I had a hard time getting to sleep on Friday night partly because the bed in our room was tiny, and partly because I was anticipating what we might see and hear over the weekend. It was kind of like Christmas Eve. Only not.
At breakfast, the first couple we met was W&A. They both looked so shell-shocked that we weren’t sure who was the “patient” and who was the “partner”. We chatted briefly but mostly gave each other space to eat in peace. Some of the Saturday sessions were whole group and some of them were broken up into patient and partner. The patient group headed off to their session “Pharmacy” while the partners participated in a session about “Caring for the Caregiver”. This was an opportunity for us to share our experiences with others who truly understand. Honestly, I thought I was doing pretty well compared to some of the others. Some were crying the ugly cry (the one where your face is red and twisted in pain) while others seemed defensively tough as nails. I inwardly congratulated myself on being so together.
The wheels came off during a later partner session entitled “Insight into a Partner’s Experience.” This turned out to be a woman named Liz who shared her story with us – from her husband’s initial diagnosis through his death. I utilized all of my “I’m not going to cry” strategies from biting the inside of my cheek to counting ceiling tiles. None of them worked. The truth is that I have not allowed myself to cry very much throughout this experience, but you would have to be made of stone to not crack in this situation. The only male partner, who was sitting to my left, was sobbing. I couldn’t look at him. Liz was crying softly as she shared her story. I couldn’t look at her either. When she got to the part in which she described her son standing in the shower in his swim trunks holding his dad up so they could bathe him, I broke. Her children were basically my children’s ages when he was diagnosed. This hit devastatingly close to home.