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Myelofibrosis Caregiver Interview Series: The Impact of Myelofibrosis on Caregivers

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In the latest installment of the Myelofibrosis Caregiver Interview Series, Tim F. from Pittsburgh, PA, talks with Fadi Haddad, MD about the caregiver perspective, highlighting the substantial day-to-day burden of care—including medication management, assistance with activities of daily living, and the erosion of social engagement—underscoring the often unrecognized physical and emotional demands placed on caregivers throughout the disease course.

TRANSCRIPT

Fadi Haddad, MD: Tell me more how being a caregiver impacted your daily life. Did it affect your work, your social life, maybe hanging out with friends, with family, how your activities of daily living were impacted by the fact that you were a caregiver?

Tim F: We were in a battle, a daily battle. And just between monitoring her medications, dealing with her medications, the other day-to-day activities of life and assisting with showers. It gets to a point where I don't want to say I didn't want a social life, but there were very few people that I would even want to talk to because there wasn't any time. You're just in there fighting and you keep moving on. Yeah. It got to a point where, if you want to call it a social life, but relatives checking in on her. Every time you talk to somebody, it's like 20 minutes. I couldn't do it. So it's just too much time. I had other more important things to do. So my strategy for that was I kept a detailed daily journal of everything that happened. And instead of talking to everybody for 20 minutes each, I'd send them a picture of my journal for that day and call it done.

Yeah, it's tough, but you don't realize it while you're in there fighting it. It's not until you get a chance after things get better and you get a couple steps forward that you can look back and even begin to understand what it is you were going through. And you can't dwell on it because you got to gear up and do it again.

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