The world of caregiving can be a confusing, exhausting and isolated place. A caregiver may feel as Hamlet did, afflicted by the slings and arrows of outrageous fortune and tossed on a sea of troubles. Some may even reach the point that Hamlet did and wonder whether it might be preferable to take arms against the sea of troubles and end it all, rather than to face the daily challenges and heartaches of caring for a seriously ill or dying loved one.
To my mind, caregiving needn’t be a choice between powerless suffering and escape. There is a middle ground where we can suffer through the inevitable tragedy, and yet fight against all the factors that make it worse. There are resources available to ameliorate the suffering of both the sufferer and caregiver. My aim in writing this blog is to point caregivers towards these resources, to take arms against ignorance and indifference and unnecessary suffering.
In her New York Times blog entry entitled The New Old Age, Caring and Coping, at http://newoldage.blogs.nytimes.com/, Jane Gross writes:
“Rarely does anyone tell us about hands-on care, about tube feedings, transferring bed-bound patients to wheelchairs or commodes, turning them to avoid bedsores, making judgments about which symptoms require immediate medical attention, and interacting with a cast of professionals often short on time, patience or shared information about the patient…What does it mean to be responsible for a sick, frail or demented loved one when you have no idea how to take care of them properly and nobody assigned to guide you, when you have no telephone assistance or home visits?”
One group of physicians in the Department of Neurosurgery at the University of California San Francisco is committed to addressing this isolation. They have set up The Caregiver’s Project in collaboration with UCSF’s Osher Center for Integrative Medicine and produced a TV special documenting the experiences of four caregivers and their physicians.
The video, The Caregiver, can be viewed at www.osher.ucsf.edu/caregivers/. I watched it several times and was moved by the stories of these courageous individuals taking care of family members while dealing with medical professionals. The producers don’t settle for sentimentality or taking sides. We see the good intentions, overwork, and struggle to communicate on the part of both the caregivers and the physicians. We see especially that the daily workload and stress of the caregivers is often completely off the radar of most medical professionals. It makes sense. Doctors are absorbed in their own world. But the film also offers glimpses into how mutual respect and productive communication can be achieved between caregivers and medical providers.
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