Thanks - from Mary, from us

                     Mary and her twin, Alastair, celebrate their 40th birthday.

            Mary – and her family – want to thank everyone who so generously supported her  gofundme campaign over the past year. We have ended the campaign, but wanted donors to know their generosity has allowed us to acquire equipment and therapies that make Mary’s life just a little easier.

       Nothing has changed for Mary. She is still horrifically brain damaged and disabled with no chance of improvement. Her 30-second memory puts her in a perpetual world of mindfulness, only aware of the immediate moment. She doesn’t know what she had for breakfast or lunch, can’t recall the last time she used the washroom and believes it is 2009 – the year of her brain injury.

        The last time Mary greeted a morning and planned her workday – as a social worker who dealt daily with disabled adults – was in March, 2009, when she was just more than 20 weeks pregnant. Now, there are huge gaps in her memory. She can’t remember the weddings of her cousins, which she has attended in the past few years, nor can she recall her grandmother’s funeral a few months ago, where she leaned into the casket to touch her face.

        She was horrified when she turned 40 in February this year and was told it is 2018. Some days it is easier to just let her dwell in the past.

       Contrary to this complex memory problem, is her recognition and awareness of her daughter, Isabella. She sees that she is an 8-year-old but doesn’t comprehend how that can possibly have happened. When told her parents are officially senior citizens she shakes her head.

        Mary lives in a state of complete bafflement. And then she forgets.

        Not remembering may be easier for her, but for her family it has been sheer hell. Nine long years of constant struggle has left us exhausted and fractured. Just like the victims of many other tragedies and loss, it has left its mark.

       You cannot, nor will you ever, be the same after fighting for so long for the proper care, for justice – still unattained – and a place for someone like Mary to live out her life.

       She is now in a March of Dimes home, where they are aware of her vulnerability and her quirks. She cannot walk and must be transferred to and from bed and for use of the washroom. She must be fed as she cannot use her hands. She does have some function of the left hand and can tap out messages on a Dynavox communication device.

      She nearly lost that ability in February when her left hand became limp and useless. Caregivers wondered if she had suffered a slight stroke and we spent hours and hours in a chaotic hospital ER. While the brilliant ER physician didn’t think it was a stroke, he did think the nerve in her arm had been damaged and did some preliminary tests.

       We explained it was vital that we find a way to fix this as her left hand was the only way she could communicate with us. (And Mary was strongly right-handed once. Brain injury changes a lot of things.) He said he’d like a neuro consult but that it was a bad night with three stroke victims being treated simultaneously.

      The ER doc shuffled off for hours. When he returned, he told us he’d managed to “make a case” for Mary to be seen that night because the affected arm was her only way of communicating. In the end, we saw a resident neurologist. She thought it was damage to the radial nerve, referred Mary to a clinic and we left – nine hours after we’d arrived.

        ERs are not for the faint of heart these days. It takes stamina, strenuous advocacy and persistence to stay the course and not bolt.

      By the time Mary was seen two weeks later at a clinic, there was little life left in that nerve. We were told it might come back – or not – and she had to wear a brace, which she did quite willingly. 
       Two months later Mary was typing again, able to fully communicate with us.

       But there are other signs of physical decline. Nine years in a chair is taking a toll. She can no longer sit upright for very long without sliding to the edge of the seat. It is a worrisome development and we are addressing it by getting her another new wheelchair – one that tilts, so she can recline and rest while in the chair.

     No one stays the same, physically, for long and it is especially true for the disabled. Unable to walk, exercise or stand, major muscles stiffen and bones weaken. Risk of stroke means Mary must be stood up a number of times a day and she engages in some chair exercises.     

        Nine years ago we hoped for improvement, maybe even a miracle (do those things even happen?), and did our best to give Mary’s daughter her mother back. We pursued lawsuits, paid for therapies for Mary (no rehab facility wanted to take her due to her memory problems), and did our best to provide a bright and cheery environment in a small apartment.

     When March of Dimes offered us an affordable option a year and a half ago – a room in one of their homes – we moved Mary to her new digs. We visit as often as we can, provide all the necessities, get her coffee (she’s still an addict), and get her to any appointments she needs. We watch her health carefully and make sure she has the medications she needs.

       It is – to this very day – almost impossible for me to believe the woman in the chair is the beautiful, bright and energetic young woman we raised. Although there are flashes of her sharp humour, traces of that huge laugh, distorted versions of the eyebrow-lifts she’d give when she was skeptical, it is not the same. I miss the Mary who challenged me, made me laugh and who was a good friend. I miss the young woman who was so keen to be a mother, who wanted to get her M.A. so she could work as a hospital social worker, who phoned us every day. I miss her stories – no shortage of them, ever – and her huge smile.

       We will always miss the girl she was.

       We tell Izzy what a great girl her mom was, but as she grows, so grows the distance between the powerhouse her mom was and the lovely girl her daughter is becoming. Izzy would like to believe all we tell her, but I can see that it’s hard for her to understand that her mom was once someone to be reckoned with. She can’t see it. We can’t un-see it.

     And so time passes.

      The gofundme campaign will help us to give Mary all she needs to be comfortable and protected. It is the least we can do.

     We are grateful for your help. We are grateful Izzy still has her mom.

     Thank you!

         

New home a work in progress

     

     Mary has been in her new home – a March of Dimes facility – for five full months. It’s been an up-and-down period beset by various issues to which Mary, thankfully, remains totally unaware.

     She has been lucky to retain the PSWs who have worked with her for four years and they continue to ensure her care and safety round the clock.They know her so well they can almost predict her reactions and can read her better than anyone, understanding her emotions and what she is trying to say.

    But we’ve all noticed Mary’s health has suffered somewhat and we are baffled. She has always been physically hotter than average since her brain injury, but during the past few months she has been so overheated and clammy, the only way to make her comfortable is to put her in shorts and a T-shirt and have the floor fan on low. Odd for January, but it’s all we can do to help her.

     Blood work shows she’s fine, so we’ve asked for a referral to a neurosurgeon to have the shunt checked. So far, it’s been almost a month and Mary’s GP has been unable to find anyone willing to take her on.

     One government official has suggested we apply to take her to the U.S. to see a specialist. She needs a CT scan and someone who can ensure that the shunt is still functioning as it should, and who can perhaps give us some answers.

     After all this poor woman has gone through, we’d like to avoid taking her beyond the border. Her immobility and the extent of her disability would make any travel outside Toronto extremely difficult, so we’re hoping (a word we don’t use much anymore, actually), that someone can be found in the Toronto area. 

      When you deal with someone with major disabilities, it’s the little things that break you. And there have been many, many petty things that have nearly done us in during the past few months. Some of it is bureaucratic/political stuff, some of it the continuing grind of having a disabled family member. 

      While the move certainly mitigated the financial aspect of accommodation for Mary, it has not lessened the load. We are still responsible for supplying Mary’s every need, from rolls of toilet paper to shampoo, food and clothing, cleaning supplies and monitoring her medical care. 

     There is one bathroom available, used mostly by Mary and visitors, but we’ve even had to monitor the toilet paper as the facility doesn’t provide this. Rolls were vanishing at a great speed, so we’ve had to leave essentials in her room and remember to take the necessaries with us. 

     Six double rolls of paper towels vanished within a few days. 

     Petty stuff, but pricey and annoying.

    Two years ago, when her apartment expenses (food, supplies and rent) of $3,000 a month  became just too exorbitant and the stress too difficult, we asked CCAC for an alternative place for Mary, hoping it would ease the load a bit.

     But according to CCAC, no one – save one facility that seems to take most of the city's dementia patients – wanted to take her on. The rules and regulations of LTC facilities and nursing homes are a thing to behold. And there are not a lot of alternative options for people like Mary. 

      So at the moment, she is a “customer” at this independent living facility with certain times allotted to her for bathing, etc. Mary is not independent, nor will she ever be. She is not a customer, she is a patient. She has many needs and is virtually helpless.

     Needless to say, there has been a clash of ideologies, among other things, and we are feeling frustrated.

     The one beneficial thing to come out of her new situation is the work of a group called the North Yorkers for Disabled Persons, brought in by the March of Dimes. Two of their staff, who deal with communications, have come in and assessed Mary, trying to find ways to help her communicate more efficiently with her Dynavox and in other ways.

    Last week they came in and had her write a story on her family going on a vacation. By using words as prompts, they kept her working on the story long after her memory would normally shut down – after about two minutes. 

    Like most people who get to know Mary, they are impressed by her typing efficiency with the Dynavox, the fact she insists on typing exactly what she wants to say and with perfect grammar and punctuation. (She’s not the daughter of two editors for nothing.)

      This aspect of Mary’s brain has often baffled us as we watch her type and correct words, inserting commas, and making sure her communication with us is perfect. For example: “Also, I’d like to thank my mom and dad for bringing coffee. And thank you, too, to Maria. (PSW)”

      So there’s an awful lot of Mary still left deep inside her brain. 

      We’d love to be able to get her more therapies and rehab, which she’s never had.  At the moment, we can only get physiotherapy twice a month. Our physios have just taught staff at the facility how to do range of motion exercises with Mary, which is a good thing.

     The neurosurgeon who initially dealt with Mary said the most recovery after brain damage is done within two years of the event. It’s been almost eight years now.

      We’d like to know more – if we can find the right expert to advise us!

     Mary’s cousins tell us they are launching a gofundme page to help us pay for therapies for Mary. She also needs a new wheelchair.

     They are going to launch it on her birthday, Feb 19, which she shares with her twin brother. They will be 39.

     I’ll do an update then.

     

     

       

          

At last - Mary finds a new home!

It's been a long time since I've posted. But if you have no good news, why burden people with the bad? We're all trying to move along and look to the future as best we can. 

I appreciate some of the comments posted to me - and my heart goes out to the person whose husband suffered a somewhat similar fate at the very same hospital. 
Thank you for reaching out. I hope you are ok.

Finally, some good news.

It has taken two years, but Mary is now being "transitioned" to a March of Dimes facility that offers more constant care in a smaller setting.
We are beyond relieved. It's been a long haul and we've looked at some places, suggested by CCAC, that were horrifying to view.

One was a nursing home facility that must house most of the city's geriatric psychiatric patients. Not a place for a young woman with a child who visits regularly. 
I was panhandled for money four times - and that was just in the lobby. Some patients were very aggressive and communicated only by shouting.

Her new home is dedicated to caring for people with acquired brain injury. So she won't be alone.
The staff at the new place have been incredibly welcoming and kind. This summer - the transitioning started a few weeks ago - will be dedicated to taking Mary back and forth from her current apartment to the facility as everyone gets used to the level of care required to make sure she is safe and comfortable once she moves.

It takes a lot of work; Mary likes to move around and gets agitated every 20 minutes or so. Her short memory means she forgets where she is. She can tip a wheelchair in no time and roll herself into furniture, walls and knees like a pro.

We travel back and forth - thankfully, it's a short distance - with her frozen pureed foods, her thickened drinks and whatever else is needed to help the staff and Mary get used to the new setting.
Who knew you could fit a commode chair and wheelchair in the back of the car! 

The partial move starts Aug. 14, the final move on Aug. 31. We will start decorating Mary's room in a few weeks with photos of friends and family and some of the things she loves. Her TV is crucial. Where would she be without an afternoon of Ellen or Dr. Phil?

More to come ......

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.