Role reversal

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I didn’t cry when I helped my father change into light blue hospital gowns before he underwent surgery to connect an implantable cardioverter defibrillator (ICD) to his heart. He was still very able-bodied, but he had shed weight over the several months leading up to the surgery and he was noticeably thin. The weight loss the result of another one of his bodily afflictions, polycystic kidney disease.

I didn’t cry when I had to bring him back to the emergency room two days after the surgery because he was unable to urinate. I didn’t cry when I peeked through the curtains in the ER as the nurse slid a catheter into his penis to relieve the pressure in his abdomen from all that built-up fluid.

I didn’t cry when my father and I found out he would need prostate surgery, less than a month after the ICD procedure. I helped to explain the surgery to my father, worked some family connections to get a referral to a urologist who could perform the surgery with a green light laser, and spent hours in the hospital’s waiting room when his surgery was delayed because of a backup in the operating room.

I didn’t cry when I had to bring my father to the ER again after the prostate surgery because of a worryingly heavy cough. I stayed stoic when the doctor in the ER told us my father had a small heart attack. I went to see him everyday he was in hospital for a week after that revelation.

I didn’t cry when my phone rang on a Sunday evening and I found out from the manager of a grocery store that my dad had fallen in the parking lot. I didn’t shed a tear when I found him in the ER with his nose plugged, his face bruised, his jacket blood-soaked.

I didn’t cry when my phone rang on a Friday afternoon at work and I found out a massive gust of wind knocked over my father in another grocery store’s parking lot. His eyes were apologetic as he sat upright on a stretcher, as if to say it was his fault for venturing out on such a blustery day. I spent nine hours in the ER with him before he was released. I got home at 5 a.m. on Saturday and ran a rain-drenched 10K at 6 p.m. because I had raised funds for the race and I didn’t want to back out on my benefactors.

I didn’t cry when our family doctor called me on a Wednesday morning to say I should take my father to the ER because an ultrasound showed a mass on his liver. When we finally saw a doctor in the ER, I handed over the results of the ultrasound that I printed off, along with a list of my father’s medications which I keep in a binder of his health records I made when all this shit kicked off with the ICD surgery last August.

I didn’t cry when it became clear my father needed dialysis. I used more family connections to get in a phone call with a exceptional nephrologist. I sent him my dad’s blood test and CT scan results. He let me know that without dialysis my father would have six weeks to six months to live. Dry eyes still. Dry eyes when I conveyed the news to my father as we sat side-by-side on his hospital bed.

I didn’t cry when the porter brought my dad back to his hospital room, where I was waiting, after his first dialysis treatment. I helped my father rise from the gurney and shuffle to his bed. I helped him change into a new hospital gown. I looked at the newly implanted dialysis catheter, two tubes dangling out of his right chest. On the left side of his chest, a business card shaped protrusion, his ICD. His arms were rail thin and littered with scabs and bruises, the result of repeated falls in combination with a regimen of potent blood thinners.

I’m driving northbound on Mavis Road, approaching Eglinton Avenue. I’m heading to the Heartland Town Centre.

I’m bawling.

I slow my dad’s Honda CR-V to a stop at the red light. I’m driving his car because right now he can’t. I’m going shopping because my dad’s closet is full of clothing that’s too big for him. I slept 11 hours last night and I’m exhausted. I eat more from vending machines and drive-thru windows than from my kitchen. I spend hours driving and rarely get in a few minutes to exercise. I can feel the seatbelt squeezing against my blubbery belly. I look in the rearview mirror and wipe away the tears. I take a deep breath and slowly accelerate after the light turns green.

~ ~ ~

My father is a caring man. He was at the ready to drive me to the ER every time I had a complication after my surgeries. He never missed a day to visit me while I was in hospital. He helped flush out the drainage tube that ran into an abscess that developed after my first operation. He kept easy-to-digest foods and drinks well-stocked at home as I recovered. For fuck sakes, he fed and clothed and housed me for well over two decades.

My years of shitty health have at least given me a better understanding of what to expect in hospitals and from the healthcare system. I know there are bureaucracies to navigate, forms to be filled out, records to maintain, delays to expect, questions to ask, answers to write down. I’m glad I can help my father in those areas now with the hindsight of my experiences. I’m also glad that my pelvic pouch continues to give me the ability to take on this caregiving role.

One thing that a few people have suggested to me is that it can be harder to be the caregiver than the patient. That seeing someone you love suffer is more taxing than suffering yourself.

Bullshit. It’s always harder to be the patient. Always. It’s harder to shuffle around hospital hallways with an IV pole than to offer an arm for balance. It’s harder to drift off with anesthetic on the operating room table than to nod off in a waiting room chair. It’s harder to feel a surge of pain than to witness the grimace.

I remind myself of that when the weight of caregiving feels too heavy. I can’t imagine the battering my father has faced over the last year. I can’t imagine the added toll of going through it at an elderly age (he’s 79). At least when I had major surgery, I had the resilience of a younger body on my side. My father doesn’t, and I figure that’s pretty goddamned hard to deal with.

I bought him a pair of grey sweatpants. Easy to get on and off. Comfortable at the waist. 60% off. Score. I delivered the sweatpants to him today and gave him an injection of a drug used to anemia, as I have every Wednesday and Sunday for the last four months. Then I cried some more on the drive home.

Because it’s my turn.

Because it’s my responsibility.

And because it’s hard.

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Five things I’ve learned from five years with a j-pouch

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Getting in on the IBD advocacy tag