October 1st, 2014
Suzanne Mintz’s memorable Narrative Matters essay in the September issue of Health Affairs calls for attention to and support for family caregivers, and puts many important policy and practice improvements on the policy table. But the piece stops just a step short of giving voice to the fury that is needed to mobilize change. Why are family caregivers so polite? We ask for the bare essentials and say “please.” We beg for mere recognition and some honesty about the situation. Why are we so polite?
Are we waiting for hospitals, specialty physicians, health systems, pharmaceutical manufacturers, and others who are deeply invested in current patterns of care, thinking they might wake up one morning and start advocating against short-term self-interest? Or set out to learn about supportive services and family caregivers?
Of course, everyone loves family caregivers. Virtually anyone over the age of 50 can share tear-inducing stories of someone’s devotion to a frail elderly parent or a long-term disabled friend or relative. But we, the public, respond to the despair and frustration of family caregivers with the same shrug we give to young mothers whose lives are suddenly governed by feedings and changings. Our response to family caregivers has to change. The challenges are so great, and the level of support so deficient, for so many family caregivers.Read the rest of this entry »