In this post, Heidi’s father faces a difficult decision, and his wife and daughter/caregiver struggle with what to do for the best.
by Heidi Croot
It is Saturday, September 17.
He hates his daily baths, hates any assault on his body. I request that baths be administered every other day. The hospital adjusts its diagnosis: he has aspiration pneumonitis, not pneumonia. This means his lungs are inflamed but there’s no infection. The antibiotics that we’ve all been waiting for to work their magic are irrelevant.
The doctor tells me if Daddy hasn’t improved by Wednesday, he’ll go to palliative care. “Other patients in his condition would have gone to palliative care immediately,” he says, “but your father was vociferous about wanting to fight so I met him there. It’s just hard to watch the struggle.”
That night in Boston Pizza, I fill pages in my journal. I have come to see that the stuff you’re made of does not show up when a crisis is new and shot through with adrenaline. In the early days, you can see the difference you’re making. You don’t tap core strength and resilience until later, when the situation has slid into status quo, when there’s no end in sight, when the patient feels weary and entitled, when you feel a long way from home. The personal rewards of caring for my father are both short and long term. I know I’ve provided comfort, and he has, until recently, been effusively grateful. That’s the short term. In the long term, I’ve disarmed regret and remorse. Caring for my father has given me an opportunity to demonstrate who I am to both my parents and to any doubters created by my mother. In spite of this, I feel confused and sad. The chasm between me and my father, far from closing, has become more obvious in the past two weeks. It dawns on me that the care I’m providing is, to a large extent, what I’d give any lonely person in trouble. Some of what I’m doing belongs to him, the rest to humanity.
Oh snap out of it, Croot, I tell myself. His understanding of our family dynamics may be tenuous, and he might not have been a father as much as both of us would have liked him to be, yet it’s still good that I’m here doing what I’m doing.
I reflect on the kindness around me. Phil, who left days ago to oversee scheduled renovations at our house, calls every evening at 8:00 p.m. Family and friends stay in touch by phone and email. A server asks how my father is doing. On my way out of the restaurant, I stop to tell a young man how good he’s being to a frail man at his table, and his grin is like sunrise. The day before, the lady who serves breakfast at the Quality Suites had left me a gift bag full of vanilla-scented toiletries, and the desk staff announced they wanted to retroactively offer me their monthly rate of twenty-eight dollars a night.
Next day, Daddy’s energy visibly improves. He talks about Mops and Tosca, the legendary family dogs. He tells the nurse he dreamed he’d gone to Toronto for a carnival. He can’t stop talking. He allows himself to be placed in a chair for twenty minutes. I call my mother to report the good news. She can’t remember where Daddy is. “Why didn’t you tell me he was at University Hospital?”
I decide to arrive a little later in the mornings, leave earlier in the afternoons. It’s time to prepare Daddy for my return home.
Next morning, he says, “I thought you’d abandoned me.” When I explain I’d spent the previous afternoon visiting my mother, he says, “I should have known better than to doubt you,” and then, “Who’s going to look after me?”
“Hospital staff, I reply, “and eventually nursing home staff.”
He laughs loudly and sarcastically.
His turnabout doesn’t last long. He fails his swallowing test again, and the doctor gives him a new choice: exchange his nasal feeding tube with a permanent stomach feeding tube, or accept food and drink with full knowledge that he is risking aspiration, pneumonia and death. The stomach feeding tube, the “G-J,” as it’s called, would be surgically implanted in his abdomen to reach his small intestine and held in place with an inflated balloon in his stomach. The prospect disheartens him. I leave the room to call my mother. The hospital employee who replaces linens rushes over to tell me he is shouting. “Where’s Heidi? I’m dying!”
I calm him by telling him Mother plans to visit tomorrow.
“Too late,” he says. “Too late.”
Mother agrees to come immediately. Daddy and I talk about cremation and grave sites while we wait. “The biggest thing is letting go,” he says.
“And you feel you’ve reached that?”
“Oh yes. I hope I don’t make things sad or bad for people.”
He recites a few stanzas of Matthew Arnold’s lyric poem, Dover Beach, then some of J. Milton Hayes’ The Green Eye of the Little Yellow God. He seems euphoric, now that he’s decided to go. “I’d like you to have my fountain pen,” he tells me.
When Mother enters the room, he begins to wail. “Peder, Peder, Peder!”
Peder is a diminutive of Pedermaus, an endearment of German origins used in our family. A nurse, busy updating some charts, hears my father’s cries, sees the agony of his mouth and his outstretched arms, murmurs “Oh God,” and flees the room, eyes brimming. I stay but feel like a trespasser. I sit small in my chair at the foot of Daddy’s bed and take notes.
“I would fly here if I had to,” Mother says.
“I’m not well. There doesn’t seem to be any solution.”
“There are always solutions.”
“I — I don’t know what to say then. I’m dying. I’m so tired. I’m worn out.”
“I find that hard to believe. It comes from all that struggling.”
“I’m so tired, Reni. It’s terrible, terrible, all the poking and prodding. I’ve been fighting so long. I feel I want to go to sleep and never wake up.”
“I don’t want you to go to sleep.”
“I can’t fight it. I don’t want pokes and prods. Just knowing you’re here, I could sleep. Night after night I shout for help and nobody comes until the nurse came this morning. I hate to put this on you. I love you so much.”
“You’re not putting anything on me.”
“What a way to end. Don’t mind me. I’m a groaner.”
“It feels better when you yammer a bit. But Keith, if something should happen to you, who will give me advice? You always give me advice.”
He pauses. “I’ll pull through. But when the night comes, it’s horrible.”
I chime in to say we can hire a caregiver to stay with him nights.
“The cost,” Daddy says.
“I don’t care about the cost,” she replies.
“I don’t want to die but I can’t live the way they describe it,” he says, referring to the stomach tube. “I really thought I was dying at noon, that all I had to do was turn my head and wait. It felt so easy.”
“Well then,” she says, “if it’s easy you don’t have to worry about it, do you.”
“No. I feel I’m on a slippery slope. I don’t feel real.”
When things calm down, they ask me to describe again the two options that have been laid before my father: the stomach tube vs. the risks of eating and drinking. The nutritionist arrives and informs us the stomach feeding tube does not rule out aspiration. This does the simplicity of my rehearsed explanations no good at all.
A nurse comes in. She asks him if he is afraid to die. Before he can answer, my mother says, “Well I am. To reverse the question.” Nobody wants to die, she adds, nobody.
Why doesn’t he contradict her?
“Someone mentioned that you have beautiful brown eyes,” Mother says when the nurse leaves. “When I met you, I thought you were pretty good-looking.”
It’s the first compliment I ever remember her paying my father.
“And I was, too,” he says.
My father first saw my mother on a summer day in 1950 when he entered the dining room at his boarding house at 11 Homewood Avenue, off Carlton Street in Toronto, and saw her sitting alone at a table in the corner, her wooden crutches leaning against the wall. Keith was a lanky, six-foot-two, twenty-three-year-old English lad, fresh off the boat, with black hair combed back from his forehead, big brown eyes behind glasses, graceful wrists, and broad shoulders. He was inexperienced but malleable, well-mannered but unworldly, friendless and shy. He pulled out his chair, kept his eyes on his plate, thanked his landlady when she served her simple meal. He lifted food to his mouth on the back of his fork, tines pointing down. He was lucky she didn’t notice, or, if she did, that she was too lonely to care.
Reni, a derivative of Irene, was two years younger, standing five feet-four on her braces and crutches, a German immigrant raised in the backwoods of Ontario, when she wasn’t in hospital enduring procedures or being fitted with braces, corsets and crutches, and stoked with a fiery determination to teach herself everything she would need to take her place in society: how to transfer her fork to her right hand to eat, how to place her knife and fork on her plate to signal she was finished with her meal, how to type at more than a hundred words a minute, how to budget her meagre earnings, how to flirt. She had Hollywood beauty, apple cheeks, a sensuous mouth accessorized with red, eyes like sky and steel, her mid-length golden brown hair pinned in an affordable updo. They had both fled over-protective parenting, Mother from her father’s desire to shelter his disabled daughter, all her life if he could, and Daddy from his mother’s over-indulgence of her only son.
Mother’s quick-silver conversation in the boarding house dining room, her questions and teasing and laughter, would have dazzled Daddy, while his knowledge of history and knack for memorizing poetry — surely he recited his beloved Rupert Brooke — likely captivated her. I see potential here, I imagine her thinking. I can work with this, turn him into something.
I ask Mother, as she sits by Daddy’s hospital bed, why the two of them so rarely talked about their past with me. She can’t say. It was a make-conversation question, anyway. My role in the family had always been toes behind the line, please and thank you. In their best days, they had room only for one another, and in their worst, their mutual abhorrence was all-consuming.
About the author:
Heidi Croot has been published in trade and company publications, under her own name and as a ghostwriter for corporate clients. After more than thirty years in business writing, she is full of joy to be transitioning into a biographical memoir about some vivid people in her family. In 2014, she was published in Renaissance, a WCDR anthology of short stories, and in 2015, short-listed by The Malahat Review. She lives with her husband in Northumberland County.