My mother and I held each other’s hands in this way every day of the two weeks between when she entered a hospice house and when she passed away.
The image I’ve chosen here, much like the one I still have in my mind’s eye, continues to both haunts and comfort me. I remember vividly the night she sat up in her hospice house bed and asked me if she was dying to which I replied-hesitantly at first-yes.
As frail as she had become, and as detached from her surroundings as she was at that point in her dying process, she didn’t skip a beat when she said matter-of-factly that it was time to go home then so that she could.
I remember fumbling for a convincing argument to the contrary… and settled on telling her that she had become too weak to be moved. With that, she just looked at me with disappointment and mild disdain.-not liking my answer-and laid back down.
In time to come I intend to write at length about our experience together as she died, but it was this article that I recently found by accident that got me to thinking I should say something on these pages about the topic of Palliative care.
Written by a hospice nurse, the article discusses a few basic issues related to end-of-life care that often don’t get the attention they deserve.
First a definition:
“Palliative care (pronounced pal-lee-uh-tiv) is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family.”
The fundamental message the author is trying to convey is that-with the advances of modern medicine-we seem to be drifting away from the idea that we can care for our seriously ill loved ones at home, and rushing instead to defer that responsibility to strangers in white jackets and scrubs in a sterile building filled with a whole bunch of strangers in white jackets and scrubs.
This is in no way intended to imply that I have anything but the utmost respect for the service they provide; I can’t even begin to imagine a world without places like the Ronald McDonald House, Children’s Hospital, etc. I mean only to point out-maybe this isn’t always a good thing:
For centuries, birthing and dying are the human experience. Is it really only now, with our medical advancement, that we know how to provide ease of suffering in both states of humanness?
The answer is a resounding no.
Having spent the last four years of my mother’s life living with and caring for her, I can assure you that it is a job you are doomed to fail at; unlike doctors,who’s primary responsibility it is to avoid becoming emotionally invested in the patient, it’s the driving force behind everything the caregiving family members do. We know, deep down inside, how the story will end… but it doesn’t stop us from making herculean efforts to prevent it from happening all the same.
What nurse Amy alludes to but doesn’t actually state is that there are many opportunities for the right combination of home-based care that can make all the difference in the world to the patient who will ultimately leave us behind… So long as those caregivers are adequately equipped not only with the physical necessities of providing that care but the tools and skills and knowledge that can help them through their own heartache and doubt as day work to provide that end of life care to their loved one.
I can assure you that, once you have adequately and fully mourned your loss and come to understand that-no matter how hard you try-you were ultimately going to lose your patient, you will come to appreciate just how much your sacrifices made a difference in that person’s life at the end and just how much better a person that sacrifice has made you. It’s been said many times, but I’ll say it again: home care providers are doing God’s work, and is a special place in heaven that awaits them.