My father is dying. I suppose we all are, but he is actively closer to death than anyone else I know.
My father began declining in 2020. First, his body started to give up on him. He has Parkinson’s disease. One day he tried to get out of bed and his legs didn’t work, so he fell out of bed, and ended up in the hospital. Another day, his right hand stopped working, so he could barely use his phone or computer, his only points of contact with the outside world (he’s almost entirely lost his ability to write), making him further isolated. A few years after his Parkinson’s diagnosis, my father’s mind started to give out on him, too. He developed dementia, a diagnosis he steadfastly refuses to admit or discuss, which makes taking care of him even more challenging.
As an academic and intellectual, this is a perceived humiliation my father cannot bear. He has fits of anger, confusion, fear, frustration and disorientation. I spoke to him last week while he was in the hospital for yet another issue (a now semi-regular occurrence) and he started shouting, “I don’t know why the hell I’m here! Get me out of here, talk to someone!”
This is an incredibly difficult piece to write — one I almost didn’t.
To make matters more complicated, he now lives in Pakistan, where he is from, while I live in the United States and my mother, who co-caretakes with me, is based in South Africa. He lived in the States for most of his adult life, but we simply could not afford the cost here of the full-time care he needs. Even with the privilege of being upper-middle class, the more than $20,000 a month for full-time care was way more than we could afford, and this is not even for any specialized care.
This is an incredibly difficult piece to write — one I almost didn’t. There are serious ethical implications to consider as I discuss my father’s health. But I have ultimately decided to share my experience because I think it’s important to have conversations about the isolation and inhumanity of the end-of-life care systems that fail us. These are conversations we too often turn away from out of fear and discomfort. The intention here is to honor my father because approaching death with dignity honors the dignity of his life, too.
So, as I watch my father’s body and mind slowly and increasingly fail him, and I see the fear and suffering he endures on a daily basis, I can only hope that the end of his life is not drawn out.
I spoke about this with a dear friend recently, about how excruciating this process has been to witness and partake in, about our caretaker burnout, about the many, many systems that fail the sick and elderly, about how each week there is a new crisis. She gave me Atul Gawande’s book “Being Mortal: Medicine and What Matters in the End.” Gawande’s central argument is that both the medical community and modern society are woefully ill-equipped to deal with mortality in a dignified way and that the most humane thing we can do is to focus on the quality of life of the elderly and terminally ill, rather than longevity.
As I explained to my friend, I’ve been sitting with an intense polarization around how I think about my father’s death: some parts of me wishing the end of his life is not drawn out, while others feel guilt and shame for wishing that my father dies quickly. Gawande’s book has been a profound balm in this process. “Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need,” he writes. “Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology, and strangers.”
Medicine, technology, and strangers. This trifecta now rules my father’s waning life. His full-time carers are strangers to him, and he to them. And some combination of technology and medicine is helping to prolong an existence full of fear and suffering.
What I have ultimately come to realize is that the only true solution here is not a medical one but a spiritual one. Death is too big for the human mind to hold. And grief, when we try to hold it alone, tears away at our lives. The only way any of this becomes manageable, in my experience, is if we hand these over to something bigger than ourselves. My faith is a big part of my life, so, for me, that something is god. For someone else, it might be a different spiritual belief or it might look like surrendering to the present. But the answer is certainly not in the illusion of control that medicine alone can create for patients and their families.
Mortality — our own and that of our loved ones — demands that we meet it with expansiveness in order to stay sane, otherwise our fear (an inherently constricting emotion) of death takes hold. Modern medicine tends to make everything smaller, with its hyperspecialization, its focus on how things are working at a cellular level. My father has a cadre of doctors, each focusing on a different part of his body.
I do not mean to dismiss the miracles of modern medicine, which have saved me and my body in so many ways over the course of my own life. But I invite us, like Gawande, to consider when the most loving thing we can do is to not interfere.
I wonder how different the end of my father’s life would feel to him if everyone around him was focused on offering him spiritual care rather than on the technical measures to keep him alive for as long as possible. I have tried in my own ways to reorient our approach to his care, but our collective resistance to mortality — sometimes my own included — and the concomitant systems that do exist to take care of the elderly make it feel impossible sometimes. And I can see his body and mind desperately attempt to prepare him for death even as parts of him, and everyone around him, resist it. This untended anxiety is leaking out of him. He calls me in the middle of the night when he can’t sleep to apologize for all the ways he failed my brother and me when we were children, his voice scared and desperate as he attempts to clean his fading conscience as much as he can, while he still can.
He calls me in the middle of the night when he can’t sleep to apologize for all the ways he failed my brother and me when we were children, his voice scared and desperate as he attempts to clean his fading conscience as much as he can, while he still can.
Interventions of modern medicine and carers to prevent falling (a common cause of death for people with Parkinson’s) could potentially prolong my father’s life for some time. He is in that precarious place that the elderly often find themselves in, where he could die in six months or in six years. But to what end are we prolonging his life? Our collective approach to end-of-life care is driven by distorted priorities, which come at great personal and financial cost. “The soaring cost of health care has become the greatest threat to the long-term solvency of most advanced nations, and the incurable account for a lot of it,” Gawande notes. “In the United States, 25 percent of all Medicare spending is for the 5 percent of patients who are in their final year of life, and most of that money goes for care in their last couple of months that is of little apparent benefit.”
In his book, Gawande anticipates criticisms of his argument, suggesting some might fear that it “raises the specter of a society readying itself to sacrifice its sick and aged.” He aptly responds, “But what if the sick and aged are already being sacrificed — victims of our refusal to accept the inexorability of our life cycle?”
There is a strange paradox to death. It is at once incredibly straightforward and deeply complicated. Maybe this is what separates the act, an uncomplicated one, from the process, which is almost always complex.
And if there is one thing I’ve learned watching my father disintegrate, it’s that our various approaches to end-of-life care are not working. The helplessness and fear is consuming him. It is out of a deep and abiding sense of love that I hope his suffering is minimized and his life is brought to a merciful end.
Noor Noman is a writer focused on culture, race and LGBTQ issues.
