Care for the caregiver: Taking time for yourself
Barbara Arpante knows the true meaning of being there for someone in sickness and in health.
"I took care of my 93-year-old mother before her passing in August 2014 and her sister, who passed one month later at 103," said Arpante, who lives in Pittsfield, Mass.
To support herself in the caregiving role, she earned a certified nursing assistant license from the Red Cross in 2011, and enlisted the help of a hospice agency to make sure her loved ones could be comforted and cared for at home.
"Helping my mother to her passing was an extraordinary experience for sure," she said. "There are many facets to it. Her passing was with so much grace and wisdom. I have no regrets."
She noted, however, that taking on the role known as "caregiving" — taking responsibility for someone who is chronically or terminally ill; someone who is limited, mentally or physically, for the long-term or short-term; caring for someone who, for whatever reason, does not have the capacity to take care of themselves — can be a demanding, time-consuming position, even more so when the caregiver is employed elsewhere.
So, how do you manage yourself while caring in an intensive capacity for someone else?
First, if you're finding yourself in this role, know that you are not alone.
"If you actually sat down to talk about it with a group of people, you'd be really surprised at how many are caregivers, and in many different aspects," said Melissa Stemp, the family support worker for Bennington Project Independence Adult Day Service in Vermont.
Numerous bodies of work were done in the early 2000s on the subject of caregiving and its impact on public health and the economy, as highlighted in a report called, "Caregiver Health: A Population at Risk," published by the Family Caregiver Alliance National Center on Caregiving.
In addition to millions of registered and licensed nurses and physicians in the United States, there are an estimated 44 million Americans, age 18 and older, providing unpaid assistance and support to older people and adults with disabilities. The value of this unpaid labor force is estimated to be at least $306 billion annually, nearly double the combined costs of home health care ($43 billion) and nursing home care ($115 billion).
And it should not be forgotten that these statistics exclude adults whose traditional parenting roles of caring for younger people are compounded by the complexities of caring for kids facing issues, like cancer, cerebral palsy, autism spectrum disorders or other intensive needs.
According to the report, evidence also shows that "most caregivers are ill-prepared for their role and provide care with little or no support," with more than a third of caregivers continuing to provide intense care to others while suffering from poor health themselves.
"It can be emotionally and physically exhausting to be a caregiver," said June Green, a licensed independent clinical social worker of 35 years, who currently serves at the Family Support Services supervisor for HospiceCare in The Berkshire Inc.
"When you're alone in taking care of someone 24/7 it can be pretty scary, and often a caregiver ends up in hospital, exhausted themselves," she said.
That's why experts in the health and human services fields regularly advocate for caregivers to make the time and put in the effort to take good care of themselves, so that they're in the best shape for caring for others. The agencies they work for can also provide to caregivers a great amount of support and resources, from respite care to medical and home care equipment, to in-person and online support groups and counseling. Many such resources are available free or at subsidized costs.
"Caregivers need some place where they can come and speak openly, and come and speak with other caregivers," said Stemp.
She facilitates "Families Together," a free, public, confidential caregiver support group, at Bennington Project Independence. Participants, Stemp said, have ranged from a man in his 30s caring for his grandmother and teenage cousin to spouses over the age of 60 caring for their husbands or wives.
"Maybe not all their situations are the same, but there's often something similar that they may be going through or have in common," Stemp said. "It's a non-judgmental kind of group. Here they can cry and it's going to be OK."
She and other experts said it's normal to feel angry, stressed out or frustrated, but note that it can get worse if a caregiver ignores his or her needs, and strays too far away from the things that make them feel safe, comforted and happy.
"Pride is a big thing," said Stemp. "For many people, asking for help is huge. Saying I can't do it on my own is difficult."
But she and Green said that caregivers need to look at the big picture of providing a good quality of life for both themselves and the person or persons they're looking out for, which is why seeking support is so encouraged.
"We're available 24 hours a day, 7 days a week, so if you can't sleep and have a question about care at 2 a.m., call us. We're here to alleviate any anxiety," Green said.
At Frog Lotus Yoga studio in North Adams, Mass., studio owner Jennifer Yarro, with instructors Lisa Bassi and Devin Kibbe, have offered special classes for caregivers in the community. Both women offered free classes to nurses and other staff who suddenly lost their jobs in the emotional 2014 closing of North Adams Regional Hospital.
"Yoga helps give time and space for processing, something that I think is very important in life-changing events and when circumstances are out of one's control," said Kibbe.
Inspired by her students' lives, Bassi created a "Yoga for Caregivers" workshop, now offered on a near-monthly basis at the studio. Bassi, herself, had been a caregiver for her late husband while he battled cancer and other family members facing severe illnesses.
She said among the people who have attended her workshops, "Some are new to caregiving and a bit overwhelmed. Some are long-time caregivers trying to stay the course."
Kibbe said it's not uncommon to find stress tension in the hips and shoulders of caregivers, some who literally carry the weight of others.
Asked what she observes of the caregivers in her classes, Bassi said, "Most of what I see is fatigue, unexpressed grief as they carry on being strong and capable, fear of not being up to the enormous task of helping another human, or many humans, have a good life or a good death and because these students are time-deprived, they often lack the opportunities for self-care and relaxation that could restore body and mind."
Bassi tells caregivers to do the best they can and reminds them to "do what works for you."
"It is OK to schedule something — even if it is one thing — each week that feeds their soul and brings them happiness," she said, whether that's an hour lunch with friends or 10 minutes a day "to sit and breathe or listen to music."
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