Originally written on February 21, 2004
The sunglasses are the key.
People who go to hospitals on mundane, temporarily troublesome or even happy business show up, go about their visits, and leave. The people who are there on more serious business – those of us on our way to the intensive care unit, or coronary care unit, or some such place – we wear sunglasses. We all have the same look in our eyes, you see, and we’d like to hide it from everyone else. We recognize it in each other, though, when the sunglasses come off. We’re kindred souls, all of a moment, even though we’d give anything we own not to be. These complete strangers know more about my life right now than people who’ve known me since before I was born. And I know more about their lives than anyone else, as well. We are very kind to each other; we bring coffee and water and tissues; we consult on medical procedures and look to each other for reassurance.
The staff, also, become part of our lives. These people get to be our family, for a week or 10 days or 2 weeks at a time. They are taking care of the most important people in our lives, so they are automatically OK in our books. They tend to the needs of us, the walking dead, as well. We haven’t slept properly or eaten properly or concentrated on anything since our loved ones ended up in their care, and they know it. They tread delicately and ask questions gently; they impart painful information slowly, using deliberate words.
My Mom was in the CCU for two weeks and then a vent unit (basically an intensive care unit for patients on ventilators) for two weeks. Something little and horrible happened almost every day for that month – a small heart attack here, a blood transfusion there, here a blood infection, there a kidney malfunction, everywhere a quack, quack…
I walked in a bit early a few days ago (they let me in, since I’m such an old hand now) and I passed the room next to Mom’s – there above the bed was a large sign that (I could have sworn) read “Patient is dead.” Now, I’d gotten to know this man’s family; they were very nice people. I saw the sign and looked around toward the nurse’s station. Nothing unusual there; seven or eight nurses and doctors bustling and talking over paperwork.
I looked back at the sign, put my hand over my chest and said, “excuse me.” Nothing. “Excuse me.” Much louder this time. They all looked up. I gestured toward the guy next to Mom, and, just at that moment, words failed me. I was a bit overcome, and all I could do was gesture again. They all sort of went back to what they were doing; and now I got really mad. “Mother of God!,” I said, “you just slap a SIGN over his bed???”
At this moment, my very favorite nurse, a heavyset Jamaican woman named Olaide, happened to be coming down the hall. She had overheard me, and without slowing down or skipping a beat, she said, “Deaf. The man is deaf, child, what, are you blind?”
I looked back at the sign and blinked hard. “Patient is deaf.” Looked sheepishly back at the nurse’s station. Walked over to my Mom with as much dignity as I could muster.
I believe they are laughing still.
So many of you have been so good about calling, and emailing and stopping by, and wanting to know how Mom is, and how I am. There is so little time every day, because when I get home at night, I am exhausted and tend to do something mindless like watch TV for a while, then I try to go to bed. I thank you, though, from the bottom of my heart, for your kind thoughts and prayers. I know this is what is keeping Anna May going; I also know it’s what keeps me going. Many of you, concerned about your own parents, also ask me questions about their future.
I tell you this: (and I want to tell you this even if we haven't spoken in a while, I want everyone I know to hear this) if something goes wrong, if a parent, or a child, or any loved one, gets sick – know everything there is to know. Study harder than the doctors studied. Learn about drugs, about dosages, about side effects, about contraindications, learn about everything. Ask questions every time a doctor or a nurse shows up. At least twice a week, I get mistaken for a doctor, and that’s OK with me. I’ve caught hospital personnel giving Mom the wrong medication, or the wrong dosage, at least half a dozen times in the last month. And I’m not implying that anyone is incompetent. What I am implying is that they’re overworked. And, frankly, when it comes to older folks, families back off. They are fed up from years of sickness, or they’re scared, or, sadly, they don’t care. So healthcare professionals are used to making their own decisions about senior citizens. Decisions get made based on protocol; unless we open our mouths and fight back, protocol gets followed.
Patients who have advocates get better care, period. They get sent to facilities of choice, instead of simply facilities where there’s an available bed. They also don’t get written off as quickly as other patients. One night at the very beginning of all of this, morning rounds were going on and were being led by a doctor that I’d had a small run-in with. (OK, I may have referred to him as Doogie Howser.) Mom was not responsive to any of us, any questions, and Doogie told me that I should consign her to a nursing home straight away because she was just responding to reflexes, and that’s it.
I did feel that she was still there, though, and that there was still something to fight for. I said no, she’s still there, she stays here in the hospital and you fight the damned infection and you give her kidneys a talking to. They wanted proof, they said, that she was responsive, then proceeded to argue amongst themselves about what construed proof. I sat and listened for about ten minutes – they were still going at it – and I finally got up and got out my iPod. I looked impatiently for the very song I wanted, and put the headphones on Mom. Hit “play.” Sat back down. They were still going. I put my feet up on the bed and waited about a minute, and said, “hey, Doogie, check this out.” Doogie turned around and I hollered “what do you think of that song, Ma?”
She smiled. Not a happy smile, but a rueful smile.
I smirked at Doogie, who gave me a “whatever” look and signed his silly little papers, so that she’d stay. They all started to leave, and one of the doctors said, “what song did you play?”
Dean Martin. “Ain’t That a Kick in The Head.”
Don’t give me any shit about reflexes.
Mom was moved yesterday to a nursing home with a vent unit. We’ll see if anything changes in the next week or two, and if nothing does change, I’ll take her back to the hospital, and take her off the ventilator. She wouldn’t have wanted to live the way she is living now; she no longer smiles at music or recognizes any of us. She does seem very peaceful now, though; she’s much more at peace than I seem to be.
Even now, she’s still my role model.
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