The following is a guest blogger story written by a friend who wishes to remain
anonymous to protect her father's privacy. And it's a tough topic, but an extremely
important one. I, for one, have seen enough suffering--my own and that of
others--to be a proponent of the right to choose an expedited path to The Great
Unknown when one's pain is too much to bear and it's clear that there's no
returning from the abyss.
You can spout all the religious doctrines you wish in opposition, but
let's remember two things: (1) Religions are manmade constructs and anyone who
believes otherwise is probably trying to sell you salvation on television for a
mere $99/month (I am not anti-religion or spirituality and I consider myself a "seeker"--but I do not believe in using religion as a basis to argue my own perspective), and (2) We can never--NEVER!--know the full extent of someone
else's suffering, so how then are we to judge their choices? (Hint: we're not
supposed to)
"Freedom" is one of those buzz words that gets tossed
around quite a bit in the American culture. Why shouldn't this concept extend
to end-of-life choices?
When it comes to departing the physical realm by
choice, I'll take compassion over condemnation any day.
* * *
My dad’s last cocktail was alcohol-free. For a man who started most days
with a screwdriver, this was unusual. Instead of vodka, he mixed some white
powder that I had prepared into his orange juice, choked down the lumpy
concoction, and was gone 13 minutes later. I was there with him. This is my
story.
My dad was diagnosed with prostate cancer in 2010. He had symptoms for
two years before that, but like a lot of guys he didn’t go to the doctor (side
note: GUYS! go to the doctor. Getting a wand stuck up your butt would suck,
yes, but not as much as slowly dying over six years from a disease that could have
been treated). By the time he made an appointment, it was too late. He had six
years of a slow-motion death. He knocked everything off his bucket list,
including a cruise to the Panama Canal. Oh, and a cruise to Mexico with me and
my daughters, where he learned Gangnam-style dancing. That’s my dad.
Things got worse in 2015. He stopped his chemo treatment and entered
hospice care, which is usually a 6 month or less deal. He was in hospice for
almost a year. Then in June of 2016, when the cancer had spread to his spine
and the pain was relentless, California passed a new law known as the
aid-in-dying law. Similar to Oregon’s law, it allows patients with terminal
illnesses to end their suffering without the stigma of suicide. Oddly enough,
it became my dad’s lifeline for a while. Knowing the option was available to
him gave him comfort, and pushing forward to get approval from his doctors gave
him something to focus on.
I supported him in this — partly because I was
pretty sure Dad would fill the prescription, then let nature take its course. I
thought he wanted the comfort of having a choice, but not the fear involved in
actually making that choice. I was wrong.
On a Sunday in August, I called Dad for our usual weekly call, which
involved me trying really hard not to be impatient as he told the same stories
over and over, obsessed over his need for earthquake insurance, and griped
about all the people who annoyed him.
He told me that he would be seeing a second doctor that Tuesday, one who
would confirm his diagnosis and back up the recommendation of the first doctor,
that he be prescribed the medication. I decided to make the 1.5 hour drive down
to be present during that visit. I had no idea I wouldn’t be returning home
that night. The doctor said that he was eligible, and she would be arranging
the prescription within days. I scrambled to arrange things so that I could
stay. It was clear my dad was serious and he was ready.
It took three days for the prescription to be available. It wasn’t as
simple as “phoning it in”, and only one pharmacy in the county would fill it.
We were informed that it would cost $3,600 — the pharmaceutical company had jacked the price up as
soon as the law was passed (thanks, a-holes). It came in 90 capsules containing
powder, which the pharmacist had to empty one by one into a vial. Oddly enough,
the pharmacy took my dad’s credit card as payment, which seemed to be a
questionable business decision.
The label said “May be habit-forming”. I think not.
We made plans for Dad to take the medication that coming Monday, when
his hospice team was available to be nearby and provide support. I was
terrified. What if he chucked it up, or fell off the chair he had selected as
his final stop? I felt comforted knowing that hospice would be within arm’s
reach if I ran into trouble.
Only, they weren’t. Dad decided on Saturday that he was ready. He had a
couple bites of breakfast, then announced that he wouldn’t be eating anything
else, as he wanted to “get the show on the road”. The instructions told us to
wait 5 hours after eating, so we agreed that at 3pm, he would take the
anti-nausea pill, then at 4pm he would drink his final cocktail. And that’s
when it really hit me. I started to get shaky and dizzy.
We waited. What did we talk about? I hardly remember. I kept thinking it
wasn’t real, that he wouldn’t do this alone, without hospice support. It was
unfair to me. It was selfish. My husband drove down with our kids to see him,
and I didn’t have the heart to tell him of the new timeline. He drove off, and
I walked back inside.
At 3pm, I told Dad that he could still change his mind. That once he
took the anti-nausea pill, it would be hard to turn back because we would then
have to wait to get another one when we rescheduled it. He looked at me, popped
the pill, and I knew this was happening.
For the next hour, we sat around and made small talk. I don’t remember
much, but it went by surprisingly quickly. My mother had agreed to be there at
4pm to support me, but when the clock struck 4, she wasn’t there. My parents
were long-divorced but still friendly. “She’s always late! This will teach
her,” Dad said. Some marital wounds never heal over.
With shaking hands, I put 4 ounces of orange juice in a glass in front
of him, then brought the powder over. Dad said he didn’t want my fingerprints
on any of it — even though what we
were doing was legal — so I humored him and
used a napkin. I opened the medication and poured it into his glass. The powder
puffed up around my face in a big white cloud.
At that moment, I was pretty sure it would be lights out for me instead.
Waving away the clouds of powder in front of my face, I handed the drink to
Dad.
The powder made a very lumpy concoction that must have been hard to
choke down. But Dad did it, without hesitation. No last words, just a “Cheers”
and he drank it down. My mom had arrived by then, and the three of us sat
looking at each other for several minutes. Nothing happened. He shrugged his
shoulders as if to say: I can’t even do this right! And then his head tilted down
and he began to snore. I had learned that the process could take up to 24
hours, depending on the person’s physical health. My dad’s was not good.
About five minutes later, the snoring stopped. Dad wasn’t breathing any
more. It was over. He was gone. His ending was peaceful and calm, and on his
own terms.
At that point things got really challenging for me. I’m going to
document all the details, in the hope that they will help other people
considering this process. As I’ve been talking to people about it, I’m learning
that this has been going on for ages — that people use morphine or other drugs to cause the same
outcome, with a wink from the medical establishment. This new law legitimizes
it, but it doesn’t introduce a new solution. It just alleviates much of the
guilt felt by all parties, and for that I am thankful.
Once Dad was gone, I called hospice to send a nurse out. It took about
45 minutes, which isn’t long — unless you’re
sitting in a room with your dad’s body on a chair, mouth hanging open, color
drained completely away. Then it’s the longest 45 minutes of your life. She
pronounced him dead and asked me the time of death. Despite all my Grey’s
Anatomy viewing, I had forgotten to note it. “4:13 p.m.”, I pronounced with
confidence, totally making it up. “4:13 p.m.”
After that, there was nothing left but to wait for the funeral home to
pick him up. True to form to his last moments, my Dad had recommended the
cheapest possible solution, opting for an out-of-area cremation service that
cost less. It took them four hours to arrive. Four more of the longest hours of
my life, after the 45 longest minutes.
When they arrived, two well dressed young men who were very solicitous,
they took an inventory of his clothing. ALL his clothing. They were rooting
around to see if he was wearing underwear. I asked them to please stop, but
they needed to know if he was wearing underwear so it could be returned to me
along with his other clothing and belongings (like a watch, which came back to
me with his ashes). Just say he’s not wearing any! I begged. Stop looking. My
mom, in a rare display of awesome gallows humor, suggested we should have put
him in shorts, because “it will be hot where he’s going”.
If you are going through this, I strongly suggest not looking when the funeral
home staff puts the body on a stretcher. I really wish I hadn’t. To this day,
my last memory is of Dad’s head flopping to the side, his arms flailing out.
His skin was waxen and almost yellow. It wasn’t pretty, and I wish I hadn’t
seen it.
They asked if my dad was a veteran. This stumped me. I knew he had
served 28 days in the navy before being discharged for health reasons, but he
never identified as a vet. Still, I couldn’t say no. So they got a flag, draped
it over the stretcher, and asked “Ma’am, would you like to take a picture?” No,
I really wouldn’t! I thought as I took the picture.
And then he was gone.
It’s been almost four months. Writing this feels cathartic. Not everyone
responds well to this story; those who were raised Catholic, like my husband,
find it difficult to process. But I know I did the right thing for my dad, and
that I honored his wishes.
Rest in peace, Dad. I picture you dancing gangnam-style with a
screwdriver in hand in the great beyond.
Yes I see this as an act of courage too and I hope someday that some courageous soul would help me with this IF needed. Thank you for your vulnerability writing this and sharing your story.
ReplyDeleteAmen, Maurie. Would that we could all have someone as loving as the author of this story to help us make our transitions.
DeleteI really enjoyed the article. I wish it had been written in black type on a white background - like a book page. I find it difficult to read white type on a black background.
DeleteYeah, I figured out that whole "proper blog colors" too late in the game unfortunately. Thanks for reading it nonetheless. If I ever learn more about how to reconstruct my blog design, I will definitely be changing out the colors to black on white vs. white on black. D'oh!
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ReplyDeleteAgree on all counts, Mike. And the fact that the pharma company jacked up the price as soon as legislation passed is beyond reprehensible. There's a time and a place for capitalism and it's NOT during the final moments of life.
ReplyDeleteThank you for sharing this. My mom was devastated as her dying father pleaded with her to "do something." He was in such agony he told my mom, "Where's my daughter? She would never let me suffer like this." Maybe we should all stock pile those drugs for the future before big pharma wrecks it. Life is amazing and the path to death doesn't have to be the worst part of life (when it's right, when it's truly time). Bless your friend for sharing. Thank you.
ReplyDeleteCouldn't agree more, Susanna. I'll pass along your kind words. xo
DeleteI read this post every year when it pops up on my fb memories. For many years, I thought that I'd absolutely take advantage of MAID. Then I got terminal cancer. Having the need go from hypothetical to real was terrifying. I didn't know if I would have the courage. I am 5 years into my dx now, and feeling more brave. I am responding well to treatment so the need has receded from the forefront of my payche and I think I am able to re-examine it with a clearer mindset.
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