Caregiver Guilt Trip

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I subscribe to several caregiving blogs and as a result I have the opportunity to read a number of caregiving articles daily.

 

Last week a blog post entitled “Preventing compassion fatigue is up to you” scrolled across my facebook page.  You can read the post here.

 

Compassion fatigue is the idea that caregivers, both paid and unpaid, gradually become desensitized to the suffering of others over time.  Compassion fatigue was first noted in nurses who were becoming immune to the suffering of their patients.  The author of the blog post suggests compassion fatigue is a form of burnout despite the fact that most caregiving ethicists and researchers separate compassion fatigue and burnout as two distinct concepts.  I found that the author’s blog post unhelpfully conflated the ideas, but I digress.

 

 

The post is full of “helpful” suggestions to combat compassion fatigue. I should probably admit my own personal bias at the outset.  If find such checklists annoying, simplistic, and often condescending.  The notion that we can take a highly complex and demanding situation and “fix-it” with a checklist is frustrating, even patronizing. Extreme caregiving, is, well, extreme and the strategies to effectively deal with the ensuing compassion fatigue and burnout will likely be equally complex, holistic, and nuanced.

 

One key problem is that for extreme caregivers such soundbite strategies can border on impossible.  Like, get out for a walk.  Great idea. Most extreme caregivers would love to get out for a walk, or coffee date, or what-have-you. But many extreme caregivers would need to hire a nurse to do so and most families don’t have that kind of spare cash sitting around.  And then there is the suggestion that you talk through your feelings with a friend, but don’t tell them too much lest you burn your friend out.  HUH????  Nothing like perpetuating the feeling among caregivers that everyone else’s needs override theirs.  And then the author suggests asking for help. Does the author have any idea how often the request for help by extreme caregivers is answered with an explicit, or implicit, “no”.  People are often willing to help once or twice – drop off a meal, or a prayer shawl, or walk the dog –  but few outside of paid professional are willing, or able, to offer the necessary support required by extreme, and chronic, caregiving situations.  Caregivers are often badly isolated.  Who does the author think the caregiver should ask?   As the author insinuates, even very good friends struggle to sustain the supportive companionship an extreme caregiver may need for prolonged stretches of their journey.

 

In short, I found the offered suggestions both simplistic and naive.  In short, they are easy, unlikely answers to a highly complex problem.

 

Among extreme caregivers preventing burnout  or compassion fatigue is often not as simple as taking a walk or talking it out.  Yes, these might help, but the real answer is much more complex.  Extreme caregivers, I would suggest, need the sort of help embodied in the African proverb, “it takes a village to raise a child”.  Extreme caregivers need not only the people in their immediate community, but the entire society, to commit to walk the journey with them for however long they are required to walk.  Extreme caregivers need support to show up day after day.  Possibly indefinitely.   And, for the newly emerging population of extreme caregivers managing nursing level care 24/7/365 the support they require includes generous, publicly funded nursing and caregiver support – an unpopular suggestion in a time of fiscal restraint.

 

There are some caregiving situations that are, without significant supports, unsustainable despite the fact that our society insists caregivers manage.  Heaping guilt upon an already overwhelmed caregiver by telling them their burnout is their fault is counterproductive.  Many caregivers are already struggling with the unspoken sense of shame associated with the knowledge that they cannot sustain the level of care their love one needs.  In my opinion blog posts like these not only NOT  help, but become a guilt trip.

 

 

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