Default Caregivers

Paul and I had the stress and worry of her situation with us at all times. We communicated daily, both by telephone and by text messages on our cell phones. Both of us were (are) take-charge people. It was one of the most frustrating things I have ever been through not knowing what was going to happen next and, ultimately, how long it would be before Karen could have transplant surgery. Would she be reactivated? If Paul and I did not stay by her side, who else in her world would be able to go to Arizona and take care of her, even for a short time? If we left Karen, what would others think of us? Would Paul and I be able to live with ourselves if we walked away? Did the people at the Transplant House and, more importantly, the people on the transplant team at Mayo believe Karen had an appropriate caregiver support system in place? Was it up to Paul and me to tell others in Karen’s family and circle of friends that if there weren’t a caregiver in place, there would be no transplant? (In fact, it was up to us to tell family and friends what was going on, and we did a very poor job initially, of doing this.) When Karen got her transplant, would there be volunteers to care for her then? Would she respond like a “best-case scenario” case and be able to live on her own in six to eight weeks, or would she still be in Phoenix three or four months down the line, like some of the people I’d just met at the Transplant House? If she required some live-in nursing assistance would her insurance cover it? Or could her budget manage it? Would Paul and I continue to live apart for the sake of Karen’s progress? Would Paul and I be able to stay together after our own separation? He’d said something in passing during that time that really startled me. “I hope this situation doesn’t drive us apart,” he said. I began to worry about my marriage. My offer to take care of Karen for a couple weeks had changed dramatically.