Health battles require patience

UPDATE:  

        We’ve both reached a new level of virtuousness, the result of patience worn to a patina as we wait for developments for a more permanent solution to Mary’s long-term care.  Even though we realized it would take time, the level of bureaucracy and details involved in finding somewhere appropriate is mind-boggling – even for a pair of hard-core cynics like us.

         It was bad enough that the much-planned rehab (talked up for 10 months and then dropped abruptly for some reason), fell through, tearing away that final shred of hope for Mary. Now the process of determining how much care she would require in an institution is underway.

       Can she survive overnights without someone on hand? Maybe, if the bed is alarmed and lowered to the floor with thick gym mats placed nearby – in case she rolls off the mattress. Can she feed herself? No. Wash herself? No. Brush her teeth? No.  In fact, Mary can do nothing on her own. If she tries to scratch her own nose she frequently leaves a long red mark on her cheek or forehead, so bad is her co-ordination.

       How often would we be around? How much money can be put in?  Where will she go? It’s all up in the air. She doesn’t fit the protocol for long-term care as she breathes on her own and doesn’t have a gastric tube.

       So finding a place that fits, making sure Mary is safe, is a daunting task.

       Our greatest fear is that one or both of us could die and Mary’s rest-of-life care and guardianship left in the hands of someone who doesn’t know her.  We believe she deserves better than this, so we’re closely keeping track of what’s going on at CCAC and frequently calling her ever-patient caseworker, who surely must be ready to wring our necks. If you’re reading this, we’re bugging you L. because we’re terrified and out of our minds with worry. We are overwhelmed with the situation and fearful for our daughter.

       It’s not just Mary we have to worry about; her twin brother, disabled from birth with cerebral palsy, is another concern. It was Mary, the confident social worker, who assured us she'd keep an eye on her twin when we died. And while neither of us intends to slip earth’s surly bonds just yet, we’ve been reminded in the past 24 hours that we often have no choice:  A cheerful and optimistic neighbor – a year older than Paul – has just been found dead of a massive heart attack, shocking the wits out of everyone in our small neighborhood. You just never know.

        I wrote a few months ago about receiving letters from the CEO and board chair of the hospital where Mary suffered her anoxic brain injury.  (We wrote a detailed letter several months ago outlining our unhappiness and concern over their lack of care.)  

       Their apologies, while mildly appreciated, have not had the slightest impact on how we’re dealing with Mary’s situation. Too little, too late.

      Words are cheap in the aftermath of a crushing tragedy.

       Those hospital officials assured us they’d made changes and invited us to meet with them to discuss those changes. Initially we thought we could do this. After running into hospital staff and experiencing a return of the PTSD we suffered in the aftermath of April, 2009, we decided we’d never make it.

        Now I can’t tell you how glad we are we didn’t meet with them.

        In the past four weeks we’ve been asked to speak and offer support to two different individuals whose spouses have suffered brain injuries in the past few years at that same hospital – the result of falls.

         I’ve endured a number of sleepless nights since hearing of this.

         Just what the hell is going on at that hospital? Why has it happened again? What about the so-called safety measures and changes we were told had been made?

         No patient should be allowed to fall – period – let alone suffer a debilitating brain injury as a result of a fall.

         Anger doesn’t begin to describe how we feel about this.

         And now – there are plans to cut hospital nursing staff, according to Ontario health officials.  

         Our pregnant daughter’s post-op fall, vomiting and aspiration occurred on the night shift – when nurses are already few and far between.

           Stay well.