Monday, June 19, 2017

I Am Not A Caregiver

She jolts awake to an ear piercing screech that sends shockwaves through her nervous system. Hoping its just a startle from a bad dream, she allows herself to start drifting back to sleep when another screech jars her system again. She lies there with her eyes wide open now waiting to see if it will continue.

It does. And now its becoming louder and more incessant, demanding. She huffs and sighs, flips back the covers, slowly rolls up to a sitting position on the edge of the bed and rests her feet on the floor. She reluctantly stands up and walks the 8-10 feet over to her son's bedside. He is six years old and still sleeps in their room because of his penchant for having seizures, choking on secretions, and his inability to reposition himself.

It's 2:00 am this time. Sometimes its 3:00 am or 4:00 am. But this time its 2:00 am, and on a night her husband is out of town. This is key to note because most of the time she will lie in bed and wait, knowing her husband, the true caregiver, will typically jump out of bed, multiple times in a night if necessary, to check on their son.

Her husband continues to get up until he figures out the problem whether their son just needs to be rolled over, suctioned, have a dry rag put under his face, a diaper change, or just comforted due to a seizure or bad dream. He does all this without complaining, and even though his sleep is interrupted and lost just like hers, he is able to lie back down and immediately start snoring. The next day he is business as usual even if tired.

She, on the other hand, once she has gotten up, especially if it takes several times to figure things out, will take 1-2 hours before she can eventually fall back to sleep. The next day she is often tired, resentful, and grumpy, often lashing out at family members for no reason. She might sleep all day leaving the care of her son to her husband, who has a home office, or the nurse if they have one scheduled.

Once she arrives at his beside, she proceeds to go through the motions, checking items off the list, trying to solve the problem as quickly as possible, knowing every minute counts if she hopes to accomplish anything the next day, even if it's just successfully getting out of bed and seeing to her son's basic needs.

But the screeching and crying doesn't stop. So as a last resort, they usually assume their son is in some kind of pain whether it be a headache from the hydrocephalus, soreness around his hips, some residual pain from having a seizure or choking, or from constipation. She trudges to the kitchen in a fit of angry tears to prepare a syringe of crushed ibuprofen and water.

Returning to her room, she pauses his food pump, administers the medication through his g-tube, and pushes "run" on the pump. She leaves the lamp on across the room in case she has to get up again, and slumps back into bed.

Everything within her wants to scream or throw something. Her mind fills with angry resentful thoughts regarding her life situation. She turns up the white noise app on her phone, puts a pillow over her head, and sobs.

"I am not a caregiver!" she laments.

She did not seek out this role. She does not have a special gifting or heart to care for the long term sick, the terminally ill, or those approaching death. She did not pursue a career as a nurse. She is not a trained therapist. She is not a doctor. At minimum she has a heart for the underdog, and that's about it.

This gig chose her, fell into her lap, and she hates it. And she hates that she hates it. She wants to feel "the calling" as some might refer to it. And on some days she thinks she feels it. But usually those are the good days, the easy days, the days she thinks she's got this. Those are the days she's met his needs successfully or came up with an out of the box solution to one of his challenges, or just left his care to her husband or nurse so that there was the appearance of ease.

Instead, most of the time, especially on the hard days, the beyond difficult days, she carries the heavy mantel of guilt full across her shoulders, the mantel of guilt for hating the caregiving role as opposed to the glorified superhero cape caregivers are normally attributed.

So unless being a caregiver has the minimal requirement of not running away...and she's at least met that (so far), she is NOT a caregiver and does not want to BE a caregiver.


P.S. You might be thinking, "If she isn't a caregiver, then maybe she shouldn't have taken on the roles of wife or mom either." And you would be right. She barely succeeds in those roles too.