I had just arrived home from six days at the OMG2013 Cancer Summit for Young Adults in Las Vegas when I received a frantic call from my daughter Jenny.
"Mom, Luka needs to go to the ER for stitches, can you come to stay with the boys?"
Some 45 looong minutes later I had collected Luka's brothers from the neighbors and was preparing them for bed. Kai, the youngest, aged 3, his brow creased with concern, told me what had happened in vivid detail. Luka had landed wrong on the jungle gym, hitting both legs against the metal steps and slicing open his shins. Red blood and white stuff oozed out of the cuts. It was scary.
Noah, aged 7, told me he ran home screaming. As I tucked him in to bed I praised him for being such a good caregiver for Luka, for running to get help. With his big blue eyes dark with lingering concern and fear, he said, "No, MorMor, I wasn't screaming to get help for Luka. I was screaming for someone to come and help me. I needed help."
Out of the mouths of babes.
It was uncanny. Noah's innocent, honest assessment of his own needs while witnessing his brother's suffering echoed the very same cries for help and support that I had heard during the caregiver sessions at the conference in Las Vegas. Parents, lovers, siblings, survivors and friends were "screaming" for help. Their feelings of confusion, hurt, anger, fear and frustration were repeated in each session. No one prepared us for this. Where do WE go for help? Who is there to guide US? Where do we find the emotional, financial and practical resources we need to cope with this life-changing situation? How can we learn to be the best caregiver possible for loved ones who are living with -- and sometimes dying from -- cancer?
Like the attendees in that room, I had asked the same questions 14 years ago when my daughter, Sara, was diagnosed and eventually died from a sarcoma at age 26. I was excited to stand up and tell others like me that their voice was being heard. Their cries for help were already having an effect.
Last year at the OMG Summit, the programming team scheduled one session specifically targeted at caregivers. This year, they offered six sessions. Other youth-focused organizations in the cancer community are following suit; for example, Young Adult Cancer Canada has become aware of the growing need to incorporate caregiver concerns into their conferences and retreats, and they are now doing so. Imerman Angels are actively expanding their one-on-one matches for caregivers as of this year.
New resources for caregivers are also being developed every day, on film, in print and online. Some that have recently come to my attention include:
Valleys, a new webseries produced by Mike Lang and Hands On Films, explores the voice of the caregiver in eye-opening and heartfelt detail.
We're In This Together: A Caregiver's Story by Rob Harris
Cancer in Young Adults -- Through Parent's Eyes and Palliative and end of life care for children and young people -- home, hospice and hospital by Ann Grinyer
Things I'd Wish I'd Known: Cancer Caregivers Speak Out by Deborah Cornwall
Cancer Knowledge Network -- Caregiver's Section
Generation Why (for young adults on The Huffington Post) posts blogs written by and for the caregiver.
For the past 14 years, I have witnessed the AYA (adolescent/young adult) cancer movement growing from a whisper to a loud roar, from despair to active action, becoming a united voice that is changing the face of young adult cancer, medically, emotionally and politically. I am confident that the same can happen for caregivers. We don't have to re-invent the wheel. Like the AYA cancer movement, we can make use of social media, share resources, create and attend conferences and retreats to feel less isolated and develop the knowledge that we need. We can ask our local cancer centers and hospitals for services that address our concerns. Psychosocial oncologists, social workers and nurse navigators can help us, but sometimes we need to ask for that help. In the same way as we advocate for the needs of our loved ones, we need to advocate for our own. It will take time, but if we unite and stick to it, we can make it happen.
That night, my grandson Noah needed extra hugs and reassurances while we waited for Luka to return from the ER. He needed to know that HIS cries for help were being heard and affirmed. As a caregiver, it is okay to feel scared and uncertain when witnessing a loved one's suffering. It is crucial for any caregiver to have someone other than the "patient" to whom they can talk about their concerns, fears and triumphs. I hope that the resources suggested here (along with many others that are already out there) will help you as you stumble along this bumpy road. At the very least, I hope that they make it clear that you are not alone.
This piece was originally published in the Caregivers' Section at Cancer Knowledge Network.