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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.

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A Funny Incident

2017-10-17 (4:47 am) 

Something funny

About 45 minutes ago, I got up to go to the bathroom. When I got back in bed, Kate was up. Nothing unusual about that. She frequently gets up to go to the bathroom at this time of morning. Then I heard her in the kitchen. Next thing I knew was that she had come back into the bedroom with a glass of apple juice in one hand and a container of yogurt in the other. This was at 4:15 a.m. She turned on the light followed by the TV. I looked over at her and asked (in a very non-threatening way), “What are you doing?” She answered, “Having my breakfast.” I pointed out that it was 4:15. She said, “So?” About five minutes later, she was again ready for bed, turned off the TV and light, and got under the covers as if this were the regular routine.

This brought back quite a few funny moments with my dad. He frequently woke up in the middle of the night and didn’t realize what time it was. When he did, I, along with my brother and two or three close friends, received phone calls from him. I’m glad that all of us were able to accept this habit humorously.

We leave for Texas today, and there are still a few odds and ends that I need to take care of before going to the airport. This will give me a little time for that.

 

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Two Interesting Things

2017-10-16 (10:31 am)      

I have been a frequent reader of the posts of the members of Memory People, a closed group of people with dementia, their caregivers, or anyone else with an interest in dementia. Last night I read one that caught my attention. Many of the posts are written by caregivers expressing a range of emotions from sadness, to frustration, to anger as well as a modest share of more touching stories about the ones for whom they care. This one falls in the latter category. I was especially happy to read it because it sounded so much like something I could have written about Kate and me.

I replied to his post and thanked him. He replied to me and mentioned that he had planned to go to Wake Forest but ended up at the University of Wisconsin because of a nice scholarship they awarded. I suspect he must have checked my Facebook profile and seen that I had graduated from Wake. I responded to him and said that Wake and Wisconsin had been special places for us as Kate and I had met at Wake, and our first move was to Madison. What an interesting coincidence.

I checked further to learn that he is pastor of a Baptist church within a 100 miles of Nashville. I wonder if we will have other communications. I will certainly look for other posts he writes.

The second experience occurred this morning at Panera. Upon our arrival, we stopped at a table where two regulars were seated. We got into a conversation. At one point, one of the men mentioned to the other that we were getting ready to make a trip to Wake Forest. Kate had a big look of surprise and said enthusiastically, “We are? You didn’t tell me that!”

Her response surprised me, not because she had forgotten that we were leaving tomorrow. Even tomorrow morning, she won’t remember when we are going. I did, however, think that she would remember that we were going soon. We have been talking about it and the fact that she will be seeing cousins, her grandson who is a freshman, our son, and a number of friends from elementary school. It was humorous as well because I knew that the man who brought it up knew that I had told Kate about the trip. 

 

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Closing the Week on a Good Note

We ended the week by attending a concert by our local symphony orchestra. We hadn’t attended in about a year because Kate gets tired in the evening. Last night the program included a Beethoven piano concerto by someone who is an outstanding musician. I encouraged Kate to go. She readily accepted. That is in keeping with how she has handled everything this week.

We left at intermission so that Kate could get to bed. As were walked through the lobby, I saw a friend, and we walked over to speak with him. When we walked away, Kate said in a very disturbed tone of voice, “You shouldn’t have said that.” I didn’t know what she was talking about and when I asked she said, “You know.” I asked again. She said, “You told me I should have told them about our moving to Texas.” I told her I hadn’t said that and that she hadn’t anything about Texas. I could quickly see that she wasn’t accepting that and didn’t say anything more. Everything was fine after that. She was in a good mood all the way home and all day today.

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Difficulty Using the iPad

October 14, 2017

I have mentioned several times that Kate is having difficulty when she works on jigsaw puzzles on her iPad. At first, she tended to think there was something wrong with the iPad itself. Over time she has come to realize that “operator error” is involved.

The problem she experiences is that hits a button on the screen that takes her to options to buy more puzzles. She seems to recognize this is not something she wants to do. Her initial response was to close the iPad and put it down on the table when we are at Panera. Then I ask if I can help. She doesn’t answer. I pick up the iPad and get her back to the puzzle she was working on or a new puzzle if the problem occurred after completing her puzzle.

For months, I have encouraged her to simply ask me to help, and I would be glad to do so. This morning, for the very first time, it appears that she may be giving in to that. It occurred when she encountered a slightly different problem. She had almost completely finished a puzzle when she couldn’t see any more pieces. That was because there is a button at the bottom of the screen that removes all the unused pieces from the board when you hit it, something she had obviously done. When you hit it the next time, the pieces reappear. I showed her the button. Then I said, “But I want you to feel free to simply ask me to fix the problem if it happens again.” She said, “I will.” I said, “That makes me feel good. It makes me feel needed.” She smiled and went back to her puzzle.

I know that this doesn’t stop her from incurring any future problems. I do hope that it is one small step in strengthening her view of me as a willing helper when she encounters problems.

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The Sitter is Working Out

October 13, 2017 (5:08 p.m.)

Today was the first day that I did not announce to Kate that the sitter was coming. I just let Mary meet her as she was working outside.  As I had hoped, there was no problem at all. I went out to let them know I was leaving. I also mentioned to Mary that Kate might want to go to Panera sometime and gave her money to buy what they wanted. Kate’s eyes brightened. She had a big smile on her face and said, “We can.” I started to tell Mary what  bagel Kate likes, but Kate stopped me. Then in a very nice way she told Mary that I can be very controlling. I started back to the garage and Mary asked me to wait. She asked me to write down what Kate likes and put it on the island in the kitchen. I did.

I stopped the car as I drove down the driveway and told them I was leaving for the Y. Kate waved and said, “I’m in good hands.” I felt good.

In addition to the Y, I was able to stop by two shops where Kate used to buy most of her clothes. I was looking for a couple of new tops to take to North Carolina next week. I got one top at each place. Then I went to Whole Foods where I got a dish of mint chocolate chip ice cream and worked on this journal.

When I got home, Kate was resting. Mary told me they had been to Panera where Kate had a bagel. Mary said that Kate had remembered our phone number to give to the person taking their order. I was floored. This would have been the first time in several years that she had been asked for the number.

After Mary left, I walked into the bedroom where Kate was resting. I told her I had heard that they went to Panera. Kate said yes then added, “She is great.” This is working out.

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Optimistic About Another Good Day

After almost six years and nine months, I hesitate believe that our high moments will continue indefinitely. That said, since Monday afternoon  everything has gone well. That lifts my spirits and leads me to feel more optimistic about the day ahead.

Last night we went to Casa Bella for Jazz Night. This was a night change from Opera Night and Broadway Night. Kate and I both enjoyed it. I like the fact that provides another monthly musical performance that both of us can enjoy. Besides being entertaining, we also enjoy the company of those with whom we share a table. Typically, it is with the couple are are the senior owners of the restaurant (now retired). These programs are perfect for us because they start at 6:00 for dinner with the music beginning around 7:00. We are through by 8:30. This means Kate gets to bed a little later than other nights but not by much.

We got off to a good start this morning. I slept a little later, 6:05. That meant there was a little light when I took my walk. Right now it is so warm and humid in the morning, I prefer to walk in the dark. When I returned home, Kate was up. I thought that might mean an early trip to Panera. I was wrong. About 8:15, she came into the kitchen and said she was going outside. I was surprised because this is only the second time in many months that she has not come out ready for Panera. When I expressed my surprise, she said she would want go for muffin later. We did and have come back home for a break before lunch. She was feeling a little tired and is resting right now.

The sitter comes at 1:00; so I will plan for us to leave for lunch at 11:30. On Fridays we normally go to Applebee’s which is very close to our home. That will make it easy for me to get back home and put on my gym clothes before the sitter arrives. Because Kate has accepted the sitters so naturally, I don’t expect a problem today.

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Especially Good Mood

October 12, 2017 (7:21 p.m.)

I don’t often post a second post so soon after another, but I have just witnessed a first. About 45 minutes ago, I called Kate in from the yard so that we could get to our haircut appointment at 3:00. She came right in, something that she didn’t use to do but that has been becoming more typical nowadays. When we got in I told her we had to leave in 30 minutes. I know she can’t remember, but somehow it seems to help me to give her a reminder that we are going someplace soon.

As I expected, she took a shower. At 2:40, I went to her room to check on her. She had gotten out of the shower but was not yet dressed. As she started to dress, she motioned to me to find a bra for her. I looked in her drawers and several other places. I finally found one and brought it to her.

Getting into bras can be challenging for her. I hesitantly offered my help and said something about women’s clothes being so difficult to get into. Very naturally she accepted my help and together we got it on. Then I told her I would get a top for her to wear. I gave it to her. She gladly accepted it.

As we were leaving the house for the car, I thought about how cheerful she had been in a situation that in the past has been one of the most difficult for both of us. She knows I like to be on time. I know that she can’t keep time straight and doesn’t seem to be able to hurry. This time she was as cheerful as she could be. She didn’t hurry but she dressed more quickly than usual. What’s more she accepted my help.

In the car on the way to the hair dresser’s, she mentioned that she got ready without causing us to be late.  More significantly to me is that she specifically noted that she didn’t give me a hard time and let me help her. I was stunned with here observation. Then I told her I was glad to hear her say that because I had just been thinking the very same thing.

This particular experience is consistent with the way she has been since Monday afternoon.  I know it’s too much to think that this will last; so I am just going to rejoice in this moment. I am also going to remember that even when she is less cooperative, she is not really difficult to deal with. As I have said so often, we are very fortunate. I hope those of you who read this and are having much more challenging experiences will understand that I recognize our good fortune and wish it could be the same for each of you.