We are such creatures of routine in our daily lives. Coffee, let the dog out, make lunches… over and over. And in a moment, you’re thrown into the sterile- or not so sterile- environment that takes away the sun, a sense of time and hope. The language is unfamiliar and the struggle becomes one where you try to listen through stunned ears, getting every third, maybe fourth word.
It’s mental whiplash.
In the years of my mother’s long decline, I spent four crisis moments in the hospital with her, certain each time she was going to die. The reality ended up she died at home. When she was finally ready.
One time, she was sick in Florida. Uncontrollable rectal bleeding left her weak, and on that edge she visited often before finally letting go. I flew down, as was my unnamed sibling (I’m not allowed to talk about that one) and unnamed sibling’s spouse.
Nurses whispered to all of us that it didn’t look good.
Doctors ordered more tests to try and locate the bleeding source.
My mother was high on drugs, smiling. Except for the fact that she wanted a cigarette. I told her I couldn’t wheel her outside to smoke; too many things were attached to her.
The social worker arrived one day and we knew it was not good. She was recommending an evaluation for hospice. Would we be able to get her home or should they set it up for her in Florida?
It was horrible news. I didn’t want her to die in some horrible hospital. I didn’t want her to die, period. The social worker carefully explained all the options. She did what she had done many times that week, that month, that year. When the appropriate, respectful pause was reached, she left the room.
We digested the news and decided to wait for the last tests to come back.
Too weak to sit up even but finished with the pause, my mother asked if then she could be removed from all the tubes so she could have a cigarette, since she was dying anyway?
I got the nurse. I figured, what the hell…
She put another nicotine patch on my mother.
I had been in Florida a week. It felt like a month. It was wintertime and while I leaned towards the rejuvenating sun trying to break through the thick, plexiglas windows, it was to no avail. I was stuck indoors. Walking hallways where doors that should have been closed were wide open.
I’m not afraid of dying. I am afraid of dying without dignity. What I saw along those corridors were people who probably all wanted the same- but were not getting it.
My mother started to make lists. She always made lists, no matter what, where or when. Going through her papers after she died, I smiled every time I came across one. Always handwritten, neat, ordered, and eventually with check marks, she kept them all, it seemed as if to mark her progress through life. Thank you notes finished, coffee purchased and a small present for a friend’s grandchild. Every moment carefully attended to as a practice; she wrote lists even when I was a small child, long before her memory slipped.
Barely able to open her eyes, she decided who would get what of the major art work she had. She continually reminded us if we fought over things after she was dead she would haunt us. There were people she wanted to have small gifts of money- I carefully wrote down names and amounts.
I made her list.
I left the room to cry. Often. I didn’t want to cry in front of her. It was a time in our relationship when we were very close. I knew she wouldn’t let go if I still held on.
I didn’t want her to suffer.
We still cared about each other. That wasn’t true at the end. Yes, we still loved each other, fiercely, but I no longer left to cry and she no longer tried to pull her body out of the muck.
Twenty-four agonizing hours ticked by before the test results were in- they found the bleeding. They thought they could stop it- or slow it down at least. A new course of medicine started, and a blood transfusion from “a strapping 20 year old” was hooked up.
A few hours later, my mother sat up.
Now, I am going to go have a cigarette, she declared and pointed towards her purse. I found a wheelchair and the nurses came in behind me telling her no no no…
My mother started to remove some of the little sticker monitors on her chest, still smiling, still polite. I don’t think a 300 pound orderly could have kept her in that room.
The nurses finally helped me wrap the tubes in neat piles and my mother held onto the wheeled stand with the blood and medication bags, and I took her to the small courtyard so she could smoke.
Better? I asked.
Much better, she said, blowing out her first puff in over a week.
Within two hours after that, she explained to the doctor she was going home now, thank you very much. It had been a pleasure but she was not going to stop drinking nor stop smoking and she was ready.
In a moment, with the same speed as the fall that lands you, it’s over.
I drove her home. On the way, we passed a McDonalds. People who admired my mother, who saw her as a stately woman and patron of the arts, never knew she had a serious thing for junk food. She had dined at Charlie Trotters, at the Windows on the World, in Paris and Saint Petersburg when it was still Leningrad. But give her a cheeseburger and fries, she was in heaven.
Oooh. I want a cheeseburger. Let’s go to the drive thru.
48 hours had passed since the social worker ripped my world out from under me, and there I was ordering my mother a cheeseburger.
Don’t forget the fries! She said, And a chocolate milkshake.
Of all the times my mother was sick, in the hospital, that one is etched in my skin. It was funny at times, horribly serious, and I remember feeling like I understood what “bone tired” really meant. I made lists when I wanted to cry. It wasn’t about my needs. It was about hers.
I handed the burger over, resisting the urge to unwrap it, as I did for my kids.
There was nothing to be done but to go through it. I wish I remembered to step outside every two hours so remember it’s a day- or night. To remember the city of Jacksonville was functioning beyond the hospital walls, full of life. To see birds, and feel the wind and see people walking with clothes on, not lying on their sides with open backed johnnies.
It was one of the most surreal moments of my life, driving away from a McDonald's to a high end, exclusive resort, taking my mother home, still wearing the hospital slippers. Happily munching on her burger.
A few days later, I was home again. Coffee, the dog, lunches, as if it never happened.
Labels: hospitals, lesbian mom, parents, sick parents