The Challenge of Being a Caregiver:
the unique perspective of a parent and provider
Becky Oakley, FNP-C, RN
After reading stories from a website that had a page dedicated to sharing funny moments that happened in families living with a child with medical complexities, I had to wipe my tears of laughter and take a huge, cleansing breath to regain my composure. When I showed my friend the stories on my tablet so that she could also enjoy the humor, my laughter erupted again. Much to my surprise, I was alone with my laughter. My friend was confused as to how these stories were anything but tragic and far from funny. She could not understand how I could laugh at these family stories that involved a child with serious, challenging, and difficult medical issues. For those of us living with a child with medical complexities, there is nothing like it - and it is hard to understand the ups and downs, joys and disappointments if you haven’t experienced it!
We’ve all heard the sayings, "You can either laugh or cry" or "Not all trials have to turn into tragedy." As both a parent of and practitioner with medically-complex children, I have been inspired to frequently ask, "How are we doing while living with children with serious pediatric illnesses?"
In a recent survey of parents who do not have access to palliative care:
Pediatric palliative care can address these challenges so that families have the support to handle the challenges and stresses that come with living with a child with medical complexities. Self-care and family care can maximize quality of life and reduce the negative health effects for all family members.
- 70% stated that their own personal health was negatively affected as they cared for their child with complex diagnoses
- 80% indicated that their family feels ALONE in meeting the needs of their child with complex medical needs
- 79% report that caregiving challenges cause severe stress in the relationships in their lives.
How does pediatric palliative care help?
Pediatric palliative care can improve the physical health of a child with medical complexities by providing an extra layer of medical care designed not to cure the disease, but to assist the child and family live with the extra demands of the child's diagnoses. By alleviating pain and enhancing the functional ability of the child and their family to participate in their world around them, a pediatric palliative care plan can help caregivers identify and resolve any current and unmet medical needs. The emotional well-being of the child with medical complexities and the family can improve as they foster resilience, adopt coping strategies, bolster stress management skills, recognize sibling needs and address caregiver fatigue. Spiritual focus can empower all involved to clarify purpose and meaning and to help find reconciliation with past events, peace in the present moments, and hope for the future.
It is possible to live well, share funny stories and laugh out loud while living with a child with a serious pediatric illness. Pediatric palliative care is essential medical care. Pediatric palliative care addresses physical, emotional, and spiritual needs for the child with medical complexities and the whole family. We know kids living with serious illness are amazing, and we know that their parents and siblings are amazing as well - each and every day!
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Becky Oakley, FNP-C, RN, is the Executive Director, Brades' Place. Becky has dedicated her life and nursing career to caring for children with life-changing diagnoses and disabilities. Becky adores her six children, who inspire her daily. Brades’ Place is named after her medically complex son, Brady, who taught her that children with unique traits do amazing things every day.