I’m taking the liberty of digressing from the topic of education to share my thoughts on a situation that has consumed every day of my life for the past seven weeks. I wrote this about a month ago, and though some of the circumstances have changed, the trajectory remains the same.
Dying in America
We brought my father home from the hospital two weeks ago, so he could die in peace. I’m told once the death rattle comes it’s a matter of hours and possibly even a few days. My father has had the death rattle several times and then it goes away. We have had more than one deathbed scene where all the cars pull up, everyone runs into his room to stand by his side; we are circled around his bed and we think he is going to take his last breath, but he doesn’t. He bounces back and asks for something to drink or to get out of bed. I feel like I’ve said goodbye to him at least five times. My father has an iron will and though, according to medical expectations, he should have been long gone by now, he still carries on.
The grandchildren have reacted in different ways. One, in particular, Ibrahim, stays by his bedside when he visits and holds his hand, giving my dad great comfort. Another, my son, Omar, has his daily bounce into the room where he bolts out, “Grandpa, how are you?” I think my dad feels somewhat relieved that, at least where this kid is concerned, nothing has changed. A young grandson, Matteo, was afraid to see him, but he has since gotten used to the idea that Grandpa is dying. Now he acts as his advocate. If Grandpa wants something that may not be possible, like getting out of bed when he seems like he is about to take his last breath, he tells us we should honor his last wish. He’s right. Sometimes children see things so clearly.
We are so divorced from death in our culture, and while I’ve been aware of this for a long time (who isn’t?) I’m just now beginning to realize the extent of the denial of death. Death is something we fear, something we protect our children from, something we keep behind closed hospital doors.
My father begged us to get him out of the hospital, so my brother and his wife kindly prepared their guest room and to their home he went. He was convinced they would kill him in the hospital (they nearly did, twice), and we certainly didn’t want him to take his last breath there. But what a racket— the business of dying in America. There is a lot of money to be made by keeping people alive beyond their time, by reducing them to nursing home status, by over-drugging them so they miss the experience of the greatest event of their lives. Have I mentioned the corporate (funerary) exploit of assisting the dead to their final resting place?
The closest thing to death, as far as I can see, is birth. There are the emotional preparations, the labor pains, and the arbitrary timings that no one can predict. There are the endless phone calls from anxious family and friends: “Has the baby been born yet?” It isn’t any different with dying. Rather than phone calls, now there are usually text messages from concerned family and friends inquiring, “How is he?” I struggle to reply because the logical response would be, “He hasn’t died yet,” but we have a lot of niceties around dying and death and though it’s fine to say, “The baby hasn’t been born yet,” it’s socially unacceptable to be straightforward when it comes to dying. “He’s declining,” is about as direct as we’re allowed to be.
I appreciate the people who only ask after my wellbeing. My reply is fairly standard, “I’m hanging in there,” I tell them. I am, by a very thin string. But there have been days when that string has broken, and I’ve come crashing down.
The pains that accompany death are also very similar to birth pains; the unendurable pain that helps you let go of this world and all that you love. But in the hospital, pain is to be avoided at all cost. Instead, they hook you up to morphine, which hastens the whole affair, just like they administer epidurals to numb the pain, or induce labor with Oxytocin to force the baby out before its time. Of course, many times medication is needed, but sometimes it’s nothing more than a convenience and the benefits just don’t outweigh the harm.
In the hospital, they gave my father morphine and I saw him enter a stupor. For 12 hours I kept telling the nurses something was wrong and demanded to see the doctor. They kept insisting this was normal. Finally, threatening to pull the line myself, they removed it and he slowly regained his consciousness. Now, we limit his morphine to those moments when he asks for it, the moments when we try to do everything we can to make him comfortable and he still isn’t comfortable. Sometimes he has morphine at night and sometimes he doesn’t have it for days. My father never took drugs, and he prefers not to take them now. What priceless moments we have with him because he is lucid and present, that is when he’s not sleeping. He sleeps a lot now.
Then there is the task of preparing oneself for the inevitable moment of truth we must all face. I was against telling my father his condition was hopeless, but my siblings decided to tell him. I believe that people come to this realization in their own time. Who can be slowly dying and not know it? I liken it to a woman who knows her husband is having an affair. When it is finally out in the open the woman always says she knew all along, she just could not allow herself to accept it until she was ready to. Someone had stolen her husband’s affection like death steals our lives. We accept the realization when we are prepared to accept it; it isn’t something that should be hastened for us. When the reality is imposed it becomes its own death sentence. “You have two weeks to live,” the doctor pronounces, and the person is dead the next morning. I have heard this story, first-hand, too many times. My father’s will is slowly slipping away, an iron will that for 89 years was indomitable.
One day, when we thought the end was close, we had to make preparations to bury my father. We found a beautiful cemetery that was near the ocean–my father loves the ocean–so we were happy to find such a place of repose for him. But the plots in the section we wanted were sold. Miraculously, through a family connection we were able to buy one from a third party. My father despises the corporate takeover of common decency and so do his children. Our father’s burial will not be a corporate affair, if we can avoid it. Did I tell you that one cemetery offered us a discounted price for a plot if we bought it before my father passed?
We don’t want our father lingering in a cold morgue for days, alone, and then have him transported to the cemetery by perfect strangers. So, when the time comes, if all goes as planned, we will wash his body at home and transport it ourselves. This requires a transportation permit and, of course, a death certificate. These documents the funeral home usually takes care of, but they won’t help you if you don’t take their full service. I called around to different funeral homes until I found a kind gentleman named Rodney, in the next town, who was willing to help me. When it came time for payment, he wouldn’t accept anything from me. Who would have thought a sales rep in a funeral home would be the one to remind me, throughout all this business, that there are still good people out there?
My father defied all odds in living, at least according to current medical research. He had an Irish temper, so calm was not always the name of the game; he ate lots of meat and potatoes and refused to eat anything green, and he seldom exercised after the age of 60. As he defied all odds in living he is defying all odds in dying and he looks beautiful doing it. It has been healing to sit by his side, day after day, and share these last days with him, not hooked up to tubes and not being constantly bothered by health care professionals who have to follow routines for a “one-size-fits-all” exit. My father is leaving according to his own wishes, in his own time. He is surrounded by family and friends, and there is a profound awareness of the dying process that hospice care has made possible. It’s a natural way to go and it’s an unforgettable lesson in caring and kindness and dying that benefits every child who witnesses.
One of my father’s favorite poems wasStopping by Woods on a Snowy Evening, by Robert Frost. He was particularly fond of the line, “Whose woods these are, I think I know.” It was the “I think” that stood out for him. The sleep usually comes before we’ve reached our destinations, at least as we planned them. In my father’s case, he was in the middle of writing a book about the true authorship of Shakespeare’s plays and about locating the manuscripts’ whereabouts, which he believes are buried in Oak Island off Nova Scotia. I was looking forward to reading his book; now, I will do my best to finish it for him.
My father passed away at 8:00pm last night, thirty minutes after I finished working on this. He was a brilliant man with a heart of gold, and God generously gave him the best of endings. May you rest in Peace, dear Father.
Elizabeth Y. Hanson works as a consultant, speaker, and activist in the alternative education movement. For more information about her work, please visit: http://www.elizabethyhanson.com
This piece originally appeared on her website.