By the time I was 18 I'd been to more funerals than most middle age Americans. In high school there was Mark, Judy, Yvonne, and Todd (to whom I unsuccessfully administered CPR) . After that there was Paul, both grandfathers, Uncle Jim, and nursing my parents back from near death after being stabbed by an escapee from an insane asylum. Then came my mother's stunning passing from Alzheimer's, and in the last few months my grandmother from gravity and my father from alcohol, leukemia and an inability to fight the odds forever. I've lost friends to cancer and a family to mental illness.
My resume in this area is decent. Unfortunately, by the time I was experienced and equipped to navigate the emotional territory and an often obstinate medical system it was too late.
So, here’s what I’ve learned so far. Tuck it away like a map you might need someday, and if it seems useful please share it with a friend.
Lesson one - Every cliche is true:
Initially I brushed off every cliche I heard, but believe them (with one exception, the next person that utters the word "journey"is taking a trip of their own). I became so bored with hearing how "everyone handles death differently", but this is so important to remember. Tattoo it to your psyche. As you, your friends, family, acquaintances, strangers enter the vicinity of the dying you are going to see a carnival of reactions.
Respect your own reaction. During a time of increased sensitivity and meaning many things will be out of your control.
If there's any way to laugh do it. Humor will help your heart. It is so hard to take in is the entirety of what is unfolding. The beauty, horror, kindness, rage, confusion, sweetness, love, envy, fear and exhaustion that exists simultaneously. If it is your role to help shepard someone to their last breath respect those cliches and remember that the "stages of grief" come in whatever order they want to, unannounced, and with their own agenda.
Lesson Two - Western medicine, awesome at life, terrified of death.
My father was kept alive at least 10 years past his expiration date by extraordinary doctors and an unending will. That said, five days before he passed hospital staff started to move him to a cardiac ward to install a pacemaker. With a failing kidney, liver, sepsis and leukemia he did not need a pace maker. He needed to go home.
Specialists focus on getting their part to work. The kidney guy is focused on the kidney. Hospital staff focus on sustaining life and will move in that direction until hospice is engaged.
If you're in a hospital be kind to your nurses. They work hard and importantly they possess the most information and in general run the operation. You will work with them much more than the doctors.
As for the doctors, establish contact with them as they are making their rounds. Write down your questions before the doctor arrives, our memory tends to fail in these situations.
In the hospital there are two conflicting forces at work, your emotions and the need to be incredibly vigilant with hospital staff and administrative details. At first I assumed that my constant questions annoyed the hospital staff, but most of them were refreshed by someone being engaged.
Hospitals are full of people that are dropped off and then left alone. In general hospitals are full of lonely people, and bad lighting. If you're there for the duration and it's allowed, bring a plant. If you play music bring your instrument. If your loved one loves dolls, artwork, elephants, midgets, then bring them.
As for the administrative details, we found out that my Dad was almost given a pace maker because the paperwork had been misplaced during transfer, which brings me to lesson three...
Lesson three - Get help
Around death I've know exactly what to do with a clarity that is singular in my life, and I've been dumfounded, paralyzed and confused to the point of genuine idiocy. The "it takes a village" cliche is rock solid here. Find your people. If you're in foreign territory make sure you connect with hospice early and let them know your situation. If you are alone then call a friend. If you can afford care givers then hire them. Care givers let you to be a loved one, to freak out, to have good days and bad days.
Get a feel for how long things are going to last, what the road ahead looks like and then spend some money.
This assumes that you want to know the roadmap. If that's too much then respect your threshold and find someone who can be your advisor. If you don't have anyone in your circle then find a veteran hospice nurse, they are angel warriors.
Lesson four - Find a veteran hospice nurse
My adoration of hospice is impossible to express. Hospice is still under the governance of American medical bureaucracy and of course influenced by a fear of lawsuits. Consequently, sometimes you have to push. Veteran hospice workers have seen it all. Their "guesses" and intuition tends to be spot on. Again, find the veterans and learn from them how you or your caretakers should be tending to your loved one.
Some things I learned from our nurses:
- Tight, flat sheets are incredibly important
- If they want a cocktail or a smoke allow them their enjoyment
- Some people will not pass until they are alone
- Some will wait until just the right person comes by
- When your loved one passes you do not have to call immediately. Take as much or as little time as you need.
Have the mortuary number and your plan together well in advance.
When the mortuary arrives do not be in the room or watch when they move the body from the bed to the gurney. The spirit, all affect, muscle tension and general signs of humanity are gone and this isn't an image you want in your head.
Ask the transportation folks not to cover your loved ones face, and as they are about to leave ask them pause for a moment so you can say good bye.
Remember that calling a mortuary is on your schedule. You won't get in trouble if you take an hour or more to yourself, including calling hospice. Give yourself the time and space you need. There are no second chances.
Lesson Five - Some say euthanasia and others say mercy.
Those caring for a loved one at home may move into territory where prolonged care has turned towards torture and the conditions at hand are worse than anything you'd put a pet through. The decisions made at this point, namely the amount of medication given, are lonely choices.
This is not unfamiliar territory for many doctors, nurses and family members. I and many others will not judge you if your love manifests itself in generous portions of morphine when it is clear that there is little left physically but pain. The important thing to remember is that it was the disease, not you, that caused their passing.
Lesson Six - Support is where it is, not where you wish it was
Husbands and wives, friends and lovers, may fail you when you need the support, and others might swoop in after years of silence to offer a shoulder and a drink. Take what is offered if you can. Mileage may vary when dealing with death.
Lesson Seven - There is nothing orderly about grief
My most earth shaking breakdown was in the egg isle at Costco. With snot pouring on to my shirt and scarlet red eyes looking like I found myself being stared at by an elderly Chinese woman. The grief came out of nowhere.
I’ve given eulogies with dry eyes and a straight back. I have no idea how grief works, but the brain the body and spirit have their own processes and we have no control over them. It took me months to realize that the things that were angering me weren’t actually infuriating I was just really moody.
In the past we'd wear a black arm band to honor our loved ones and to signal “hey - I’m not in my right mind”. These days we're likely to find ourselves at work just days after saying goodbye to the most important people in our world.
Simply, forgive yourself when you go crazy. It will happen.
I hope that this does someone, somewhere a little good. If you find yourself in this territory and need someone to talk to, even if you don’t know me (or perhaps especially if you don’t know me) please feel free to email me at: Jason@DeathIsDumb.com
Bug hug
Jason
