More falls, more letdowns

     

    

                               Mary on Christmas Day, 2009

     Mary struggled mightily after her first rehab stay. She’d returned to the hospital badly dehydrated, malnourished and with a raging infection. She was weak, listless, uncommunicative and agitated – worse than before. And more frightening, she seemed to have lost her ability to swallow.

    The infection would do other things, too. Somewhere along the line, as it raced through her body, pushing her already damaged brain into overdrive trying to cope, she lost the ability to feed herself.

     It hadn’t been pretty, there’d been food over everyone within 10 feet of her, but she could feed herself. And we had been so thankful for this one, small thing. It gave her a confidence boost, and it showed us she could possibly do so much more.

     Mary slept – and slept when she returned from her first attempt at rehab. And while she tried to heal and come back from whatever dark place she’d gone to once again, we worried.

      What now? She’ll go back to rehab when she regains her strength, we were told by the hospital case manager and the nurse practitioner.

      Unbelievable. Yet what other options did she – or we – have? The prognosis given by Mary’s neurosurgeon (and only given to us three years after the event, when we put in a written formal request for answers we’d been unable to get out of medical staff) was that the first year is crucial for recovery. Not much happens after that time period.

     So it's one reason patients are rushed out as soon as possible to rehab centres so they can receive an optimum amount of occupational, physio and speech therapies.

    How I wish we’d known that. Could we have tried harder? Been more vigilant when she was in rehab? We’d hired PSWs to help, we were there every day. I really don’t know – short of moving in with her and sleeping on the floor – what more we could have done to prevent that infection.

    In the meantime, the hospital case worker and social worker were pushing other ideas; complex care (read end of a future), a nursing home (read end of life). We were aghast.

     Heck, we’d seen violent convicts brought back to health to be rehabbed and returned to jail; we’d seen alcoholic street people healed, sent to rehab only to go back to shelters and the street. 
     If the health system could invest in these people, why not Mary? We’d ask that question many, many times as she was ultimately refused OHIP-covered therapies two years into this odyssey.  

       Nov. 24, 2009. We were 230 days into this tragedy. Mary and I were, once again, riding in a patient transfer vehicle, Mary strapped to a gurney, for the short ride back to the rehab facility. We’d all got our mental armour on. We’re going to watch, speak up, speak out and make sure the infection doesn’t happen again.

      Mary’s weight is good, 123 lbs. We were so, so hopeful. She was admitted, taken upstairs and quickly went from looking fairly content to absolutely desperate when she reaches the same room she was in the month before. It’s still dark, still gloomy and bare with the single dim light just inside the door. She looked at me, corners of her mouth downturned, a frown on her face. I tried to tell her it’s okay, that this is where they will get her back on her feet, that she’d done so well with the therapists when she was here last. “It’s not forever,” I whispered. She grimaced.

      But she remembered the place and the staff and she seemed depressed; within two days she had stopped eating. Once again, she was dehydrated and weak. Despite our best attempts, consulting with staff, making sure they are paying attention to her, helping her eat, she was put back into an ambulance and returned to the hospital after just eight days.

    We were devastated. Mary’s nurse practitioner told us the gastric tube would have to be re-inserted, that she couldn't eat well enough to sustain herself. Fine.  Just do it.  Whatever it takes. And at this point, it’s taking more than we ever believed.

      By Christmas, with Isabella looking like the most adorable elf that ever existed, as we forced ourselves to put up a crappy, thin artificial tree I picked up at a hardware store, Mary was considerably better. She was more Mary-like, had a small gleam in her eye and seemed healthier. That was good, but we still couldn’t muster enough energy for festivities. The usual wreaths stayed locked away; the red candles weren’t displayed, there was no holly, ivy or joy.

        Paul, Isabella, Paul's mom Pat, and Mary

             Mary, Bob and Isabella

     My sister-in-law hosted Christmas and we took Mary, thin but chirpy looking. If you can swan into a room in a wheelchair, that’s what Mary does – even being pushed by someone else. She always had a presence and still does; she has a way of looking at you, assessing, waiting before speaking, and she does that still. She’ll sit very quietly her in chair and just look when introduced to someone. When she thinks they might be okay, she’ll reach out an arm to grab their hand. We recognize her “how do you do,” but you have to be practiced to catch it.

     Christmas Day: We were determined to mush up her food and get her to eat. She did. And she enjoyed it. Her cousin asked her what she wanted to drink. It took several attempts and various queries but we managed to figure out she’d croaked, “white wine!” She had two glasses.

    Looking back, we now realize this was the best Mary would ever be (so far) – barring a future miracle. She looked bright, she took in everything around her, enjoyed the family, her baby and Christmas. 

    Perhaps the new year would be better? Did we dare to hope?

    We didn’t even flinch when they suggested a third try at rehab.

   Day 287.  Jan. 20, 2010: Once again, Mary and I are back in the ambulance trundling along snowy winter streets. “Third time lucky?” I asked her. She glared back glumly. She knew where she was going and she wasn't happy. It’s not forever, I tell her again. It’s just to get her back on her feet. And then maybe she can go home.

      She wanted to go home. She tell us over and over, spell it out on a special alphabet board we'd devised for her.

      I think the rehab staff were determined to make it work this time. They tried to implement a washroom schedule (it didn’t work as no one stuck to it); they tried to get Mary to feed herself again. And they did take it slow. Her therapies were spaced so she could rest in between sessions.

       Still, there was that old problem rearing its ugly head. She wasn’t regularly toileted so she sat in wet diapers. She pushed herself up and down the hall trying to find her room, banging into things because she couldn’t see well enough. One day she tipped her wheelchair back and frightened the staff. 
   Well, they noticed something!

    I got an angry phone call from some bureaucrat who sat in a dingy office down the hall. It was as though I’d been the one to push the chair back and scare the nurses.
     I just couldn’t figure it out. The patients at rehab are there because they are wounded and hurt. They are there to be fixed. But that isn’t the attitude conveyed. It’s like the patients are nuisances.

   The upshot of the angry call: they were going to put Mary in another wheelchair that tilted back so she sat back on the tail of her spine and she couldn’t ever do that again!

    Yes, that’s fine. We want her safe, after all.

     Mary became distraught. She hated the chair because it was uncomfortable. And then it started. Again. She was weak, couldn't eat, would fall asleep. She was almost comatose – and worse, thanks to that ill-fitting wheelchair – she was in excruciating pain with a huge round sore on the tail of her spine.

        She had a fever, she seemed delirious. But instead of sending her back to hospital right away, they put her on antibiotics and tried to wait it out. Bad decision.

       Feb. 9. We were absolutely frantic. I was certain Mary was dying. A doctor from another floor at the rehab centre came to see her, (the floor doctor was away), and wondered if it was her liver.

     “Her liver?” I asked incredulously. “Her freaking liver? What are you talking about?”

      An ambulance was called and we headed back to the hospital. Mary was catheterized immediately in the ER and I watched blood clots flow into the bag. She had a raging urinary tract infection as well as the painful bedsore. (It was, thankfully, the one and only bedsore she ever had.) A doctor came in and examined her some more, lifting the dressing on the gastric tube in her stomach. It was oozing, red and infected.
     “Oh dear,” he said, and left.

     I put my head down on Mary’s arm. It was too, too much.

    “Oh great,” I said to Paul, “they couldn’t even keep that clean!”

      Mary is readmitted to a medical floor. Her old nurse practitioner comes by and is shocked by her appearance. “She appears,” he told me, “to be almost septic.”

      Mary was then moved back to the floor she practically called home since April 8, 2009. She stayed there until Sept. 5, 2012.

     If we thought things couldn’t get more desperate, we were so, so wrong.
     Mary did recover from the infections, but it took weeks. She fought to regain the abilities she had prior to the infections, but it seemed the damage had been done. She still couldn’t feed herself. And that hasn’t come back. She couldn’t speak well enough to be understood, yet if we surprised her with a piece of news or gossip, she'd pipe up and ask as many questions as possible.
      To this day, this come-and-go ability to speak leaves us baffled. 
    

      Mary awaits treatment after a fall in physio

    On March 2, just three and a half weeks after returning from rehab, Mary was in the small gym on the floor having physio with the therapist and the assistant. Now I really like these people. They were wonderful with Mary. They got her on her feet initially and they worked her and worked her.

     But we got a call after one particular physio session to be told that each of the therapists had turned their heads briefly while Mary was not strapped in and she had fallen headfirst onto the floor. 
     We rushed down to the hospital. It was early afternoon and Mary was a mess. Her lip was swollen, her lower face cut and bruised. We were told someone would be by to put in stitches. So we waited with her, back in her room, mopping up the blood and keeping her calm.

       And we waited and waited, until after 9 p.m. Then Paul completely lost his patience. He headed to the nursing station and I followed. I was thinking one hothead was quite enough in the family and just as I went forward to intervene he slammed his (very large) hands on the counter, scaring the hell out of everyone, and yelled that it had been “enough. Enough.” He yelled a lot more, but I won’t get into that. He’s awesome when he’s angry – all the more so because he doesn’t lose it very often.

       A young resident arrived within 20 minutes. Mary’s stitches were put in. She was properly cleaned up, given painkillers and settled for the night. It only took more than seven hours to be seen – and that’s IN a hospital.

      The physiotherapists were aghast and apologized profusely. Falls are taken fairly seriously in hospitals – and a fall is how Mary’s initial tragedy began.

       April 4, Easter Sunday. We were 361 days into this journey and the first-year anniversary date is looming.

        It was such a lovely spring day we were able to sit outside briefly at my brother-in-law’s home while he barbecued a crown roast. This impressed me to no end. I can hardly BBQ a shrimp.

      We watched his golden doodle play about, we talked with the extended family, enjoyed the thin sun and the rebirth of the warmer season. Mary didn't attend this dinner as there were too many tricky stairs to negotiate with a wheelchair – and we didn't want her falling again.

     It was probably the first time in months that we felt – well, not great, but perhaps hopeful we could find a solution. We were, at that point, exhausted beyond belief. Worn out. Tired.

      We had decided to sell our retirement home in St. Andrews, N.B., the 200-year-old historic Cape Cod into which we’d poured so much of our time, money and energies doing renovations. It was a stunning home, but we just couldn’t get down there enough to justify keeping it. Having a sick family member was proving to be very expensive.

     I loved that house. It was “home” the minute I walked through the door. I put my heart and soul into making it ours.

      So that decision rocked us. (It would take two years to sell, however, and we took one hell of a loss.)

      And then, since we were hiring people to do most of the work at our Toronto home, cleaning it, doing the gardens, etc., while we camped out at the hospital, we decided to sell it, too.

      We were complete and utter messes, making bad decisions, acting irrationally; we were starting to get sick ourselves, we were at a total impasse with our lives, neither coming nor going, unable to move on, unable to live our own lives, unable to make a decent decision. Everything we did, everywhere we went was governed by what had happened to Mary.  

     But on that Easter Sunday, we thought that maybe, just maybe, we could dare to hope. It was such a lovely day.

       Driving home after dinner, around 10 p.m., my cell phone rang. It was a doctor whose name I didn’t catch saying that he’d just put stitches in Mary’s head after she fell off the bed and caught it on a metal piece. The stitches are at the back of her head, he told me, but nowhere near the pump for her shunt. She had been put back to bed and she was fine, he said.
     (Oh yeah. I’d heard that before.)

     Mary, at that time, was in a four-bed room. They have one PSW who tends to the patients, as I’ve mentioned previously. But when one person is tended to and the curtains are closed, all kinds of things go on with the other three. This was when Mary tried to do her swan dive.

      Never rush to hope. You’ll be disappointed.

      That crack on the back of her head and those few stitches? By this time, nothing shocked us.  It was just yet another mishap at this supposedly world-class Toronto hospital. We looked at each other. "The fourth fall?" I asked Paul as he gripped the wheel in anger. He nodded.
     Dear God, what more could go wrong?

     Lots, we were to discover.

     See, that little mishap led to a blood clot. And that blood clot was only discovered May 19 after an emergency craniotomy.

    Now this is the thing we’ll never understand. As a hospital, you have a pregnant patient who ends up brain-injured while under your care: She falls out of bed post-surgery onto the floor while no one is watching her.

    So, she is CT'd and put back to bed where she’s vomiting – ‘cause she’s pregnant, after all, and has been really, really ill with a blocked shunt – and then she vomits and aspirates because, still, no one is watching her ...

     And then this poor woman, through no choice of her own, ends up having to come back to this hospital with this bloody brain injury because she just can’t get through rehab. So she falls a few more times –  cuts, bruises, stitches.

      But that’s not enough.
     This hospital – and others, too, I bet – uses a lot of agency personal support workers to fill the gaps. So this one night, May 19, 2010, there was a young fellow who had not only not worked very much at this hospital, he’d just arrived in the country and was all new and shiny to the job. (A staffer confided this information to us, as well as the fact this man had been warned to watch Mary and not leave her alone.)

   He took her to the washroom in the middle of the night. Mary would never go to the washroom with a strange guy. Even with a brain injury she would know this wasn’t right. And worse? The young man DID leave her alone – and unbuckled on a commode chair – and went off searching for a diaper.

     Mary crashed to the floor, hitting her head. We were not informed right away about this fall. Well, let’s face it. This is the fifth fall ... the fifth huge injury.  But who’s counting?
     Well, not the hospital, obviously.

     Paul notices the next day Mary’s not quite herself. We wait 20 hours for the results of a CT done several hours after this fall. (And this is IN the hospital!)

     We got the news after midnight, May 20, after calling the nursing station several times during the evening for the results. The bad news was given to us by one of the nicest nurses on the floor, a very sympathetic woman.

     Mary has a brain bleed – the result of that fall from the commode chair. She’ll need more surgery, likely in the morning.

     “I’m so sorry. I’m so sorry,” said the nurse.

Next week: Two craniotomies in 36 hours