Home Stretch
Paul and Marcy at sunset on the shores of Lake Michigan
I had plans for a witty post but I struggle to reach that mental space as I write this. We are in the home stretch in all senses of the phrase. Home to a Christian means something else, and our beloved priest-to-be, Paul, is approaching this home.
This disease can at times be unpredictable, but the end phase comes with the same hallmarks for almost everyone. 3 weeks - 3 months is the average lifespan once these types of symptoms start, and given how rapidly things have progressed lately we are likely on the shorter end of that window. Thankfully, Paul was approved for 100% disability through the VA so we are connecting with his new, VA primary care doctor tomorrow to enter into the VA health system. We’d been waiting on this for over a year so it is not a moment too soon!
As I’ve been lovingly reminded recently, Hospice care is as much for the caregiver as it is for the patient and we will be connecting with a team as early as this week to get that process rolling. Our home is in rough shape right now (middle of a much needed kitchen and bathroom remodel), but we still plan for Paul to be with me at home as long as that makes medical sense. He needs round-the-clock help so the Hospice team will be able to come along side me and assist.
What does this mean for his family and friends? Right now Paul is in good spirits and is enjoying the downtime. We spend as much time together as possible, enjoying each other’s company. He would love to hear from family and friends, near and far. It’s difficult for him to travel right now or to spend time in loud or overly frenetic environments for very long, but a phone call goes a long way to help him still feel connected to the people he loves. For me, the best advice I can give is to put yourself in my shoes. If you were in need and could ask for anything, how would you help yourself? The hard part is that it’s usually time-intensive rather than financial help that people need. My family helps me with laundry, child care, animal care, mowing. All those needs are met. I always struggle to answer the “how can I help” question so see above if you are looking for ways to help us.
As for how I’m doing, I think I had expected to feel only bone-deep grief at this phase, but it’s never been all of one feeling, always multi-faceted. I feel waves of grief, peace, relief, guilt, heart ache, all overlaid with a weariness that’s ever-present. The something-approaching-peace surprises me. I tried very hard for a long time not to think of how I would feel when I reached this moment, but I didn’t expect this. We both fought this disease tooth and nail for the past year so now, when the fighting stops and the acceptance drifts in and out, the stillness is an almost tangible presence. Maybe that’s all your prayers and love sheltering us.