September 30, 2015. By Joanne Lynn
Marcy Houle’s father was once abruptly discharged from a hospital to a nursing home that lost him! He went without water for so long that he developed renal failure. Those are just a couple of the calamities that Marcy encountered in caring for her parents, as described in her book, The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare. Co-author and geriatrician Dr. Elizabeth Eckstrom spells out how family caregivers might limit the harms. What’s missing? Effective anger! What happened is intolerable. But we need useful strategies that mobilize political force to insist upon change!
The problems in the care of the elderly are not “errors” in the usual sense of mistakes. In fact, they are baked right into our current delivery system. It was not simply that a nurse or aide slipped up on some critical step. Instead, all the nurses and aides and everyone else are working in a system that is so dysfunctional that actions that cause pain or neglect are not even called out as errors. Consider the profound error of simply not knowing what matters most to patients and their loved ones. Consider that patients have to use the emergency room, because that’s all we offer when things go badly, not on-call physicians or substitute caregivers who can deal with problems at home. Consider that we don’t have home-delivered meals for many elderly persons in need in most of the country; the wait lists often take more than 6 months, because we have not chosen to fund the Older Americans Act adequately. This is unacceptable! How can we complain effectively? Each family somehow believes that its situation is just bad luck or “how things are.” People have no benchmark by which to set expectations, so they accept the errors, suffering, and impoverishment that so often come with disabilities in old age.
Let’s change that. Let’s start raising the issues everywhere that we can: in the newspapers, in the candidate debates, when your Congressional representatives are in town, and in social media. Let’s build some highly reliable, person-centered elder care systems in our communities and see what it really costs. Let’s figure out how family caregivers can become politically powerful.
We’ve started an initiative to get family caregiver issues on the party platforms in all the states that generate party platforms. You can join the Family Caregiver Platform Project effort. It takes very little time and gets leaders talking. Go to http://caregivercorps.org to sign up. Tell them your stories, and fire up the anger. What else can you think of? We need other leverage points that would focus the pent-up frustration of millions of family members who have already witnessed the misery of ordinary elder care. That is a story that we can all absorb and tell others, and then we can go out and insist that our care system change. If we are lucky, we will all grow old. So it’s our future, too, not just our parents’!