Exploring family dynamics when parents are also caregivers
There's no one-size-fits-all solution, so we do what works best for us
I was diagnosed with pulmonary hypertension in 1999, when I was just 4 years old. My parents were obviously responsible for overseeing my healthcare at the time, particularly my mother, who has been intimately involved with my journey since the day of my diagnosis.
The parent-child relationship in the context of healthcare can be complicated. It can be approached in many different ways to accommodate a wide range of preferences. My parents became heavily involved following my early diagnosis, a relationship that hasn’t really changed much, even as I’ve aged.
There are several reasons for this. First, I’m a single 29-year-old and don’t have spousal support, which means I’m still heavily reliant on familial relationships.
Additionally, I’ve lived with my parents since 2018 due to the level of care I require. I can rely on them for whatever level of care I need during any given season. Due to my dynamic level of dependence, I don’t have the option of living alone, so this is a wonderful solution.
Finally, having my mother involved in my care in a hands-on manner has always suited our mutual preferences. I’m never alone at a doctor’s appointment or a trip to the emergency department. She’s always served as an agent for my medical needs, and with my input, she manages most of my prescriptions, medical supplies, and scheduling.
I could argue either way whether this is appropriate or still necessary. But these are roles that were established when I was much younger, and it’s difficult to change them. A large part of it stems from a mother’s desire to share the burdens of her child. It’s always felt natural for us to tackle the immense task of managing my health together.
As I’ve grown older, it’s been interesting to witness the parent-child dynamics that develop following childhood health issues. I know people who prefer in adulthood to never have a parent present during appointments. I also know others who, like me, live with their parents for intermittent caregiving or additional support.
I’ve been incredibly fortunate to have such a relationship with my parents. Somehow we’ve experienced very little personal strife throughout the years. One of the greatest blessings in my life is the selfless way they love me and provide the care I deserve in hard times. I know they’ll always be here, fully loving me in whatever capacity I require. Not all children, sick or otherwise, experience this type of relationship.
There’s never a one-size-fits-all approach to these types of dynamics. It depends on the nature of the people involved. For me, it’s always been a fairly straightforward path, which sometimes feels like a miracle.
Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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