The final installment of guest author Heidi Croot’s reminiscence of caring for her dying father.
by Heidi Croot
Before Mother leaves the hospital, Daddy decides to vote for the stomach feeding tube. I feel as if his decision goes against everything he’s been saying he wants. When I return after seeing her off, he seems chipper. I ask, “So, you’re up for this after all?”
“No,” he replies, shaking his head so emphatically that both cheeks touch the pillow in turn.
I don’t press it. I’m becoming more at ease with the contours of confusion. “Take care of yourself,” his doctor told me the other day. I try. I practice quietness as I sit in my chair in my father’s room, insofar as a hospital environment permits quietness. I capture conversations in my spiral notebook. When staff boot me out so they can perform care routines, I sit on a bench flanking the walkway leading to the hospital entrance and bask in the late-summer humidity. I take my journal with me to dinner and insulate myself at my table, surrounded by noise. I’ve done this often enough that the manager of Boston Pizza once picked up the tab for my meal. She lost her mom not long ago. It’s a club, of sorts.
That night I write, “This has been one of the hardest days of my life.” Under tremendous stress, my mother can’t hold a thought for longer than a minute. We review the stomach tube decision endlessly. He seems to be begging for permission to let go. She, meanwhile, can’t see how she’s cornering him.
I give myself a shake and make a list in my journal of seven things that went well today.
Nine days before he will die, he is no longer sure he wants the stomach tube. Mother and I argue on the phone over my role: to inform or advise. She insists I advise. I insist I will not. His nutritionist and his speech language therapist reassure me that he is perfectly able to make this decision for himself, and should. I explain to him what’s at stake again and again, each time sculpting the choice to its essence. Food and drink will inevitably lead to aspiration and death. The only unknown is how long it will take. A G-J stomach feeding tube may extend life. Nobody but staff will know the tube is there. Is the most important thing to be alive? Or is the most important thing to enjoy food in the time left? There is no wrong decision. You can still aspirate on saliva. Mouth care will be important.
“I can’t figure it out,” my father says. “I’m not sloughing it off, but I wonder what your mother thinks. I don’t have the energy to make a decision.”
I point out that it is heroic both to fight and to call it quits.
“I feel as though I’m letting everyone down,” he says. “You. Your mother.”
During the next few days, I find a patience in my Type A self that I never knew was there. We go back and forth: yes to the stomach tube, then no, then yes again. Then I do it all over again with my mother. She asks Daddy to tell her in his own words what he’s thinking.
“I’m deciding whether or not to pull the cork.” He has done his own work on sculpting the choice to its essence.
“But you’ve expressed a wish to come back to the nursing home,” she replies.
“My thoughts move from day to day.”
He hangs up and says, “I can’t take anymore, you can’t take anymore, let’s put the tube in and be done with it.” He tells me to go to the movies, that the debate is compromising my life and he wants it to stop. He asks me to inform my mother of his decision. She is pleased when I tell her.
That night I write in my journal, “Daddy is being very father-like today.” I’m happy about his decision, for a while. Then doubt crowds in. Was it right to make him decide? Have I lacked courage somehow? Would it have been more compassionate to give advice? Could I have lived with the outcome, if I had? I, who seek always to outpace regret and blame? He is unaccustomed to autonomy. It is probably the last thing he knows what to do with, as he nears the end of his life. But what he does know is his heart. He tells me repeatedly that he wants to die. The spectre of what Mother wants instead looms darkly. He needed an ally, me, to overcome her resistance. Did we both capitulate?
One of Daddy’s nurses is dismayed at his decision to accept the permanent stomach feeding tube. “They’re only doing it because they can,” she tells me. “Where’s the dignity, where’s the comfort?” That night the nurse finds my mother’s phone number on the paper napkin I keep on Daddy’s night table, and calls her at the nursing home to persuade her to stop her husband from going through with it. My mother is not functioning at a level where she can defend the decision. The call rattles her. The overnight caregiver I’ve hired to stay with Daddy reports to me that the nurse visited my father in the night to tell him they would stick a knife into him and the procedure would hurt. I sound alarms with the doctor. The nurse is taken off his case.
On Saturday September 24, 2011, seven days before he dies, I sign the consent for the G-J tube at Daddy’s direction, and feel surreal when I write “daughter” in the box denoting relationship. No time to analyze that now. He is given a transfusion to restore his hemoglobin and energy. I find out that Daddy’s blood type, like Mother’s, is O positive. I’m O negative. “Time to tell me the truth?” I ask him. He’s not up for jokes. Over the weekend, we go over and over how the stomach feeding tube works. I feel robotic.
Five days before he dies, I walk into his room at 6:00 a.m. He is scheduled to go into the operating room sometime that morning. He is awake and alert. “What does your mother think about all this?” he asks.
“She wishes she could have the G-J tube installed for you, so you wouldn’t have to.”
He admits he didn’t sit in the chair as promised after I left yesterday because he was too “whapped” out. We agree that whapped is a combination of whipped and whacked. The porter arrives to wheel him into OR. The disapproving nurse won’t look at me as we go past the nurses’ station. As we wait in the corridor outside the operating room, he reminisces about his childhood cat Knobby, a big calico with a white apron.
The surgery goes well and he’s out in under an hour. He needs pain medication, but they can’t use the new G-J tube to administer it for six hours. This makes the tips of my fingers tingle. I take shallow breaths. Highly tuned to his pain, I suggested when he was still in his room that they administer medication through the nasal feeding tube before they remove it. They didn’t. He naps, then wakes panting and shaking. His RN tells me it’s from the pre-operation sedative. Someone chooses this moment to mention that the intern, who has been with us from the day Daddy was admitted to hospital and who has been a comforting point of continuity, is off the case. What? I feel scared and alone.
The six-hour wait is finally ending but nobody on Daddy’s medical team has responded to the RN’s urgent call to approve orders for pain meds. I write in my notebook: “If they didn’t wield so much power, they’d hear more truths.” Daddy wakes, moaning. Everything hurts. I tell the nurse that I will personally wheel my father in his bed to Emergency so he can get the help he needs. He makes four urgent appeals for the medical team to respond. He’s in and out of Daddy’s room at ten-minute intervals, checking, listening, updating me and Daddy’s chart. I stop making eye contact. I sit rigid in a chair by Daddy’s bed and concentrate on breathing. We’ve all made such an investment in his recovery, Daddy included: are we going to fumble his care now? Seriously? Finally a doctor shows up, someone who was rotated off Daddy’s case a week ago. I start to cry when she walks in the door. The minute she signs off, the RN drops everything he’s doing to administer the pain meds.
When Daddy wakes, he says, “I can’t do this, I can’t do it.”
“Maybe we shouldn’t have done the G-J tube,” I whisper to the nurse.
“No second guessing,” he replies. “You can only move forward.”
In that one wide second, I realize guilt need not attach itself to me. The G-J had to be Daddy’s decision. I was wired from within to favour facts over opinions. While today was tough on him, I don’t think it means he made a mistake. The sedation, the surgical assault on his body, the lengthy withdrawal of nutrition and medication — these were bound to make him feel grim.
At 5:30 p.m., I leave a note for the RN thanking him for his extraordinary nursing. Forty minutes later, seated in a Swiss Chalet booth with my cloak of quiet pulled around me, I ask myself, why? Why have I invested weeks of daily ministration to a man so apart from me? Part of the answer is that I started. I made a commitment, built a dependency, created a sanctuary. You finish what you start. So did you need to prove something to yourself? “No,” I write in my journal. “I always knew I’d be there for my parents in a crisis.” But you yearned to know him better, thought your bedside support might be a turning point, as he must have thought when he floated his apology. So why haven’t you asked him how he feels about dying when he tells you he senses death brush against his face? Why haven’t you asked him how he feels about his life? Why are you, the irrepressible interviewer, silent? Stakes are too high, comes the retort. I’m safely over it now. Leave it be.
I arrive at the hospital at 9:00 a.m. He’s awake and querulous. Where am I? Why did the nurse have to be in my room so much yesterday? Can you get me some ice? Why weren’t you here with me in the night?
Staff tell me he slept well. He was given a sleeping pill around 9:00 p.m. and another narcotic around 4:00 a.m. No wonder he’s confused. He apologizes for wanting me here twenty-four hours a day. “Ignore me,” he says. Then, “Heidi, I’m scared. About tomorrow.”
He’s talking about his imminent discharge from hospital and readmission to the nursing home. I’m scared too. I explain that his care needs are not complicated and the nursing home staff have the skills to look after him. “If something happens, you’ll go right back to hospital.” I tell him he doesn’t have to be afraid of the night. He thanks me for every reassurance. We go over the G-J tube regimen again.
“So there’s no point my going to the dining room then,” he says.
Go for sociable reasons, I suggest. I remind him that the three men who sit at his table ask about him constantly.
Then our long-lost intern walks in. It’s not true that he was taken off Daddy’s case. I could hug him. He sets plans in motion for antibiotics, pain meds, Coumadin, oxygen, mouth care, wheel trans. He tells Daddy how amazing he is to have regained ground like this.
After he goes, I ask Daddy would he want to repeat all this if he were to aspirate again. He thinks for a few seconds, then says, “No, I would not.”
On the way back to Quality Suites, I stop at Sears to buy seven blouses for my mother and three bedspreads for her to consider.
During his last hours in his room, hospital staff drift in to say goodbye. The nutritionist and the speech language pathologist come by to tell me how impressed they are that Daddy ultimately had full control over his decision. I record this verbatim in my notebook. The Voyageur wheel trans arrives at 11:40 a.m. “Put your face to the sun,” I say to Daddy as he’s wheeled outside. “Say, hello world. I’m back.”
I beat the driver to the nursing home and race to the second floor to collect my mother so we can welcome him through the front door when he arrives. After he is wheeled to his room, four staff on his Apple Blossom unit converge around both sides of his bed with a boisterous and affectionate welcome he cannot help but know is genuine. I look at Daddy’s face through my tears and he is smiling. His smile lingers for five minutes after they leave.
“Wow,” says Mother. “I’ve never once had such an experience.”
It is my second-last night at Quality Suites. I am so whapped out I ask Phil to defer our nightly call until tomorrow.
When I enter the nursing home at 9:30 a.m., Daddy’s door is shut so staff can give him a sponge bath and my mother is still in bed. “I do not understand why staff are being so antagonistic toward me,” she says. “You need to talk to them about it.” The issue seems to be staff’s determination that she rise and eat on their schedule. I make a note to discuss with the resident care coordinator my mother’s right to make bad choices.
At lunch, Mother eats chalky ice cream and asks me what I think about in the middle of the night. “Phil dying,” I reply. “Death. Who will look after me one day.”
“Too bad there’s twelve years between you and Phil,” she says. “Someday there will be a pill for that.” We laugh.
We visit Daddy in his room. We rehearse him on where his call bell is. He makes three pathetic pawing motions in the air, pretending he can’t find it. I mentally roll my eyes. I know he’ll find the bell just fine once my mother is out of the room. At 2:00 p.m. I leave and decide to celebrate with a meal for one at the Keg. The restaurants dial back my loneliness.
I pack up my room at Quality Suites and load the car. Home, I think. I’m going home. Worry gnaws holes in my happiness.
Daddy, in corduroy pants and a shirt for the first time in a month, is napping on his bed. I have an agenda of care needs to discuss with staff: pain, sleeping and depression meds, INR, head wound, pharmacy arrangements, G-J tube protocol. They ask me to sign a consent to accept the risks if he decides to eat and drink, a choice I’ve made sure he knows is his to make. It’s late morning when I finally go upstairs to say goodbye to my mother. I stop by the nurses’ station to remind staff to stop requiring her to take a full bath. All her life she’s taken sponge baths.
I return to say goodbye to Daddy, who, other than telling me three times to be careful on the highway, is quiet. “You look depressed.”
“I am,” he says.
“I’m sorry.” I kiss him goodbye, tell him I’ll be in constant touch, ask him to promise he will try hard with his physio.
He doesn’t say he loves me.
As I back my way out the door, four care staff crowd around his bed to fuss over him.
“Look at you,” I cry. “Four women at your side.”
“Five, including you,” one of them says, smiling.
Daddy dies alone in his bed at 1:45 a.m. on Saturday, October 1, 2011.
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.