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Reflections on a Pale Horse – the caregiver dilemma

I find myself recalling the New Testament imagery of death as the rider of the pale horse.  Those thoughts have come recently when I reflect on being a caregiver for a terminal patient. I’ve seen others, my mother in particular, do it for loved ones without really understanding the price they paid.  I never internalized what it actually means to stand as the last guardian of a valued life as the pale horse of death comes ever closer.

With modern medicine dying may be less painful than in ages past but it is much longer. The results of our technology have outpaced our ability to bear the burden of end stage disease in a humane way.  The result is that we have a crisis of care for terminally ill patients.

Before major hospitals and modern medicine the deathbed watch was mostly a family affair.  People lived and died within family units and families were mostly larger so death was no less personal but it was attended to by a group.

Today, with our far flung and smaller families coupled with the treatment protocols of modern medicine, dying is now far more solitary and often surrounded by the tools of medicine and strangers. For those lucky enough to have family able to care for them at the end, the burden on those caregivers is largely unrecognized and unsupported by the community.

My mother is 93 and was diagnosed with lung cancer two years ago.  Her cancer has metastasized to her brain so she is going through radiation treatments now.  She is an inspiration to me but now that I am to be her caregiver the future has a new and very dark undertone. Mom is determined to live to the end of July in order to attend a family reunion and my remarkable wife Rosemary has joined me in welcoming her to our home for her final days.

As I enter this period of responsibility, I find it difficult to think about it clearly. I remember my mother sitting the vigil with her mother.  It was a heroic effort that is legend in our family.  My mother slept in a recliner by her mother’s bed for over a year to protect her from a potentially deadly fall.  Grandmother suffered dementia and was prone to getting out of bed late at night and could easily have fallen.  She was 101 at the time.  My mother judged it to be cruel to forcibly restrain her so she kept watch as the darkness very slowly took my grandmother.  In hindsight, from the perspective of someone assuming the caregiver mantle I am humbled by that example and I fear that I am inadequate as a caregiver.

I dwell on the realities to come of the role reversal of a child becoming the caregiver for a parent.  Providing a bed is one thing, the intimate nature of truly caring for someone who can no longer care for themselves is a very different kettle of fish.  The reality of that future weighs on me but it is something that I cannot turn away from. 

I visited some facilities caring for people in their last days and while I understand that they cannot afford to provide the care one would wish for it isn’t a future that I would want as the final days for anyone.  A local facility was recently closed after two years of warnings about failed patient care.  Bed sores and patients lying in their own waste for hours were just a couple of the problems.

There are facilities that deliver good care but the cost is horrific. If you have a lot of money you can have good care but that isn’t reality for most.  My goal is to be able to care for my mother until the end but should I not be capable I really don’t know what we will do.  My family made an unfortunate strategic choice by not being wealthy. That is a circumstance I don’t recommend for anyone who needs long term medical care.  

There are currently 44 million unpaid eldercare providers in the United States according to the U.S. Census Bureau.  And yet there are very few support programs, formal or informal, in place to support these family caregivers, many of whom are struggling at work and at home.  We may be on the cusp of a real national dialogue about the need for affordable childcare and paid parental leave but Elder caregivers are all but absent from the conversation.  I find this to be amazingly short sighted given that absent some catastrophe we all will find ourselves at the tender mercies of someone else as we await the pale horse.  I don’t have a goal for these musings other than to perhaps soothe myself and to offer to other caregivers, who so frequently suffer unseen by society, that some of us are at least trying to understand.