February 27th of this year marked the 5 year anniversary of my mother’s passing. And today, April 17th, marks the one year anniversary of my father’s death. And it’s time to talk about it.
My mother was diagnosed with Leukemia on the day that I went back to work from maternity leave. It was a Thursday. I felt that I should have walked right back out of the office and driven to Pittsburgh right then, but it didn’t feel right to leave right after a 10-week leave. So, I instead bought tickets to leave the following week. Smart, huh?
Not so much. I never used the tickets. Tuesday morning at 4 AM, I got a phone call. And when your mother is in the hospital, and you get a call at 4 AM, you know what happened before you answer. 5 days after her diagnosis, my mother bled out after hours in the ICU, a hospital unit she worked in for many years as a ward secretary (though in a different hospital).
Fast forward to months later when I discover that my dad has met someone new. And she has moved into my father’s house. I find out because it’s her voice on the answering machine. He tells my sister that he doesn’t need to explain himself to us because he’s a grown man and can live his own life. We don’t argue.
Fast forward a couple of years later, and my relationship with my father has been unfolding much like it always has. My dad always had a big heart, but didn’t really ever talk to us. The only time I really felt close to my father was when I was in college. I would come home for breaks, and he would be animated, interested, talkative, and tell me stories about himself, his childhood, his life he’d never told me before. He confided in me. Inexplicably as everything else with him, that just stopped.
The only other time I felt close to him was when he was dying.
I really had no idea how advanced his lung cancer was when he told me about it in mid March. I was hoping he had a fighting chance but wasn’t optimistic. He declined treatment. When he was put into home hospice, I discovered that they don’t do that unless you have only months left. I planned to spend a week a month taking care of him, and 3 weeks after getting the terrible news, I was on my way to his house. Except he wasn’t there.
He was in the hospital getting fluids.
All of this was wrong. You’re not supposed to get medical treatment when you’re in hospice. And I had just left my house to drive through the night to get there when he was admitted, and no one even bothered to call me. (I got a call from my niece when I was 20 minutes from my destination.) Everything was wrong. It was scene after scene with my family at the hospital. After being up all night driving, I was drained and just wanted some clarity. The only thing I could really decipher was that everything was wrong.
I learned that his cancer was not only in his lungs, but had spread to his liver and his bones. The tumors on his spine were causing stress fractures, immobilizing him. He was going into renal failure. He had a MRSA infection. And then insurance wouldn’t cover his medical stay, so just after hospice came to take the medical equipment out of the house, they had to turn around hours later to install it all again. He was released into my care this time instead of his girlfriend’s. She stayed in her room all night and most of the day while I cared for my father with the help of my very pregnant niece.
Caring for my dad made me feel needed, but it also made me feel completely incompetent. I am not a nurse. And this shit is hard. And he yelled at me a lot. I actually liked that because that was when he seemed most like himself. If he’d had his glasses on, he could have seen that the only time I was smiling was when he was cursing at me.
Like having a baby, you sleep when the patient sleeps. In my case, it was on a very uncomfortable couch next to my father’s hospital-style bed. The only reason I could sleep at all was out of pure exhaustion. And then the girlfriend’s fucking cuckoo clock would go off every hour and wake me back up. There’s no REM for the weary.
On my first full day there, I was going to take my son outside for a bit and let him play. I grabbed my shoes, and leaned over to tell my father that I was going outside for a bit and that someone else was there to take care of him if he needed something. But he didn’t want someone else. He grabbed my arm, looked right at me and said in his barely audible voice, “Don’t go.”
My heart dropped and I nearly cried. Despite how much I was surely fucking up on a grand scale in taking care of him, he wanted me there. So my nephews became my son’s caregivers until my in-laws came to have him stay with them for the week.
Caring for my father was grueling. And he requested painkillers much more than food or water. He most often refused when I offered either of the latter. I fed him chicken soup once. His last meal was vanilla ice cream. He only once declined the morphine.
I had arrived on a Thursday morning. On Saturday night, my father slept through the night. And I just knew. The previous nights had been so hard – harder than the days; for him not to wake was a bad sign. And he had taken in so little water. I spent a good half hour after he woke using a sponge swab to moisten his mouth, dipping it into water and then running it across his tongue and gums in his gaping mouth. He nearly choked on the slightest amount of liquid dripping into his throat.
Around 3PM on Sunday, I was putting lotion on his arms and hands when his breathing changed. There was a clatter in his breath. I called my sister over. She knew right away to call the hospice nurse. The nurse arrived within 20 minutes and started examining him and cleaning up after my mess of attending to him. Shortly after 4, she called us into the kitchen to tell us that he didn’t have long. I texted my brother in Colorado our father’s bp. I turned to my sister and cried on her shoulder for a moment when the hospice nurse called to us. It was 4:30.
“You should get in here now,” she called. “He’s taking his last breaths.”
We ran in and took our spots on either side of him, holding his hands and watching as he looked straight up at the ceiling and took his last few labored gasps. And then it was over. And somehow, as I looked at this man I had known my whole life, I knew that I only knew as much about him as he’d let me. There was an invisible line he felt he couldn’t cross with us. I was surprised by my own reaction, taking this loss even harder than losing my mother. And it pained me to know that during his service the thing the pastor would focus on about him was that he was “a hard worker.”
My dad was an avid hunter and a really good euchre player. After 35 years of marriage, he would look at his wife and marvel at how beautiful she was. He was terribly shy and insecure but also had the biggest laugh of anyone I’ve ever known. He would give a stranger the shirt off his back, and he would let you win a game of pool if he thought you needed it more than he did. He was a hell of a little league coach and was a ruthless believer in his son’s potential to do great things – to a fault. He valued pride over money and had a temper. He once choked a sheriff because he wouldn’t help him put a child abuser behind bars. (The sheriff couldn’t really blame him and opted not to arrest him for it.) But most of the time, he kept the depth that was within him sealed up for him to bear.
Except for that glimpse he gave me when he asked me to stay. And that’s what I hold onto.
