The waiting just never ends

                                           Mary at a favourite coffee spot: 

                                             downstairs at Hudson's Bay

       Months later, and we’re still waiting. Mary – with all family funds fearsomely low – needs a place to live, a place where she will be safe and cared for in the event that one or both of us dies. We’re looking for a long-term solution. We’ve been asking for help with this for months and months.

    The short-term, “get her the hell out of this hospital” solution of a rented apartment is coming to a close. There is no money left to sustain it.

    (Mary's pensions cover her rent and a few other expenses. But they do not cover all the costs of her food, therapies, extra meds, clothing, etc.)

      It’s starting to feel like Paul and I might as well join an Everest hike and hope to survive. You’d have to really know us to realize the hilarity of this suggestion.

      Finding a place to live sounds simple, doesn’t it? But it's not if you're severely brain-injured. Mary needs an extra-safe place as she cannot feed herself, walk, or talk. All her needs must be met by another person. 

     And that is the problem. It seems, in our great province, that there just aren't many places for a person like Mary. 

     Nursing homes and long-term care are out. Even a specialist – who no longer feels it necessary to see Mary – says Mary “doesn’t qualify” for long-term. And she doesn’t qualify for nursing homes because she needs 24-7, one-on-one care. 

     She just doesn’t “qualify,” to the point where this doctor – the one we’ve been seeing for several years – says there’s no need to rebook another appointment. 

    ("What? Did Mary just get blown off?" Bob asked.)

     The situation has drained every single one of us. It used to be you’d hear Americans complaining of this: “His heart attack wiped out everything we had,” a woman once told me of her husband’s sickness. “You’re so lucky to have health care.”

   Yes, we are. But don’t for a minute think that your OHIP plan covers all you’ll ever need if you have a catastrophic injury - brain or otherwise. Even your very good extra insurance from your employer won’t cover it all. There’s a limit.

     Mary – and us,  her family – have reached that limit in so many ways.

    It has taken months and months to get to the point where her CCAC caseworker and a supervisor, plus two individuals from an independent living organization met with us at Mary’s apartment to discuss what to do. They had no suggestions, either. But they have vowed to come up with a plan and get back to us in a month.

     Mary is a unique case. (I can’t begin to count the number of times we’ve been told this.) And any solution, we heard during this meeting, would have to be a cobbled-together plan of care. A bit of this, a bit of that; a few hours from one group, a few from another, maybe; we could all pull together, along with “Mary’s parents,” of course, to provide some answer.

    But we can no more continue the level of our involvement than climb Everest. (And, by the way, it feels like we’ve metaphorically done that a dozen times over the past six and a half years.)

    We are still running, buying groceries, taking her out, making sure she has everything she needs, answering calls and ensuring she gets her physio. We need some respite from the constant and unbearable load.

       The CCAC supervisor looked at us during this meeting – where Mary sat, eyebrows raised, taking it all in – and asked us how desperate we were, at what point were we in needing help to find Mary a long-term place.

        I answered, “We are ready to take her back to the hospital that did this and leave her in the lobby with a sign that says, ‘You did this to her, you look after her.’ ”

      

     Mary seems to understand what is going on. She nods as we talk, taking in the horror that is her life and understanding – for about five minutes. Then she forgets, just like she forgets everything after five minutes.

     The CCAC has a difficult job finding spots for people like Mary. What a job it must be.

    

     The very next day, the caseworker called with something that had come up; an apartment that would be shared with another severely brain-injured individual – a young man whose family is very involved in his care, too. The two patients could share this 2-bedroom apartment. This young man has, of course, male caregivers.

    But wait a minute. Who would pay for what? Whose place is it, really? And if there are differences of opinion? What if someone doesn’t show up and the other caregiver won’t look after one or the other patient? Who buys what and how do you keep the food and provisions separate? 

      It’s a solution with as much potential for disaster as sending a colony of cats to the moon.

      No. Our lives are messy enough as it is with just one family, us, trying to figure things out. We tried to explain that we want Mary in a larger facility with a lot of people she can see, listen to, watch - a place where we can visit, have quality time and not worry about the groceries, the rent, the bills, the baths (she pays for her baths – about $5,000 worth in the past three years), the little things that go wrong – plumbing, AC woes, TV breaking down, meds to fetch, making sure she has thickener for her drinks (you wouldn’t believe how fast that stuff goes), making sure the drinks she likes are there … and so on. The list is endless.

     Two more places have been mentioned to us: One sounds great but they have no spots. Another seems a fair distance away for visiting. But we will visit both and consider what's best for Mary. And we'll see what they come up with in October. 

     Disabilities are all about compromise. Families of the disabled have few choices and we're willing to work on what's best for Mary.

    While her health is excellent at this moment in time, ours is not. I can’t even begin to count the myriad little chronic health problems that have begun with the constant stress. I do know that in the past three months we have been ensconced in an ER  and that there have been a couple of minor surgeries this summer. 

      

       We feel old. And yet we’re not that old.

      Friends have told us to write our MPP, our MP, the health minister. But surely they all must know how dire the situation is for patients such as Mary. Hardly a night goes by without a news story on another family’s medical crisis.

    We wait patiently for CCAC’s cobbled solution. Somehow it probably won’t fit Mary’s needs – as if anything would, so dire are her injuries – and it probably won’t quite fit ours.

     This is what happens when a lawsuit falls through. You spend thousands in legal fees trying to get justice, encouragingly being told you’ve got a good case, and to find out what really happened that night. You know the hospital (or in our case, one resident) is responsible, you’ve seen the reports, you’ve talked to the expert witnesses. You’ve got the College of Physicians and Surgeons' report. 

     We know we weren't dreaming, that our instincts were right. But it doesn't help a bit.

     In the end, it's the family left holding the bag - and feeling like the guilty party.

  

   

                                      

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.

   

       

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.