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.
What will you do with your one wild and precious life? Mary Oliver.
There is a question suggested for hospice staff to consider when they talk with people about hospice services. “Why hospice, why now?” Ask yourself, what makes this moment in time the reason someone might decide on hospice; what about this time is the right time; how might this person’s goals for their life, and death, be served best now?
J. can no longer easily get out of her recliner, and her adult sisters have arrived to help her manage these last days so she can remain in her home. She tells us at our nursing visit: “When they (the two sisters) told me they were coming up to be with me, I thought I had big plans and places to go, and we three needed to have things to do together. But I can’t seem to manage the beach trip, and it is so much effort to get out of the house now.”
Bullies might be sorry some day.
We should never become immune to surprise. Too many things can stop us midstream and make us think about the novelty of our experiences. Every person who has been touched by the loss of someone they love has their own story of what it was like to be the carer of a dying loved one. These are unique stories (though often with common themes) and surprises should be expected.
The other day, through a series of frightening one-lane roads with lorries taking up the entirety of them, I found myself in the pastural beauty of Beatrix Potter land— in the Lake District of North West England. Amid young calves running down hillsides, lambs prancing in the meadow, yes, even rabbits hurrying across the road, a message written on a wall quoted Beatrix: “Enjoy the little things in life, for one day you will look back and find they were the big things”.
watching the moon cover the sun, until only a bright ring of light was left in the sky, and stars twinkled in the middle of a misty day along the coast. There was a cheer that could be heard throughout the town, as we awestruck observers shared a moment of utter beauty. For some of us, it was a chance to see something that came and went just this once in our lifetime. Check this off our bucket list!
