Your Brave Death
From what I've gathered, one of the greatest fears for people struggling with neurological disease is a universal kind of fear.
To be misunderstood, abandoned and without a loving partner or caregiver or solid friends.
In short: Dying alone.
Being with my father as he languished in a dank hospital room was devastating. I've never felt more powerless nor more raw and can recall every word each of you spoke or texted during that time. What an incredibly kind and loving circle of friends my family has!
God Bless Nurses, Hospice, and my Fearless Besties!
Most of us have no idea what to do in these circumstances...by why? It's an inevitability.
The line at Caywood's Funeral Home was over 2 1/2 hours long. Jody, my friend since Kindergarten, stood by helping for every minute of it and did not rest that night until I was asleep. I was humbled when several acquaintances showed up in their hospital or welding or cooking uniforms, apologizing for their appearance. They thought so much of my father that they came all that way to pay respects on their break!
Every bit of my scarce and jaggy energy was focused on Dad's comfort in the final weeks. Supporting Mom is a family affair as she says goodbye to her only life partner and best friend.
We all forgot to eat or sleep, didn't know what day it was or what deadlines we'd missed, overdrew accounts, dropped communications, and lost our cool in turns. If I had matching shoes on it was by the Grace of God alone. Everything in the material world dropped away.
In survival mode and being so intimate with death I wasn't confident my body would hold up. Thanks to Sinemet, Comtan, Azilect, Neupro patches, etc... I've always felt ambivalent and suspicious of drug companies and medications but these helped me stay moving in a critical time.
Parkinson's symptoms spike from distress, which is why those who take PD off times so personally or unconsciously add difficulties are no longer in my life. Bless their hearts! Never have I seen the intentions of fellow human beings and their habitual patterns more clearly than now.
Death is the great equalizer and is forgiven in the end, but I want to clear any residual resentments now, because I've got bigger work to do. I've answered a call that has nothing to do with reputationn or personal issues. I'm not afraid of exposure or failure, I'm afraid of running out of time.
Years ago, a southern girl told me how she returned to her hometown to help her mother die. They hadn't spoken and she was shunned for her sexual identity. I couldn't comprehend how powerful and healing this must have been in her situation, until now.
Even if everything is agreeable, death shakes out all the dark places we don't want to experience. Masks disintegrate and ego takes a back seat as you drop to your knees to beg for small mercies.
Nothing about dying is comfortable or easy (or endurable), without help. It was the selfless thoughtful angels who offeredsoup and just showed up without any fanfare or need for acknowledgment I'm forever indebted to. (FWIW, "soup" means any form of support...even a hug or a check in. It is never about the details, it's in the offering.)
You WILL be turned inside out and there's nothing you can do about it. Stay humble and grateful and as holy as possible, then put one foot in front of the other and breathe.
I have tremendous respect for all who endure extended illnesses with quiet grace and consistent compassion. Everyone has a different relationship to death, and in this time there should be no judgment, since deepening grief temporarily dements anyone who loves.
Margie Rodgers, you've taught me how to stay present under duress. I was ranting about pain killers and Kevorkian and doctors who never bothered to come around when you lifted me. To face the ugly physical deterioration of my hero while honoring his journey beneath the surface has broken me open.
The fact that we treat pets with more mercy in their dying hours remains disturbing, so a plan is helpful.
What are YOUR wishes for the end of YOUR life?
Any idea who might stick around and, if necessary, go through the toughest part with you?
These questions may bring up wounds or trust issues, but they require answers. Party buddies and cheap love and the ones who say they love but don't know how are common, and kind of sad. I feel for anyone who misses out on the spiritual and healing possibilities in these times.
Who are you sure can you count on, and who can absolutely count on you?
Some may think of dying as a topic to avoid, but we should be talking about it a lot more. The last thing I want to do is wait and not have a plan, leaving my loved ones without any direction.
If you've legalized healthcare paperwork, such as DNR forms, etc. what other documents and notes for family would you recommend?
Please leave any thoughts or links or books you find helpful below. Thank you. Deep bows to the true masters in this arena.