Coping with the fallout

                                                                    Mary on Monday, May 24


      

      There’s really only one way to cope with a tragedy of this magnitude. It doesn’t go away and it only gets better if Mary gets better – and that’s been slow in coming.

      So we deal with much of the situation on a daily basis by using as much humour as we can muster, by finding the funny in the absurd. And heaven knows, this has been one strange journey for us all.

      We do it – find the funny – because Mary had a fabulous sense of humour. She found the most ridiculous things hilarious and had a fairly balanced way of dealing with life’s problems. She had a lot of common sense, a quick intellect and a marvellous sense of funny.

      We take our cue from her.

      As the spring has crept in, Mary’s well-being has improved, even if her memory hasn’t. We brought her to our home this week, walked in the woods, looked at the fledgling blooms of neighbourhood gardens and sat her up to the table for dinner. But not before she nibbled on potato chips (a first) and quite adeptly drank ginger ale. If that didn’t surprise us, we were amazed when she grabbed her fork and did her best to feed herself for most of the meal.   

      She was amazingly well and was communicating above her usual level. Mind you, on the way home she tapped out to Bob on her alphabet sheet: “What did I eat for dinner tonight?”  (Still, we’re finding more and more, if we prompt with a letter or word, she will recall names, places and events. We hope this means that cognitively, things are improving. Maybe all those games on the iPad are working, all the prompting, cajoling and repetitive reminders.)

      Best of all, we laughed, Mary sniggering at our sarcasm and understatement, bad jokes and observations.

      We take it as it comes now. But it wasn’t always so.

    

      As with any disaster or loss that befalls a family – and I’m talking major accidents and death – there is a horrific period of mourning, an anger and then some sort of resignation and acceptance.  It can take years, I’ve been told. That person is always missed, there’s a huge hole in the family structure, their history and life story.

       But a death in the family usually brings closure over time. We have no closure. We’ve had people who’ve lost loved ones say to us, as they observe Mary in her chair, “Well, at least we had closure.”

    It may be tragic, horrid, unforeseen and unfair. But death is closure. And the bereaved, I was reminded by a health professional a few weeks ago, do move on – reluctantly, with part of their souls gone.

       We’re still trying to cope, and that isn’t easy. We make it up as we go along as best we can. There is really no solution, as I was reminded by that same health professional.  We are still mired in trying to accept a desperate situation while dealing daily with the fallout.

       Every time we look at Mary – which is most days – we are reminded that there may never be a solution to her problem or a way to get her back. And God knows, we’ve tried.

       We are constantly reminded of one doctor’s failure to obtain the proper vigilance and care in an ICU for a pregnant, post-op, neuro-patient. The confirmation by the College of Physicians and Surgeons that this was so has gone a long way to helping us cope. We know now, through consulting with expert witnesses, more of what happened that night. That helps, too. It doesn’t mitigate the anger, or the overpowering sense of disbelief, but it does help even though it’s likely to be as much as we’ll ever know.

     (Unfortunately you can’t sue a resident doctor on those findings, even if those findings are given by a professional board of his peers.)

       It’s a medically sordid tale still mired in legal wrangling.

       So. Everyone else involved that night in the situation that caused the tragedy has moved on; the resident, the nurses who took part in the Code Blue (“people die, what can I say?” one said to me when I expressed my horror of the situation), but we are still trying to find closure and it’s nowhere to be seen.

      An apology or lawsuit might have helped us to come to grips with what happened to Mary, but lawsuits cost law firms huge dollars, take years and a lot of work. If it’s not cut and dried, you’re out of luck; and doctors and hospitals have deep and well-stocked war chests.

       So you cope as best you can, taking things a day at a time. But our lives

 have changed beyond belief.

      Moving on? That will take some work, even though we’re not alone in helping to care for an brain-injured loved one.

      There are many people like Mary out there behind closed doors, in homes and nursing facilities. That much we do know. Pushed into the medical tragedy corner and hanging out at various places that deal with such horrors, you meet people who’ve also been wounded, their loved ones struggling with the things-that-happened-that-shouldn’t-have-happened while going about their lives. We meet people who have suffered traumatic brain injury, had hemorrhages, strokes, clots or tumours, falls. We commiserate. Swap tales. It’s not much fun.

       There is always the fear of some program or other being cut, of having to pay ever more for therapies and help. And finding that help, and the right programs, is another situation altogether. The more brain-injured the individual, the harder it is to find health workers willing to take on a tricky patient like Mary.

      It’s a conundrum. But you keep going.

      There has been a lot of fallout.

       When this happened to Mary five years ago, our disabled son (Mary’s twin), was so overwhelmed by the loss he moved back in with us temporarily. When he finally returned to his own apartment, his loss was still so great, he returned to home base and has remained with us to this day. He’s a lost soul without his social worker twin, finding his parents a bit fuddy-ish and not quite up to date in all things. Still, we’re his port in the storm.

       And we manage to keep him laughing.

       Somehow, the three of us muddle along, missing Mary, but looking out for better days.

      We’ve made dreadful mistakes since this happened: we’ve been panicked, frustrated and fearful and haven’t always been thinking straight. We now hold moratoriums on huge decisions; three heads are better than one. And anyone’s head is better than our three, it would seem.

      Coping often comes at a cost.

      So a few weeks ago, when I visited a specialist to try and help me find a way to move on and cope better –  a lovely individual, but with no answers – he simply looked at me and said: “Mary could live a long time. You’re just going to have to put the situation in a compartment and carry on with your life.”

      My life. It’s missing someone I love dearly; someone who is still here, but not here, who may never be here again, but who still looks at me and tries to be here for me, for all of us.

      Guess I’d better get busy constructing that compartment. Wood? Concrete? Or, perhaps a filmy structure of dreams and wishes,  memories and hope.

Mary is stable, fairly healthy and still having vigorous private therapy; there are tentative plans to increase some therapies, if possible.

I will be updating this blog from time to time, probably monthly, as things change or improve in Mary’s journey.

In the meantime, we will continue to do all we can for Mary. Thanks for reading!