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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.

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Getting Lost is Easy

This Morning: 10:45

We arrived at Panera a few minutes ago. Following our normal routine, I set up Kate’s iPad to her puzzle app and headed to the counter to order her muffin and our drinks. We sit at one of two tables that are about 8-10 feet from where the drink dispenser is located. While I order, Kate fills her cup from the drink dispenser. Even though it is easy for her to see our table, I always tell her and point to the table as I go to order. This works well. She is always sitting at the table working a puzzle when I return though not today.

As I was ordering, Kate casually walked over to me. I introduced her to the new person who was taking my order, I told Kate that her name was Jesse. I expected her to say that our daughter’s name is Jesse when she said, “I have a friend named Jesse.” I am not aware of this friend. I feel sure she was just getting mixed up with our daughter’s name.

When I had paid, we both walked back to our table and took our seats. I didn’t say anything to her , but I know that she didn’t know where our table was located. The easy thing was to find me. She knew that I would be headed there soon. There have been a few other occasions when she hasn’t remembered where our table was located. The big difference is those times was that our regular tables were occupied, so we had to sit in another section of the restaurant. When that happens, I stay in eyesight as she fills her cup. When she is finished, I make sure she gets to the table before I go to order. Today we are sitting at one of the two tables at which we have been sitting for several years, and they are right next to the drink dispenser. To top it off, her iPad has a bright red cover on it that I bought to make it easy to spot. Forgetting where we sit at Panera is yet another step in her journey.

This Afternoon: 3:45

After lunch, we came back to the house. I met a landscaper to talk about a few things I would like to have done in the yard. Kate worked on her iPad for a short time and then took a nap. When she got up, she was ready to go to Barnes & Noble, so here we are. Interestingly, we had a similar event here. I selected a table for us. We switch around a little more here since there are fewer options than at Panera. As I did this morning, I set up her iPad and put it on the table for her. Then I picked up her cup, left the top with her, and went to the counter to get her a drink. As I was ordering, she came to me with the top. I told her that was all right, that I would just put it on when I got the drink. She left to return to the table. I wondered if she would find it. I soon found out. When I finished, I turned around and saw her sitting at another table. I stopped by and said, “Let’s go over to this other table. Our things are over there.” She got up, and we walked back to our original table. Neither this morning’s experience nor this one seemed to be troubling for her. That’s another reason for me to feel grateful.

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Another Musical Highlight

As Kate continues to decline, it makes me happy when I see her enjoy life. Nothing else has the impact of musical performances. What makes it even more special is that we share this pleasure together. This week we have had four evenings of musical entertainment at home. I purchased two DVDs that arrived on Monday. One was Fiddler on the Roof. The other was Les Miserables. We watched Fiddler on Monday and Tuesday night. We watched Les Mis on Wednesday and Friday night. I can’t remember a time when she has been so demonstrative in her expressions of pleasure. There were moments in each musical that made her a bit teary.

I should add that it’s not just the music itself that moves us. We both enjoy the visual aspects of productions, the staging, the lighting, and, especially, watching outstanding actors giving their all. The video of Les Mis is not the theater production. It was the 25th anniversary concert at the Barbican Centre in London. They pulled out all the stops for this one. They brought back former actors for each of the major roles who joined in rousing performances of some of the signature music. This is our favorite musical, and this production was spectacular. I would have loved it had I been alone, but to share this moment with Kate at this point in in her Alzheimer’s was something to treasure.

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A Special Anniversary Lunch In Asheville

Kate and I have celebrated our anniversary in Asheville many times. It comes around Memorial Day, and there are always interesting things happening while we are here. When we were here last year, I wasn’t sure that Kate would be back this year. As with so many things, she has surprised me, so I made plans just a couple of weeks ago. I’m glad we made it one more time.

If you’re a regular reader of this blog, you know that Kate and I have a daily routine when we are at home in Knoxville. Apart from our morning visit to Panera for Kate’s blueberry muffin, we know the restaurants where will be eating for lunch and dinner each day of the week. That routine has created an interesting and very supportive network of people. We find that we are drawn to the various restaurants more for the social reasons than for the food itself.

That leads me to tell you about a special relationship we have developed with a server here in Asheville. We met her at lunch several years ago, when she was working at one of our favorite places. On a later trip, we went to lunch at a different restaurant. It turned out she had moved to that restaurant, and she remembered us. Since that time, we have made it a point to eat There each time we visit the city and, of course, ask for Melissa.

The last time we were here was in December. I mentioned that we might see her again at the end of May, but I was doubtful. She asked for our home address and sent us a Christmas card with a very nice note attached. I was touched by that and intended to write her a note telling how much her note had meant, but I lost the address. I decided I should call the restaurant to get it but never got around to it. Then as our anniversary date got closer, I thought about making the trip back to Asheville to see her as well as Jenny who works at the front desk at the Haywood Park Hotel where we always stay.

Two weeks ago, I called the restaurant and learned that Melissa had changed to another restaurant in town. It’s another place we have eaten a number of times over the years. I called and left a message for Melissa to text me. She did, and we arranged for this year’s visit.

Our lunch turned out to be the highlight of the day, not because of the food (which was excellent) but because of Melissa. I should add that we have established relationships with servers in a number of restaurants in Knoxville. That is not surprising given that we see them so frequently, most of them once a week. This bonding with Melissa is unique in that we are here only two or three times a year at the most, and I don’t know that we will ever be back. What I do know is that it is possible for people to connect in a special way even in something as fleeting as a “server/guest” relationship. Melissa and other servers who have been so kind to us may never know how much they add to our lives.

Postscript: We discovered that she and her husband’s anniversary was also yesterday. It’s just two years for her, but I hope our 55 years together will be an inspiration for her.

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Our Fifty-fifth Anniversary

Kate and I married 55 years ago today. Like every young couple, we began with somewhat vague hopes and dreams. All we really knew was that we were in love. We could never have imagined all that lay ahead. The good news is our dreams have come true. I don’t mean in any specific way. What I mean is that our love is deeper now than every before and that are lives have not only been enriched by our experiences but by sharing them together.

Life is much different now. Kate hasn’t been able to remember birthdays or anniversaries for several years. I have talked about this anniversary several weeks. She has never been able to remember it. That sounds sad, and it is; however, neither of us is feeling sad this morning. Kate is living in the moment. As usual, she is happy with this moment. We’re on our way to Asheville where we have celebrated quite a few anniversaries. We’ll stay at the same hotel where we have stayed for the past 15 years or so. We’ll eat at the same restaurants. We’ll enjoy our time together. Kate won’t remember it, but I will. She has little or no memory, but she is still able to enjoy living through her senses. I am thankful for that. Most of all, however, even though she is forgetting my name, she still expresses her love for me as I do for her. Who would have thought that this far into Alzheimer’s life could be so rewarding. We are fortunate people.

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How long can she remember? Not long.

Somewhere I read that a person in the later stages of dementia can only remember something for 3 seconds. Based on my experience with Kate, that sounds about right. For example, at Panera this morning, she asked me to tell her my “real” name. I asked if she meant my first name. That was the one she wanted. After I told her, she wanted the middle and last names. I gave them to her and then repeated the first, middle, and last names. Then she said the three names. She started to repeat them again but could only get my first name. She tried again. She could get it, but it was difficult to get it right after saying it once. I’m just glad that she doesn’t appear to be overly concerned about it. I emphasize “overly” because she obviously is concerned or she wouldn’t keep asking my name, our childrens’ names, or the name of the city in which we live. She sometimes apologizes for asking again. I always tell her, “That’s why I’m here. You can ask me as many times as you want.”