I will be happy if I never hear or read of another palliative or hospice-trained person saying something like, “she should just be the wife (or whatever the role is) and let us be the caregivers”. “Should’s” are often not a helpful stance in anyone’s end-of-life journey.
Like others, my first glimpse of hospice care was the team who came to help my mom care for my dad the last 3 months of his life. At the time, I was a newer nurse working in critical care, and lived a couple hours away from my folks. I had watched the dying process many times as we valiantly attempted to stave off death from our critically ill patients. But seeing patients dying in the hospital was a very different experience.
Dad’s diagnosis of two separate cancers, both colon and lung, had initially been treated with a brief run of chemotherapy, then the lung cancer was complicated by brain metastasis, followed by a few radiation treatments that took the stuffing right out of him. I remember when dad said he was done. He wanted to stay out of the hospital, and mom called in hospice.
I came down every week to help care for dad. The hospice crew would come and go, giving mom a much needed break and also help everyone understand what was happening. Though I knew death as the enemy in the hospital world, I had also had opportunities to watch many families provide a loving presence even if they were not the ones providing the physical care. Sometimes, only that presence was the antidote for an anxious and confused patient. I learned to value this—perhaps more than all the technology we could offer in the hospital. Eventually, I sought hospice nursing as a means of providing a different way to approaching caring for the dying.
A decade after dad’s death, as a hospice nurse, I was traveling that 1-5 corridor again, this time to help care for my mother. As both a nurse and a daughter, I learned another way to see the family, the care, and the hospice team. I recognized the value of each person’s experience and also how the different roles we all juggled could add depth to the shared experience. I could understand a daughter caring for her mom at home, because I had experienced that. I could know the trepidation of a nurse who was also the daughter caring for her father while he lay dying, because I had experienced that, too. I knew what it was to feel helpless, both as a daughter and as a nurse. I understood, from my experience, how hard it is to separate these different roles that make up who we are. Nor is it necessary. I believe I can be a daughter, a nurse, an advocate, and a caregiver, without the need to separate these roles into tidily bound boxes.
Families do end of life care in all kinds of ways, from all sorts of perspectives. Though I have participated in many hundreds of other’s journeys, I know I am not an expert in how things should go. I’m not sure “should” is part of the vocabulary. There really is no right way. It is simply a journey that all of us will make. Most of us hope when it is our own that it is upheld with kindness, imbued with dignity and encircled with love.