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.