History is repeating itself in my family. My mother has Parkinson’s disease, and my father is her caregiver. Forty years ago, my mom was the caregiver for her own mother, who had advanced Parkinson’s disease and dementia.
I didn’t know my grandmother before she became frail and sick, but I knew that her children adored her. They couldn’t bear to place her in a nursing home, so they took six-month turns caring for her in their own homes.
Every day, my mother would bathe my grandmother, dress her, feed her and make sure she took her medications. She had no additional help, and no support from my grandmother’s doctors. It was exhausting for my mother, and I felt her anguish.
That was in the mid-1970s, when being a caregiver wasn’t a defined role. Now it’s so commonplace that researchers study caregiving. They estimate that 43.5 million people in the U.S. provide in-home, long-term care for older adult family members with a chronic illness. There’s even an entire industry of services tailored to aging in place.
But despite the awareness of these roles, and the support services now available, the attention paid to caregivers isn’t much different than when I was a kid. In fact, a report published in March in the Journal of the American Medical Association finds that many physicians overlook caregiver burden.
“Most physicians haven’t been trained to ask patients about it, and it’s a new clinical habit that you have to consciously adopt and work on,” said geriatrician Dr. Anne Fabiny, medical editor of “Caregiver’s Handbook,” a Special Health Report from Harvard Medical School.
The authors of the JAMA study found that caregivers are typically women who spend about 20 to 40 hours a week providing care. They also found that most caregivers feel abandoned and unrecognized by the health care system. Spousal caregivers face greater challenges than caregivers helping a parent for a variety of reasons, one of which is that they tend to be older.
Of these caregivers, 32 percent have a high caregiver burden. There’s no medical classification for “caregiver burden.” But it’s generally known as the toll that caregiving takes on a person. It can manifest in many ways, including physical ailments, mental illness, social isolation and financial problems.
“Caregivers get depressed. Then they neglect their own health or they miss doctor appointments because they can’t extract themselves,” Fabiny said.
The JAMA study cites cases of elderly caregivers who are so distraught that they try to commit suicide just to get out of the situation. The authors of the report and others are urging physicians to help prevent or reduce mounting desperation among caregivers by playing a part in assessing the caregiver’s health during regular clinic visits for the person who is chronically ill.
Physicians can evaluate the caregiver by asking:
1. How are you coping with these responsibilities?
2. How would you describe your quality of life these days?
3. How often do you get out?
4. Do you have your own physician?
The answers can help physicians direct caregivers to services and support systems. These include:
1. Respite for the caregiver, in the form of a home companion or an adult day-care program for the patient.
2. Help with nonmedical services such as housekeeping and cooking.
3. Counseling about caregiver stress and its consequences, from either a therapist or support group.
4. Training so the caregiver learns how to care for her or his loved one without injury, such as learning how to lift the person without suffering back strain.
It’s the type of support that would have eased my mother’s burden when I was a kid. And it’s especially important to me now that my parents are in a spousal-caregiver relationship. I might worry about my father, a prince who never complains, except that the situation is a little different this time.
A free, six-week series of caregiver classes starts Sept. 10 in Erie County. Call Erie County Senior Services at 858-2177 for more information or to register.