Caregiving for a loved one can take many forms, but one thing is for certain—it can be exhausting, stressful and draining. Unfortunately, there aren’t many support systems for caregivers to help ease their burdens.
The lack of resources was the motive behind Hope Grows, a nonprofit that offers emotional and mental support and respite for caregivers.
“We were born out of grief,” said Executive Director and founder Lisa Story.
Story retreated to nature as she healed from grief caused by her father’s death of pancreatic cancer in 2005. A licensed counselor working in hospice, she knew better than most the difficult path of caregivers.
“I don’t think the general public understands what caregivers really go through. I had spent my career in hospice seeing families struggle in the process, and I knew that there needed to be more support,” she said.
As Story researched support services, her findings reinforced what she already knew—there needed to be more done for caregivers. “I had a dream about my father walking through a beautiful garden, and upon awakening, said the words, ‘hope grows,’” Story said. Hope Grows was officially established in 2010 and became a nonprofit in 2012.
Now in its 10th year, Hope Grows offers numerous support services for caregivers in three different areas: counseling support, therapeutic respite™, and education and training. Under the counseling arm, Think Caregiver™ is a monthly check-in phone call with weekly self-care emails to caregivers. Story said that this service includes people who live out of state as well as locally.
“We make over 300 calls a month,” she added.
Hope Grows also offers individualized mental health counseling and support programs/groups. “Our intake care specialists work with caregivers to find out their needs so that they can individualize their care plans,” she said.
The educational component includes providing caregivers with resources and tools to assist them in their caregiving and own health care. Joy of Living is a six-week program that assists caregivers in finding more joy in their lives.
Therapeutic respite services include resources, activities and opportunities for short breaks that include yearly drumming sessions, writing, meditation, yoga and nature therapy and programming. A ‘Day of Rest’ and turkey meals provided during the holidays round out respite opportunities. Hope Grows will soon offer overnight stays at Story’s location in Moon where there are seven cultivated healing gardens.
Hope Grows also recently started offering a caregiver mentoring program, Caregiver2Caregiver™. “We train past caregivers to offer peer support to current caregivers that might need more than a monthly call, but not need mental health counseling,” Story said.
Support services are necessary for caregivers but are not always accessed while they are providing care for their loved ones, said Story.
“Caregivers need our support; they are the unsung heroes. They are wonderful in providing care when their loved one needs it, but often experience chronic stress. We want caregivers to know that they don’t have to struggle alone,” she explained.
According to Heidi Donovan, a nursing professor at the University of Pittsburgh, researcher, and facilitator of the Caregivers Support Group through Cancer Bridges, a caregiver can have many definitions, but it generally refers to someone who provides unpaid care in the area of daily activities or medically related tasks for a loved one.
“The caregiver depends a bit on the patient population,” she said. “We ask, ‘Who is the person going through this with you most closely?‘”
Providing support services for caregivers is essential, she explained, and there is a need to address two separate areas.
“First, they are part of the patient’s family, but at the same time, they are part of the health care team. If we don’t provide care, they will burn out from depression and exhaustion,” said Donovan, who also works with the Family Care Center at UPMC Magee-Womens Hospital’s Gynecological Center.
The Caregivers Support Group at Cancer Bridges meets monthly to provide not only educational programming, but the support of others facing the same challenges. “The support that we as professionals supply is important, but the support group is essential. There is nothing like the sharing of worries, concerns, guilt—all of the feelings that these caregivers go through,” Donovan said.
Wendy Myers, co-clinical director at Cancer Bridges, also provides individualized counseling for caregivers. “We provide free short-term supportive counseling for caregivers that helps to provide them with coping tools,” she said.
A crucial tool is helping caregivers learn how to advocate for their loved ones and themselves. “We let our caregivers know that their needs are just as important as the needs of the ones they care for,” Myers said.
Not Forgotten Home & Community Services (NFHCS) is a nonprofit that serves intellectually disabled adults. Respite care for families and caregivers is a vital component of their services, according to Executive Director Sonja Garnett-Williams.
“Discovering that your child is differently abled can be one of life’s most significant stressors for parents; the birth of a child with a disability or chronic illness, or the discovery that a child has a disability, has a profound effect on a family as a whole,” she said.
“The mental load of being the caregiver for a child with special needs can be isolating, as well as physically, emotionally, and mentally draining,” she added. “In order to avoid caregiver burnout, parents must think of respite care as a necessity—not a luxury.”
Respite care allows caregivers to take time for themselves to rest and can take many forms, said Garnett-Williams. This can include short breaks while the individual attends programming and training; having a friend or family member provide assistance; or taking longer breaks with professional care in-home or out-of-home.
NFHCS provides both in-home and out-of-home programming and activities, and training and respite care that includes overnight stays away from home for individuals so that their caregivers can recharge and come back with renewed energy, Garnett-Williams said.
For more information on Cancer Bridges, visit www.cancerbridges.org or call 412-338-1919. To learn about Hope Grows, visit www.hopegrows.net, call 412-368-4673 or email
info@hopegrows.net. Not Forgotten Home & Community Services can be reached at www.nfhcs.org or 412-279-5000