Pediatric Cancer and the Caregiver
National Caregivers Day!
This year February 18th marks National Caregivers Day. Caregivers provide necessary assistance in everything from personal care to medical aid. The global pandemic has undoubtedly shined a light on caregivers worldwide. The truth is that caregivers were frequently overlooked, under-appreciated, underpaid, or not paid at all in the past. However, as the world realizes that the backbone of healing is a dedicated caregiver, we finally see genuine appreciation and support for these tireless and courageous individuals.
We want to celebrate the caregivers, usually moms and dads, who provide unwavering care for their cancer-stricken child. We see you! At Here to Serve, we understand firsthand the long hours, the sacrifices, the pain, and the heartache that come with being a caregiver for a child battling cancer. We also appreciate the desire and joy that comes from helping your child recover and the possibility to live a full life beyond disease.
Pediatric Cancer and the Caregiver
A diagnosis of pediatric cancer significantly impacts patients, their families, and, most importantly, the primary caregivers. With so much emphasis on the cancer patient’s needs, it’s essential not to forget caregivers are also going through the journey. According to research published in the Journal of Pediatric Oncology Nursing, all parents are intensely affected by a child’s cancer diagnosis regardless of their baseline functioning.
For these parents, pediatric cancer can cause significant but temporary distress, after which they usually adapt to a “new normal,” including the reality of the child’s cancer. However, a child’s cancer diagnosis can be significantly overwhelming in other subgroups of parents that may already have life stressors before diagnosis. In these families, the parents’ needs and distress may affect parenting, child well-being, and family functioning across the illness trajectory.
Overall, parents of children with cancer report significantly decreased health-related quality of life due to increased caregiving responsibilities and numerous stressors associated with their child’s illness. These stressors include financial burden, role strain, separations, interruptions in daily routines, poor sleep, and uncertainty regarding the child’s prognosis.
As a pediatric cancer caregiver, how can you prepare yourself for the road ahead? The best way to make the cancer journey load a little lighter physically and emotionally is to pre-plan when you can! Here are five strategies that may help you through those difficult days.
- Understand your rights: Under the Family and Medical Leave Act, most employers are required to provide up to 12 weeks of unpaid, job-protected leave for family members who need time off to care for a loved one. For help with insurance rules and regulations, contact your insurance company. Many insurance companies will assign a case manager to address concerns, clarify benefits and suggest ways to obtain additional health-related services.
- Empower your child: Teach your child to understand their diagnosis and be able to politely tell strangers, “Yes, I have cancer, but I don’t feel like talking about it right now.
- Advocate for your child: Don’t hesitate to ask your care team for ways to make your child’s treatment more comfortable from home. Maybe there’s something simple you can do that you haven’t tried or thought of yet.
- Have a hospital/clinic parking plan: Get directions ahead of time. Find your favorite parking garage and floor. Park there every time you go for appointments or hospital stays. That is one last thing to remember and lessen the stress when you know exactly where to go.
- Plan for comfort and entertainment: Bring something from home to appointments that offer your child comfort. Always carry a phone charger and change of clothes. Keep an overnight bag in your car for your child and yourself. Don’t forget to bring something that will help you, the caregiver, relax.
- Set up a support network: Friends and family want to help, but they may not know how to. This can be done through Here to Serve, a nonprofit that allows those who want to help the needed tools and resources all in one place. There is no need to go to multiple sites like Caringbridge, Meal Train, Go Fund Me, and others and splinter your efforts to so many platforms dealing with so many people causing you added stress. Here to Serve, a nonprofit, does it all! They help identify other charity support you may need but are not aware of. They set up microsites to easily coordinate friends and family to bring meals, pick up kids, get dry cleaning, organize housekeeping, secure financial support, keep friends and family updated, and so much more! So don’t feel shy; ask Here To Serve to set this up for you!
Help for Pediatric Cancer Patient Caregivers
Professional caregivers get more respite and rest time than parents who function as caregivers for their sick children. Parents and families flung into the role of full-time caregivers know there are no long breaks, vacations, or days off. Understandably, you want to exhaust every ounce of energy within you for your child. But, alas, you can’t always be at your best if your tank is empty. So it’s okay and necessary to incorporate self-care while caring for others.
Taking good care of yourself is an integral part of being a caregiver. Self-care can improve your quality of life and help you be better equipped to handle your parenting responsibilities. Here are three essential rules for taking care of yourself as you care for your child.
Rule #1: Take care of yourself. It can be easy to forget about your own needs as a parent and caregiver. Remember that to be there for your child; you need to take care of your own physical and emotional needs. Continue to be aware of your own check-ups, screenings, and medications. Take a few moments for yourself each day to do something enjoyable or relaxing, even if it’s just taking a walk around the block. Find some consistency within your routine, no matter how minor. Give yourself credit for all you do as a parent and/or caregiver, and find ways to reward yourself for your hard work. By caring for yourself, you will also be modeling healthy behavior for your child.
Rule #2: Acknowledge your feelings! When a child is diagnosed with cancer, it is common for parents to experience many emotions, including shock, anger, disbelief, sadness, fear, and guilt. Be honest about your feelings and share your feelings with someone you trust. Find ways to express your feelings through writing, art, or physical activity.
Rule #3: Get individual professional help for yourself sooner than later. Over the last decade, research into caregiver mental health and outcomes has led to a welcomed increase in resources to support caregivers in all aspects of their journey. Utilize these resources as much as you can. Many programs are specific to the type of disease or illness you are caring for and can make a massive difference in your well-being. For example, Here to Serve cares for the caregiver of pediatric cancer patients physically, mentally, emotionally, and financially. Get help from them so you can take some time to care for yourself. They also help you uncover additional caregiver resources. Here are just a few other resources for cancer caregivers:
- The American Cancer Society Caregiver Resource Guide
- National Cancer Institute Support for Caregivers of Cancer Patients
- American Childhood Cancer Organization MomcologyⓇ
- CancerCare Support Groups
At Here to Serve, we understand the importance of supporting children with cancer and caregivers helping navigate their journey upon diagnosis. Our team can provide resources, guidance, and hands-on support. We assist with everyday tasks including but not limited to meals, laundry, communication with friends and loved ones, housekeeping, and more while giving hope in a time of uncertainty. Reach out for our help right at diagnosis. We will be Here to Serve you through this unimaginable journey you neither asked for nor imagined you would have to take!
By Sameera Rangwala
About The Authur
Sameera Rangwala spent 10 years in the biotech industry. As a scientist and research professional, she uses her skills to blog and provide words of support to the cancer community.
All information on this blog is for informational and educational purposes only. Always consult a medical provider in your particular area of need before making significant changes in your medical decisions or lifestyle.