According to Carol Levine of the United Hospital Fund, a longtime researcher and caregiver herself, and Susan Reinhard of the AARP Public Policy Institute, few non-caregivers have any real idea of how much care an in-the-trenches family caregiver provides.
In a story by Paula Span on the New Old Age Blog titled “Caregiver, Plus M.D. or R.N.”, Carol Levine is quoted as saying, “The public perception is what you see in ads — people sitting by the bedside, holding hands, making lunch, smiling at one another…It has that glossy look. That’s not the whole story.”
Family caregivers these days give medications that have precise and often complicated schedules. Many give injections and some use feeding tubes and dialysis equipment. Often, they have had little or no training and no reliable resource to answer questions. These duties, once the territory of nurses, are keeping loved ones out of nursing homes longer, but caregivers are stressed more than the general public can imagine.
I recall times during my many years of caring for multiple people when I had to inflict pain or discomfort in order to help my loved ones. I’d be gripped by fear tempered only by the knowledge that if I failed to act, their fate would be worse than if I carried through. Many people have had to learn to provide much more complicated physical care than I was required to provide. And most of them are doing this with little or no training.
Last December, Levine and Reinhard commissioned an online survey of 1,677 people caring for adult relatives or friends. The survey found that that almost half of these caregivers took on “medical/nursing tasks,” such as managing medications and giving sometimes invasive and often painful treatments that used to be the territory of nurses or other medical people. One of the reasons for so many family caregivers providing more advanced care is that the elders are released from the hospital sooner and therefore sicker than they were in the past.
The report states that, “There are more than 42 million unpaid family caregivers in the United States, and of the 46 percent of family caregivers performing medical and nursing tasks, three out of four provided medication management – including administering IVs and injections – for a family member with multiple chronic physical and cognitive conditions. Further, more than a third of these caregivers providing medical and nursing tasks reported doing wound care. Other tasks included operating specialized medical equipment and monitors.”
Since family caregivers will continue to be required to perform these physical tasks, as well as cope with their elders’ stressful and ever changing cognitive issues, the report does suggest some actions. The actions include encouraging health care professionals and providers to reassess the way they interact with caregivers. Rather than downplaying the medical role the family caregiver is required to take over, the professional should ensure that the caregiver is well trained and prepared to perform these challenging tasks. The tasks themselves should be "labeled and identified to reflect the level of care actually needed.” Also, the family caregivers’ needs should be taken into consideration in the development of new models of care.