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.
Love this my friend .
As always, thank you again for sharing you learned wisdom, both as a professional and as a person. Beauty! Shalom, –dave k
Excellent! Thanks for sharing your experiences, on both sides of hospice. I absolutely agree, there is no need to separate each role into a tidy box.
thanks, once again, amy. you have seen families take on challenges they never belied possible. all with the vital support of hospice folks. noreen
As you always do, Amy, this piece is so well written. Every journey at the end of life is different. Every family handles it different. There is no way that things “should’ go a certain way…they just go……