Support Can Be Just a Phone Call Away
Radner, comedienne and actress, said that when she was diagnosed with
cancer, she felt as if she’d become a member of a club to which she
didn’t want to belong. When someone is diagnosed with cancer, their
caregivers and family members also join an exclusive club that the
caregivers themselves often overlook. But seeking out other members
of this club can make a great difference in the quality of life for
both the caregiver and the person they are caring for.
Support groups are often thought of as something for the person who actually has the disease. But Karen Hansen, Program Director for Gilda’s Club South Florida, believes support groups are equally important for caregivers. “Cancer happens to the whole family,” Hansen says. “The caregivers themselves need a place to talk to someone else who’s going through the same things that they are, without the person with cancer.”
Gilda’s Club offers a variety of groups and activities so people living with cancer and their families can always find a group to fit their needs. There are groups for people living with cancer based on the type of cancer, groups for families and friends, groups for parents of children with cancer, groups for kids who’ve lost someone to cancer. Professional therapists and psychologists facilitate the groups, but Hansen stresses that the members are in charge. “The groups here, there’s a facilitator in it, but the members run it. The group is about the members.”
Nothing is frowned on within the groups. Hansen says that group members are free to be themselves, to talk about the good and bad things they are feeling. “There are no rules,” Hansen says. “They’re free to express if they don’t like what they hear or disagree with someone.” Dr. Nick Masi, President and CEO of Gilda’s Club South Florida, is one of the founding members of that chapter. Dr. Masi and his wife, both psychologists, helped found the South Florida chapter of Gilda’s Club in 1994.
“We have had some personal cancer experiences ourselves and knew the importance of the social and emotional support and knew it didn’t exist down here in South Florida,” says Masi. “We were looking into something like a Gilda’s Club to bring down here. We got together with a group that we were already involved with and got together with another group, the American Cancer Society wanted to help us, and we made it happen.”
Masi understands firsthand the need for support groups for both patients and caregivers. “I had two daughters with cancer,” Masi says. “My oldest daughter, Jennifer, passed away when she was 14 from neuroplastoma. She had been diagnosed when she was three, so she lived for 11 years. We had been through all kinds of cancer experiences for those 11 years, and during that time, my other daughter was diagnosed with a tumor when she was two years old. She had surgery and chemotherapy and she’s been fine. She’s now in college and doing great.”
Both Hansen and Masi agree that one of the most beneficial aspects of caregiver support groups is that they give caregivers a place to talk about what they’re going through with others in the same situation. “Once they start coming,” Hansen says, “They keep coming back and they feel like they’re not alone anymore.” They have someone to share it with.”
believes that attending caregiver support groups made him a better
caregiver to Jennifer and Rachel. “If you’re a parent of a child
with cancer, or you’re a spouse of a husband or wife with cancer,
there’s a lot of things that you can’t say or do or ways you
can’t behave at home,” he says. “You don’t want to make them
feel bad. You want to show that you’re strong and you’re okay.
But when you go to a group where everybody’s feeling the same
feelings and have the same experiences, you talk about the things you
can’t talk about at home.”
While support groups are helpful, another option is the one-on-one support provided by Cancer Hope Network. Founded in 1981, the New Jersey-based organization matches people dealing with cancer with volunteers who have had a similar cancer experience. Cancer Hope Network has about 325 volunteers, about 10 percent of which are family members of people who have had cancer. The other 90 percent are cancer survivors. All volunteers are over 18 and have been cancer-free at least one year.
Joe Wotowicz, Director of Outreach for Cancer Hope Network, points out several differences between a support group and the one-on-one phone support his organization offers. “When you go into a support group, they have 12 people in the group and maybe none of them would have your particular exact type of cancer,” Wotowicz says. “What we try to do is match them up. If someone has a spouse with breast cancer, we match them up with someone with a spouse with breast cancer. It’s fairly specific.”
Wotowicz points out that often people are reluctant to talk in groups and enjoy the privacy of the phone. “The anonymity of it is actually one of the biggest factors,” he says. “People are very comfortable sharing stuff over the phone, sometimes a lot more so than in a support group. People can talk to people on the phone and crash and burn, they don’t have to worry about seeing someone the next day at the supermarket or at church.”
Another unique aspect of Cancer Hope Network is that instead of waiting for the next support group, callers can get support on demand and talk to someone any time. Also, there are times when people needing support, because perhaps of bad weather or a lack of transportation, cannot get out to a group. Indeed, such a program seems tailor-made for caregivers who cannot always leave the house. Volunteers with Cancer Hope Network undergo a nine-hour training program at the organization’s headquarters in Chester, New Jersey. Wotowicz says the program covers a wide range of topics, including the organization’s policies on what volunteers can and cannot say.
“Our mission is to provide emotional support and encouragement,” Wotowicz says. “We don’t make any types of recommendations, about treatments or physicians or facilities. That’s part of the training impressed upon these folks. They can share their own personal experiences, but they can’t make recommendations. Anyone wanting to use Cancer Hope Network’s service fills out an information sheet about their particular experience, including the type of cancer they’re dealing with, the stage of the disease and treatment, as well as information on gender, age group and family situation. This information is used to find a volunteer who is as close a match as possible. The volunteer will call the person and talk. Calls always go through Cancer Hope Network and people can talk to the same person if they wish.
says that the toll-free phone numbers allow them to help a greater
number of people, and the organization has grown steadily over the
past 20 years. In the first year, the organization helped 14 people.
Last year, they made 1863 matches. While telephone support is most
common, face-to-face meetings are possible.
“There are face-to-face meetings in some cases; it’s really a matter of logistics and what the people want,” says Wotowicz. “The organization was originally founded on the basis of face-to-face meetings but as it grew and became nationwide… actually people prefer not to meet face-to-face. I think part of it is the fact that our lifestyles are so busy; it takes a while to set a meeting because of the logistics of everything. It’s just so much better over the phone. If people want a face to face meeting, and it’s logistically possible, we certainly encourage it, but we get very little demand for it.”
Whatever option caregivers choose, Masi stresses that the most important thing a caregiver can do is to not overlook their own needs. “Do the best you can to keep yourself healthy so you can be of help,” Masi says. He encourages people not to overlook their physical or emotional health when caring for someone else. “We’re trained to be the martyrs as caregivers and we get to the point where we’re not helpful because we haven’t taken care of ourselves. I see that all the time.”
Mary Damiano contributed this article to Today's Caregiver Magazine, caregiver.com and the Caregiver Newsletter. You can subscribe to the magazine or receive their free newsletter by going to caregiver.com and signing up.