As an HAE caregiver, looking to the future scares me sometimes
Caregiving isn't just about what we’re doing now
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“How are our lives going?” John asks.
“Are we rich?” Ben immediately follows.
In a hilarious prerecorded video for “Saturday Night Live,” comedy trio Please Don’t Destroy presents a scenario in which future Ben, John, and Martin come to deliver a grave warning to the present-day troupe about the end of the world.
In the aptly named short “Future Selves,” the warning is interrupted when the present trio, who couldn’t care less about the end of the world, wants to know how they are faring in the future. They begin to bombard their time-traveling selves with questions about wealth and marriage.
Unfortunately, John, Ben, and Martin learn that their future is bleak. They will be in crushing debt, experience bitter divorces, and won’t necessarily be the greatest people. Played for laughs, the two groups argue with one another, with the present group ultimately deciding they don’t care to do anything to change the future if that’s what it looks like.
Admittedly, I’ve watched that sketch several times because it makes me laugh. But recently, it made me realize that as a caregiver, I’ve been simultaneously looking forward to and fearing our daughter’s future.
Preparing for the future
When our daughter, whom we lovingly call Ladybug, was diagnosed with hereditary angioedema (HAE), it felt like being dropped into an ocean of necessary tasks. We had to order preventive and emergency medications in advance so they would be available when needed, manage doctor appointments so that prescriptions were refilled, and be trained to administer medications.
But there was another side of caregiving I never expected. We spent a significant amount of time challenging insurance companies when medications were denied, managing multiple copays from emergency room and doctor visits, and juggling time off work. It took time to understand the jargon and insurance codes, and we spent hours poring over pages of itemized hospital bills while double-checking charges. I never worried about Ladybug having to do any of these things because I never had time to think past what we were currently going through.
Yet, as Ladybug prepares to start her junior year of high school, I’m realizing that we’re closer to college and questioning what it will look like if she wants to leave the city or state. Yesterday, I wondered what it would be like to talk to Ladybug 10 years from now. How is she managing her swells? How is she administering her meds? Is everything OK?
Unfortunately, and maybe fortunately, time travel isn’t possible. Because of this, I must prepare her for what she may face with HAE. This means that as Ladybug gets older, I need to make sure she is trained and educated, and that she knows how to navigate insurance. But most importantly, I have to make sure she knows how to advocate for her own care regardless of where she ends up.
Caregiving isn’t just about what we’re doing now for the one we love, but helping them prepare for what they can do later when we may not be around. And as scary as that may be, facing the future is a challenge we can take on together.
Note: Angioedema 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 Angioedema News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to angioedema.
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