I was 32 and living in Los Angeles when I became my father’s caregiver, following his diagnosis of progressive supranuclear palsy, a rare degenerative brain disease that affects walking, swallowing and speech. Many people associate the term “caregiver” with a hired home health aide, or a family member providing constant live-in care, but the term can refer to a variety of situations from daily care to sharing in decision-making or finances. In our case, my dad needed constant supervision, so he lived in an assisted living facility in New York, and then a nursing home. But as his only child (my parents were divorced), I was responsible for and very involved in his care.
Because I was so focused on my dad’s health, I didn’t realize at the time how traumatic these hospital visits were, or that their memories would haunt me. After he passed, classic PTSD symptoms, which included intrusive flashbacks, being “dazed” when distressed, and avoiding medical settings reminiscent of his disease, recurred for a couple of years.
If you had told me when my father got ill that I could be at risk of developing PTS symptoms if I cared for him, my response probably would’ve been, “I’ll be fine.” Personal well-being isn’t something caregivers think about much, perhaps because many don’t have a choice about taking on this responsibility. I brushed aside any distress — such as panicking when my phone rang with an unknown number — as typical because, why wouldn’t this be upsetting? Caregivers often normalize negative responses, not realizing something deeper is at play. Making matters worse, they often delay their own mental health treatment to prioritize others’ care.
Read the full article on the Washington Post.
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