She said, “I might want to change.” Once in the car, she did change. The others are still there. She and I forgot to take them in last night. Now we have two extra pair of shoes.

There are so many things like this that those of us without dementia can’t understand, but they must make sense to her.

Postscript at 2:30 p.m.

I am at Whole Foods waiting for Kate who is getting her monthly facial. I thought I would add something to my earlier post. We came back to the house after lunch. We had just enough time for a short break before leaving for the spa. When I went to the back of the house to see if she were ready, I noticed that she had put on another top over the one she was wearing earlier. She had a pair of underwear in one hand and another top in her other hand. She held the underwear up and looked at me as if to say, “Should I take these with me?”  I told her I thought she could leave them. Then she held up the top. I told her I didn’t think she would need that either. She left both of them without questioning me at all. Apparently, she was just wondering if she should take them. I answered her question, and that was that. What will remain unknown is what made her wonder about that in the first place. So many mysteries.

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It’s hard for a caregiver to win every time.

Last week I had someone out to the house to replant flower pots on our front porch and the patio. Since Kate has always handled these things herself, I wasn’t sure how she would take to having someone else do it for her. I decided the best way to approach it was to tell her that this was an anniversary gift to her. While we were in Asheville, the floral person took care of the pots on the front porch. This was just a small step in the process, and I hadn’t mentioned it to Kate.

This morning I noticed some trimmings around one of the pots when I turned off the porch light. As I walked back to the kitchen, I wondered if Kate had started pruning on the new plants. Then I thought that was unlikely. I got more curious as I started to leave for my morning walk and decided to check. As you know doubt predicted, she had been at work, but it was only a partial effort.

The floral person had planted a sky pencil in the center of each of the two pots to the side of the front door with some cascading plants around them. Kate had cut back half of one of the sky pencils so that one half is untouched with the other now half as tall as it was to start with.

I started to say I was frustrated by this, but that really isn’t so. I think of it as a humorous everyday occurrence. It doesn’t have any serious consequences, and it would be a simple matter to replace the whole plant. It’s possible that we won’t even have to do that. I’ll let the expert handle that; however, it’s a good illustration of the little everyday things that a caregiver, at least this one, doesn’t anticipate.

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A Sad Moment

My previous post was about a humorous moment. That fits well with many of the happy moments I so frequently post. I want to make clear that not everything that happens makes me happy. Last night was one of those times.

As we approached bedtime, I told Kate I was going to get ready for bed and that she might want to do the same. She went to her room and brought back two robes and a night gown. Then she proceeded to get in bed fully dressed. I suggested that she go ahead and change out of the clothes she was wearing. She got out of bed, but she looked confused. She asked what I wanted her to do. I told her specifically to take off the clothes she was wearing and put on the night gown that she had placed on the bed. I left her to take a shower. In a few minutes she came to the shower door. She hadn’t changed at all. She asked, “What should I do now?” She had completely forgotten what I had told her. That was not surprising. It more surprising that she was unable to figure out what to do at all. I told her again to take off her clothes and put on her night gown. The good news is that she followed my instruction.

I feel sad when she finds ordinary tasks so challenging. For me, that is clearly the hardest part of being her caregiver, not the frustrations, not the stress, but watching her gradually lose her ability to do one thing after another. While I take comfort in the fact that we are still able to enjoy so many things, I find myself wishing we could avoid the changes that may soon be coming our way.

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A Humorous Moment

Yesterday morning as I was starting the car for our trip to Panera, Kate opened her door and said, “Wait a minute.” I saw her flip something out of her hand in an underhanded, backward motion. Then she looked back. With a big grin on her face, she said, “It went right in.” She was proud as a child who has thrown a piece of paper rolled into a ball from across a room and into a waste basket. In her case, she had thrown a tissue in the basket she keeps in the garage for all of her used tissues, paper towels, and toilet paper. She uses them to wipe the saliva from her mouth. Yes, she is still not swallowing her saliva.

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Frustrations of Caregiving

Since Kate’s diagnosis, I have read a good number of books written by caregivers. I have also checked a variety of message boards like those on the Alzheimer’s Association’s website and groups on Facebook. I’ve read enough to appreciate the broad range of frustrations experienced by caregivers. Most of these are directly related to the behavior of their loved ones, but some of them involve family and friends who offer their own views concerning what their loved ones need. The volume of complaints and expressions of despair have led me to spend less time on message boards. I don’t mean that I am unsympathetic to their frustrations, but I quickly found that spending much time with them conflicted with my own experiences.

My experiences with Kate have been much more positive than those of other caregivers. At least one experience we have in common is one that has not been a problem for me. Like other people with dementia, Kate repeatedly asks the same questions. “Where are we?” “What is his name?” “How many years have we been married?” I know that this is very annoying to many caregivers. This doesn’t bother me at all, and I don’t know that I have a good explanation for why we respond so differently. I can only say that I just recognize that it is impossible for her to remember. It seems hard to imagine my being annoyed with her for something that is so far beyond her control.

This doesn’t mean that I am not frustrated by other things that she does. I started to use the word “annoyed” rather than frustrated, but that suggests an irritation with Kate herself. That’s not it. It’s a frustration that I haven’t been able to accomplish what I had intended. Most of the time, I even see humor in these frustrating experiences. Let me explain.

If you are a regular reader of this blog, you know that I readily acknowledge having OCD tendencies. I like order and regularity. People with loved ones with dementia will immediately recognize the potential problem. That means Kate and I are like polar opposites. Each day brings a host of things that don’t match my plans or desires. Let’s look at a few examples.

A year and a half ago, I had our master bathroom remodeled. The motivation was to make it more handicapped accessible. Since the remodeling, Kate has showered mostly in the bathroom of our guest room. She does often brush her teeth in our bathroom. I don’t know how it happens, but she frequently spatters toothpaste on the mirror above her sink. She also leaves water on the counter around the sink. When she uses a wash cloth and towel, she rarely hangs them up. They are just thrown on the counter.

On those occasions when she showers in our bathroom, she leaves her night gown that is thrown on top of a cabinet for our towels. She normally uses at least two bath towels, sometimes three. In addition, the bathmat is wet as though it might have been used to wipe up the floor. When she leaves the bathroom, they are almost always thrown on the floor. When I see them, I clean things up. I do notice these things and prefer they didn’t happen, but I think of them as trivial. I am not seriously bothered. In a way, it really is comical. Think of The Odd Couple.

There are two other things that have caused more angst. One is my car. I try to keep all my belongs looking as new as I can for as long as I can. My car is a little over 6 years old, but I would still like it to look like new. It doesn’t. I have accepted the fact that with Kate, it puts too much emphasis on something I consider far less important than the quality of her life. That doesn’t mean that I don’t notice things. I keep a hair brush in the car for Kate. The other day she started pulling out the accumulated hair in the brush. She simply pulled it out and dropped it on floor board at her feet. I am sure she felt better having a brush that was free of hair but never gave a thought to the fact that it was now on the floorboard of my car.

My number one frustration occurs with her clothes. I have many specific examples, but I will pick the one that bothers me most. Friday morning in Asheville, I got out a brand new pair of stone colored pants and a nice casual top that she had worn only a couple of times. They were topped off with her nicest casual shoes. This is what she was wearing when we arrived home and she decided to work outside. About fifteen minutes later, I looked out. She was sitting on the ground pulling weeds. Two or three years ago, I would have suggested that she change into her yard clothes if she wanted to work outside. Over the years, I decided to accept her natural inclination. She has worked in her regular clothes ever since, and I have become more appreciative of Oxyclean. I recognized that I was fighting a losing battle. She couldn’t adapt to my way of doing things. I needed to adapt to hers. Today, I believe we are both winners. More than anything else, I want her to enjoy herself and be happy. She can’t do that if I try to force her to live like me. I am convinced that I made the right choice to adapt rather than fight.

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Strange Behaviors

Tonight Kate came into our bedroom carrying a night gown, a heavy knit sweater, and a tee shirt we had bought on a trip to Africa. It reminds me of similar things she has done in the past. For example, as we left for Barnes & Noble this afternoon, she picked up two framed photographs to take with her, one of her father, the other of our son. A few days ago, she took a pair of underwear and socks with her when we went to dinner. She left them in the car, but several months ago she took an extra pair of socks with her into a restaurant and just put them on the table.

As I was entering this post, she asked me for help. She wanted something to wear for tomorrow. I think she must have intended the tee shirt and sweater to be for tomorrow. I asked if she would like me to get her something. She said she would. I took the tee shirt and sweater back to her closet and brought her something else that I thought would be more appropriate for tomorrow. She was happy to have help. Sometimes she goes for what is easy even if it means sacrificing a measure of independence.