Life on the ward

    

    Mary as a bridesmaid in 2006, five weeks after the original VP shunt operation, and still suffering from double vision. 

     We were – our family of four, and Bob – frog-marched into this tragedy, unwillingly. We didn’t want it. And once it hit us, we berated ourselves for weeks and weeks for not staying with Mary that night. We roll it over and over in our heads and, at times, we blame each other. It’s just what happens. It brings you close, but it sets up private grievances and grudges that eat at your soul. It’s not nice.

      “If only we’d sat with her through the night … Why didn’t we stay? … We were tired, but ….” It just goes on and on like an old tape running endlessly.

     That frog-march has had its repercussions, ones that affect us to this day. Hindsight is futile and corrosive. Forward is the only way – if you can manage it.

   

      Isabella was born, Mary was waking up and moved from ICU the day after the birth, becoming just another regular patient. Except, she’d never be a regular patient, as we’d discover. She’d be a problem, one the hospital – despite its considerable responsibility in creating the situation – would heave onto our loaded plates, time and again. If I had a dollar, as that old saw goes, for every time we were made to feel like this whole thing was our fault, I’d be living in a big flat in Vienna. With a butler and valet – preferably Bates.

      Life on the floor of a big hospital: Well, first off, you might not mind it so much if you are there for a few days. As a patient, you recover as best you can, you put up with the noise, the constant confusion, the lights and bustle – and then you go home, where the real healing begins, and you consider consider your options.

      But three and a half years? It left us all half crazy, suffering from post-traumatic stress and chronic illnesses we now can’t seem to shake.

      I’d hung around hospitals a fair bit over the years with Alastair and his many ops; for my father, who died of cancer (he was treated beautifully at another Toronto hospital and in Orillia), my aunt in Nova Scotia, my mother,  (another ‘doctor knows best’ drama there). But this floor was a real eye-opener.

      First of all, there didn’t seem to be enough nurses. Period. And secondly, they only have to check on a patient every four hours. That’s the protocol. It’s written down somewhere in the Provincial Rules for Busy Nurses in Under-staffed Big City Hospitals mandate. Learn to live with it.  We didn’t know that then, but we sure do now.

     There seemed to be almost as many – or possibly more at times – personal support workers as nurses hanging around during the day shift and it is these people who really carry the load, changing diapers, washing patients, moving them, getting them dressed, making them comfortable.

   You see, I thought that’s what nurses did. But no. They seem to spend a lot of time sitting at computers updating charts when they’re not administering drugs, while it is the PSWs who do the dirty work. 
     Like every field of work today, nursing has changed, too.

     Don’t get me wrong: We met a lot of lovely nurses and there were fabulous PSWs who looked after Mary. They were kindness and compassionate incarnate. We came to admire and like many of them.

    But see, there was this one nurse – she was Mary's nurse the night of the ‘Big Incident’, when our daughter was found alone, after a fall, lying on her side, ‘cyanotic’ after choking on her own vomit – and that nurse was there forever. While all the other really bright things moved on or up, this one remained on the floor the whole time we were there. She was never assigned to Mary again, and she never said a word to us about that night. Hell, to our horror, we found she didn’t even make detailed notes about what happened that night.
    (But, we were told by a hospital records employee, there is a tendency to NOT make detailed notes when incidents such as Mary's occur. Well, that's pretty handy, isn't it? Then families don't know exactly how their loved ones are hurt, die, suffer.)

    I couldn’t look at her. My gorge rose every time I saw her. I spent a lot of time getting in the frigging elevator trying to escape that floor and those people.

      My crisis therapist put it this way. And this really sums up how I felt about those three and a half years on that floor: “It’s like you’re going back to the intersection every single day where the accident happened, and having to see all those first responders time and time again.”

     Post-traumatic stress is a real and terrible thing. It leaves you sleepless, with nightmares, a pounding heart and acute anxiety prompted by something as simple as waking up and opening your eyes. Scary. And it goes on and on and on.

     

    To be fair to all nurses, the system in which they toil is not working. They put in long hours, a lot of doctors treat them badly, their duties have changed, the whole damn system of treating patients has changed and I frankly don’t think anyone is keeping up with it. The level of middle management is daunting, they have rigid rules and patients and their families can be a real pain in the butt.

     And then patients with brain injuries are a special breed: They are confused and so they escape, they tumble, they wander. I always thought there should be far more nurses on this particular floor because of this and time and again we saw them rushing here and there, snappish, angry, rude and far too blunt.

     I don’t know much about staff turnovers on nursing floors, I suppose it can be high at every facility, but over three and a half years, we were astounded at the number of nurses who fled to other floors, moved on to ICU, more education or other hospitals. We often wondered what the heck was going on and quite often picked up on a dark undercurrent of politics that shadowed the floor – and ultimately, in our case – the care on that floor.

     (And I’m not exaggerating: When Mary suffered the final fall at that hospital, in May 2010, which resulted in two craniotomies in 36 hours, even the neurosurgeons were aghast. In a meeting a week later, after we endured a grovelling apology from the floor manager who said, “It shouldn’t have happened,” Mary’s main neurosurgeon leaned forward and snapped at her, “And it shouldn’t have happened the first time, either!” This – a reference to the April 8, 2009 incident that changed Mary’s life forever.)

     So. We weren’t imagining things. Someone, somewhere in government ought to take a really good look at how and where hospitals are using their funding, because it seems to be that patients – the very reason for their existence – are getting the short end of the stick.

     If they really can’t hire enough nurses, then go back to the good old days of the ward system, knock out all the walls and then the patients can look out for each other.

    One harassed overnight nurse told me that at one point, when another nurse took her break, she could be in charge of 12 patients. Worse? The night this nurse was on duty and left with 12 patients, most of them were ringing their bells, she said.  Go figure.

   

     So we were on high alert for three and a half years, and still, despite our vigilance, Mary suffered. Really suffered. Is this the best our system – or this particular hospital – can do?

     

    The awakening was painful. By the time Mary reached the floor she was quite aware; those pregnancy hormones were on the wane, though, and she soon lost the ability to speak with us clearly. That was devastating. No one could tell us why.

        The first day Mary was brought out of ICU she was put in a room with three other patients. They’d economically done away with the semi-critical care rooms – or step-down rooms – sometime in the past (they sure brought ‘em back within a few months after Mary’s mishap. Coincidental? We think not!), and there was one personal support worker assigned to four patients in these rooms, to keep an eye on them, help change them, tend to them, etc.

    Only problem is, if they have to change or tend one of the four patients, the curtains are pulled shut around that patient, and – well, you’d never believe what the other three get up to when they’re not being watched. They escape. They try to clamber out of bed. They pull out tubes, rip out needles and act like kids. Not their fault, though. It’s all part of having a head injury.

                    Mary taking a break from her 'boxing gloves'.

    

     For some reason, I got there late that first day Mary was moved to the floor. Paul and Bob were there, though, trying to calm Mary down, sweat dripping from them as they held her hands and arms. It took 30 seconds of standing at the end of the bed, watching this, for me to feel the heat and I threw a complete and absolute hissy fit. The room was stiflingly hot. It had to be 30 degrees C in there.  I thought I’d pass out – and my head wasn’t injured.

     “This room is too hot! It’s unbearable. These poor patients!” I screamed. “What’s wrong with this place? She’s not staying here!”

     She was promptly moved to a semi. The only thing was – yes, we had to sit 24 hours a day and watch her. Paul took the evening shift, I sat overnight with my laptop. Twenty-four hours later, we had to give in and Mary was put back in the room, which by then was much cooler.

    Someone had at least listened to me shrieking about the unbearable heat.

     Was I embarrassed by my behaviour? Nope. Not a whit. They had done this to my daughter and at this point I was having no nonsense from anyone. I suddenly didn’t know myself: the polite woman who was raised in a manse and taught that civility and “being nice and nice” was the way of the world was gone. 
    That’s what a frog-march does to you.

    I miss the old me. I never wanted to be this way.

   Mary settled into the cooler, four-bed room again. When I arrived on the second day, her milk was coming in and her breasts were sore, the nurses told me. She’s very uncomfortable, they said, and I should get a cabbage.

     “What?”

      “Go buy a cabbage. We’ll put the leaves under the binding.”

     “O … kay.”

       Paul was parking the car in a nearby lot (he figures he spent about $8 grand in that parking lot over the years and is particularly attached to it, even today), and I called his cellphone.

        “Go buy a cabbage – green or red, doesn’t matter.”

        “What?

        “Mary needs a cabbage. Go buy one. Don’t ask questions.” What was wrong with the man? I wasn't speaking Russian.

        Twenty minutes later, a very bewildered Paul crept into the room with a cabbage under his arm. Clearly he didn’t know what to do with it.

        “It’s for her breasts,” I tell him. His eyes widen.

       “They say,” I nodded to a group of nurses, “that the cabbage leaves relieve the discomfort.” I shrugged, he rolled his eyes in mortification and scurried away.

        But it worked. Mary was so much more comfortable with big green leaves sticking up over the binding on her breasts. We just keep sticking nice cold, fresh leaves in every few hours and that particular medical blip passed.

        The next blip is more troublesome. Brain-injured people can be very agitated and they lash out. They pull out tubes, argue, punch. There are no filters and they say terrible things – or things that don’t make sense.

       A youngish woman who’d suffered some form of brain damage asked Paul one night if he was “a woman.”     

    “Oh woman, woman. Are you a woman?” she crooned.

     Six feet, 200 and many pounds plus, the heavily bearded Paul drew himself up and huffed, “No, I most certainly am NOT a woman!”

        “Don’t engage the patients, dear,” I told him. “She wants a nurse. She can’t find the right word. Go find her a nurse.”

                The trauma chair and a visit to the great outdoors

                           with grandmother, Pat Archer.       

      In Mary’s case – it was escape. She wanted to be anywhere but there. She’d fling her legs over the rails – not understanding that she couldn’t walk – and try to get out of bed. Over and over, we’d put her legs back in. She’d pull out her feeding tube. She was restless, unhappy and confused. And she had no memory.

     They asked our permission to put gloves – more like huge white boxing gloves – on her hands, to keep her from pulling out her feed tube. We reluctantly agreed.

     Then they asked if they could restrain her because by this time, Mary is aware enough to know that this situation just isn’t right and that she needs to go home, go to work, go somewhere – and urgently. The panic that rose in her eyes at times was terrifying to see.

    Hospitals do not like to confine patients in any way but there are times when they have to – for the safety of the patient. So in addition to the boxing gloves, Mary had big Velcro-ed strips tied to her wrists and then the bed to keep her from trying to get out. It was heartbreaking and she’d glare at us and try and sit up.

    The gloves, the restraints … it didn’t dim that urge to get up and leave. Mary tried and tried to escape, to get out of bed, to go … somewhere, anywhere, in her confusion. (And so did many other patients and some of them were quite successful!)

   More than once we stood in the doorway and tried to stop them. More than once one of us would go over to a patient intent on de-tubing themselves and urge them not to do it. Once we managed to keep a weak, dazed patient from getting out of bed; clearly they would have done great harm to themselves.

     Where is the staff? Well, busy, I guess. Somewhere. Lots of times visitors or members of other families intervene and call for help, or step in and try to stop someone from running.

     I remember one summer Mary had a very elderly brain-injured roommate whose greatest joy was to escape from the hospital – wearing her fuzzy slippers, long nightgown and fleece housecoat – and head to the nearest coffee shops a few blocks away. Security would go on the hunt and she’d come back, totally disgruntled and ticked off.

    One day, when there seemed to be no one watching out for her, I stood spread-eagled in the doorway urging her to go back to bed. She stood, armed with her small bed table as a battering ram, a gleam in her eye.

     “Don’t do it, (I’ll call her Alice)! Don’t you dare!”  I envisioned myself down in ICU suffering from multiple abdominal and leg injuries.

     She was deaf as a post and I knew this wasn’t going to work. Thankfully, the PSW reappeared from behind a curtain and all was well – for a few minutes anyway.

      Alice did manage to escape later that day.

      It was a painful time for all of us, trying to get Mary to understand that she had to get better first, that she couldn’t walk yet, that she could hurt herself by getting out of bed. She just didn’t understand – the restraints, the mitts, the being in bed. She was fine, she’d say.

    And then one day, as we were trying to hold her down, she stopped, looked at us, tears streaming down her face, and croaked through her trach, “Why are you doing this to me?”

Next week: Getting ready for rehab