Schedule & Routine
Establishing a regular routine was something I strived for almost immediately upon returning home. Part of it was my personality and a need for structure, the other part was that I knew it would make things easier on all of us. It was not easy or quick, but a process that required attention and patience. First of all, Darren was cathing to empty his bladder every 4 hours. He needed to shift his weight every 15 minutes (he kept a kitchen timer on his lap all the time to remind himself and us; we were so glad to get rid of that thing!). He had to be turned in his bed at night every 2 hours. I guess you could call all of that a routine of sorts, but there was still a lot of time unaccounted for in between.
Switching the bowel program from the evening to the morning as I mentioned in a previous section made a huge difference in the daily schedule. Even though it still took about 2 hours for breakfast, morning stretches, bowel program and shower, once his personal care was complete, the day could be used for other activities.
In addition to going for PT and OT, Darren started using standing frame at home. He occupied his time by watching TV and movies or being with his friends. I know I’ve mentioned the importance of his friends before, but I cannot stress enough how crucial their relationships were to Darren’s daily life and positive outlook. It was important to all of us that not too much time was “wasted” each day. Of course, Darren was sometimes just too exhausted to do much, but as his endurance improved, he wanted to keep busy as well.
As a long time hockey game and true student of the game, Darren got his chance to stay involved in the sport by helping to coach one of the town teams. Driving him to the rink required both emotional and physical strength. First, he had to dress in layers as he got cold very easy and there’s no way to stay warm on the bench! He also had to be warmed up afterwards with a warm car and blankets at home. It was also a challenge to get him in and out of the rink, bench areas and dressing rooms. Hockey rinks may be accessible for guests, but not necessarily for coaches! The emotional strength was needed to be at a hockey rink in a wheelchair and not on skates. That was tough enough for me; I’m actually not sure how Darren felt about it. But this was s sport Darren loved and to be involved in it was a huge boost to his self confidence. It made him feel needed and got him around other people.
While maintaining a schedule was important, it was equally necessary that Darren spent his time in productive and active ways, keeping not only his physical health strong but his emotional well being as well.