Mary is too disabled for long-term care

     

                                                        Spending time. Sunday, Feb. 8.

      The search for long-term care for Mary has started, and already there are snags. Are we surprised? No.

      Within a very short time of having her application sent in, we learned from CCAC that a large Toronto facility – whose care plan includes younger severely disabled people – flatly rejected Mary. The initial plan was to see how Mary fared in the facility as she underwent planned therapies. But even the offer of caregivers sent in to aid with her care was met with a ‘no.’

      For all of us involved with her day-to-day life, care, and the decision-making process, it reminds us of the nightmarish hospital days when we fought to find her a place to stay in the community: Nursing homes and long-term care facilities turned her down flat then, saying they couldn’t accommodate her.

        She is somehow TOO disabled, if that is possible.

        There might be fewer problems had Mary suffered her brain injury in a car accident. At least insurance funds would help ensure she receive adequate life-time care. But her injury occurred in a hospital – and no one there wanted to talk about it then, let alone now.

    

       So – with funds running low  – we now face a real conundrum. What to do with Mary? She is, as her specialist says, “a tough case.”  Her needs are specific, her memory short. But her understanding and comprehension are intact enough to make us quake at any changes that must be made.

       We have been assured by CCAC officials that there will be further meetings and inquiries made. So all is not lost – yet.

      But that doesn’t help the gut-wrenching, sleepless nights and constant worry.

      A year before Mary’s brain injury, she handed me her organ donor card.  I was upset and asked her why she wanted me to hold it for her. Her response?

     “You never know, do you?”

       It prompted a family conversation about end-of-life, spending time on life support, (since a few elderly family members had died in this manner and we had watched the painful process), and it led to each of us in our small family expressing the fervent wish that we not be kept alive or allowed to live in a reduced state, depending on others, not knowing what’s going on, having no control over our lives.

      We have living wills. Mary did not, so sure was she of her youth, her robust health, her future and career.

      Since April 8, 2009, we’ve all said it, over and over:  Mary would never have wanted to live this way.

       When the Superior Court recently struck down Canada’s ban on assisted suicide, Mary’s twin – who himself suffers with cerebral palsy – expressed some happiness. “If only,” Alastair said, knowing full well her wishes.

      But I had to remind him that Mary would never qualify – even if legislation was put in place – because of her lack of understanding, her lack of memory, her inability to hold an idea and see it through past a ten-minute span.

       So she exists, but only just. Her quality of life is very poor, despite our furious attempts to change it.  And because of this fact, no one really wants to take on Mary and try to deal with her special situation: A sort of mission impossible.

     On a brighter note, the 18-month waiting list is almost up for a communication device and today we received a phone call to set up an appointment. Extensive testing more than a year ago ascertained that Mary would probably benefit from the type of voice-activated device used by Professor Stephen Hawking.  So we are more than anxious to see how this might improve Mary’s life.

       The legal wranglings have pretty much wrapped up: It’s been an ordeal. While we now know, due to the College of Physicians and Surgeons report, that the young resident did NOT do enough to ensure Mary’s care and safety that night, there was, we believe, a lot of covering up by the hospital, a complete lack of communication with us, a hostile attitude and lack of co-operation.

     This worsened when, a year after Mary’s initial injury, a rookie male caregiver left her unbelted on a commode chair in the middle of the night. Mary fell, hit her head hard on the tile floor and needed two craniotomies within 36 hours for severe hemorrhaging. (She’d been on Fragmin, a blood thinner, due to her lack of activity and bed-ridden state). And yes, we believe we saw this young male caregiver still working in the hospital long after this incident.

      The wrapping-up letter from the law firm was interesting. Concerning the second lawsuit for the fall and craniotomies (we received verbal apologies from hospital middle management), the lawyer wrote: “The current defence lawyer has made it very clear to me that the hospital will not pay any money whatsoever.”

     (Knowing this, we are more than thankful we did not decide to meet with hospital officials to learn of the safety measures they’ve put in place since Mary’s incident. They’ve apologized. But it’s not enough.)

       So there you have it. To repeat: Beware. Choose your hospital wisely. Ask lots of questions, even in a panicked emergency situation. Don’t believe your family member is safe just because they’re in a hospital.

      And never, ever leave them alone.

    

       

Looking to the future

                                               Face-makers: Isabella and Mary

UPDATE:  Mary is in a holding pattern. In fact, we’re all in limbo, not quite sure of the next move.

     Still unable to walk, still unable to remember anything for more than ten minutes, still unable to feed herself, still needing constant care – two doctors in the past two months (her extremely understanding and compassionate GP and her wonderful physiatrist) have said there is little chance that things will change now for Mary.

       Most of any improvement for an individual with severe anoxic brain injury comes within the first two years. It will be six years since Mary’s brain injury on April 8, 2009.

      I reel when I think of the amount of time that has passed.

     Mary has had five more hyperbaric oxygen chamber sessions, bringing the total to 45 since August.  Have they helped, or have they simply been a desperate ploy on our part to see change? For every ever-so-slight improvement, there are many days when we see her completely and utterly defeated, frustrated that she cannot do what she would like her body to do. 

        Despite the defective memory, she still communicates using her alphabet board. (We’re a year into an 18-month waiting list for a light box.) She can do the crossword puzzles with help and gets most of the clues right. Chunks of memory have risen to the top and she will ask where her engagement ring is, (in storage), or recall things that occurred leading up to the injury. She still surprises us sometimes.

       Mary had an uproarious laugh and an enormous smile; she still gets the humour and innuendo we use to survive and manages an odd-sounding laugh.

        Her father, (who could be described as somewhat absent-minded), has a habit of leaving things on top of his SUV and driving off, forgetting he has put anything there. Around Christmas, after we’d stopped for a light, a man came running out into the intersection yelling, “Hey man,” and waving his arms. Slightly alarmed, Paul yelled back, “No thanks,” which makes no sense. (Unless you know Paul.)

     “No, no,” the guy said, coming up to the car and reaching up to fetch a full two-litre container of windscreen washer fluid from the car roof. “Surely you’ll need this?”

      We’d travelled about 12 city blocks like this with two dogs, Bob, (Mary’s partner), and our singing granddaughter Isabella in the backseat.

      When told the story, Mary laughed so hard she doubled over. It was the best laugh I’d got out of her since the last time her dad left his coffee/phone/wallet on the car roof and driven off.

       Brain injury or not, her sense of humour is still very much there.

      

              Happier days: Mary with her twin brother, Alastair, on her wedding day.    

    

        But it isn’t getting easier for any of us. Money aside, the physical work of having to make sure she is well-supplied, of getting her to appointments, of being guardians instead of parents, of having to worry about the consequences of various minor and major complications – is becoming too much. It is affecting us in many ways, straining relationships and making our house a stressful place to live.

         Long-term care noises have been made and we have let it be known to Mary’s caseworker this is the road we must now start to consider. It has been a hellish decision, but we’ve given absolutely everything we’ve got – in every way – to try to get Mary back. If an elephant could do somersaults, we’ve done the equivalent of that – and more. We promised, as she lay in ICU, pregnant and struggling to come out of the coma, that we would do everything in our power. And we have done that. We can’t do anymore.

         The decision is the culmination of years of lawyering and struggling to get compensation for Mary, which we haven’t been able to do, despite the College of Physicians and Surgeons finding it was pretty much the hospital’s fault that Mary is the way she is now.

        Nothing has worked. No one, it seems, wanted to go up against a renowned and well-liked neurosurgeon. (It was a resident, not the neurosurgeon, who worked with Mary that night. He did not consult with this neurosurgeon, nor did he check with the senior resident after Mary fell on the floor, post-op. The College finding stated this second year resident did NOT do enough to ensure Mary’s care that night.) Bare bones protocol, which was carried out, trumps common sense. Protocol is all an expert witness sees. 

         We wrote to the hospital CEO last fall and got a letter of apology. That letter was also sent to every board member and a few weeks ago we received a letter from the board chair, as well.

      “ … I would like to express, on behalf of all Board members, our deepest regret for what has happened to your daughter, Mary. As we read your letter, it is not lost on us that this has had a significant impact on your entire family.”

      The CEO wanted to meet with us to discuss improvements in care the hospital has made since Mary’s fall. We initially thought we could do it. We were so sure we could do it.

     But prior to Christmas, we ran into a couple of health officials who looked after Mary during some of the darkest times in those early chaotic and traumatic days. They were pleasant. We were pleasant. But that night, after I finally got to sleep, I was overcome with PTSD symptoms, something I thought I’d finally put behind me.

      So no meeting, although the door is open.

      Who knows? As the frigid winter turns to spring, as more time passes, we will, perhaps, be able to attend that meeting and hear about all the wonderful changes they have put in place – programs and quality care practices that should have been in place when our beautiful daughter was in their care; practices that would have ensured her safety, given her a normal life, let her continue her career, let Bob have his life partner, Isabella her mom.

        And perhaps as a parent, I wouldn’t be endlessly advocating, writing letters, fighting health-care officials, pushing buttons, getting angry.

       However. It is what it is.

        I’ve accepted the futility of it all.

       Finally.

      

General health issues, wheelchairs and a letter

        


     

      NOVEMBER UPDATE: Mary’s general health is quite good, despite the fact she occasionally needs to visit her GP for various small complaints.

       But she’s been suffering from a common ailment for the past month and really needs an ultrasound test – sooner rather than later. Easier said than done.

       This week, over the course of a morning, we tried to make appointments for the test at three different clinics.  Not one person arranging the appointments on the other end of the phone seemed to understand the words “severe brain injury” or “problems swallowing.” They were insistent that Mary would absolutely have to down five large glasses of water for the test.

      “We might get one thickened glass of water into her,” we told them. “It takes her a long, long time to get any fluids down.”

      Not good enough, despite the fact she has had ultrasounds for the same problem without having to drink vast amounts of fluid.

      So this is what happens when a disabled person – with two aggressive, insistent and vocal guardians – must contend with when they are in a community setting.  It’s as though no one listens. And no amount of repeating or explaining makes a difference.

       Mary will get her ultrasound – later rather than sooner – at a clinic we’ve used before, one that understands her condition. But so much for urgency.

       Still, we managed to not rush to an ER in a panic, but kept a close eye on the condition and monitored it twice a day.  So far, so good, in this case.

        But what happens to those in the community without rabble-rousing parents who can shout if necessary? I shudder to think.

         Mary, we were told by one health care official this week, fell through all the cracks in the system along the way. And this is while we were there, all the time, advocating, pushing, being mouthy, complaining, writing letters, questioning and being obnoxious.

         How many disabled people are there out there struggling without advocates? If Mary fell through the cracks, who’s out there dangling and needing care and not getting it? What do they do? Who do they call? There are only so many agencies – all of them pressed to the wall – that can handle tough cases. Who waits the longest for attention? And how long is their wait?

         It’s a nightmare.

       Mary has two wheelchairs – one ordered for her needs while she was in the hospital, and a new one that is more adapted to her present needs. Both are precarious. They cost almost $12,000 in total (the Ont. government pays almost 75% of this cost for those who need chairs). But you’d think they’d been put together in a discount store. Tires go flat, arms flip off, footrests fall apart, pins and screws clatter to the floor. Other than the private therapists, Mary gets the most visits from medical equipment repairmen.

       And she’s not freewheeling it down the street, either. She spends most of her time sitting in her own apartment. We’d probably have to hire a repairman full-time if she were to suddenly take wing and want to go places.

An interesting note: About a month ago, I,  on behalf of myself and Paul,  wrote an 8-page letter to the two dozen or so board members and CEO of the hospital where Mary sustained her brain injury. We waited a long time to do this. I wanted all the expert witness reports, the report from the College of Physicians and Surgeons. I wanted to have all the facts and opinions before me.

        Interestingly, the experts and college all said the same thing: The young resident on duty that night did not do enough to ensure Mary’s care. He followed protocol, but he could and should have done more to get her into an ICU.

       The letter wasn’t accusatory, and it wasn’t too, too terribly critical. It did point out the fallout that occurred from that night of misjudgment and failure, how it affected Mary and each and every member of her family,  how it is still affecting Mary’s quality of life.

         Mostly, the letter beseeched the hospital to never allow this to happen to another patient or their family (let alone a pregnant and post-operative patient) and to ensure that safety measures have been put in place since that dreadful night.  I pointed out that we’d seen some mighty dodgy things in our three and a half years at the hospital and that we had, on occasion, been on hand to help divert pending disaster with other patients.

        We didn’t expect an answer. Didn’t, in fact, even want one. It was something that needed to be said, was said, delivered and done with. If I never heard another word from a single member of staff at that hospital it wouldn’t have bothered me. I could easily have gone to my grave with it all put behind me once that letter was delivered.

        But we got an answer from the CEO – and an apology:

        The CEO apologized on behalf of the hospital and “personally for what happened to Mary and your family. I have read and reread your letter and I have heard you.”

       I was assured he had taken all our concerns “very seriously.” 

       The CEO also would like to meet with us personally to share “those changes we have made.”

       One problem: It's still raw, even after five and a half years. We're battle-weary. And do we really want to meet after all we’ve gone through?         

       Shouldn’t we just be happy knowing changes have been made to ensure the safety of other patients?

      And how would I ever get through the door of the place to meet with these people without collapsing on the threshold with an anxiety attack? 

      Do we have to do this? Should we do this?

      Well, maybe. 

     

    

       

Battle with food continues to bewitch and bewilder

      

                                                                                Thanksgiving, 2014

         We’ve been terribly close to giving up entirely on Mary the last few weeks. The trekking, the worry, the appointments, the constant needs, the therapies that go well one day and disastrously the next take a tremendous toll on her, but it’s overwhelmingly exhausting for her parents, too.

         It’s enough to do in your body and soul. And we’re not young anymore.

         But Mary keeps plugging along, sometimes showing great improvement, at other times appearing to slide dangerously backward. There’s no upward continuum with a severely brain injured individual. The downs are greater than the ups and the disappointments frequently outweigh the victories. What is crucial is that there is an incremental change upward overall, and we see this even on the bad days.

          It’s challenging for all of us.  It’s just the way it is. It’s hard to accept and hard to live with this awful, unsolvable fact; there is no cure, no pill, no operation to alleviate any of  Mary’s problems. Nothing will possibly change a brain injury. They’re an enduring and unconquerable foe, elusive, unseen, unpredictable and downright sneaky.

         A sad aside that points out that even doctors aren’t immune to insensitivity regarding neurologically and brain-damaged individuals: I was at an appointment this week and while I was dealt with in a professional manner, I found this doctor chivvying along a man who clearly had suffered some brain-oriented disaster; “Come on, Mr. xxxxx, we haven’t got all day,” as the poor old soul shuffled along moaning and trying to keep up with this impatient medical man. I was horrified. Then I thought, well, what do you expect in this day of cutbacks, no time, too much pressure on a stretched service?

          Respect. I expect to see respect for the most damaged, confused, hurt and bewildered patients who often don’t have a clue as to where they are or why they’re there.

          It broke my heart, and I will never again look at this doctor in the same way.

          Mary’s trials with food continue to bewitch and bewilder us. Some days she’s fine; other days she struggles to eat and swallow.  She’s maintaining her weight – she’s tall and slender – but the entire process of keeping on the pounds is a tiring one. She may have to be fed more supplemental fluids – similar to Ensure – because it packs more of a nutritional punch and is a product that is frequently used to feed those with gastric tubes (or peg tubes).

           Food isn't always her friend: She nearly choked to death twice at the family Thanksgiving dinner. She was excited to be there. She always loved family gatherings, seeing aunts, uncles and cousins. She wanted a glass of wine, she wanted turkey, she wanted the stuffing, the green beans (a no-no), she wanted it all. And even though she got most of it, mushed up and cut into tiny, minute pieces – it was too much for her.

         She wanted to be normal, to show us she could do it.

         Ambition can be a dangerous thing.  It wasn’t the first time Paul has stuck his fingers down her throat to dislodge whatever was causing the problem. As you watch, you feel your entire body tingle and numb with fear. You wonder, is this it?

         Mary can – and does – choke on the littlest thing. Some days she grabs her coffee thermos and downs her favourite drink without a hitch. Other times…. Exhaustion rears its head and weakens every fibre of her being. At those times, feeding can take an hour and a half, despite the fact her fluids are thickened, her food is mush. A lot depends on what’s going on around her. This time it was a combination of fatigue and excitement.

         We all miss our mouths at times when we’re tired, spill coffee down our white shirts, drip and swallow the wrong way if distracted. But those missteps can be critical for a brain-damaged person with muscle impairment.

          It sounds horrifying, but we’re so accustomed to the hazards of Mary and food and drink that we simply react while others would panic. Panic is not an option.      

          This week during physio, Mary cycled three kilometres on a stationary bike without stopping to even think about it. She stood when asked, slid down the wall, took ‘good’ steps and showed great promise. This doesn’t happen every time. But it happens enough that we hope Mary can take part in a more intense process of rehab down the road.

         She may never be without the need for 24/7 care. And nothing will likely change that short-term memory, a 10- to 15-minute window of knowing what’s going on and being aware of the people around her.  She will never cook another meal, she will likely never be able to bathe herself. We know she will never do her own laundry, make her bed, do her dishes or have enough memory to accomplish the things we take for granted. This will never be and we can accept that. (Well, we can’t. But we have to.)

         But we do have a few goals in mind for her, which, we believe, she can attain.  We hope, because she is so physically strong, that she will one day have enough balance to walk on a smaller walker and shuffle about – albeit precariously. This would be a huge improvement. This could prompt more changes in her.

        And, because the hyperbaric oxygen chamber therapy improved her eyesight, we hope she will be able to read more, watch more TV, know what’s going on in the wider world.

        Our hopes and dreams for Mary are hampered by the intricate and extensive damage done by a lack of oxygen April 8, 2009. All of Mary’s life and dreams stopped that night. But ours didn’t. So even though we’re tired a lot of days and fed up most of the time we’ll try to keep some dreams alive for Mary – and more importantly, her daughter.