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.