It's easy for me to look at all of this dying-stuff philosophically because I have no memories of the "real" Toni. I have always known her as a woman in a wheel chair with bald spots from the radiation in her growing-back-thin-and-grey hair. For the first two of so years of my time with Justin he had to re-introduce me when we visited or remind her of who I was when he talked to her on the phone. (After he explained that it wasn't Easter.) I know a woman who sometimes thinks she lives in a two story house in Arizona where her mother-in-law is stealing money from her purse. She lives in Lakewood. Her mother-in-law makes her meals and gives her the medications she needs and brushes her hair. Why does a woman who can't leave the house on her own and couldn't count money out to a store clerk if her life depended on it have a purse? For the dignity of it--a woman should have a purse, someone must think, she must have asked for one, she used to take it with her when we went to lunch together. I have no idea what is in it. Probably a comb. Her mother-in-law or husband probably bought it for her. I know a woman who suffers and whose suffering permeates the lives of those who love and care for her. It's easy for me to imagine that their lives would be better if her quality of living were not so not-really-living. I have no memories to hold me in love with her, the way I have memories of my own family might make me want to hold onto them no matter their condition when the time comes--just so I could hear them say, "I love you," one more time, the way she said it to Justin yesterday.
But when I look around in the ICU as we walked in and out of it throughout the day, I see an old man who has been lying propped up in bed all day with his eyes closed and his mouth wide open in a perfect "O." His lips have become drawn more and more inward by 7 p.m., when we leave. No one has visited so many of these people. The woman next to Toni's bed has been calling "help" through her air mask intermittently, trying to get out of bed, trying to go home; the nurses have to ask her to lie back down, to say her name, tell her she's in the hospital, tell her she'll go home later, that her daughter called to ask them how she's doing.
She has pneumonia too. The masks she and Toni wear push oxygen into their lungs because they cannot breathe deeply enough through their gunky lungs to have their blood reach the correct balance of oxygen and carbon dioxide to run their bodies.
Yesterday Justin and Mark discussed Toni's DNR again. When we got there the only treatment she was supposed to be spared should she code was being intubated--no having a breathing tube put down her throat so she could be on a vent that could probably never be removed, given that she regularly has such trouble with swallowing and breathing. Justin clarified that it's an all or nothing situation. CPR would break her ribs and probably necessarily be followed by intubation. Not to mention it would hurt like hell, she would have trouble recovering from that and it could cause even more problems for her health. He explained that using the paddles to restart her heart would be an additional trauma for her body. They decided that she could be treated with medications only, that no mechanical "heroic measures" would be taken.
So I am left wondering when these heroic measures began--when Justin decided they had to take her to the ER because she wasn't breathing enough on her own as she lay in her bed at home? When the placed the bi-pap mask on her face to help her get enough oxygen? Did we go to the ER so she wouldn't die? Her left lung was full of mucous--no air. Her right lung was filling. She was drowning. She could have died in her bed; she was already unresponsive and maybe she wouldn't have suffered. She wouldn't have screamed (as well as she could scream) when the technician stuck her again to take her acidic Ph-Unbalanced blood and test it again. This tiny woman with tiny veins and thin bruised skin. Why are her hands so swollen? She's not doing her physical therapy at home when she's alert. Does she want all this treatment? Next time she gets pneumonia does she want all this treatment? How does a son, a husband, an -in-law ask? "Do you want to live like this or do you want to die the next time an opportunity to die arises?"
Which brings me back to all the old people in America sitting in ICUs without visitors getting nutrition dripped into their veins with their cocktail of medication. Why? What are they staying around to witness? Will they see the next graduation, the next wedding, the next grandchild? My grandmother couldn't come to my wedding, didn't probably know it was happening while she lay in her hospital room with her Alzheimer's and her husband who would not leave her side. Who is all this medical attention serving? The patient? The family? God?
But Toni is not old. She is younger than my parents, who leave tomorrow for a trip to northern California and then in a few weeks to something like Russia, Sweden and Spain on a dream vacation to celebrate their miraculous retirement constructed by my RN, BSN, MBA mother's economic safeguarding and investing luck and genius and my brother's plane-tickets gift. Toni just looks older than Mark, who is younger than her even, because she has had brain cancer and probably a stroke and for seven years has not been able to perform basic life functions--like bathing--on her own.
How long do people--the people attached to any of the patients in the ICU (except the obviously young man whose room is filled with flowers and stuffed animal Teddy bears (I hope he has kids) whose leg is in a giant cast, who must have been in an accident) who are one or two steps from death, one or two drips and forced-air breaths from freedom of this earthly body--how long are the people who have power of attorney or who just love them or who just work in the health care profession, How long are they allowed to keep this looks-like-torture going for these humans who have already lived the fullest lives they will ever live?
In ancient countries and other cultures and places without plastic (that commercial has really been bugging me lately) death is not dodged the way we attack it in first world countries or rich parts of third world countries. It is welcomed, the spirit of the body is blessed and sent off to watch over the living in some peaceful way. The old are respected, not left to not-die alone with their mouths wide open.
What are we trying to achieve here with the living-dead and the dead-living?
At 6:30 p.m. the nurse offered me a chair, "You've been standing all day." There is one chair for the three of us. I said no--it's too late now. My husband is an amputee; Toni's husband is exhausted and holding her hand. What is the point or the right for me to sit down?
I think of Annie Leibowitz's photos of Susan's decline from cancer and wish for my camera, but know this experience will be documented only through my words and my memories.
My outsider inside observations of a life saved so many times it is worn thin and its caregivers are worn out.
One day this week or next they will take her home and the regimen of carrying her and shouting (the mother-in-law is deaf, the sister-in-law can yell and no one will hear but the woman who cannot stop any of what happens to her from happening) and helping will start again. Till then the young one goes out, the old one rests and the three of us hover Toni's bed like helpless and confused guardian butterflies.
Maybe today I'll be the visitor of Elizabeth, since there are only supposed to be two visitors per patient in the ICU. I'll hold her wrinkled hand and tell her she's OK and maybe read to her while I wait for doctors to visit Toni's bedside, and then I'll turn to them and their ideas and help to distill their words into water we can all drink. Maybe today the family that has been crying in the lobby and the red-faced teary woman pounding her fists in frustration will be gone, maybe the chanting monks at the bed on the other side of the long room will return or maybe that patient has gone somewhere else, maybe to heaven because there is one God and clearly thousands of roads to that house of many rooms where He will host us and we will rest and work and live when this oft-damned life on Earth is done.
She's not going to code; she's been improving. It would take an act of God for something to really change. And God has an awful lot going on down here on His war torn burdened Earth.
Oh, by the way, my best friend Amanda's baby was born yesterday. Mia. Perfect size and weight.
Good news and bad news. But it wasn't an even trade, not like when I gave up my baby-unbaby the day one of our church babies was born. I like to imagine he knows, knows that my miscarried baby's spirit floated back up into the circle of life so that he who had lived longer in his mother's womb could come to live with all of us. I like to imagine, that if Toni had died when Mia was born a bit of the "real" Toni's feisty spirit would have leapt into the breath of Mia and lived through her. The church-baby stares as me and smiles, as if he knew, I used to look away because it hurt too much. But now, over a year later I can hold him and love him (and his new sister) as if (and it must be true) borrow babies are all I need. Fiona calls me a baby magnet because as soon as we met, her shy two-year-old cleaved to my outstretched hand with a smile she doesn't usually offer strangers. Maybe they know I have just enough love to give before I hand them back to their parents.
Maybe Toni knows that too. Yesterday she said she wanted to go home. Maybe that family has enough left to give to keep taking care of her and the memories they have of a fuller human life.
Me, all I have to offer them is love, given in bottles of water, smiles and prayer.