Hey there caregiver,
It’s 2 am, and I have awoken to a faulty “No Flow” feeding pump error (if you know, you know). I walk down the dark stairwell and to their room to reposition my child and restart/reprime their feeding pump.
As I trudge up the dark stairwell and crawl back into bed, my mind is spontaneously slammed with thoughts of how I worded the most recent letter of justification that I wrote for my child’s doctors to sign for the upcoming hearing, which will determine if our child is deserving and disabled enough to receive overnight nursing hours.
And now I am fully awake, unable to sleep knowing there might be a different, more compelling word that I can use to convey my child’s needs. Friends, I call this unfair disruption the Admin Angst.
I only went to bed at 11 pm, having spent my evening writing said letter. That’s right…rather than doing what I can only assume it is that other, non-caregiving parents do…relaxing?
Instead, I spend most of my evenings reviewing the medical events that occurred throughout the day, documenting conversations I have had or need to have with our specialty care team, appointments I need to make or prepare for, prescriptions that need to be refilled, and supplies that need to be reordered.
It doesn’t end there.
Once these dates and things arrive, I then have to prepare my notes and myself to communicate our concerns effectively, provide a narrative of all medical updates and supporting data, review all medications received for possible misdosage and spillage, check in all supplies to ensure the order is correct and accounted for… all while also providing the best medical care possible for my child as their mom and honorary nurse, doctor, therapist, pharmacist, nutritionist, administrator, inventory specialist, medical narrator, and…, and… Heck, I know I have forgotten a title or two.
It sounds like A LOT, right? That’s because it is. It is A LOT to be responsible for.
The sad part is, this is not even the most effort I have historically put into the administrative work of ensuring my child’s needs are met. This is damn near my personal bare minimum.
Yeah, you read that right. I’m not doing my personal best in this arena. There was a time and place when I was significantly more organized and detailed when it came to the administrative tasks required in managing the home health care of a medically complex child. I didn’t wait until the end of the day to organize everything. I was more proactive and detailed. And it came with a cost…my emotional well-being.
Few understand the time and energy it takes a caregiver to support a medically complex child, and I am not just talking about the daily medical care. I am speaking specifically about the administrative work required to maintain their care. But the unfortunate reality is that the countless hours spent tackling administrative tasks takes away from the quality time caregivers would rather be spending with their children.
But this is non-negotiable.
There is no choice in the matter, so long as you want your child to live in the comfort of their own home as opposed to a hospital or institution – where, let’s face it, they have dozens of people doing the many different specialized jobs you are trying to do as just one person.
As caregivers, we are left fending tirelessly and single handedly for the well-being of our kids. We are up against multiple systems, each of which conflict in their requirements to prove your child is worthy of the needs you are requesting.
And the worst part of all this is that all the work just isn’t enough. Yes, you read that right too.
Despite all the effort, organization, evidence, and follow ups…at one point or another, we will receive a denial. It is inevitable. And friends, there is nothing more defeating than to be sent a denial for the very thing our kids desperately need – be it food, medicine, a procedure, treatment, a medical device, or adaptive equipment.
Caregivers typically have three choices in these situations: to start over, give up, or pay out of pocket (if that is even possible). And if, like me, you have received multiple denials for an item, many of us caregivers throw in the towel and either give up or find a way to pay for it ourselves.
Feeling defeated, I wonder, could I have done more?
Truthfully, the answer is probably no.
We can go back and forth and round and round for days on some of these, but at the end of the day, we only have so much control over denials and insurance decisions and school allocations.
But nevertheless, at this moment, I am feeling up for the fight. With a deep breath and an annoyed sigh, we roll up our sleeves, open the filing cabinet, and begin the work of starting the process over.
It’s 8 am, the nurse is here to help provide care now. Most people think that I use this time with support to sleep in, do self-care, or just go have me-time. And perhaps that is the case for some caregivers, but this caregiver has a list of at least a dozen phone calls I have to make with entities that are only open from 8am – 4pm. Each of these calls will place me on hold for over an hour. Many of them will result in being told I need to call a different number, a different department, a different doctor.
And today, I am up for the challenge.
But other days, I am not.
Being the caregiver of a child with a terminal disease means that every moment I spend doing administrative work like this, is precious time I am losing with my child, whose days spent by my side are already numbered.
And some days, instead of fighting fights that can sometimes feel hopeless, I instead choose to hold my kids, play their favorite games, and live in the sweet moments I get with them.
And some days, that’s all we can do.
