Family caregivers often are thrust into their role with little preparation and no guidance. While simply doing the job is important, doing a good job is all-important.
Frances Brisbane, dean of the School of Social Welfare at Stony Brook University, has written a "Code of Ethics for Caregivers" that can help those who are responsible for older loved ones do their enormous task better. She developed the code over several years after talking with caregivers, care receivers and health care professionals. Many of the best responses came from what she calls impromptu focus groups with older adults.
"If I saw 10 older people together, I'd say to them, 'We really need to let young people who are going to care for us know how we feel and the things we want them to do,' " she says.
Brisbane stresses the importance of "compassionate care," or treating the care receiver with dignity and respect. She says always remember that the person you are caring for is not a patient but an important person in your life, whether it is your mother, father, a grandparent, another relative or a friend. And, as her code of ethics states, always operate at the highest level of integrity. "Do it as if there is a spotlight on you," Brisbane says.
As for caring for someone with dementia or Alzheimer's, Brisbane recognizes the magnitude of the undertaking but says the person still must be treated with dignity. "They know when you are being mean," she says. "It's going to get you a little angry, because it's not the mother you knew, it's not the father you knew."
All caregivers, but especially those with loved ones with dementia, must recognize the signs of burnout and ask other family members for assistance. "We often call it compassion fatigue," Brisbane says. "They must call in a sister or brother or aunt or uncle, because if they don't, they may go into elder abuse."
To access "Code of Ethics for Caregivers," go to bit.ly/code-caregivers.
In a related matter, Hofstra University School of Law is holding a free caregiver conference Wednesday, from 6 to 9 p.m. The conference will concentrate on the financial aspects of caregiving, but health-care experts will offer tips on how to make the task more manageable. A light dinner will be served. Reservations are required. Call Moriah Farrell at 631-390-5000, ext. 139.