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A Great Day with Family and Close Friends

2017-10-22 (8:05 pm)

Today’s highlight was a family reception following church. We met in the parlor where the family had attended many events over the years. This included wedding receptions for several of us who were in attendance. It was a very informal gathering made special because we don’t get together very often anymore. We took lots of pictures that I am sure we will treasure in the years to come.

We went back to our hotel after the reception. Later in the afternoon, Kate and I visited two friends at a senior facility. One is my former professor with whom I had lunch on Friday. The other is the mother of a good friend who lives in Nashville.

We went directly from this visit to take another friend to dinner. Naomi has meant a lot to us. For years she was a member of Kate’s mother’s Sunday school class. During the late 1990s, after Kate’s mother had suffered a stroke, Naomi served as her caregiver. It meant a lot to Kate to have someone who knew and loved her mother to manage the onsite care that was needed. Even then Kate traveled back and forth between Knoxville and Fort Worth to see her mother and take care of lots of details.

During dinner, we talked about lots of memories. Kate loved it. I think Naomi did as well. It was a perfect close to our reunions with friends in Fort Worth.

 

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Flexibility Required

2017-10-21 (5:39 pm)

We’ve had a nice day. We made another visit to Sadie’s café for a cranberry scone and a large slice of pound cake, one of my favorites. We were there for about an hour before coming back to the hotel for another hour. As we were leaving the hotel room, Kate said, “Haywood Park.” I knew she was trying to show me that she recalled the name of our hotel. Of course, it was wrong again. I didn’t say anything, but the look on my face must have given away my thoughts. She said, “That’s not right?” I shook my head and told her it was the Hilton. She accepted it without a problem.

We met our son, his wife, their son as well as Kate’s brother, Ken and his wife, Virginia, at our favorite BBQ place for lunch. It was good to see each of them. We had seen our son in September, but it had been June since we had seen the others. It was especially nice to see our grandson who is now a freshman at TCU.

At lunch, we learned that the powers that be had decided to “stripe” the stadium by having people in certain sections wear black shirts while others wore gold, the University’s school colors. The section in which we were to sit was asked to wear black, and we didn’t have black shirts. To rectify this, we stopped by a shop and bought black golf shirts with the WF embroidered in gold on the front.

We got back to the hotel where Kate wanted to rest. It wasn’t too long before she wanted to get out of the room. This, as I may have said before, is not unusual. I suggested we go to Panera where we are planning to meet Ken and Virginia in the morning. Just before 5:00, I suggested we go back to the hotel before leaving for the football game at 5:30 or shortly thereafter.

When we got back to the hotel, we discovered that all the parking spaces were occupied. We ended up parking on the street about a block from the hotel. As we did this, I noticed a lineup of buses with TCU colors. It appeared that they were going to the stadium. I thought this was fortuitous as I didn’t really want to drive the car to the stadium and fight the traffic. I checked and learned that it is a free shuttle service to and back from the stadium.

Then we walked back to the room where Kate had wanted to rest before leaving for the stadium. We hadn’t taken but a few steps when she said, “Do we have to go to the game?” I hesitated a moment and said we didn’t have to go but that I had wanted to go. We tossed this around a few minutes, and I decided it was better not to push her even though she had said she would go. We came back to the room where I sent a text to our son and his wife informing them of our decision. Then I took our tickets to the front desk of the hotel and asked the man behind the desk if he knew someone who might like the tickets. He did.

The truth is that I didn’t have my heart set on the game at all. I did believe it would have been nice to be with our son and his wife for the game. It was that experience and not the game itself that was important to me. I also have to confess that I’m the kind of person who makes plans and then follows through on them. Thus, it requires a good bit of adaptability to decide not to go to a game for which we bought tickets a couple of months ago, bought shirts for a few hours ago, and came back from Panera to get ready to go to the game an hour ago. On the other hand, it illustrates two things I believe are relevant. The first is that living with Alzheimer’s involves lot of changes in plans. Second, it illustrates the importance of adaptability. If I were less adaptable, I would be miserable. As it is, I am disappointed, but I understand the need for the change. I feel for people who have more difficulty making this kind of change.

 

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Up in the dark

About 2:30 this morning, Kate got up to go to the bathroom. I woke up quickly enough that I was able to turn on the light beside the bed. As usual, she took a good while before returning to bed. I discovered this morning that she didn’t quite make it to the toilet in time which is not a rare event whether at home or while traveling.

When she got back into bed, she said enthusiastically, “I love this house.” I asked why, and she answered, “Everything is so close.” I didn’t go any further. I was just glad she was happy.

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Another Successful Day

2017-10-20 (9:29 pm)

In my previous post, I indicated my optimism that today would be another good day for Kate. I am happy to report that I was right. The main event was a lunch with four childhood friends of Kate’s. A couple of month’s ago, I had spoken with one of them, Laura Williams, about our planning to attend homecoming this year. In that conversation, Laura asked if there was anything she could do for Kate. I mentioned the possibility of getting several other old friends together for lunch. She said she would love to arrange that. At the time we were thinking about their going out to lunch someplace. When it came close to the time of our trip, Laura told me that another of her friends wanted to host them at her house. She had done that once before several years ago.

Laura chose two other friends who had also been close to Kate growing up. We talked about an appropriate number. I said having five including Kate was ideal. I tried to prepare Kate for this lunch by mentioning it to her a number of times over the past few weeks including the names of each of the four friends who would be there. I was not at all surprised when she could not remember either who the friends were or that we were even making the trip home.

This morning she seemed particularly concerned about getting their names correct. Several times she asked me to tell her the names again. This always came after my mentioning the lunch she was going to. Without these prompts, I don’t believe she would have even remembered that she was going to lunch with anyone.

As we were driving to lunch, she kept rehearsing the names of her four friends. I don’t recall that she ever got all four of them. Sometimes she struggled to get one. I told her I didn’t think she needed to worry about the names as she would remember the people when she saw them, and she wouldn’t have to call them by name. Of course, that didn’t stop her from trying.

I thought it might be good to remind her of our children and grandchildren. That led to a shortened version of the same kind of rehearsal of their names. It is only in moments like this that I really have evidence of how poor her memory has become. In much of our ordinary conversation, she is not required to use specific names or places etc. It is times like these when I am saddened. Other times I tend to think she is doing better than she really is.

I knew Kate’s time with her friends would go well the moment we arrived. All four of them greeted her warmly, and they immediately started getting updates from everyone. While Kate was at her lunch, I picked up a former professor and mentor for lunch.

When I returned to pick up Kate, they all told me what a wonderful time they had had. Two people specifically thanked me for suggesting this opportunity. I was touched by the reception Kate received as well as the joy on her face.

The hostess, Linda Turner, told me that an old friend, Marjorie Eggleston, lived nearby and would love to see us if we had time. Marjorie is now 93 and in a wheel chair, but her mind is sharp. She and I often spent some time together chatting at various family celebrations. We thought of ourselves as buddies at that time. It was good to see that we still feel the same after all these years. Kate was equally thrilled to see Marjorie as her parents had been close friends of Marjorie’s husbands parents. They had been like an aunt and uncle to Kate.

As thrilled as she was to see Marjorie, Kate was also confused. She kept thinking that Marjorie was her husband’s mother whom she thought of as an aunt.

We ended the day with a reunion dinner at TCU. There were very few people there whom we knew, but it was nice to see them.

It turned out to have been as nice a day as I had hoped.

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An Early Start on the Day

We had a quiet evening after getting to Fort Worth yesterday afternoon. We had dinner at the Italian Village, a long-time favorite of Kate’s parents and of ours as well. We spoke with two of the children of the original owner. They remember Kate’s parents and their friends. It was a nice beginning to our weekend here.

We slept well until 3:15 when Kate got up to go to the bathroom. I am always concerned about this. On several occasions she has gotten up and tried to open the door to the hallway thinking she was going into the bathroom. At least once she had actually walked down the hall before I caught her. These experiences remind me of my father’s telling me that he had tied a string between his arm and my mother’s to prevent such things. I didn’t understand at the time. It is all too clear now.

It is somewhat more complicated at this particular hotel. I usually leave the light on in the bathroom and crack the door open enough to serve as a night light. At this hotel, the light only remains on for a certain amount of time. Then it clicks off automatically. For that reason, Kate struggled to find the bathroom. I told her to walk straight ahead and then open the door on her right. First, she tried to open the door to the adjoining room which is on the left. I repeated that she should turn to the right, but, of course, the door on her right was now the door to the hall. She tried that. I had the security latch on which prevented her getting to the hall. I told her again to look for the door on the right. She got it.

As usual, she was in the bathroom a long time. I began to be concerned that she might be having a problem and asked several times if she needed help. She said she was fine. Finally, she came back to bed. By this time, I was wide awake. I kept thinking about things to do and concerns about Kate and future travels and all sorts of other obligations. About 4:15, I got up and ran in place for about ten minutes. I have found that this helps me to relax once I am back in bed. It worked. I didn’t go back to sleep immediately, but I did get back to sleep. I didn’t wake up until 7:30, a rare event for me.

I got up and dressed. Then I went downstairs to see about breakfast. The hotel offers a continental takeout breakfast. I got two of those and came back to the room. Kate had gotten up. I ate my breakfast. She ate a muffin a drank her orange juice. Then she took a shower and dressed. At this point it was 8:45. She was ready to get out of the hotel room. I suggested we take our iPads and go to Sadie’s Cafe, a breakfast and lunch place that is owned by former neighbors of her parents. We were over there for an hour before coming back to our room where Kate has been resting.

We leave in 15 minutes. I have arranged for Kate to have lunch with four of her childhood friends at the home of one of them. I have repeatedly told Kate about this and the names of the people who will be there. She still couldn’t repeat them if I asked her to; however, these are people she will recognize and with whom she should Be quite comfortable. I am very optimistic about this.

While Kate is having lunch, I am picking up a former professor and taking him to lunch. He was very important in my career. He encouraged me to pursue sociology at a time when I was struggling to figure out what kind of career to pursue. We, too, should have a good time.

 

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Lunch with Another Friend and Then to Fort Worth

First, an aside. Four years ago today, my dad celebrated his 100th birthday. He was in rare form that day. He entertained the crowd of 94 with his reflections on life in in youth and comments about the people and changes he had seen. Two days later, I received a call at 6:30 a.m. telling me that they were taking him to the emergency room. He died exactly two weeks later. He left us in style. I never feel sad about his death. He lived life to the fullest and retained his sense of humor to the very end. To me he was a model of optimism and adaptability. Although he suffered hardships at various times in his life, especially as a teenager when his dad left his mother and him for another woman, he always made the most “of the hand he was dealt.”

Now a comment or two on our second full day in Texas. Although we had had a full day yesterday, Kate was up early this morning. I had gotten up an hour or more before she did and brought scrambled eggs and sausage to the room for me as well as a couple of muffins, yogurt, and orange juice for her. After she had dressed, she was ready to go just like she is when we are at home. I suggested we walk over to Starbucks which we had done yesterday. We were there about an hour before returning to the room for a break. Then we headed to meet another childhood friend of Kate’s, Meg Wright.

Unfortunately, I had given Meg the wrong location of the restaurant where we were to meet. Thus, we got together a little later than I had intended. That did not, however, diminish the fun that Kate and Meg had before, during, and after our meal. When it was time for us to leave, Meg and Kate hugged each other. Tears welled up in my eyes as I thought that this may be the last time these two see each other.

Once again, Kate has shown some confusion over a number of things. This morning she got up and went to bathroom while I was in the other room. She walked out of the bedroom, and I asked if I could help her. She asked me where the bed was. She was standing only a few feet from it. I pointed to it and said, “Right there.” She turned around and went back to bed. A little later, she got up again and asked me where the bathroom was.

While we were waiting for Meg, she asked me several times who it was we were waiting for. Several times, I also mentioned our grandson, Brian. Each time she asked me who is parents were. I told her he is our son and daughter-in-law’s son. I’m not sure if she ever got that straight. I think a lot of information is being thrown at her, and she is in overload.

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The End of our First Day in Texas

2017-10-18 (10:01 pm)

Late this afternoon we met our friends Nancy and Charlie Hardwick. Kate had known Nancy in junior high and high school. Charlie and I had been roommates at TCU during our sophomore year. We have visited them a number of times over the years when we were in Denton where Nancy has lived for more than 28 years. This is a second marriage for both of them. Charlie was diagnosed with dementia more than five years ago. Nancy had told his friends about him several months before our 50th class reunion. That means that he and Kate were diagnosed about the same time. Either he was diagnosed later than Kate or the progression of his illness has been more rapid as he is further along on his journey. In fact, I got a text from Nancy before we met saying that Charlie would not remember us.

We met at a restaurant near their house. When we walked in, Nancy told us that when she mentioned that they were going to meet us for dinner, Charlie said, “You mean Kate Franklin?” At least he remembered her name. As we got out of the car, Kate said, “You’re going to have to do all the talking for me.” That turned out not to be true at all.

We had a delightful time with them. We simply picked up where we had left off when we last saw them two years ago. We took pictures and reminisced about our college days and exchanged information about the college friends with whom we had kept up. I believe all four of us were disappointed that we might not have this experience again. I know that Charlie and Kate will not have thought that, but Nancy and I did.

As we walked to the car, Kate said, “Were they just passing through town?” I said, “No, they live here.” She said, “Where are we?” I told her we were in Dallas (again). Despite these moments of confusion, this was one terrific day. I am sorry it is over but know there is more to come.

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Demonstrating Independence

2017-10-18 (10:09 am)

Kate had a couple of muffins and orange juice that I brought to the room this morning. Then she took and shower and dressed for the day. Because I have learned on past trips that she doesn’t know where she is when she gets up, I made a point of telling her we were at the Residence Inn in Nashville and that we would be having lunch with her cousin. After getting dressed, she said, “What now?” I told her that her cousin would be coming to get us in a little over an hour and that we had time to relax on our own until then. Then I asked if she would like to go to the hotel lobby or to Starbucks. She wanted to go to Starbucks. It is almost across the street; so we walked. As we were walking, she said, “Ask me where we are staying.” I was surprised as she had never done this before. She proudly answered “Haywood Park.” I smiled but said nothing. That is the hotel we stay in while we are in Asheville. We have stayed there many times since 2002, three times Since Memorial Day this past May.

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Thoughts on Caregiving

Over the past two days, I have heard the stories of two different caregivers of people with dementia. I have identified with both of them. In each instance, the dominant message involved their loving relationships. This is in striking contrast to the many posts that I read on the Caregivers Forum on the Alzheimer’s Association website and the Memory People group on Facebook. I have trouble identifying with so many of those because they are written by people whose patience has reached its limits. They are tired, frustrated, and often angry, if not at the person with dementia, with other family members.

I have stated many times in this journal that Kate and I have been very fortunate. While we face many of the classic issues accompanying Alzheimer’s (forgetfulness, losing things, dressing, toilet issues, etc.), we have not had to deal with problems created by family members, having to simultaneously work and also care for the person with dementia (PWD), and trying personality issues.

This is a reminder to me that the situations in which the caregiver and PWD find themselves are as different as those that all families encounter. When things go well (as they have for Kate and me), one is prone to believe there is something special about the way we have handled the situation. It often leads to our telling others how they should do things.

I don’t want this journal to be guilty of that. I feel for those who have faced the greatest of challenges with this disease. If there is something that others might glean from our experiences, I am happy. I don’t, however, want to suggest that others should do what we have done or that what has worked for us will work for everyone. All of us begin with our own assets and liabilities. From there we try work out the best plan for ourselves. That is what we have done.  I think that is all any of us can do. As I have said, Kate and I are fortunate. We have faced many of the typical trials and tribulations of Alzheimer’s, but we have not (yet) faced some of the most difficult ones. My heart goes out to those of you who find yourselves in a very different situation.

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Emotional Moments in Denton

Kate’s cousin, Sharon, picked us up at our hotel for lunch and a couple of stops afterward that provided Kate with some very special emotional moments. First, we went to lunch where we had time for lots of reminiscing about many happy family times. Sharon is only a year or so younger than Kate, and her memory is fully in tack. She remembers with some details stories of individual family members and especially the family Christmas traditions. She told us about the three times that the entire family gathered together in three different homes of family members. They began with the exchange of presents about 10:00 at one house. Everyone dispersed to their own home after that and came back together in the early afternoon for lunch. That was followed by individual family time at their own homes. Then they came back together in the evening for light snacks and desserts leftover from lunch.

As Sharon recounted these family stories, Kate was elated. It was a touching experience for me to see how enthusiastically she listened to them. After lunch, we went back to Sharon’s house. It is filled with many items from her mother and father’s home as well as other special things from the homes of other aunts and uncles. She even has a door that came from Kate’s and Sharon’s grandparents home. It opens out to the deck on the back of the house.

Kate responded tearfully to both the things her cousin showed her as well as the things she told her. As an observer, it was touching to see the way Kate responded. Sharon brought our time together to a close with another special moment. She drove us to the home of her son and his wife to show us the dining room table and chairs that were originally in Kate’s parents’ home. I believe her parents bought them when they moved into their home in 1949. The chairs still had the original fabric on the cushions.

Sharon drove us back to our hotel where Kate rested a while before dinner. This experience is certain to be a highlight of our trip, but we have several other get togethers that I hope Kate will also view as meaningful. One of those is coming up at dinner when we are meeting a couple we have known from Fort Worth and TCU. We should have a lot of memories to discuss.

One final and interesting end to our visit occurred when Sharon dropped us off at our hotel. As we walked away from her car, Kate said, “Now who is she?” I told her that was her cousin, Sharon. This is yet another example of what strange twists can occur with this disease. I am confident that she understood who Sharon is throughout our time with her, but something happened right at the end that caused her to forget.