Supporting cancer caregivers
In her 15 years of leading a cancer caregiver support group, Joyce Aleshire has seen hundreds of women and men share their struggles and successes.
Aleshire knows the challenges, firsthand, as she cared for her husband Jim, who had melanoma, and her mother, who succumbed to breast cancer. “There’s a lot I wish I had known when I was caregiving for them,” she explained.
Wanting to make the “new normal” less stressful for those in similar situations, Aleshire held her first monthly cancer caregiver support group in October 2010, in a small conference room at the former Northside Hospital in Youngstown. She soon added a second monthly group at her parish, St. Mary Parish in Mineral Ridge (Trumbull County), in response to the need. In October 2015, Yellow Brick Place (YBP) asked Aleshire to bring her caregiver group to its nonprofit cancer support center in Cornersburg. YBP, which occupies three suites in the Brandywine Plaza, offers chair yoga, a beauty program, art, nutrition classes, wigs and support groups among its many free services.
“Helping caregivers is my passion. I have met some phenomenal people who’ve become my friends. They leave footprints on your heart,” Aleshire says. She believes the group has thrived for 15 years because “the comfort level is there.”
Being welcoming, caring and non-judgmental are hallmarks of the caregiver support group.
“Support groups give people a safe space to work through anger, fear, sadness and other emotions. Meetings also stress the importance of taking care of yourself. The caregiver and the cancer patient are on a journey together. The patient is going through all the medical aspects while the caregiver is sitting back watching them go through all of this,” Aleshire related.
She knows the terror of being thrust into a caregiving position. “You hear a lot of medical terminology that you don’t understand. It’s hard to accept what you’re hearing [medically]. You feel helpless, and it’s easy to get overwhelmed, burned out.”
In the early days of her support group, explanations from medical professionals were limited, adding to caregivers’ stress. That has changed along with medical advances in technology, screenings, medical trials and better survival rates.
Nonetheless, “when you hear the word ‘cancer,’ that’s all you hear. You don’t hear what stage it’s in, the treatment options. Support groups help people navigate all that,” Aleshire noted.
While some individuals are very open about cancer, others just want to listen. As the facilitator, Aleshire encourages those present to share as much or as little as they want. “There’s a camaraderie that occurs within the group and we learn from each other. Sometimes there’s tears and that’s OK because tears are healing. Our caregivers can’t always show their feelings in front of their loved ones, but you have to get your feelings out as a caregiver,” Aleshire remarked.
Stressing there’s nothing funny about cancer, Aleshire continued, “We want our caregivers to laugh, to know it’s OK to laugh. At some meetings, I challenge the caregivers to come back [to the next meeting] with a funny story about their caregiving journey. They do and it lifts all our spirits.”
Aleshire also encourages attendees to start a journal—for their own benefit, not to show anyone else. “I tell them to put down the date, then look back a week or two later and see how they made it through a day they thought they couldn’t. It gives hope and gets the feelings out of your head,” she said.
Meeting attendance has ranged from three to 20 people, often depending on where individuals are in their caregiving. “Sometimes people have to work up the nerve to come to a meeting. When people walk through that door, the first thing we do is greet them. Everybody’s story is different and we want them to come back.”
In addition to monthly meetings, Aleshire is available via phone for those who are hesitant about coming to a meeting, are unable to attend, or need a listening ear in between meetings. The support group is open to residents of Trumbull, Mahoning and Columbiana counties.
Aleshire also authored three articles on caregiving published in Today’s Caregiver Magazine. Her topics focused on: adjusting to the ‘new normal,’ decision-making challenges of caregiving and moving on when caregiving days end.
An important aspect of navigating caregiving revolves around faith. “Your faith plays a big part in the caregiving experience. I was reluctant to bring up faith in the beginning, until a doctor told me the patients who do the best are the ones who have faith. We’ve had some people be mad at God, and I let them vent. I’ve watched caregivers make peace with themselves and peace with God. I don’t preach faith, but I talk about it. I think people are open to anything that gives them hope,” Aleshire noted.
Stating her own faith has strengthened, Aleshire said, “My faith got me through the loss of my loved ones. Helping caregivers has been very rewarding.”
For more information on the cancer caregiver support group, contact Yellow Brick Place at 234-228-9550.
