As a doctoral candidate interested in caregiving I read a lot. A few years ago I stumbled across a definition of extreme parental care in a Master’s thesis authored by a physician named Dr. Lisa Freitag. Extreme parental caregivers are parents who provide ongoing, complex care for children of any age, including adult children. The care required by their children is demanding, unyielding, unending, and provided to their child, an individual with whom the parent has a deep and emotionally intense bond. Parents who provide extreme parental care often live paradoxical lives where they are deeply and wholly devoted to their beloved child to the point of self sacrifice, while simultaneously feeling overwhelmed, exhausted, isolated, and even angry and resentful at times.
I should know. I am the extreme caregiver to a 17 year old son who lives with profound physical and intellectual disabilities. To keep me on my toes he also lives with a range of complex medical issues including a feeding tube, seizures, and at times, breathing difficulties.
This blog is not about my son’s journey. There are many excellent blogs about the journeys of children living with disabilities or complex medical issues. Rather, this blog is an attempt to explore, and perhaps even dismantle, the stereotypes and myths about parents who are full-time, extreme caregivers. Often our communities see us as saints and superhuman, and often we present that way. It’s not as if we had a choice about this life, and society really prefers us to look like we have our act together. Often we give in to the pressure. Or at least I know I do. However, there are often parts of our story that aren’t told or heard. My hope is to offer an honest look at what it is like to provide ongoing, complex care to someone you love beyond measure. The joy and the chaos.
If you are so inclined, please add your voice to the conversation in the comments section. Alternatively, if you wish to contact me privately feel free to email me at firstname.lastname@example.org