In recognition of November as National Family Caregivers Month, we bring you some resources for advocates and tips for caregivers of children with cancer.
The Caregiver Action Network set this year's theme as Caregiving Around the Clock, in recognition that a caregiver's job never ends. The vast majority of family caregivers in this country are taking care of aging parents, but we want to shine a spotlight on parents who are taking care of their critically ill children, including children with cancer.
Parents of children with cancer are all-too-familiar with the stresses of administering their child's medication, juggling work responsibilities, panicked middle-of-the-night ER visits, losing time with other children and family members during lengthy hospital visits, and everything else involved with the 24/7 management of a sick child's care.
In our own research, we found that 87% of parents we surveyed earlier this year reported difficulty maintaining a regular work schedule over the past year due to their child's treatment demands. Nearly half - 46% - reported that one or two family members stopped working to care for their in-treatment child over the past 12 months.
Action Steps for Caregiver Month:
If you're an active parent caregiver: Many parent caregivers report that their own self-care takes a big hit while their child is in treatment, but it's important to remember that your child needs you to be physically, emotionally and mentally healthy in order to be the best caregiver, advocate and (most importantly!) parent that you can be. Here are a few self-care tips for parent caregivers:
- Many children's hospitals offer support groups for parents of children in treatment. Ask what's available! If you're not interested in a support group, consider yoga, an art class, or even just a regular coffee date with a friend.
- Ask for - and accept - help from friends and family. Don't feel guilty about asking someone to stay with your child at the hospital for a day while you escape for a bit of 'me-time.' Remember that taking care of your mental health is another way of taking care of your child.
- Get check-ups yourself -- and tell your doctor(s) about your caregiving role, so they understand some of the unique stresses you're under.
If you're an advocate: President Trump issued a formal proclamation recognizing the month and the devotion of caregivers. The Caregiver Action Network has provided this sample proclamation for states and local governments, and there's still time in the month to reach out to your elected representatives.
Finally, consider sharing your story as a caregiver to a child with cancer. Being a parent to a child with cancer can be such an isolating experience. What's the best piece of advice you have to offer to another parent caring for their child during treatment? Please share below!