My mom died four months ago. Did I mention my Mom died four months ago? I was with her in the last two weeks of her life while she was on hospice. When I say on hospice, I want to be clear the term hospice does not mean all-encompassing care by an outside agency while the loved ones hold the dying person’s hand and reminisce glowingly about a life well-lived.
Hospice care is covered under Medicare with it paying an average of $153 per day, per person, in 2016 to cover hospice care. Hospice care is focused around keeping the patient at home, and with the understanding the patient will be kept comfortable but is no longer pursuing life-saving interventions to stave off the inevitable. Hospice aims to keep the patient comfortable (with lots of anti-anxiety drugs and powerful opiates).
The inevitable, and as many have said, is that we all die, so we might as well be as comfortable as we can be in the event of this. Death. The event.
My mom was only able to talk to us the first few days into hospice. She also had stroke-related dementia in addition to the dementia she had already been suffering in the last two years of her life. I know it’s redundant for all of us to read another first person narrative about someone’s loved one dying from dementia as there’s so much written about it at this point, well, one might think, what is really the point of writing about it? Pain drives you to do things you know are redundant and perhaps close to insane. Did I mention my Mom died four months ago?
After my Mom died, we had a day to plan her funeral where our family dynamics came into quick focus even more than they had when she was dying. Our family dynamics could be summed up in a theory I call “Survivor Island Grief”.
The show Survivor has been on for over twenty years and counting. The first show aired May 2000. It is produced by Mark Burnett. You might know his name as the producer of his other show, The Apprentice. A recent piece in IndieWire has a pretty apt description of Burnett, ‘There are many people to blame for the cataclysm that has been the Trump presidency, but few not bearing the family name should shoulder the burden more heavily than revered reality TV producer and Trump image revitalizer Mark Burnett. When he built a reality series around the idea that Trump was a wealthy, successful, savvy businessman, Burnett codified this aura around the real estate magnate — despite it having long been debunked.”[1]
Burnett and Trump are fond of the tenets of the prosperity gospel and Norman Vincent Peale. If you think hard enough, work hard enough and love God in the exact and inerrant Biblical way you are supposed to, then you will prosper. Or maybe not, but either way if you don’t prosper and your life really sucks bad during the actual living of it, you’ve still got a Willie Wonka gold ticket to Heaven. In their idea of Heaven, (I’m thinking of Burnett more than Trump here), Heaven is a big giant all-encompassing place of Holy Love, where the religiously zealot and devoted survivors of the sinful world, struck down in its very infancy by a woman named Eve who bit an apple from a serpent will finally get their rewards. Maybe this is why they don’t seem as concerned with other’s lives here on Earth and how they are struggling because they know whatever people are suffering they deserve it and if they were just a wee bit more faithful maybe the suffering would be abated or strike someone lesser than those most holy devout Christians.
When you are a hospice chaplain like I am, this is what one might call a sticky wicket because all of life is suffering. If you are not suffering this very moment, you have in the past and will in the future and at any given moment in time in another part of the world, or maybe in your neighborhood someone in one house is suffering. At this exact moment you are reading this, someone is also in too much pain to read. Death reminds us that one day we will all lose those we’ve loved most, and they will lose us.
Did you know the contestants of the show Survivor get a ten-page contract that they must sign and lists all the rules of Survivor you must follow? I almost said this out loud when we were in the funeral home trying to plan my mom’s memorial with a large, Texan funeral home director who kept calling us missy instead of our names and was still going on, through much of the planning discussion, bemoaning the lack of sleep he got from the night before.
He had less sleep because I had somehow been put in charge of calling the funeral home to let them know my Mom was not going to probably make it through the next 24 hours. I had called him at 2 in the morning because their website listed 24-hour call line and alongside it had a picture of a nice, gentile smiling man. I realized as we were talking to the dark-eyed, sleep-deprived funeral home director that the picture on the website was a stock photo of someone who might really be gentile and kind in nature if he answered the phone.
My two sisters and I, along with my mom’s 3rd husband sat in the small room with this director. He did not wear a mask and we all had our masks on. He said he was feeling safe so far because in his little Texas town he didn’t handle the east side folks and their funerals. He clicked his teeth when he said this, and of course what he meant is the blacks in Desoto, Tx who were dying of COVID19. That was for the east side funeral home to handle. I wanted to punch him so hard in the face when he said this. I knew that would be breaking some grief rule, “Thou shalt not punch asshole funeral director in the face,” so I sat on my hands.
The show Survivor calls their contestants castaways and they have to audition endlessly to be on the castaways. In my mom’s life, we were never her castaways, but in her death, we were now survivors on Grief island, with a dearth of guidance and our different sorrows from her death.
The Survivor rulebook is a nine-page contract signed by all castaways before being subjected into the competition. Though the rules may vary per season, and are subject to change, depending on the sole discretion of the Producer and/or if the US and/or local governments say so. The following are some excerpts from the full summary of the terms and conditions in effect as of May 31, 2010.[1][2]
Survivor Rules
Contestants are only allowed to wear pre-approved clothing. In some seasons, castaways are to wear outfits that are the same color as their tribe (e.g. members of a red-colored tribe should wear clothes that have shades of red).
In the grief pre-game, I wore the same two outfits the entire time I was at my Mom’s, just alternating them and washing them with her stained sheets that we changed daily.
The contestant should be responsible for his/her actions, as the Producers may not protect the contestant once he or she faces public scrutiny. During conflicts between castaways, they are not allowed to purposefully inflict physical harm to each other. Doing so could result in disqualification and forfeiture of any consolation prize.
If the above rule were written for my family on Grief island it would also need to include “not allowed to purposely inflict mental harm to each other.”
An additional rule in Survivor is that castaways are forbidden to speak to each other during transport to and from challenges. Myself and my sisters adopted this rule off and on during our Grief Island trip while my Mom was on hospice. It took awhile, but as one processes anger to forgiveness, for us we were able to start slowly rebuilding our relationships. Sometimes you have to take a long journey away from Grief Island before you get back home to the safety and love of family.
Nettie Reynolds is an essayist and playwright. She lives in Austin, TX.
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