When Jess and I went to the beach last month, we visited the little bookstore on Nye beach. While I was cruising the self help section, I found a book called, "Death Without Denial, Grief Without Apology."
"Well, isn't that 6 months too late," I said. It sat there on the shelf, mocking me, so I bought it.
It's a really good book, written by the former Governer of Oregon Barbara Roberts, about the things she learned during the illness and death from cancer of her husband Frank. It's basically a primer of everything we could have done, but didn't, thanks to something we like to call "The Bubble."
Here's a few relevant quotes:
We are so afraid of death in this culture, so geared toward "medical miracles," we seem to have lost all sense of perspective. There is nothing wrong wiht a patient wanting a medical miracle. owever we have come to a place where families are demanding miracles when death is imminent and doctors often play the Wizard of Oz trying to orchestrate false hope and deny reality.
Traditionally, doctors are trained to sustain life, not plan for death. However, if the doctor would say "dying" to a patient, the pretense of recovery would be gone. If a spouse of life partner says, "dying" to a loved one they are then free to plan, share, and say goodbye over days or weeks or months. The dying person could then speak the truth to old friends, thank parents, prepare children. Conversations could be real. Expectations would be expressed. Fears could be shared. Memories could be made that would sustain and comfort those left to grieve once death arrives.
What a dying person needs is comfort, closeness, dignity, and in some cases, pain control.
Accepting that he was dying gave Frank more space for creating good times.
Kindess is helping dying patients accept the diagnosis and then give them support and services to live the rest of their lives with as much dignity, as many choices, and as little physical pain as possible.
Denial is not your friend. Truth offers you more freedom and broader options. Denial is also costly. It uses up financial resources your family may need when you're gone. Denial uses up chances to share your feelngs with your closest loved ones. Denial wastes the life ingredient you can least afford to squander--time.
The bubble pretty much robbed us of any of the positive aspects that might have come from our situation. I have a great deal of anger towards specific people who perpetuated the bubble. Everyone who insisted that we just had to "think positively," everyone who convinced mom that pain medicine was the enemy, everyone who said all she needed was more milk thistle, more blueberries, more vitamin c, more oxygen... The list goes on and on, and the crazy making power of the bubble is inexplicable in mere words.
The result of all this is that our (mine and Traci's) time was stolen and we can NEVER. GET. IT. BACK. We can't ask about the gumbo recipe, Traci's future wedding, what to do if ______ happens, reminisce about long drives up and down the I-5 corridor...NOTHING. All because we were forced to pretend that we had the next 20 years to do all these things because no one, including mom, could just deal with reality.
And did I mention the suffering? She was miserable for the last month or more of her life because "pain medicine was too hard on her liver" (it's failing anyway, why not be comfortable?) or "pain medicine causes constipation" (we have ways to deal with that, but you won't follow them).
"Mom, what's your pain at now?"
"Two," she'd say, while the grimace on her face said, "eight" every time she moved. It took a full day to convince her that adjusting pillows every 10 minutes wasn't going to help her, before she finally agreed to one drop of morphine.
Most days I'm able to function with this anger. Some days I go to my old house and chop wood. And other times, when I can't get the horrors of the (totally unneccesary!) trip to the emergency room out of my head, I just wail and scream and wish I could yell at everyone responsible. She was finally sleeping, peacefully, and she just stopped breathing. If only they had let her go, it could have ended like that. I would've been sad that I wasn't there, but it would've been better than the two days of hell that followed. All so that other people could get here, other people could see her, other people could say goodbye. Nobody seemed able to forget about themselves long enough to care about her suffering. We're kinder to animals.