Note: Real names (or names at all) weren’t mentioned at the request of those involved.
An elderly Harlem woman in her early 80s takes care of her 40-year-old daughter who has multiple sclerosis. She hasn’t had a restful night in close to a decade. She doesn’t get any help from her family and she never goes on vacation.
Peg, the nurse coordinator who visits three times a week and provides the daughter with an MS injection, noticed that the mother was so overwhelmed she couldn’t administer it herself. Peg also provides wound care for the woman’s bedsore-prone daughter.
The mother told Peg that she felt it was her responsibility to take care of her own daughter and didn’t want outside help despite the emotional and physical toll. Peg eventually got her to seek outside help and even coordinated 24-hour care services for her. She also got help from a local church to help the woman ease her stress.
For the 65 million Americans who provide care for chronically ill, disabled or aged family members or friends, this sort of story isn’t unfamiliar, especially for African-American caregivers. They’re stressed and they need help because they’re suffering from “caregiver burnout.”
According to the Visiting Nurse Service of New York, Black caregivers (41 percent) are more likely than their white (28 percent) and Asian-American counterparts (23 percent) to help others engage in daily activities, like helping someone get out of bed, get dressed, get to and from the toilet and feeding and managing incontinence.
“For caregivers, finding outside help is critical for mental and physical well-being,” said Elizabeth Almanzar-Wright, a registered nurse and nurse care manager with VNSNY CHOICE Health Plans. VNSNY CHOICE is a special plan from the Visiting Nurse Service of New York, a not-for-profit entity. VNSNY CHOICE was created for New York seniors who are eligible for Medicaid and/or Medicare and want to live independently in their own homes in lieu of moving into a nursing home.
“Many of the caregivers I work with face a mix of emotions and often don’t seek help for reasons that range from practical–loved ones might get frustrated when others don’t understand or can’t determine his or her needs–to emotional–they feel the responsibility is theirs to bear and would feel guilty if they ‘neglected’ their loved one by doing something for themselves,” said Almanzar-Wright.
Over half of Black caregivers said they found themselves “sandwiched” between caring for an older person, a younger person under the age of 18 and caring for more than one older person. African-American caregivers are also more likely to live with the recipients they care for and spend, on average, about 20.6 hours per week providing care. Sixty-six percent are employed full- or part-time.
A study of caregivers from the American Psychological Association also showed that enlisting support can make a difference. Caregivers who felt that they were adequately supported had significantly lower levels of stress than those who didn’t.
A VNSNY spokesperson told the AmNews how caregivers could help reduce the stress that occupies much of their existence.
“When you’re ready to ask for assistance, try to silence any negative thoughts about imposing,” said the spokesperson. “Keep in mind that people like to help others, especially those they care about.”
VNSNY also spoke of the evils of never saying “Yes.” “Daily caregiving can be overwhelming and isolating,” said the spokesperson. “If someone offers help, take it. Accepting help doesn’t mean you’ve failed or aren’t showing enough love, and many will find that if they ask for help, family and friends are more than happy to assist family caregivers in coordinating help with daily activities such as meals, rides, and errands.”
The spokesperson also recommended joining a caregiver support group in person or via telephone or joining a respite program that would allow you to take a break and get away without feeling guilty. However, guilt is a hard feeling to get rid of when you’re responsible for another person’s daily life.
The elderly Harlem caregiver is not the only case that Peg is seeing. For the past eight years, she worked with a Harlem woman with MS in her mid-30s who couldn’t speak and had two teenage children. The woman’s 50-year-old mother moved in and now takes care of her and the children along with the father.
The mother is now stressed out, sleep deprived and has never been on vacation or had weekend visits to friends’ houses. Peg spoke to the woman about finding a community at a church that she could use as a support group. Peg also coordinated 24-hour care for the patient for three days a week, which reduced the burden on the caregiver.
Sometimes help isn’t a luxury, it’s a necessity.
For those who want more information about VNSNY and the programs they provide, call (800) 675-0391 or visit www.VNSNY.org. To learn about caregiver resources, visit www.VNSNY.org/caregiver.