By Shawn Kennedy, AJN interim editor-in-chief

Recently, as part of an ongoing collaborative initiative on supporting family caregivers with AARP (see the comprehensive, and free, AJN supplement called State of the Science: Professional Partners Supporting Family Caregivers), I listened to a group of family caregivers talk about what it’s like to care for sick parents and relatives at home. 

Most of the caregivers were in their 60s and retired, and now found themselves doing the back-breaking work of being on call 24/7, attending to everything from bathing and feeding to chauffeuring to health care appointments, paying the bills, and running the household—sometimes two households, if they lived apart from the person for whom they provided care.

It was amazing and disheartening to listen to them—amazing in terms of the lengths they went to make sure they were doing the right things, and disheartening because they were mostly on their own, with little support from the health care system. And this was right from the start; all said that information to prepare for the transition from hospital to home had been lacking. For the most part, families looked to the family physician to answer questions about what they would need to do at home—nurses were hardly mentioned.

What They Said

  • All said they could have used better preparation before discharge; all agreed that there was little time to ask questions and that health care was “less about quality, and more about the numbers—they rush you in and out.”
  • Being able to practice care procedures like changing a dressing or giving an injection was a big wish: “I would have liked to watch them do it, and then have had them watch me do it to make sure I was doing it right.”
  • They would have liked information on nutrition and alternatives to medication—many were concerned that their loved ones were on too many medications.
  • They all complained about battles with insurance companies to get the care that was prescribed but sometimes denied.
  • Caregivers also said that, with so many different people coming and going, they couldn’t differentiate among health care providers. One said, “It could have been the janitor with a clipboard discharging my mother, for all I knew.”
  • Many said that they researched everything on their own, using textbooks and the Internet to find out what they needed to know.
  • Another frequent subject was the stress and burden of assuming care responsibilities, and the need to “get away for a break.”

I left there feeling depressed—at how badly our health care system fails the majority of people it’s supposed to help . . . and at how invisible nurses were to these caregivers while their loved ones were in the hospital.

What they said they needed most to ready them for caregiving was what nurses used to do to prepare patients for discharge: teaching patients and family members about dressing changes, medications and diet, etc.; helping them arrange for follow-up like home health care; and making sure they had prescriptions and knew when to make a follow-up appointment (or, sometimes, just making the appointment and sending caregivers home with a day or two of medications).

How did we lose these things? How did it come to be that these discharge preparation activities became dispensable? What next might we give away because there’s no time? Is there a “line in the sand” that we won’t cross?

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