“I Suffer a Phobia Called Hope” by Maya Abu Al-Hayyat
“Black Snow [I came home]” by Carl Adamshick
“A Great Beauty” by Cyrus CassellsYou have come to the right place, and we are glad you are here. This is a safe place to share stories of love and loss, devastating grief, exhausting care-giving, memorials, advanced directives, mourning, hope, and despair. We want to hear about about what you wish you had known or done differently, what you wish those around you had known or done differently, and what went right. We will never tell you to move on or find closure. "What cannot be said will be wept." Sappho
“I Suffer a Phobia Called Hope” by Maya Abu Al-Hayyat
“Black Snow [I came home]” by Carl Adamshick
“A Great Beauty” by Cyrus CassellsI joined a conversation my sister and her wife were having with a social worker, a new member of their hospice care team. They kept discussing “the MAID,” which I soon came to understand is the acronym for the New Jersey law referred to as Medical Aid in Dying. It allows New Jersey residents with terminal illnesses to choose to end their lives by taking a cocktail of life-ending medications.
This important piece of legislation was enacted in 2019, and as of last year, 186 people had chosen to die this way. (That’s a very small percentage of annual New Jersey deaths.) Julie, a lawyer, had done her research and had told me that the Garden State is one of only 11 jurisdictions (10 states and the District of Columbia) that allow medical aid in dying, also known as death with dignity and end-of-life options....
With the MAID request approved, Maddy, Julie’s spouse of 35 years, picked up the prescription from a local pharmacy. The price: $900, which is not covered by Medicare, the Department of Veterans Affairs or many private insurance plans. A study published in The Journal of the American Geriatrics Society last year found that 96 percent of people who died by medical aid in dying were white and 72 percent had at least some college education. “The reality is that communities of color, for a wide variety of reasons, also are more likely to utilize aggressive care and less likely to use other end-of-life care options, such as hospice and palliative care,” explained Ms. Callinan. People without the resources to pursue MAID may be forced to make a different choice: suffer through a painful death or take matters into their own hands. “Be sure to include these statistics when you write about this,” my sister directed me.
With her pain unabated, my sister’s next task was to choose the day she would die. Our entire family supported Julie’s decision; still, we did not want to say goodbye. We made silly excuses for why certain days were inconvenient.
What should more people know about death?
I think they should know what they want. I’ve been in more situations than you could imagine where people just don’t know. Do they want to be in a nursing home at the end or at home? Organ donation? Do you want to be buried or cremated? The issue is a little deeper here: Someone gets diagnosed with a terminal illness, and we have a culture where you have to “fight.” That’s the terminology we use: “Fight against it.” So the family won’t say, “Do you want to be buried or cremated?” because those are not fighting words. I have had situations where someone has had terminal cancer for three years, and they die, and I say: “Do they want to be buried or cremated? Because I’ve told the funeral home I’d call.” And the family goes, “I don’t know what they wanted.” I’m like, We’ve known about this for three years! But no one wants to say: “You are going to die. What do you want us to do?” It’s against that culture of “You’re going to beat this.”
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Do these experiences feel religious to you?
No, and that was one of the most convincing things for me. It does not matter what their background is — if they believe in nothing, if they are the most religious person, if they grew up in a different country, rich or poor. They all tell me the same things. And it’s not like a dream, which is what I think a lot of people think it is. Like, Oh, I went to sleep, and I had a dream. What it is instead is this overwhelming sense of peace. People feel this peace, and they will talk to me, just like you and I are talking, and then they will also talk to their deceased loved ones. I see that over and over again: They are not confused; there’s no change in their medications. Other hospice nurses, people who have been doing this longer than me, or physicians, we all believe in this.
Becky Robison writes in Salon about dealing with her parents estates, including their things, and so much confusing paperwork. "Mourning is just the beginning," she says.
My life has been consumed by settling my parents' estate. Executor and Successor Trustee is my new part-time job — one I never asked for, and one I'm technically not being paid to do, though I suppose the inheritance counts. Over the past few months, I've learned about death certificates (you will need an absurd number of copies), the difference between having something notarized and getting a Medallion Signature Guarantee (the latter is essentially a fancier version of the former), and how you should respond when your dead parent receives a jury summons (depends on the state, but you usually have to contact the County Clerk to have the aforementioned dead parent removed from their lists). I've had to sell a condo, a boat and a car. Real estate: every Millennial's expertise!
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I wish death had been a common dinner table conversation. Money, too. Don't spend more than you have is about the extent of my financial literacy. I wish my parents had talked to me about their assets instead of leaving me a cardboard box full of paperwork to comb through next to the Christmas decorations. At least I'm old enough to know how a checkbook works.
People keep telling me how sad it is that I lost both parents at such a young age. Here's what I want to tell them: I'm at the bottom of a bell curve. The Boomers are starting to die — my parents just went early. Over the next decade or two, more and more of my peers are going to join the dead parents club. The time to get cozy with the Grim Reaper is now, before he comes uninvited.