I have returned to Mark and Blair’s after my trip home to relax, refresh and recharge. I flew back on August 2nd. I believe taking care of yourself is an important aspect of caregiving. So I am reminded of what I did when Mark was little to take care of myself. Awhile after Mark was diagnosed I started investigating sources for volunteers and babysitters so that I could have some time away to run errands, get a haircut or have lunch with a friend while Henry was at work. It also allowed Henry and me to get out for “date night”. At the time, Hospice had a volunteer program for children who were critically ill, not necessarily terminal. They would come and spend time, play, help with homework and so forth. Pauline, Janis and Mary Ellen came into our lives as volunteers, giving us such a lift with their presence and attention to Mark and later, his brother, Carl. Pauline is now deceased but Janis and Mary Ellen remain dear friends to this day.
It took effort to find trusted babysitters other than the volunteers. I reached out to the young marrieds group at our church as one source. They had to be instructed in how to do the postural drainage and clapping (“thumpies”) if Henry and I were going out for the evening. Also, how to give Mark his enzymes and maybe some oral medicines. So I would have them over before the babysitting time for instruction. I guess it took a leap of faith to leave him but we were comfortable with all those who volunteered.
During his school years the district provided teachers who would come to the house several times a week if he was out for more than two weeks. I often had people ask why I didn’t consider home schooling him. I thought the socialization at school was important for him. Besides that, I was already “in his face” when it was time for clapping/pounding on him, sitting with aerosolized meds, taking pills and swallowing his enzymes! Attending school when possible gave him some semblance of independence.

While caregiving after transplant Henry and I had to initially keep very close tabs on everything and do lots of reminding. It was discussed beforehnd that there is often a real “mental fog” after such long surgeries as lung transplant. We found this to be true even after Mark came home from the hospital. Mark even noticed it in himself. At first we did a lot of “hovering” because it was necessary. But as time has passed Mark has been able to take on all the responsibilities of caring for himself post transplant. And there are a multitude! I think I will have him cover that topic.
Thanks for reading! Please feel free to comment or ask questions.

— Connie