Over the past few years I have come to recognize the value of a routine for Kate. As someone with a touch of OCD, I have always liked routine, but that is something that does not come natural to Kate. As I have assumed a greater role as the person in charge, I have guided us into a regular daily pattern of activities. That involves letting her sleep as long as she wants. Learning very early that she likes to get a change of scenery, I started taking her to Panera to get a muffin. This soon became a habit that she latched on to with ease. She likes getting out of the house. She likes the muffin, and the bonus is the social activity there. She doesn’t like to stay any one place for long whether she is at home or someplace else. If we get to Panera early, we are likely to get back home for a break before lunch. If the weather is agreeable, she will work outside until I let her know that it is lunch time. I established lunch to match my own preferences. We go anywhere between 11:30 and noon, sometimes slightly later. After lunch, she is likely to go back outside. She used to stay out as long as three to four hours. Nowadays, she is not outside longer than an hour and a half to two hours. That often leaves a span of time during which she likes to leave the house again. At first, I took her back to Panera. More recently, I have sometimes taken her to Barnes & Noble. We go to dinner between 5:30 and 6:00 and are usually back home between 6:45 and 7:15. Then comes the most relaxing part of the day for both of us. We go back to our bedroom. She usually gets ready for bed and takes a seat in her chair and works on her iPad. I sit in mine and watch the PBS Newshour that I record every night. Anywhere between 8:00 and 8:45, Kate is ready to get in bed. Sometimes she continues to work on her iPad in bed. Other times, she puts it up and goes to sleep.
My point is that this routine seems to minimize and relieve the boredom she feels if she spends too long at one task. That is especially true because there are so few things she is able to do on her own. I can easily understand. If I could only work on my iPad and go outside to pull leaves off the shrubs, I would be bored as well. It is remarkable to me that she is able to spend so much time on her iPad. It is only possible because we are changing locations throughout the day.
This brings me to comment about travel. At home the schedule takes care of itself. She gets along pretty well. When she is bored, we move to something else. That seems to work very well. When we are traveling to visit family, the routine is different. Often there is no set routine because our time is viewed as an opportunity to simply enjoy time together. The problem for her is that she is unable to fully participate in most of our group activities that involve conversation, games, or things like watching a football game.
This brings me to this afternoon. We didn’t arrive at Kevin’s house this morning until it was getting to be time for lunch. All of us went out for a nice lunch and came back to the house. I was hoping that Kate would take interest in a game Kevin’s family had learned from Kate’s cousin, Tina. She was never able to become engaged and went into the family room to work on her iPad. After playing the game a while, I went in to check on her. Her look conveyed she wanted to move on. I’ve learned to recognize it at home, at Panera, Barnes & Noble or visiting family on holidays. I decided it would be best for us to leave and took her to Panera. She was just fine. Before we were there an hour, she gave me the same look. I asked if she would like to return to the hotel. She did. We’ve been here about forty-five minutes. A few minutes ago, she closed her iPad and is resting on the sofa. She asked me not to let her go to sleep. We will leave soon for Kevin’s and then go to dinner.
I have heard other caregivers talk about the challenges of traveling with their loved ones. We have been very fortunate to travel as long as we have, but now I see that we are approaching the time when that will be a thing of the past. It is hard on her and demands a lot of me to watch out for her. It is also very confusing for her. She still is not sure where we are. Today at Kevin’s, she pulled away for a moment and asked, “Where do they live?” I told her once again that they live in Lubbock. Tonight at their home, she asked, “Who lives in this house?” I told her that Kevin and Rachel live there. As she was getting ready to turn out the light and go to bed, she asked, “Where is this?” I asked if she meant the city. She said yes. I told her again that it is Lubbock, but that she would not have to worry about where she was tomorrow when we were back home.