Demands Keep Demanding: Caregiving in Modern Times

Biting off more than you can chew is an old idiom alluding to taking on more than you can handle at one time.  I know I have been in this overzealous position, either out of excitement or naiveté, and found myself unsure or overwhelmed with a huge task.  When did I think I would have the time, energy, or patience for this project?  The size of the task was clear but my perception of time and my ability was off the mark.  There are plenty of lessons to be gathered here in humbly learning the edges of my capacity and competency when choosing commitments.  And yet, there are times when a bite seems well considered and right sized but suddenly grows - when, in mid bite, the whole slice of tomato comes along for the ride out of the sandwich; the one burrito bite really needs three in a row as the inner contents shift; when seemingly all of the noodles in the soup keep coming up in a long, everlasting slurp.  What do we do when the bite keeps happening? It’s not the overreach in commitment but the shifting context that asks for something different.

I think about this for caregivers.  Even for the most organized and well resourced person, there are situations in which the demands of care are too much by the simple fact that they keep coming.  The ability to be with a loved one, present, steady, and comforting, is rattled by the realities and intensities of care.  A commitment to offering your time, money, physical support, financial help, or emotional care might be well defined.  For a moment.  Suddenly, though, that commitment can spread and creep into unexpected territory.  My loved one’s condition is deteriorating unexpectedly.  The treatment regimen has a host of side effects that are in full bloom, shifting care needs.  The physical toll of care has been planned for, but the emotional toll is much different than one could have imagined.  What previously felt manageable now has pieces that slide out of the boundary of what care looked like before. Backing out does not feel like an option just because the needs are new or growing, quite the opposite.  No one knows what my father needs like I do, who else could care for him?  Of course we will get my wife to whatever the new treatment requires: infusions every week, ten more pills to organize and administer, new dietary restrictions…we will just figure it out.  But, I’m exhausted, will we ever get a break?

This applies to professional caregivers, too.  I have felt myself drawn into patients' lives in ways that have felt purposeful and clear.  We swapped recipes and favorite books, shared vacation photos and anecdotes, performed tricks and made treats. The spread into human connection was part of the calculated bite I was taking.  In some ways, it helped to have the clinical setting, it had its own border and boundary when and where caregiving occurred.  My work shift was finite and I got to go home at the end of it.  The humanity and warmth that was given permission to permeate the space of care added to my capacity to be in that space of professional caring.  However, the demands and tasks of care grew increasingly complex, technical, and bureaucratic.  Healthcare is a business and professional care providers are often asked to divorce their own humanity from care to prioritize efficiency, speed, and volume.  The number of requirements for care kept coming.  Sometimes I was reassured that some new change would add to quality of care, with little impact on my practice.  A protocol would only add one minute to my care routine per patient or just one more double-check in a multi-step process would increase safety.  One more hour the clinic could stay open would be a help to patients or taking one more patient in the day meant more patient needs were met.  Meanwhile, I’d spend shifts wishing for roller skates to get between patient care tasks that already existed, hoping to finish just more more thing: hang one more antibiotic, grab one more set of vitals, get one dressing change over with - then I will go to the bathroom, or sit to eat, or have water.  Invariably, one agenda item would swell into three and that bio break was pushed further and further into the future. How can I get everything done for my patients and take basic care of myself at the same time?

As medical care grows in complexity and as frequent intervention is normalized, both family and professional caregivers are put in a bind.  I want to be in service, but the terms of service become unwieldy quickly. There is an idea that these systems of care work, so when a caregiver feels like they are underperforming or can’t handle the demands that just keep coming, this is seen as personal failure.  I think of the ‘I Love Lucy’ bit where Lucy and Ethel are at a chocolate factory and tasked with wrapping chocolates off a conveyor belt. For the two of them this is easy, at first. But the belt speeds up and the number of chocolates increases, and while they take creative steps to handle the situation, the demand continues to grow.  They can do the work, one bite at a time, but if the demands keep coming, what defines one bite expands beyond a mouthful.  Capacity is exceeded and the whole thing crashes out.

I like this Lucy bit, it’s so relatable.  The message is clear in the visual, despite their willingness and abilities, the demand is unsustainable.  To me, there is something deeply sad here as it relates to caregiving.  Try as I might, I won’t be able to do it all.  It’s not just that my best effort won’t complete the tasks at hand that makes me sad.  I feel sad that the person, whose well being I care for, has been reduced to tasks.  And I am, therefore, reduced to task completer.  Somewhere along the way, we both lost our humanity in the process.  This is where burnout and resentment seed.

On the flip side, this also brings me a sense of relief.  That I can see that the demands aren’t my personal failure but a disease of the systems of care.  This puts me in touch with what I really need then as a caregiver.  I need help and collaboration.  No one is meant to run a 24-hour care facility on their own.  Hospital staff get to work in shifts, family caregivers often do not.  Systems of care need to change to match resources to enable care at the pace of human capacity not technological innovation.

I wish I had a quippy way to wrap this up or some elegant system design that could be a salve for this problem.  But that’s just it.  This problem for caregivers is big, bigger than any one family or hospital unit.  What I can encourage you, and me, to do when it feels like the demands just keep coming is to let others know about your experience.  Share the meal of your experience with friends, leaders, family, neighbors, and your therapist.  Give your experience to others so that they might show up for you.  And, let people show up for you, not because you can’t handle it, but because no one person can.    

Kerynne O'Malley, RN, AMFT is a former oncology RN and a dedicated therapist passionate about helping those dealing with a serious illness. You can read more about her here and reach her at Kerynne@biglifechangetherapy.com.