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.