“I want to go home.”

This is the response my father gave when asked what he wanted for his 70th birthday. None of us thought he would live to celebrate the day. It had been almost exactly five months since his doctor said he only had three or four months left. Always the overachiever, he had even gone as far to prove his doctor wrong.

But his birthday wish on this particular day was bittersweet. Diagnosed with idiopathic (ie, no known cause) pulmonary fibrosis in the fall of 2015, he had spent the past three and half years slowly fading into another person. His condition was not curable, with the life expectancy after onset averaging three years. The strong, rarely emotional, list-checking, numbers-driven dad I once knew had transformed into a frail, pale, often confused and now anxious terminal patient. He didn’t look the same. He didn’t sound the same. This “disease process,” as he called it, had taken over his body and, more importantly, his time.

When you mention any type of lung disease, people often assume that the person chain-smoked. My dad has never inhaled a cigarette in his life. Sure, he isn’t the healthiest of men—he was never one to exercise unless that meant mowing the lawn or carefully sculpting his garden, and he did not spend his days consuming what one might call a heart-healthy diet, favoring bacon over veggies any day of the week. But he worked hard—serving the government for 30-plus years before retiring early at age 55, coaching rec soccer for my brother and me, managing the household finances and fix-it projects—and he planned to spend his retirement years traveling as he had once done as the child of a Navy captain, watching his grandchildren grow, and enjoying the simple pleasures of life.

Angie and her father, 2017.

He had watched his own mother fade away due to a lengthy battle with Alzheimer’s and was determined never to end up in a nursing home or attached to IVs and wires. He urged my brother and me to put him in a wheelchair and roll him out a window if he ever got to that state. And yet, here he was, bound to a bed, oxygen tubes around his neck 24-7, catheter lines running underneath his loose clothing. Dispersed around the room were portable tanks, a scooter, a wheelchair, a meal tray, and even a home port-a-potty contraption—all used over the prior months as his disease led him down one stage of inability to another and another. The one thing he, and we, were grateful for was not to be in a hospital. My dad had chosen the route of hospice care so he was able to be at home—but the vision and experience he was trying to escape were not that far off.

Going Home…to Indiana

When it comes to hospice, end-of-life care, and simply growing old, people often talk about “dying with dignity.” I have read the articles, listened to the podcasts, and bookmarked the quotes in hopes of turning this inspiring mindset into reality. But I can tell you there is no dignity in dying. I have seen it invade. I have seen it walk all over the very steps taken to prevent its existence.

They say the body returns to its nascent state when it is near death. It walks slowly back to a time of unconditional need. And yet, the mind, the mind stands still trying to maintain its position, its control. The mind sees the demise. It feels the intrusions. And in an attempt to block the inevitable, it kicks and hits and spits at all the attempts made to knock it down, until it is so weary that it twists itself up and closes the door. Only once in a while, do we get to peek past that door and see the person who was once in control, the person who was once free of their diseased state.

And this brings me back to the beginning of my story. Freedom. This is what I think my father meant when he said he wanted to “go home.”

Technically, he was at home when he voiced his birthday wish. He was lying in the hospital bed brought to us by the hospice team, with his wife of 46 years playing the role of sole caregiver, his treasured dog at rest by his swollen, blue-ing feet, his grandchildren at play in the next room. So where was “home” for him, my mother asked?  

“Indiana,” he said. Indiana was 600 miles away. It represented his youth, a state he had lived in as a child while touring the world as part of his father’s service to the country. He hadn’t set foot in the state in over 60 years. And yet, as his body and mind began to accept what was coming, this was the place he wanted to return to. This was his home.

My dad had often shared stories about his time in Indiana, living on the Naval base with un-treaded woods behind the campus housing. He talked of exploring the stream at the edge of the trees, playing bows and arrows or hide-and-seek with his friends, and of simply being free. Free from the hustle of the big cities (he never loved the rush of the city the way I do), free from the nagging calls of his parents, free from the schooling that awaited him each morning.

This was the place where he broke his first bone, telling it proudly, after running too quickly down a hill. This was where he caught his first big fish with his father and older brother. Indiana held memories that were a far cry from the suburban life my father later led as high school and college student, as a young government worker, as a newlywed and then father to his own children. His words were both bitter and sweet for two reasons.

First, I couldn’t help but feel a little sad that he didn’t consider his current home, “home.” He was, after all, with us—those who knew and loved him the most. Perhaps, I thought, as the body and then the mind return to their early state, they desire to regain the innocence that once brought them joy. The soul seeks the fearless curiosity and boundless hope of its childhood. And this made me hopeful because I knew at that moment that my dad was going to a good place after all the suffering ended, and I knew exactly where he was going: Indiana.

At the same time, his words told me that he was now ready. He was ready to stop putting up the fight against the very disease that snuck in and possessed his body when he least expected it. After months and months of denying, fearing, even anticipating, his death, I knew that he was now ready to give in and that I had to let him go home.

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See Part 4, the final installment of this series

On the Other Side of Grief

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Last Updated: Sep 6, 2019