In Pew Research survey results, 39% of us (US adults) are caregivers. Yet, as I participated in MedX, I didn’t encounter too many of us. There was one great ePatient Scholar, Erin Keeley Moore (Blog) advocating for her son. It’s not to say that others that I didn’t speak to weren’t also caregivers, but their voice is continuing to be unheard in discussions like MedX.
Do I believe that MedX is a great conference? Yes! I had amazing conversation and interactions – I learned a tremendous amount – I think other participants resonated with my topic – “Being Alexis’ voice” (obviously there was a longer title: Engaged, equipped, enabled, and empowered by LOVE
But we have to endeavor to get more voices into the national conversation. As I was waking up after the conference this morning, it dawned on a me a useful analogy for caregiving.
Caregiving can be like being a short order cook or like being a caterer. It depends on which type of cook you are as to whether you can take time to be part of the national conversation.
Both types of cooks may serve 500 people in a 2 week period. A short order cook is making meals for 30-40 people each day with no set menu and no clear control over the interactions with people from many walks of life.
A caterer may be preparing a meal for 500 people, but with a set menu, time to anticipate and prepare for the event where it’s usually known the kind of people who will be at the event.
(Keep in mind, I’m not a cook or a caterer in real life – but this analogy seemed to work from what I’ve seen)
At this moment in Alexis’ care, we are in the catering scenario – which means we can plan our hospital time – plan our doctor appointments, plan our additions of new doctors, plan our surgeries).
It didn’t start like that, during the first year of life, we were short order cooks – dealing with multiple unexpected in-patient hospital stays, new diagnoses, new urgent appointments, new doctors added at the list moment. And even during her short 7 years, we’ve been thrown back into periods of ‘short order cook’ (either by Alexis or her sister).
I’ll estimate that people who choose short order cook or caterer, have qualities that make them suited for one or the other – which may help them decide.
As caregivers, we don’t decide. And I would argue that we aren’t equipped for handling the role as short-order cook or caterer. So we must endeavor in the future, to appreciate the challenges of the caregiver role. There are too many of us to overlook, and as the population ages, it will be every so much more important.
In future conferences, we must consider how to be flexible for the voice of the caregiver to be present. It’s really not possible to have caregiver voice without extreme amount of planning flexibility – caregivers are already juggling: caregiving, jobs, pressures on fellow caregivers (if they exist) and emotional stress.
Using technology, like University of Minnesota Amplatz Children’s Hospital created for their pediatric rooms – allows caregivers to participate remotely and we should be open to having their participation in a virtual presence in conferences – so we see beyond the voices that are in ‘catering-caregiver’ mode – giving us all an opportunity to learn from ‘short-order-cook’-caregiver mode.
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