By: the American Brain Tumor Association
Caring for a loved one who has a brain tumor can be an overwhelming experience. In addition to medical terms to learn, schedules to manage and medications to dispense, there is the stress of dealing with an uncertain prognosis and a future that is forever altered. From the physical and emotional drain to the dramatic changes that can occur within the caregiver/patient relationship, embarking on the caregiving path can be a journey in and of itself.
And those changes affect the entire family as traditional roles shift—often in unexpected, stressful ways. When a loved one is diagnosed with a brain tumor, the family typically re-organizes to accommodate the needs of the patient.
“Suddenly, there’s a role reversal,” says Jean Arzbaecher, RN, MS, a neurooncology clinical nurse specialist who coordinates a support group for caregivers and people dealing with brain tumors. “Perhaps you were the breadwinner or the person who handled all the household chores. You often end up having to reverse that.”
Melanie, a member of Ms. Arzbaecher’s support group, experienced this role reversal first-hand when her husband, then age 29, was diagnosed with brain cancer. Up until that point, he’d been the family’s primary income earner; Melanie had recently resigned from her job to care for their one-year-old son full-time. Suddenly, she found herself caring for both her son and her husband.
Five years later, her husband is doing well, but household roles have been permanently altered. “There are a lot of things I have to take care of that I don’t necessarily want to do, but I have to do, because if I don’t it won’t get done,” Melanie says. “So I’m in charge of all the bills. I’m in charge of making sure that the kids are where they’re supposed to be and that if he’s supposed to do it, I call him and remind him.”
Hearing stories like Melanie’s and those of so many other caregivers prompted the ABTA to provide a dedicated support tool for caregivers. MyCaringLink, powered by Lotsa Helping Hands, allows caregivers to streamline support, organizing rides to treatment, meals, childcare and more.
The ABTA understands the challenges and changes that come with caregiving, and are here to help. For more information or to speak with one of our Care Consultants, call our CareLine at 800-886-ABTA (2282).