Dragging Mary back from the depths

      

                                                          Isabella and Mary

         Just when you think it’s all in vain and that nothing is moving forward for Mary, it gets a little better still: Mary continues to be more aware, interested in things around her and keen to do better. Her memory is still patchy, but there are times when she can and does remember for longer periods of time. She is – as many of us are ­– affected by the weather and she definitely doesn’t do as well when the humidity rises. She fidgets and her eyes droop as though she is about to nod off in her wheelchair.

       We used to think Mary had become resigned to her situation, sitting endlessly in her wheelchair, being fed, seeing the same four walls, taking life as it came to her. But we’re not so sure now.

        There is, deep inside Mary, the knowledge that life is going on around her – and without her. She cries often when you go to leave. She cries when you give her news of friends – news you’ve already given her, news she has already cried about.

      This past week, we reminded her that one of her friends, a young woman she’s known since Grade 2, is getting married in London, England, and that some of her friends would soon be on their way to attend the event. (Johanna was one of Mary’s bridesmaids.) Mary burst into tears and pointed to herself. She cried and said she didn’t know, even though a few weeks ago, she sat down with her communication board and tapped out a message for Johanna and Thomas to be read at the reception.

      She cried because the event is happening and she can’t be there. 

     Mary frequently cries … because there are so many things going on out there; cousins planning weddings, taking trips, friends having children, visiting faraway places (something Mary loved to do) – and she realizes she can’t be a part of any of it.

      It hurts her to realize she is isolated. And it hurts us to see her that way; because Mary loved a good wedding, a great party, an adventure, a trip, to be with people.  She laughed easily, had a wicked sense of humour and realized there were two sides to everything in life.

     Now we think she knows she’s living the downside and is helpless to change it.

          

      We’ve come to believe she dislikes her wheelchair, her bit of freedom, because no matter how many times it is adjusted, rearranged or tuned up, she ends up slumped over in a posture that looks like despair. By the end of the day, she’s sagging in it, a look of defeat on her face. There are days when she just cries at the least little thing and that’s hard to watch.

     It’s hard for us not to despair, too.

     We try to get her out of her little box in the sky as often as we can. She loves sitting in the passenger seat going somewhere – anywhere, as long as she’s moving. Last week, after a dental appointment, we got her a coffee and took her to watch the swans at Bluffer’s Park. 

      Despite her dreadful eyesight, she does her best to see what she can. And her reaction to life outside her little sky-box indicates to us there’s a lot more going on in Mary’s brain that we can tap into – if only we can find the right things to do, a program to help, the right people who know how to drag out our essential Mary.

    After her outing in the park, she did something she rarely does – she raised her arms for a hug and croaked, “I love you, Mom.”

    For me, it was an injection of sheer, high-powered fuel. It takes you to a new level and makes you keep on – which is what Mary seems to do best. Keep on.

      

      We know there’s more work to be done because the physios who work with her twice a week say she’s doing extremely well. Their reports from the past few weeks indicate she is walking much better than she used to – and mostly without the ankle braces used to help keep her feet straight.

      We’ve found that when we do offer Mary the chance to get out of her wheelchair and walk the hallway or around the block, she does so with a certain amount of glee. She tries so damned hard that it hurts to watch. Put her on a stationary bike and she’ll peddle for a couple of miles non-stop. After a good session on her feet or in the gym, we’ve noticed her comprehension of things around her, her innate understanding of how things are done, and should be done, has increased.

    So what they say is true – exercise is good for the brain.

      And yet, the damaged brain is a strange thing; you think something is missing, has vanished completely. But, chances are it has not. We’ve discovered that aspects of the whole that was Mary, which we thought had vanished, are just hiding. The traces of the person who was there prior to the injury peeks out at you now and then, reigniting that flare of hope.

    We are, we’ve concluded, involved in the most complex, lengthy and convoluted game of hide and seek you can imagine.

   

                                                             Visit to the dentist

      We’re still waiting to hear about the tooth problem that developed two months ago. Mary needs a filling – possibly two or more – in a rear molar. Her condition frightens most health care specialists – and the dentist is no exception. She could choke during the procedure and that’s risk enough for anyone to refer her to a specialist. But two months in, after seeing a specialist who referred her to a hospital, we’re still waiting word. I don’t think it will come.

      This past week, she returned to the dentist. We’ve noticed for some time that something seems amiss with her front teeth. We just couldn’t put or finger on it. Then we took her to the neurologist for her Botox session and mentioned it in passing.

     “She’s grinding her teeth,” he told us. “She needs a guard.”

      We managed to get that dealt with immediately and the guard should be here next week. It’s a real worry because if she keeps it up she’ll be gumming her gruel – and we don’t want that.  To help stave off the advancing decay, we’ve stepped up her oral hygiene and the dentist treated the caries in her mouth with zinc oxide-eugenol (ZOE), gently removing some of the worst of it. He hopes this treatment will last six to 12 months.

    Our concern now is that the super conscientious CCAC nurse who comes to visit twice a week, who monitors every drug and every change to Mary’s her regime, is okay with this small, snug guard, the safest device the dentist could recommend for Mary.

        Time will tell.      

        And we have a back-up plan on the tooth decay: If at some point the tooth reaches a critical point, Mary will be sent to yet another specialist dentist who will pull the tooth. That doesn’t upset us as we doubt Mary will ever sit down to a steak dinner in the future. She seems destined to dine on pureed and soft food forever.

     But it’s better than a full anesthetic and intubation. Who needs that?

     Small things = even slower solutions. It’s just the way it is with the disabled. Really large problems and it’s exactly the same. You have to hammer and hammer to get a result. If you don’t have an advocate, if you can’t vocalize your concerns within the health system: God help you.

    It took us months and years to set up the treatments we now have in place for Mary. But all it takes is one new medical problem to develop and it stretches our emotional resources – and the other kind, too.

     Mary receives Botox every three to four months, in the parotid glands  - a major salivary gland – to help with drooling. It does help. A few weeks ago, she was given small amounts of Botox in several places in her arms to help her control her arm movements. Mary has a mix of spasm and dystonia, but the therapists say they’ve noticed a huge difference since she had the Botox done. So that’s good.

    Still, despite having a top-of-the-line communication program installed on her iPad, she is unable to control her arms well enough to use it. She goes to point out an answer and misses. Then she gets utterly frustrated.

     We’re still waiting to hear about the light box communication device – now only 16 months on the waiting list – and we are feeling a mite desperate to find a better way for Mary to communicate with us. We have laminated alphabet sheets everywhere but it takes a long time for her to say something by pointing out each letter.

      We got her touch-screen desktop computer up and running again in hopes that there is – somewhere out there – a communication program that works on a big screen. There isn’t – and God knows, I’ve looked.

     We’re now waiting to get in touch with an occupational therapist who might be able to help Mary with a special mouse to use that computer – or to help find us a touch screen program that we could purchase for her.

    So we wait. It’s what we do best.  You just get on with it. And wait some more.