As I sit there in the hospital waiting for the nurses to give my father a sponge bath and change his sheets, I’m thinking about how much kinder it would have been for my dad — and all of us — if he had died.
It probably sounds like a callous thing to say. But instead we’ve been losing him progressively, watching Parkinson’s disease and dementia rob him of his body and mind.
I sit there with him as he asks the same confused questions over and over and his anxious tremor shakes the hospital bed. I feel numb sitting by his bedside. Then, when I leave the room to give them privacy while he’s cleaned, I see a woman with a newborn baby against her chest and burst into tears.
Grief is strange.
The next day, my dad finally gets out of the hospital, which means going back to the memory care facility we moved him into a few weeks ago. Not being stuck in a hospital bed is a relief, but this is no happy occasion. We don’t have those with my dad anymore.
“Nobody gives a fuck about me,” he says to my mom when she ― again ― explains that she is going home to sleep and will be back in the morning, and the cruel irony of his words makes me angry at him. My mom’s life has become 100% about him, and it’s close to that for my brother and me.
Dad falls again the first night back at the facility. I told my friend Andy about this the following day and he said, “Aren’t they supposed to take care of that there?”
“Nope,” I said, “He still falls. We just hope they get there quickly to help him up.”
“What the fuck is the point of him being there then?” he asked, and I had no answer. I don’t know what the fuck the point is, other than the fact that my mom can’t handle things at home alone and this is the only other option.
Andy lost his own mother recently to pancreatic cancer. She was lucky enough to die at home surrounded by family, but only because her family took around-the-clock care of her. Hospice nurses came in to give meds and not much else.
Andy was doing the most personal things for her in the end. Bathing her. Helping her go to the bathroom. His mom was small and he could carry her. This is not the case for my dad. My dad is too big to carry, or even to get up off the ground, and my parents have already fallen together more than once. It’s dangerous for him to be at home. But it’s dangerous where he is now too. We have no good options.
We have no good options at the end of his life. My father could have a month to live or five years to live, but he is unquestionably at the end. After a few months of flailing alone, my mother made the unimaginable decision to move him to a home. What other options does she have? He needs 24/7 care and it’s too expensive to have someone come live with them full time to provide care. So her options are to keep him at home and hope they don’t both break a hip, or place him somewhere away from home.
Placing him in the memory care facility comes with a huge financial burden. Most of these places don’t take insurance for the first three years, and then only if you’ve exhausted all of your assets. My mother can afford to pay for this place for a couple years, but it’s exorbitantly expensive and most people don’t even have this option. Perhaps some people are just hospitalized for the last stage of their lives, while others drain all of their family’s time, energy and resources, either at home or in a home. It’s not their fault. They are not the problem. Countries with socialized medicine at least do not require a family to go broke caring for their elders.
“You would think this is the first person with dementia that has ever existed,” Andy said. “How can no one know what to do?”
Because we, as a culture, don’t care, is the short answer. Because our health care system is not about health ― it’s about profit, just like everything in this country.
We need more options. And among those options needs to be the choice to die. This is the choice I want to have. This is the choice my mother wants to have. This is the choice my dad should have had when he was of sound mind and could say, “I don’t want to live like that. If that time comes, please let me go.” My parents never had the tough conversation about what to do in this kind of situation. My dad never explicitly said it to me, but I know he wouldn’t want to live like this.
Washington, where we live, has a “death with dignity” law where patients with a terminal illness can request lethal drugs. According to FindLaw, “Individual hospitals may prohibit participation in euthanasia, but must clearly state their policy ... The statute requires a series of requests and waiting periods, while requiring the patient to be of sound mind and capable of clear communication.”
Neither Parkinson’s nor dementia are considered terminal. My father is also not of sound mind or capable of clear communication, so he does not qualify. And we cannot make the choice to release him from pain and confusion because it would be considered murder.
Why is our goal to live as long as possible? Is it fear of death? Or is it truly just a cynical way of making billions of dollars for the pharmaceutical and senior care industries? I wish I were more naive, but I’ve come to believe it’s the latter. And if your life is miserable and unlikely to ever improve, is that really living?
I think about the pets we’ve had to put to sleep. I think of my childhood dog, Greybeard, looking up at me with his soulful eyes on his last day of life. He couldn’t walk, he wasn’t eating, he was in pain. I think of our cat, Mao, who was unable to control her bowels and had lost several pounds in a matter of months. Her kidneys were failing. We put these loved ones out of their misery. It was awful ― and it was the kindest thing to do. I know my father is not a pet, but why don’t we give our human loved ones the same gift we give the animals we love?
My father can’t go to the bathroom by himself. He can’t shower by himself. He doesn’t know where he is or why. He can’t have a conversation. He is in constant pain. He lives in a completely alternate reality that the rest of us have no access to. He falls when he tries to stand up. He is confused, agitated and sometimes angry. He has also become childlike and often adorable, still cracking jokes and making people laugh. Like me, this is his favorite thing to do. This makes our situation even more confusing. But one thing is absolutely clear: He is not going to get better. He will never be the person he was again. And though he is technically alive, I challenge anyone to claim that he is actually living.
If we had the option, my family would choose death for my father. A gentle drifting away. An end to his confusion, pain and lack of dignity. And while I know the grief of losing him will destroy me, watching him suffer and continually losing him to these cruel diseases ― watching him continue to live with no quality of life ― is worse.
Jen Freymond is a writer, podcaster, mother, educator and total jackass from Olympia, Washington. Her work has appeared in McSweeney’s, The Offing, The Belladonna, Points in Case, The Rumpus, and many more places. Her podcast, “I Never Saw That,” is based on the two years she spent in a therapeutic boarding school in the mid-90s and the pop culture she missed as a result.
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