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!

   

Struggling to be heard

  

                                                    Mary and her twin brother Alastair indulge
                                                           their love of coffee two weeks ago.
     


      Mary loved to talk. Boy, could she talk. And talk. She’d phone us a few times each day to fill us in on what was going on, to tell us funny things that had happened to her at work, to moan about things that weren’t going right … or, to just talk. She was the Queen of Communicators. You knew exactly what she was thinking. She gave outreach talks at centres for the disabled, was eloquent and none too shabby in the writing department.

      She called us once – it came through on the car phone – laughing hysterically to tell us she’d just walked down Yonge St. with a schizophrenic client who’d yelled her name over and over at the top of his lungs.

      “Oh God, how embarrassing,” one of us said.

      “He can’t help it, not his fault. His meds aren’t working,” she said.

      Compassionate: an advocate for the hurting, the wounded, the people who have a hard time in this life. She understood.

        It has been more than five years since Mary has been able to really communicate. The first sign we had that she was still there, still Mary, was on Mother’s Day, 2009. She was very pregnant, essentially still in a coma, but opening her eyes at times and trying to look around. She was in an ICU unit and monitored closely –  the plan to place her in palliative care once Isabella was born by C-section still very much an option.

      I asked her if she could smile for me – a daring thing as she was only in what they called a slightly heightened state of awareness. Could she understand me? It was worth a try. I noticed the nurse watching closely as I asked her again, “Mary, can you give me a smile?”

     Eyes barely open, she moved slightly in the bed and the corners of her mouth lifted and stayed that way. It was a start. I was ecstatic – to the point where I kept saying, “smile again for me.” She would have been rolling her eyes at me and sighing if able.

    Five years:  Imagine wanting desperately to communicate and you just can’t; the muscles in your throat become taut, your jaw seizes, your mouth just won’t move to form the words. That’s Mary. And the sound she makes, instead of speaking words, is a constant moaning sound that lifts and falls, breaks and stops. She so desperately wants to talk as quickly and fluently as she did at one time – and she can’t.

     It was always important for us to be able to understand Mary, to know what she was thinking, feeling, wanting. It became even more crucial this past autumn when a psychologist determined Mary’s intelligence is fairly intact. When he quizzed her about a hypothetical situation and asked her to define it, she croaked, “patronization.”

    When prompted, surprised, upset or angry, she can squeeze out a word or two that is completely comprehensible.

     There was an incident a few years ago, while still in hospital, that convinced us that Mary could speak if only she could get all the parts that comprise speech to work at once. We were visiting and talking about religion, something we don’t usually discuss. A staff PSW was sitting at the end of the bed, listening as Paul and I were admitting that we really couldn’t grasp the idea of belief anymore. Mary’s head came up and she said, as clear as day: “I still believe.”

     We were utterly amazed. Paul said to her: “Well, I guess if anyone’s seen the face of God, it’s you.”

     These periods of speaking clearly to us are few and far between. And why? We don’t know. We can’t get any answers. We know there was no damage to her vocal cords as a result of being intubated for an extended period of time; they did tests at our request.

   But we do know this one thing: Mary has a great desire to talk. She could talk the hind leg off a donkey (a dreadful cliché).

    She now fights like mad to work all the muscles that help us speak, including the proper exhalation of breath. But she just can’t. It’s a matter of the brain damage causing spasticity in the face and throat, the brain unable to give the right messages. But she tries. And tries. And yes, there are words buried in that moan and we can, incredibly, sometimes make out some of them.

     A few specialists have told us that she may never speak again, that the damage to her brain is so great, her memory so crappy that she will never regain the ability.

    And yet. Tell her something surprising and she’ll pop out a full short sentence and leave you gaping. How can that be? Why can she not consciously speak and yet speak when she’s distracted or surprised?

       In the early days, when she was still in hospital, we got Mary on a rehab list to have her equipped with a Dynavox. It’s a clunky machine that attaches to the frame of her wheelchair and works with Microsoft. You can send email, program sentences and phrases and do all kinds of things with it. But, due to her questionable eyesight, Mary’s Dynavox came with a fairly large keyboard, which was then covered with a piece of thick, clear plastic with holes. She was supposed to put her fingers through these holes to reach the correct letter of the alphabet.  

      It was useless, but we rented it for a year – better than its $10,000 cost. And she persisted with it. We programed in phrases, names, places and her bio. At the push of a button she could ask you how you were, she tell you what she wanted, she could give you her resume and work experiences. It was brilliant. But she just couldn’t get used to it.

     Mary has a certain amount of spasticity in her limbs that causes no end of concern and panic, at times. She was getting Botox injections in her arms to try and help this, but the last few times she’s seen the neurologist, her arms flop when he lifts them. He can move them, raise them, flex them. And he’s decided she doesn’t need it. And she probably doesn’t.

      But – and there’s always a but when it comes to Mary – ask her to use a finger to poke out a message on the Dynavox keyboard and she hits everything but the right key. Her arm shoots this way and that. It’s not so much spasticity, we’ve been told, but dystonia. Whatever it is – the lack of co-ordination and her eyesight put an end to the Dynavox.

      We then tried various excellent programs on a large iPad. Again, while it is a marvellous device for disabled individuals, it was useless for Mary; her hand would drag across the surface as she attempted to tap out a message and she’d end up frustrated and in tears.

     What has worked is a laminated alphabet page and we have several of those lying around. It’s primitive and although it works, it still doesn’t enable Mary to say more than a few words at a time.

      But we’re still trying for something better, a light box that the psychologist believes would really help her. “It’s not Mary, we just haven’t found the right technology,” he assured us. She is now officially on the waiting list for a light box, which is the type of device used by Stephen Hawking.

       The wait could take 18 months.

       This is the kind of thing that drives the parents of disabled children crazy. It’s the waiting. And waiting. There simply are not enough resources out there to help the disabled.

        Meanwhile, the iPad now holds short stories Mary can listen to as well as a number of cognitive brain games. Downloading a novel would be futile as her short-term memory loss wouldn’t let her recall what was going on in the book. It’s really too bad because she was a voracious reader.

       So we wait. And we play those cognitive games, and memory games, and we do exercises with Mary and remind her to move her mouth when she tries to talk.

       Just as dementia robs families of loved ones, brain injuries wipe out the person you knew. Gone is the extra-huge smile, the rapid-fire wit, the quirks and intelligence that comprise a whole personality. You are left with a shell, a horribly hurt brain that doesn’t allow your family member to skip and run as they used to, to laugh uproariously, to bustle about, to tell stories, to joke, to sit comfortably, to remember the times when … you are left with remnants.

      It is from those remnants that you try and mend the fabric. They’re odd-shaped pieces that don’t fit anywhere, don’t connect to other bits. So you move them about, try this way and that.  You work the bits that have some shape and you hope that by doing that you’ll tease other parts of the brain to figure out the pattern, to rewire, reconnect. And you watch closely.

       There are good days and bad. What we have discovered is that Mary – a whirlwind on two feet prior to her brain injury – needs a lot of stimulation, a lot of talk and conversation. She is bored just sitting in her wheelchair. She wants to be around a lot of people, that much is clear to us. She brightens up and listens when she has visitors, she taps out messages on her primitive laminated board. She tries to join in. She comes … alive, almost.

       So we hope. And we watch.