Danielle, a Stanford Medicine X ePatient Delegate and fierce advocate for her daughter’s rare health condition, shares her own personal story about what it’s like when the caregiver becomes the patient.
You can find Danielle on social media:
Twitter: @Danielle_Edges
Blog: http://lifeishardwearahelmetadventuresinlife.blogspot.com
Facebook page devoted to her daughter: https://www.facebook.com/AlexandrasJourney/
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Caregiver Becomes Patient
On July 5, 2007, I became the caregiver of a medically complex patient. My beautiful daughter was born that day with a rare condition with complex congenital heart defects. I was thrust into the world of medicine with a very sick infant in tow, and I have never looked back. I made it my duty to advocate for her, and for others like her. What I didn’t know was how to advocate for MYSELF.
I’ve always had headaches of varying intensities my entire life, but in September of 2015 I awoke one night to what I thought for sure was a stroke. Thankfully it wasn’t – it was a very painful form of headaches called cluster headaches. Now not only was I the caregiver of a medically complex child, I was now a patient myself. I was lost and not sure how to manage my own pain, as well as the full-time job of a patient requiring several weekly appointments. I was working a part time job, trying to finish my degree, and now I had a nightly visitor that awoke me from my slumber with my own screams.
At first after the initial diagnosis I attempted to ignore myself thinking to myself “Her condition and life far outweighs mine.” I gulped over the counter pain medications like it was going out of style, and I would try and sleep upright because I was positive that it was laying down that caused the hot poker in my left eye each night. It wasn’t until one day my Mother came to see me and found me laying in pain in bed during the afternoon. She immediately took me to my PCP and told him that he had to tell me to take care of myself. I honestly don’t even remember the visit all that well except for the dry mouth feeling I had afterwards from sitting hooked up to 15 liters of oxygen being blown in my face. I knew it had to stop. It was affecting my ability to care for my daughter.
I went home that day with oxygen tanks and a new prescription to help prevent this visitor from the underworld. Still she came, not nightly like before, but a few times a week. The meds were working. I felt like I had a new lease on life. Now, after almost 2 years on the preventative, my visitor only comes to stay a few times a month. I still cling to my oxygen tanks for when she stops by because it is the only thing that makes her leave quickly enough.
Caregivers are selfless. We continue to do and go until we can no longer. But what happens when the caregiver then becomes the patient? How can we ensure that caregivers are being taken care of so they can continue to care for their patients? I ask myself these questions because I live this every day. Recently, I was also diagnosed with Type 2 diabetes which makes me a patient now twice over. I often wonder if one of her doctors at some point asked me “How are you – really?” at her appointments if I would have had a different outcome. Would I have ignored myself even with the pain if someone had taken a deeper interest in me? I know it can sound selfish, but as my doctor said “Who is going to take care of your daughter if you can’t? Remember the oxygen masks? You have got to take care of yourself so you can take care of her.”
We need to care for our caregivers. Without them our most fragile and complex patients cannot receive the care they need, let alone the care they deserve. I can only imagine a world of medicine that looks at not only the patient, but at those who surround the patient. I guess that’s why we still call it the “practice” of medicine.
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Thank you, Danielle, for sharing your inspiring story!
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