Learning to live with ICU

     

                         Mary, the avid animal lover, with our dogs.

     As the days turned into weeks in ICU, as we came and went daily, we were far from alone.

     There is a ‘family’ or  ‘crisis’ room at the end of the hall on the floor, reserved for REALLY BAD situations. It’s also used for ‘team’ meetings and updates on patients, like when something goes quite wrong (as it did in Mary’s case, when, a year after the initial incident, a personal support worker left Mary unbuckled and alone on a commode during the night, causing yet another fall and two craniotomies within 36 hours); there were profuse apologies all round in that crisis room. But even more damage had been done.

    Or, at other times a social worker will arrange a little ‘meeting’ and take you there and pressure you to get those applications in for nursing homes, because spots are going fast, folks, and that’s something you don’t want to miss out on.

     Family members crash in that room in the aftermath of whatever horrible thing has happened to a loved one – hugging those wretched rough flannel hospital sheets for comfort as they shake with shock and decide on those ‘what-do-we-do-next’ steps. Or, in most cases, come to grips with what the doctors think should be done next.

     We recall with unrelenting clarity the story of a young man who took a tumble from a cottage roof. His family members were told he wasn’t going to come around and that he wouldn’t make it. The doctors and trauma people like families to know this so everyone can get used to the idea and make plans to withdraw life support.

   Thankfully, things don’t always go according to prognosis.

   Lo and behold, just a scant few days later – maybe six – this young man was sitting in a wheelchair in the patient lounge with his family, playing with his uncle’s dog and making perfect sense.

    Go figure. Don’t let them pull that plug too quickly.

    This crisis room – the only nice-ish private place on that floor where one can come to grips with reality – is usually only used by one family for one case for a day or two.

   Then, life being what it is, another horrific thing happens to someone else and another bunch of sad people come along and ease their exhausted selves into the worn furniture, try to read by the single dim light (my sister-in-law actually changed the bulb), and hide from what’s happening out there on the floor or in ICU.

    We took over that room for more than a week. We didn’t mean to, but Mary had a very large group of friends and co-workers (most of them social workers, too) who, we discovered, were just as devastated and surprised as we were by the turn of events. They were in the hallways outside, hauling in chairs from God knows where, crying, trying to fathom why and how Mary ended up brain-damaged and “vegetative” when she was supposed to be cared for … and omigod, "she's pregnant, too," they cried.

    And we have a very large family. They were all there and it was, quite simply, a nightmare for everyone.

    This little room, which basically accommodates five people comfortably, became a sort of communications hub for a while with family and friends checking in, the place bursting at the seams. And that was due to the fact you just can’t say much in ICU; it’s a place of goodbyes or great recoveries if you’re lucky, brief reprieves for others and for many, it’s the last, short step between life and life’s end.

    You can’t just walk into an ICU. You have to pick up a phone, identify yourself and wait to be buzzed in, two at a time per patient. It’s kind of grim. I remember one day a woman in the hall asking to see a patient – a daughter or niece, I think – and just as the doors flew open a nurse hearing the request said, “But she’s just died!” The poor woman collapsed on the floor.

    

     There were so many people who wanted to say goodbye to Mary, or to wish her well, or to touch her, or to pray with her – whatever their need – that the ICU rule-makers (hard to know who ran what there) allowed four at a time at one point. We put out notebooks and pens, one book for Bob, and one for us and invited her colleagues and friends to write down whatever came to mind – something Mary did that was good, bad, crazy, helpful.

     Those notebooks filled up quickly.

     We put up pictures of the Mary we knew – so she didn’t just become another sick face for the nurses and doctors. One United Church chaplain looked at them and said, “You know, it’s nice, because what we know of a patient is what we see,” and he looked at Mary as she lay there sprouting tubes.

     That’s not the Mary I know, I told him.

     “I know,” he said sadly.

     “She’s not coming back, they tell us,” I told him.

     “No. She’s not,” he said. Well, that ticked me off. Here was a man of God toeing the science line! He could have been a little more hopeful, a little more positive.

     But they all said the same thing. “She’s not coming back.”

     Chaplains of all stripes are a real and pervasive presence in hospitals. Only once did I see a family chase away a chaplain. But we found they were a bit of sanity in a nutty place and while kind, they soon got the sense we weren’t terribly religious and just came by to talk.

      Mary was raised Catholic and that fact must have been put on record by someone during her admission because a very regular visitor was the Catholic chaplain, a lovely man we got to know quite well.

     A few days into the ICU sojourn he gave Mary last rites, which freaked me out entirely. He, too, believed “she’s not coming back.”

   But we went along with all of it because, well, you never know, do you? And you hope there’s something or someone out there who gets what’s happening because we sure didn’t.

  

    This particular ‘Father’ – I came to greatly admire the Gucci shoes he got at a Rome market – must have known something none of the others did because he’d come by daily, place his hands on Mary’s head and pray. We’d stand back, respectfully, and hope it did something good.

    

       A couple of weeks into this ICU vigil, (it would last a very long stretch, from April 9 to June 26, 2009, the day after Mary and Bob’s daughter, Isabella, was born), we were all a little nuts, clinging to hope, but expecting the worst, wanting a miracle, yet trying to face reality.

     Sometime during the third week, Bob’s mom Lorraine ran out of ICU convinced Mary had squeezed her hand. She was so excited, so sure. She had so much faith and she really believed in a positive outcome.

     Mary’s best friend, Heather, the last person Mary spoke to following her surgery and before the fall in her hospital room, also ran out of ICU one evening a few days later telling us she was absolutely positive that Mary had put pressure on her hand.

     I couldn’t believe it, as much as I wanted to. I’d been standing there day after day, at Mary’s head, whispering in her ear, telling her over and over: “You’ve got to come back. You’ve just got to come back. We need you. Your baby needs you. Please come back.”

     And nothing.

      There is a method used to determine coma levels  – the Ranchos Los Amigos Scale – and we perused it from time to time to determine whether or not Mary was showing any signs of recovery. She wasn’t. According to the scale she was resolutely stuck at Level I: No response to pain, touch, sound or sight.

   And there are a couple of ways nurses determine whether or not a patient is starting to become responsive. Mary didn’t flinch once during these tests: They take the end of a pen and they press very hard into the soft part of the nail bed. Mary’s fingernails in time would be purple and bruised as they tried to get a response from her.

    The other way is for the nurse to rub hard on the patient’s sternum with the knuckles of their hand. It’s painful to watch. And there was nothing. No response, not a flicker of an eyelid, no twitch of a hand, foot, limb.  Mary was far, far away.

    When fluid gathered in her lungs and her breathing rattled, she had to be suctioned. They’d insert a tube deep down into her throat and Mary would kind of convulse, arch and go rigid until this procedure was over.

   “You might not want to watch this,” a nurse told us.

   But still nothing.

   We continued to talk to her as though she was there and able to answer us. We read Winnie the Pooh to her and the baby. We told Mary what was going on, why she was there, what had happened. We talked over her, to her, at her, sometimes softly, sometimes a little loudly in exasperation, or maybe it was desperation. But we talked and we talked. Nothing.

      And we prepared ourselves for life after Mary. We steeled ourselves for what would happen after she was gone.

      During a particularly wretched drive to the hospital one day, Paul and I had a flaming row over where we were going to bury her. I wanted her in Nova Scotia, he wanted her close by so he’d feel she was near.

     I thought cremation was best, Paul didn’t.

     God knows what Bob wanted.  We didn’t dare ask. He was in terrible shape, a lost soul caught up in a dreadful, impossible situation. We were Mary’s parents, but Mary was the love of Bob’s life – and he hers.

   And worse – he was facing being a single parent, knowing well in advance what the future held for him.

    We were all so mired in our own loss. And yet – and yet, Bob, in his quiet way, with his measured and certain intellect, had hope. He dared to hope while we tried to face reality.

      That scene in the car was bad. Mary wasn’t even dead. Things had got silly. But that’s what happens when you hang around a hospital every day. You start to believe what they tell you. And you get ready.

  

      One day, sedated to the eyeballs, I wandered over to a nearby church with Alastair. We needed a place to sit quietly and there really is nowhere to sit in a hospital that’s conducive to achieving any manner of peacefulness. There’s always someone bursting through a door, interrupting, talking.

     If I had any belief system pertaining to my upbringing, by this time in my life, it was gone. What I believe doesn’t in any way, shape or form resemble what I was taught. It’s the way the world goes, I suppose. There are so many ways to perceive and appreciate life – and sometimes the prism of structured religiosity is just a little too fractured, its light frequently a negative one.

     Human beings are exquisite creations and a bloody marvel without the weight of religion. It’s what you do with the life you’re given that counts, how you treat others, I think.

      But this particular day I was plain fed up with the waiting, the lack of answers, the assuredness of Mary’s doctors. I’d had it. I was beyond despair and staring down a long black tunnel.

     Alastair and I wandered around, sat in the church, ambled out into the spring sunshine and talked about what it would be like with Mary gone. We were such a close family of four, a formidable quartet. 

 

                                    Pooh Bear and Mary in ICU

     Not to get spooky or anything, but standing there in the light, the green buds just starting to show promise of another season, it suddenly struck me that Mary was not going to die. And I don’t know where that certainty came from. I was just suddenly sure that it wouldn’t happen. I shared this with Alastair who thought I’d lost my marbles – or “marbs.”

   But it changed the way I looked at things when I went into that ICU. It made me look differently at Mary. What if Lorraine and Heather were right? What if they had felt the pressure of Mary’s hand when they asked her to squeeze?

   

     I started to prod Mary gently, along her arms, on her hands and feet, her fingers, her cheeks. I combed her hair and cut it. I washed it, no mean feat in an ICU cubicle. It involves a washing basin, a large tray on which you rest the patient’s head, and a garbage can to catch the water. I’d be soaked and Mary would be wet down to her shoulders. But it was something positive I could do.

     I cut her nails. I bought flowery smelling washing gels and lotions for her and I put shiny pink lip gloss on her. The nurses joked Mary had ‘Angelina Jolie’ lips. And she did, too.

     And we upped the reading agenda. Mary had been a voracious reader of books and newspapers and we started reading both to her. (We still read children’s books to the growing baby and Winnie the Pooh still got his time in.)

     Bob’s stepdad started bringing in huge stuffed Pooh characters; we had a jaunty Pooh bear that wore, after a while, an old stethoscope around his pudgy neck. There was a large Piglet – a wonderful prop for hands and feet – and Tigger, who draped himself over Mary’s burgeoning belly. It was like a zoo.

   And we talked. We squeezed her hands and stroked her feet. The sister-in-law of the brighter lightbulb gave wonderful foot rubs with aromatherapy creams. Whoever was around would rub lotion on her legs or arms.

   And we were never alone – so Mary was rarely alone. Paul’s siblings and their children and spouses were there – always – to comfort, give us strength, to talk to Mary. It became, and still is, an extended family journey.

     Was it any wonder – with all that palaver, the people, the prodding, the lotions, lipstick and hair-washing, the reading and talk, talk, talking – that Mary would one day squeeze our hands and even better, open her eyes?

Next week: A slow awakening