Saluting and Supporting Family Caregivers
November is National Family Caregivers Month, a time to recognize and honor family caregivers across the country. We’re proud to be an official nonprofit partner of the Caregiver Action Network’s month-long campaign. At Children’s Cancer Cause, we use this opportunity to shine a special light on caregivers of children with cancer and childhood cancer survivors.
This year’s Caregivers Month campaign theme is #CaregivingHappens. It means that for family caregivers, taking care of loved ones is a constant reality of daily life. #CaregivingHappens whether it’s convenient or not and can throw a big wrench in even the most well-organized calendar. #CaregivingHappens during meetings when you get notice of new lab results, and #CaregivingHappens after midnight when a fever spikes.
Sometimes when #CaregivingHappens, extra support is needed. If you’re a caregiver and you’re feeling overwhelmed, the Caregiver Action Network has resources to help:
Reach out to the Caregiver Help Desk, which offers free support to family caregivers across the country. It is staffed by caregiving experts Monday through Friday, from 8:00 AM – 7:00 PM Eastern time, and you can reach out by phone, email, or live chat - your preference.
Create a Personal Care Guide specifically designed to help cancer caregivers pinpoint their sources of stress and improve their own well-being.
Find more resources from the Family Caregiver Toolkit.
Whether you’re a caregiver or not, understanding that #CaregivingHappens allows us to give grace, compassion, and a helping hand to those in our lives who are always running late or forgetting to return our phone calls.
Parents are always caregiving but when your child has cancer, caregiving takes on so many new layers.
What many people may not know is that the fear and uncertainty about a child’s health doesn’t end when cancer treatment is over. And the caregiving often doesn’t end when that child becomes an adult. Childhood cancer survivors can face significant long-term late effects as a result of the harsh, toxic treatment that saved their lives. These ‘late effects’ can be severe, chronic, and even life-threatening — such as cardiac problems, which was the subject of our recent externally-led Patient Focused Drug Development meeting. This was an opportunity for survivors and parents to share their experiences with treatment-induced cardiac late effects that can lead to a lifetime of health challenges, describing symptoms ranging from high blood pressure and chronic fatigue to heart failure and more.
At the meeting, neuroblastoma survivor Ruth - who was diagnosed at age five and is now 20 - discussed the life-altering impacts of requiring portable oxygen and a wheelchair as a young adult. She credits part of her success in managing her multiple serious health conditions to having a strong support system, including her mom Charlene.
In the meeting excerpt below, you’ll hear Charlene’s perspective: “The function of her heart and lung affects her outlook on the future, like marriage, having a child, living on her own as an adult, and supporting herself. … Parents always hold a very heavy burden on whether they made the best decisions on treatment, especially when serious life-long effects are being experienced, like heart issues.”
To all the Charlenes out there, we see you and we salute you.
“Family caregivers are the backbone of our Nation’s long-term care system, doing essential work with devotion, often at great emotional and financial cost. We owe them. It is time to bring their service out of the shadows and celebrate and support them in living their own happy, healthy, and fulfilling lives.”