Those of us who are caring for our parents or other loved ones know how tough it is. The emotional, physical, and financial burdens are sometimes overwhelming. Bathing your father or changing his adult diaper puts both of you in a new, uncomfortable, and difficult world.
But at a Syracuse University long-term care conference I attended last Thursday and Friday, Carol Levine reminded me about the medical expertise caregivers need these days. With patients being discharged quicker than ever to their homes from the hospital or from nursing facilities, adult children and spouses increasingly are being asked to do the work that was once left to highly trained nurses.
Carol, a former family caregiver herself and director of the Families and Health Care Project at the United Hospital Fund in New York, has a long list of these tasks, for which few caregivers are ever prepared. Among them:
Medication management: It is common these days for a senior with many chronic diseases to be taking a dozen different medications. If you’ve been a caregiver, you know the drill–the green pill three times a day, the blue pill twice a day with meals, the other blue pill twice a week….Worse are the sometimes deadly interactions among these drugs. With few doctors keeping track of all these meds, preventing medication disaster is up to family caregivers.
Operating medical equipment: This is work that you’d need a license to do if you were not a family member. Is the oxygen tank full, are drugs flowing freely through IV tubes, are wounds being kept clean and appropriately bandaged, are you giving injections properly? And this is the easy stuff. Some family members must do even more complicated work, such as managing complex ventilator care.
Coordinated care: This may be the toughest task of all.Somebody must make sure that all the doctors and other health professionals are on the same page. With a few exceptions (such as hospice), docs and nurses won’t do it. So it is up to family members who must learn medical jargon and become disease epxerts in their own right. And keep in mind, as hard as it is for adult children to provide this complex medical care, it can be far more challenging for spouses, who may face their own physical and cognitive struggles.
There is almost nowhere for family members to go to get this training. I have found only a handful of such programs around the country. The Schmieding Center in northwest Arkansas is a great model. But they are few and far between.
And even if this training were available, who has time to take classes when they in the midst of a caregiving crisis?
We all want to be cared for at home, but to make it work, family members will need the training to perform increasingly sophisticated medical tasks. And right now, there are far too few people thinking about where their education is going to come from.
In the new health bill, Medicare is planning to pay family practice doctors extra money to organize complicated care for the chronically ill–a role known as a medical home. But as family caregivers know all too well, they are the real medical homes–and probably will be for the forseeable future.