Today's Grief Series contributor is Debra from the blog Just Jack (I love that name). She is sharing a story that many of us have faced or will face soon as our own parents are aging. She writes with raw honesty about flying to her father's side as he faced a life-threatening illness. Her story is gripping, and I thank her for sharing it with us. A version of this post originally appeared on Woman Around Town.
Writing this piece is difficult, because words cannot adequately express how I felt as I walked into the Central Florida intensive care unit where my dad lay, possibly dying. How do I find the “right” words to describe, on a visceral level, what seeing him in that condition did to my soul? Was I changed that day, on a cellular level, much like the nurses told me my dad was due to his disease? All my memories of us together when we were both much younger – camping, fishing, going to the movies, laughing – flew through my mind like a faded home movie as I stared at him in shock, realizing that those times had long ago passed from this world. So I’ll just write and hope that the words that do come to me do justice to us both.
Writing this piece is difficult, because words cannot adequately express how I felt as I walked into the Central Florida intensive care unit where my dad lay, possibly dying. How do I find the “right” words to describe, on a visceral level, what seeing him in that condition did to my soul? Was I changed that day, on a cellular level, much like the nurses told me my dad was due to his disease? All my memories of us together when we were both much younger – camping, fishing, going to the movies, laughing – flew through my mind like a faded home movie as I stared at him in shock, realizing that those times had long ago passed from this world. So I’ll just write and hope that the words that do come to me do justice to us both.
Less than 24 hours earlier my uncle advised me that my father had been taken by ambulance to a local hospital. They just happened to be on the phone together when he heard my dad gasping for air. Within hours my combative, stubborn father (he did not want to go to the hospital) was in the ICU, sedated with Propofol, his hands tied down by his sides. I wasn’t listed as an emergency contact, so when I called the hospital for information, it wasn’t easy to get. After I supplied them with his birthdate, we got about this far:
“Do I need to come down there?”
“Your father came in with severe respiratory distress. It wouldn’t be a bad idea.”
My father suffers from COPD — Chronic Obstructive Pulmonary Disease — which is a leading cause of death and illness worldwide. It is a progressive disease, punctuated by flares, or exacerbations, that can kill. My dad smoked for 50 years (he’s nearly 68 now) and, although he’d said he quit, apparently that was not the case. He’d begun to give up on life, so I suppose he figured if he resumed smoking, it would hasten the end. And that night, it nearly did.
Seven years had passed since I last saw my father. My parents divorced when I was two, but my dad had weekend visitation rights. Growing up, we were very close but once I turned 18 and moved from Maine to New York for college, he moved down South. Although distance and lack of money kept us from seeing each other regularly, we remained close – by phone and snail mail. I knew if I didn't go see him now, I might never have another chance.
I immediately flew down to Orlando, rented a car and drove an hour and a half to where my dad lay, unconscious. How I accomplished all this in such a short amount of time, my head throbbing and my heart scared, I have no idea. I also grappled with feelings of guilt for spending money I did not have to travel down there, and leaving my husband and toddler son behind. And I felt angry with my father for continuing to smoke. ..and for not asking for help sooner.
When I finally walked into the ICU, my father’s friend, whom I’d apprised of the situation prior to my arrival, was sitting at the foot of his bed. We’ll call her “Angel.” As soon as I saw Dad lying there, my feet stopped moving. It was as though I were stuck in a puddle of super glue. A friend of mine had told me that this trip would “test your mettle,” and he was right; I immediately hid behind the curtain and cried.
Angel walked over to me. I composed myself and together we walked over to him, my eyes scanning his emaciated, 5’7” frame. The man whom I hadn’t seen in seven years lay hooked up to a ventilator, oblivious to the fact that I’d just flown there from Connecticut. He had no idea his “little princess” was standing by his side. His tongue hung out of his mouth like an exclamation point. His skinny leg (he now weighed 107 pounds) jutted out from beneath his bed sheet, his dirty toes straddling the bedrail. Technically we’re all dying, really, but seeing my father looking so old and frail drove home the fact that this is not a man who has the gift of time. The fact that his mother, father and brother all died young was also not lost on me. Suddenly I, too, felt much older. Mortal.
At 36 years old, I was facing the imminent loss of a parent to a cruel disease that, according to his nurses, pulmonologist and the dizzying amount of literature they handed me each day I was there, will end his life.
“Perhaps not this time, or the next time, but eventually, COPD will kill him,” they’d said.
On Friday, Angel and I stood there as the nurse told me more things I did not want to hear.
“Your father suffers from encephalopathy,” Friday Nurse said, explaining the brain damage that occurred and that it could either be reversible, partially reversible, or permanent.
The information overload became too much for me and I turned around and looked out the window. I stared at the plethora of palm trees, crying as the nurse continued talking to Angel and, presumably, my back. I also marveled at the juxtaposition of this difficult news set against a backdrop so inviting, so verdant. Shouldn’t it be overcast and drizzling outside? I thought.
That night at the cheap hotel in which I found myself for the next few nights, I spent a lot of time on the phone with various friends and family for comfort. I’d been in Florida for a day-and-a-half and Dad still hadn’t regained consciousness. Every time the doctors tried to rouse him and remove his ventilator tube (which apparently can’t be done unless a patient is awake), my dad’s body flailed “like a wild man” and he had to be sedated again. I’d asked them to wait for me before trying this maneuver, so I could try and “assist” with moral support, but my request fell on their proverbial deaf ears. Before I left the hospital Friday night, I reminded them that Saturday was my last day there and to please wait for me.
I knew Dad would be amenable to coming off the tube if I were there because of something that had transpired earlier on Friday. We were alone and I, exhausted but unable to nap at the hotel because I knew these might be the last days I’d ever spend with him, held his hand and stroked his hair. As I did so, I realized I’d done the same thing to my own three-year-old son when he was hurting. It came naturally.
I spoke calmly but firmly to him, telling him that I was there. His eyes began to move under their lids and flickered open ever-so-slowly; it was like watching a newborn foal stand for the first time. I willed him to somehow communicate with me, which of course he really couldn’t do verbally with a tube down his throat. He stared at the ceiling, unable to turn toward me. But as a tear fell down his cheek and his breathing changed, I knew he was happy I was there.
Sleep soon overtook him again.
On Saturday morning – my last day in Florida – I was in the I.C.U. as early as they’d allow. I held my father’s hand as he finally awakened from the Propofol. He looked panicked and mouthed, “don’t leave.” I could see the fear in his eyes, the confusion.
“I won’t leave, Dad.”
The doctor told him to exhale as they removed the tube, which was then followed by a lot of coughing up of phlegm. At one point my dad handed me a tissue filled with it, and I threw it away, not letting him see how it made me dry heave. The whole process was disturbing to me because my father wasn’t able to follow directions well and continued to try to speak as soon as the tube was out, even though they repeatedly told him not to. His voice was raspy and unrecognizable; it scared me. He also laughed repeatedly for no reason. I told him that if he didn’t stop speaking and laughing, they’d have to sedate him again, and we wouldn’t be able to have a proper visit. That did it.
I’m happy to say that the rest of that Saturday was what I’d hoped we’d get all along: time to catch up, for as long as he was up for it. What we said to each other is not something I wish to express in this essay; it’s only for me and my immediate family to know. But for me, that day also gave me a feeling of accomplishment…and closure.
Soon after my father’s release, and to the shock of many, he agreed to go to a rehabilitation center, where he stayed for several weeks. There he got exercise, solid meals and medical care he’d never really gotten before. Medicare and Medicaid picked up the cost, which was a relief to me, since I’m really not in the position to help him out financially. He’s in much better spirits now and seems determined to finally meet my son. His upbeat outlook reminds me of Dylan Thomas’s villanelle: I feel like Dad will “not go gentle into that good night,” but instead “rage, rage against the dying of the light.”
Although my father’s back home now and a nurse no longer checks on him, Angel continues to assist both me and my father in making him comfortable. I’ve also advised him of senior services in his area, where he can have free meals and socialize with others. But he’s not only stubborn, he’s a tad misanthropic. Dad likes his solitude. It’s his choice whether or not to take advantage of these services, and I know there’s only so much I can do, but so far, I feel like I’ve done a lot. I think I can live with that.
Since I last saw my father on those difficult days in
October 2012, his health hasn't improved.
Since he lives alone and keeps things close to the chest, I really don't
know how much worse his COPD has gotten.
He was hospitalized twice more (that I know of) in the
spring of 2013. These ICU readmissions
took place a month apart, the second one over Father's Day. His friend,
"Angel" called me on Father's Day to tell me. She also told me about the month
before. He'd told her not to worry me,
since he didn't want me coming down to Florida again "for no reason."
Dad recently had a little family reunion with his father,
brother and sister in Florida. They told me he was looking better, but he does
still struggle to walk; he gasps for air.
He's also told me himself that when he goes shopping, he uses a cane to
get to the front of the store, and then a motorized shopping cart to do his
shopping. It kills me that he struggles so, yet there's just not much I can
do. His denial is a large part of the problem.
I call Dad regularly to check in on him, sending him
pictures and drawings done by my 4-year-old son, Jack. Whenever my dad doesn't answer the phone,
though, I always wonder if he's still alive. It's hard to know the effect
that's really having on my psyche.
Ms. Kirouac enjoys being strange and aloof, sitting in artsy-fartsy theaters with blue-haired old folks (it makes her feel young and hot),
tripping down the stairs while holding her four-year-old son’s hand, and
listening to Supertramp B-sides.
In the past, Debra worked directly with singer-songwriter Michael Bolton and TV personality-entrepreneur Martha Stewart. That’s all she has to say about that.
Ms. Kirouac has a B.A. in Communications, and just realized this is starting to sound like a cover letter for a job. But she does – she has a B.A., although it’s somewhere in the basement, stuffed in a box with other useless bric-a-brac.
If you’d like to read more of Debra’s work (who wouldn’t?!),
check out the hyperlinks below:
