James Delles remembers what it was like to care for his father in his last days and offers a few tips about what anyone assuming the caregiver role for a parent really needs to know about death and dying.
My dad was a man.
He worked on cars. He drove a tractor trailer truck. He crushed three vertebrae lifting something heavy in a factory. He was a volunteer firefighter. He loved action movies and NASCAR. He was a bowler, a bit of a drinker, and a brawler. Classic rock and country music provided the soundtrack for his life.
He told dirty jokes, the more misogynistic and racist the better, as far as he was concerned. He didn’t like Obama and wasn’t afraid to say so. He hated that the world has become so politically correct. Nobody can take a joke anymore.
I’m not speaking ill of the dead. This is the same man who introduced me to Star Wars and The Terminator. He’s the man who came to my wrestling matches and theatre productions. He’s the man who showed up when my daughters were born.
He was just from a different generation, one where men had more defined expectations. Rural America is what it is, and he was every bit the country boy. Faced his own mortality, he grew more in his final year than in the first 49 years combined. The old man even learned to stop cussing in front of my wife and kids.
And, at the end, he came to depend on his socially liberal son for everything, including the final decision to end his life support, a call he couldn’t or wouldn’t make in advance.
I became his de facto caregiver. I am his oldest child and closest living relative in proximity. My sister took time off for the big doctors’ appointments, but it was my responsibility to visit him in the hospital each time he was admitted and determine whether it was time to round up the family.
I’ve watched my wife deliver two babies, given two eulogies, delivered mail in blizzard conditions, published written words for internet trolls to terrorize, but that drive to the hospital, that hour wondering if it was time, if I had done enough, if I had been a good son, if I could do this without him, however poor an example he may have been—that drive was the most difficult thing I’ve ever done.
And no one tells you that the hospitalizations start to feel like Groundhog Day before the end.
He’d be admitted, revitalized a bit, and released, over and over! I came to hope this one is the last trip. An hour in the car, alone and feeling guilty for wishing this would be the last time.
Once, I called a false alarm. My brother dropped everything, hopped a train and arrived just in time to bring him home. The next time, I didn’t call.
The last time, he was unconscious when I arrived. That wasn’t unusual, but he never woke up. A few hours later, a doctor told me what I already knew.
What happened next is still a bit of a blur. I made sure my brother and sister knew and I terminated his care. Nothing but a morphine trip to the afterlife from here.
My dad died on Father’s Day, June 15, 2014 of metastatic pancreatic cancer. He was 50 years old.
Looking back now, there are a few things I’d like to share with other men who are or may become caregivers to a terminally ill parent.
- Know your rights at work. I’m an American. The Family and Medical Leave Act isn’t much, but it’s all we have. It protects your job for up to 12 weeks “to care for the employee’s spouse, child, or parent who has a serious health condition.” Find out if you’re eligible, and submit the paperwork as soon as you can. Stick it to the man, you’ll never get this time back.
- There may be good times ahead. My brother and I had lunch with our dad about two weeks before he passed. He couldn’t eat much but he was happy that afternoon having his sons in the same room talking about old football games and girlfriends. When we took him home, he subjected us to the Pawn Stars episodes he’d missed while in the hospital. Good times.
- Funerals are expensive! It doesn’t matter if your parent owed a million bucks on credit cards or medical bills, they’re not your problem, but the funeral is, if there aren’t enough assets in the estate to cover the cost. I’m still dealing with it seven months later. Be prepared!
- Give them the wake they would want. I’ve been to too many stuffy black tie funerals for people who’d never be caught dead in that attire. See what I did there? We wore plaid shirts, set a blue fireman’s light spinning, and played “Prop Me Up Beside the Jukebox” IN the funeral home. The night he died, we had a bonfire, drank some moonshine, and celebrated his life. It helps that we’re Irish, but if you can be Irish on St. Patrick’s day, you have my permission to be Irish for a funeral too.
- You won’t know everyone who comes to pay their respects but they’ll know you. This one is odd every time. We play “who’s that?” in the receiving line. Usually someone knows, but not always. At my dad’s funeral, we met two uncles I had literally never seen before. My dad always told me I had an uncle who worked for NASA and I didn’t believe him. You were right old man, he drove 30 hours just for you!
- You’re going to get fat. I did anyway. Months of eating fast food while driving back and forth to the hospital, followed by a week of eating comfort food and drinking is not exactly good for the waist line. If you insist on wearing a suit to the funeral, you might want to see a tailor first.
- This is the time to be honest about your spirituality. My dad wasn’t much of a religious man, and I left the Catholic Church and Christianity years ago. For us to have a standard funeral mass would’ve been ridiculous. It’s your funeral (well, not yours…), you have options. We asked a friend of the family who is a Methodist lay minister, but also very respectful of the fact that we’re not a religious family. She dug up an old Celtic funeral blessing that seemed very appropriate given all the plaid in the room.