“Just keep swimming. Just keep swimming….”
— Dory from Disney’s Finding Nemo
As I sit here writing this blog, I am home with a sick child. In the past few weeks, our family has been hit with COVID, dealt with school closures due to large numbers of teachers and kids being out sick, and is now recovering from the flu. Sorting out how to care for my children, manage work responsibilities, including taking care of my patients, and take care of myself has been a minute-to-minute and ever-changing task.
For families with children with chronic medical conditions, juggling their child’s ongoing health needs is part of daily life. About 40 percent of children in the United States have a chronic medical condition (Bethell et al., 2011). Parents of children with medical conditions have to learn all the “typical” parenting strategies (which is no small feat!) plus all kinds of additional skills, such as how to share medical information with their child, how to manage their child’s medical care along with life, how to help their child deal with medical procedures and medications, and how to adapt to ever-changing situations. This places parents at risk for carrying high levels of stress and developing mental health symptoms.
Tips for Managing the Marathon of Caregiving for Children With Medical Conditions
Keeping in mind that the medical journey is often a marathon rather than a sprint, figuring out how to manage your stress and caregiving demands is essential both for you and your family.
1. Cultivate awareness: Be aware of your signs of stress. Schedule a time to check in with yourself. What happens when you start to feel stressed? Do you eat more? Eat less? Have trouble sleeping? Become irritable?
2. Stay connected with others: Reach out to your people. Taking care of a child with a chronic medical condition is hard. Sometimes a phone call or text to a friend can help you feel understood. Consider connecting with a group that has experience with the medical condition that your child has. Others can also help you sort out the “have-to’s” from what you can let go for now.
3. Accept help: The phrase “it takes a village” is no joke when it comes to parenting, especially parenting children with medical conditions. It can be tempting to try to do it all yourself, but this can add to stress over time. If someone offers to help, accept it. Can a friend do a pharmacy run or a grocery pick-up? Can they take a sibling to a sports practice? Every little thing counts.
4. Be ready to pivot: Sometimes, caregiver sprints pop up in the middle of the marathon, and we are forced to adjust. If your child starts vomiting in the middle of an important work meeting (yes, I have experienced this), you may need a minute to juggle. Give yourself a moment to re-group and plan. For example, do you need to cancel the meeting and call it a day? If your child is OK, can you set your child up with a movie and deal with the vomit mess later?
Sometimes you can juggle the changes and keep going. Other times, you may have to shut down your plans for the day and try again later. Sometimes more serious changes happen where your child might need a new treatment, surgery, or a new plan of care. Give yourself time to adjust to the change.
5. Make a plan: Plan for yourself. If you notice your stress is increasing, think about what works best for you to help make you feel better. This could include relaxation strategies such as diaphragmatic breathing or progressive muscle relaxation, exercise, connecting with friends or family, journaling, crafting, and therapy, among many others. Consider what you can fit into your current life; pick something, and do it.
6. Keep going: As the Dory quote says above, “Just keep swimming.” Sometimes caregiving can feel overwhelming. Try to break your responsibilities down into smaller pieces or steps. Try to focus on the next task in front of you only and do that one thing. Take it one step at a time.
On a final note, many caregivers find additional support from a mental health provider helpful. This can include therapy and/or medications. If you are having mental health symptoms that are getting in the way of your life, are difficult to cope with, or have any thoughts of harming yourself or others, reach out to your doctor for help. If you feel that you cannot keep yourself or others safe, immediately go to the nearest emergency room for help from professionals.
If you or someone you love is contemplating suicide, seek help immediately. For help 24/7, dial 988 for the National Suicide Prevention Lifeline, or reach out to the Crisis Text Line by texting TALK to 741741. To find a therapist near you, visit the Psychology Today Therapy Directory.
The ideas in this blog and resources are not a replacement for mental health care.