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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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Kate’s Increasing Dependence

Kate has tried hard to maintain her independence. The easy part was shedding some of the responsibilities that she didn’t like so much. That involved many of the daily household chores, especially meal-planning and cooking. She quickly accepted my playing a greater role with those. The one chore she held on to the longest was washing clothes. As it was with our meals, she never announced that she was retiring from washing, she just stopped doing it. That was about three years ago when I added that to my own responsibilities.

With those aspects of her daily life out of the way, she only had to be in charge of her more personal things. The major item on that list was her clothes. Until recently, she didn’t want me to play any part in telling her what to wear or suggesting or picking out her clothes. Now she occasionally asks me to pick out something for her to wear. That happened this morning. She had started getting dressed in our bedroom and needed a top to go with the pants she wore yesterday and left on the chair beside our bed. She said, “I don’t have a top.” Thinking that she was indirectly asking for my help, I said, “Would you like me to get something for you?” She said, “Please.” She frequently asks me to get her something to wear to bed. In these situations it seems like she just doesn’t want to have to fool with finding the right thing.

Over the past year or so, she started asking my permission to work outside. Since she rarely works outside anymore, I don’t hear that much these days. I have come to interpret her asking permission as a sign of her not being sure what she should do. That is particularly true now. She doesn’t ask permission. She asks, “What now?” “What can I do?” “Should I take my iPad?” “Should I take my cup?” “Should I get ready for bed?” “Is time to go to bed?” One of the surprising ones is that sometimes she asks if she can use her iPad in places like a doctor’s office.

She is going through a transition with respect to dressing herself. She almost always does that without any help at all. It is becoming increasingly difficult for her to get her clothes on without putting them on inside-out or backwards. Since I am not usually in the room when she is dressing, I have usually noticed the problem after the fact. In several cases recently, I’ve observed her taking a long time to look at the front and the back of her clothes in order to prevent putting them on the wrong way. It can be painful to watch. I know that the time is approaching when I will need to help her dress on a regular basis. On a number of occasions she has asked for help putting on one of her tops and a night gown. She’s cute when she does this. In a very childlike way, she says, “Help.”

Beyond needing more help with routine daily tasks, she is almost totally dependent on me to help her with her memory problems. I can’t be sure, but it appears that she never remembers where she is (the city or  place we are in). Even when I tell her, she can’t remember for any length of time. She often asks where we are within moments of my having given her the answer before. The same is true for names of people, places, and things. The other day she tapped on her right knee and asked, “What is this?” Yesterday she pointed to her elbow and asked the same question. She is rapidly losing all the connections between things and their names.

Her dependency has extended to include just about all information that she needs or wants to know. She neither reads nor watches television sufficiently to learn much of what is going on around her and in the world at large. She does catch snatches of sound bites either on the radio when we are in the car or on television when I am watching the news. She often says, “You going to have to explain this to me later.” Of course, neither of us remembers “later.”

I haven’t mentioned her dependency on me for transportation. She has accepted that, but she still recognizes that means a significant restriction on her ability to go where she wants when she wants.

Apart from all these things, she is dependent on me to keep her prescriptions up-to-date, get them out for her to take, plan all our daily activities, keep her iPad charged, make sure she has her iPad and cup when we go to Panera or Barnes & Noble, schedule all entertainment, massages, facials, and travel, buy her clothes, wash her clothes and take care of virtually everything else that needs to be done.

Given all these things, it may seem surprising that there are some situations in which she asserts her independence. One of those is when she refuses my hand walking up or down steps or curbs. Another one is when she is working on her puzzles on her iPad. When I see her struggling, I sometimes ask if she would like my help. Sometimes she does, but she usually doesn’t. I guess there are so many things for which she needs help that she wants to hold on to those she can handle. I don’t blame her. I would do the same if I were in her position.

Yesterday I read an article by someone I follow on Twitter. It addressed the importance of approaching dementia with a positive outlook. I retweeted and said that Kate and I have done just that. Even with her growing dependence on me, both of us have maintained a positive outlook about our present situation. We still enjoy each other as well as being active. That said, I do have moments when I feel more stress as we approach the latter stages of her illness. That happens most often in the middle of the night. I begin to think of the future. Then I have difficulty going back to sleep. This hasn’t yet become a significant problem. It is annoying, however, and it makes me more concerned about what lies ahead.

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Another Surprise

I keep noticing and mentioning things that Kate does that come as a surprise given that her memory is so weak. She is now in bed with her iPad. I have a James Galway album playing in the background. A moment ago, she said, “I love this.” It was Sondheim’s “Send in the Clowns.” The recording she has heard most often is a vocal rendition, especially one by Barbra Streisand. As she listened, she said, “This is one without the words. They’re both good just different.” It surprised me that she was able to make the distinction and to express it. She has never been able to distinguish her iPad in its red cover from mine that has a black cover and is the larger version. This may be another way in which a person with dementia is able to respond appropriately to music.

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Success at the Movies

Movies have played a significant role in our entertainment. That has been especially true for the first five or six years after Kate’s diagnosis. About a year ago, that began to change when she could no longer appreciate them. I was surprised that she had enjoyed them for so long. She hasn’t been able to follow a plot for at least three or four years, perhaps longer.

Among the things I have learned about dementia is that people diagnosed with the disease retain many abilities even when their memories fade. For example, they can often read emotions of those around them. I suspect that ability has helped Kate appreciate movies that she doesn’t understand. She gets a feeling for the characters. When she likes them and the situations in which they are involved, she becomes engaged. She has a positive experience. She can also relate to people and situations that are important. For example, she liked Darkest Hour. She recognized Churchill as an important historical figure. She knew that World War II was a horrific event of our time. She could sense that the movie dealt with significant aspects of the war.

Unfortunately, I have found fewer and fewer movies that really engage her, but I keep trying. Yesterday, I had a success. Normally, the sitter would come while I attend my weekly Rotary meeting and then exercise at the Y; however, I received a call from the agency that Anita was sick. They were happy to send someone new, but I decided to skip Rotary and the Y and spend the afternoon with Kate.

Over the weekend, I had received an email from Kate’s brother, Ken. He said that he and Virginia had gone to see RBG and liked it. Sometime within the past year, I read Sisters in Law. It focused on the lives of Sandra Day O’Connor and Ruth Bader Ginsberg. I have always enjoyed biographies and found both justices to have led fascinating and inspiring lives. That and Ken’s recommendation prompted me to take advantage of a free afternoon with Kate to see the movie. I am so glad I did.

The film provides an engaging account of Ginsberg’s life and personality. Her story is an interesting one. I was especially pleased that Kate enjoyed it. As we walked out of theater, I said, “Isn’t it amazing how someone so slight in stature and so soft spoken in her own personal style could achieve such success.” Kate said, “Who is that?” I said, “Ruth Bader Ginsberg, the woman the film was about.” She said, “I want to see that film.”

What’s truly amazing is how Kate could have watched the whole movie about Ginsberg, love it, and then not recognize who I was talking about. It is a beautiful illustration of how she can enjoy a movie that she can’t understand. I hope I’ll find others that will give her an equal amount of pleasure. That keeps me happy.

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Still Enjoying Musical Theater

Kate’s memory continues to disappear, but we are still enjoying some of the things that have been important to us throughout our marriage. One of those is attending live performances. Her enthusiasm for some things has lessened during the time we have lived with Alzheimer’s, but we both get a boost when we attend most musical events.

This past Sunday afternoon we attended Hairspray at one of our local theaters. We had originally seen it on Broadway and liked it. That made me wonder if we would feel the same about a local production. I had no need to worry. It was outstanding. Each time we attend an event like this, I also wonder how Kate will enjoy it. At some point, I know she won’t. We haven’t reached that point yet. I hope it is a long way off.

By chance, we sat next to a couple that we see at three different restaurants we frequent. We arrived early enough to get a little better acquainted with them. What began as a musical experience also became a social occasion. It was a banner day for us. Experiences like this go a long way in helping us to maintain a positive outlook about life.

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Memory Problems This Morning

As usual, Kate and I are at Panera this morning. A moment ago, she initiated a brief conversation about names. It began when she looked at me and said, “What is your name?”

I said, “I would tell you, but I think you’re teasing me.”

She started guessing, “Charles. . . David. . .John.”

Then she asked me to tell her. I asked her if she really didn’t remember or was just playing with me. She said she really couldn’t remember.

I said, “Richard.”

She said, “I know that. What’s your last name?”

Richard: “Creighton.”

Kate: “I don’t think I remember my name.”

Richard: “What is it?”

She thought a minute and said, “Kate.” Then she added her middle name.

Kate: “Do we have children?”

Richard: “Yes, we have two wonderful children, a girl and a boy.” Then I proceeded to tell her their names as well as the names of their spouses and children.

Kate: “Well, I really know them. I just couldn’t remember. I’m a little slow this morning.”

The interesting thing is that, aside from this memory lapse, she seems quite sharp this morning. A little earlier, Claude, a man we see frequently when we are here, stopped at our table and visited for a while. During his visit, she teased him about several things. He left for a while. When he returned to get a refill on his coffee, he teased her by saying that she had hurt his feelings earlier. She told him she had lived with me too long and was picking up some of my habits. He said she better smile at him from now on. She did.

A few minutes later, I leaned over to Kate and said, “I love you.”

She said, “I love you too. Of course, I can’t remember your name.”

I said, “The name is not that important.”

She asked, “What is your name?” Then she guessed several names and finally asked me to tell her.

When I told her, I said, “You knew that.”

She said, “Yes, but it just wouldn’t come to me.”

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A Rare Moment

Over the past 2-3 years, Kate has lost her interest in television. I suspect that is because it’s too hard for her to follow. Until the past year or so, she sometimes turned on the Today Show in the morning. She rarely, if ever, turns the TV on these days. I record the PBS Newshour and watch it after we return home from dinner. She sits with me and works on her iPad. I sometimes watch Nature as well. When I do, she occasionally looks up and notices something that catches her eye. Otherwise, she devotes her attention to the puzzles on her iPad.

Thus, it is something of a rarity that we watched some of the Royal wedding that took place on Saturday. No, we didn’t get up at 4:00 a.m. I recorded an ETV/BBC recording that began at 9:00 a.m. After lunch, we watched the portion that involved the wedding itself. Prior to that Kate had been working on her iPad. She put it down when Harry and William took their places in the chapel and didn’t pick it up again until Harry and Meghan departed in their coach.

Neither of us is a follower of the Royals, but both of us took interest in this wedding. I can’t speak for Kate, but events like this have taken a different place in my life since her diagnosis. During the wedding I was reminded of the wedding vows we took that were very much the same ones as those of the Royal Couple. In particular, the words “in sickness and in health . . . till death do us part” were more meaningful now than at the time we said those same words in 1963. I trust that I am now and will continue to honor that commitment. I have no doubts that I will. It was a rare moment for us to be watching TV together and a touching one for me.

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Reflecting on Travel

As I noted in my previous post, our trip to Texas went well. We had a good time with our son and his family as well as Kate’s brother and his wife. On top of that we didn’t have any bad experiences. I wish I could say that about other trips we have taken. During or after several previous trips, I made changes in our future travel plans. For example, after a wonderful trip to Switzerland in 2015, I decided that would be our last international trip. In June 2015, we took our son and daughter and three grandsons to New York City. It, too, was a great trip, but I decided Kate and I would not return. In January 2016, we took a cruise to the Caribbean that led me to cancel a subsequent cruise I had booked for that May. One of the hardest decisions of all was one I made last summer when we made our thirteenth visit to Chautauqua, NY. I felt it was best that we make that our last one.

Any kind of travel requires a certain amount of adjustment. Being in a place that is different means having to meet the demands of different schedules and routines. All of the normal issues are compounded when one is traveling with a person who has dementia. Much of that involves packing the right clothes and medicines, getting to the airport on time, going through security, and boarding the plane. Restrooms add another set of problems. Renting cars or using taxis, trains, or buses represent more potential trouble.

These complications have to be balanced against the pleasure of the travel itself. In each instance where I decided to cease that particular travel, I decided the potential costs outweighed the benefits. For example, the cruise I canceled was a two-week cruise from Barcelona to Amsterdam. It was clear from the January cruise to the Caribbean that Kate did not enjoy some of the things she had enjoyed on other cruises. That included the nightly entertainment. She didn’t attend a single night. She also found it challenging to engage in conversation with the people we sat with at each evening meal. In addition, I lost her for about 30 minutes on the pier where our ship was docked in St. Thomas. I didn’t want to think about the possibility of losing her while we were off the ship at one of the ports in the Mediterranean.

Our trip to Texas has led me to think a little more about the role that familiarity or lack of familiarity plays in the stress and enjoyment of travel. Throughout our marriage Kate and I have been pretty bold about traveling to unfamiliar territory. When our children were 4 and 2, we took the children with us on a 6-week trip to Europe, 3 weeks in Spain and 3 weeks in France. We went without a specific itinerary or hotel arrangements except for a hotel in Madrid when we arrived and a hotel in Nice 3 weeks later. Not only that, but our two-year-old was in cloth diapers, and we didn’t stay in a single hotel with a bathroom in our room. We did have a sink that Kate used to wash diapers each day.

Even though Kate does not remember where she is when she is at home in Knoxville, she is accustomed to certain routines like going to restaurants, getting her nails done, going to musical events, etc. Travel throws her into a set of things that are either new or forgotten. That places more responsibility on me to manage her. I find that increasingly stressful. Upon our return home, I immediately felt a sense of relief. That’s not because I have any less responsibility for Kate. I believe it relates to the greater familiarity with our surroundings. I have greater control over our whole situation. I have a better sense of the options should we encounter a problem. The good news is that I feel somewhat the same way when we arrive at the home of a family member, it is easier for me. It’s getting there and back that is the big issue.

The success of this past week’s trip leads me to believe there is a good chance that we will be able to return to Lubbock for Thanksgiving. Of course, that is six months away. If Kate’s decline continues as it has in the past few months, I might change my mind.

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Travel Day 7: San Angelo to Lubbock

A week ago today, Kate and I left on our trip that brought us to Lubbock and San Angelo after an overnight stop in Nashville. I am glad to report that the trip went well. I had planned the trip since our last visit here in January. On that trip we were able to spend very little time with Kate’s brother and his wife. Knowing that future trips may not be possible, I felt this was an important one.

It was an especially good visit. We enjoyed being together with Ken and Virginia. It was a perfect blend of easy conversation mixed with visits to interesting places. One of those was the restaurant at which we had lunch yesterday. It is located along the Concho River Walk. It was a beautiful day to be overlooking the river.

We said our goodbyes to them after lunch and made the drive back to Lubbock. The day was not over. We topped off our visit to Texas by getting together with our son and his family for dinner at our favorite BBQ place in Lubbock. We went back to their place where we played a game of Sorry before we came back to the hotel for the night. Kate gets very confused playing games; however, a game of chance like Sorry gives her an opportunity to shine. She did just that by winning.

As I have mentioned before, her recent sleep pattern has been more erratic than in the past. During the trip, she seems to have gravitated back to her old pattern. She has been getting to sleep somewhat later than normal but is getting up between 9:00 and 10:00. That seems to be a pretty good routine. During the trip, she has been completely off her Trazadone that was to aid her sleeping. I am happy to see her drop a medication.

Today, we fly back home via Nashville. No overnight this time. We arrive there about 6:10. We’ll get something to eat and then drive drive to Knoxville. Although Kate has been confused over people’s names and where we are, she hasn’t displayed any uneasiness that I can tell. Travel is more demanding than it was prior to Alzheimer’s, but we haven’t encountered any special problems like losing her in an airport as happened last fall. It’s been a week of special moments with family. Our trip has been a success.

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Whoops!

As I have often said, Kate handles herself well in social situations and has done so since we arrived here in San Angelo. Before she got up yesterday morning, Ken, Virginia, and I talked about how well she is doing. Of course, she slips up occasionally. That occurred last evening when we left our table at the restaurant and moved to an adjoining coffee shop. Ken and I went to the counter to order our dessert while Kate and Virginia selected a table. I should add that we have known Virginia since 1993 when she and Ken got married. Later Virginia told me that Kate said, “How do you know Ken?” Virginia answered, “He is my husband. I am his wife, Virginia.” She said Kate’s face lit up and she said, “I’ve heard your name. I’ve heard such wonderful things about you. I am so glad to put a face with the name.” Although some might focus on the sad aspects of memory loss at at time like this, Virginia celebrated the moment with Kate who was so happy to meet her (again). When Virginia told the the story, I felt the same way.  It makes me happy to know she can experience such special moments.

She had a similar experience when we first arrived on Tuesday. She saw the photo album Ken had sent to her about ten days ago. She went through it two or three times. Each time she experienced it as though it were her first time to see it. Each time she showed Ken and Virginia a page with their wedding picture.