Seeking a quality of life

     

Mother and daughter

      Mary out of hospital was even scarier than Mary in the hospital. What would she eat? Who would monitor her fragile condition? What if she got sick?

      So getting her moved and able to live safely outside of an institution was a headache of epic proportions, no matter how desperate we were to get her sprung; it was a long and carefully executed battle plan.

     We hoped being out of hospital would improve her spirits. Because you do get institutionalized; the routine is unnatural, you have neighbours beside you who die and you can’t get back into your room until their death is declared and the body taken to the morgue. Your life is a series of having your blood pressure checked, temperature taken, of meals you don’t want to eat, of being surrounded by really sick people and staff who, while kind, are condescending, thinking – because you’ve suffered a brain injury – you must be completely simple. People judge you because you drool, can’t hold a spoon and have to wear a diaper. (Actually, that diaper was for the convenience of staff. Mary was never incontinent and although we begged that she not be put in one, it wasn’t until she left hospital that she was finally able to be rid of the bulky things.)

     One of her first out-of-hospital visits: Victoria’s Secret.

     She couldn’t return to the home she had with Bob, the one she’d decorated and painted and fussed over.  There were stairs everywhere, it was far too small for all the equipment she’d need and she required 24/7 care. No way to live for a busy dad and precocious daughter. So we chose a place close by, where Bob and Isabella could visit daily. It was the best we could do.

    Thanks to her pensions, Mary pays all of her own bills – a hefty city rent, her utilities, TV, phone and groceries ­– pureed food from Meals on Wheels and a case of frozen pureed food every month or so ordered from a hospital kitchen. Campbell’s doesn’t just make soup, it makes frozen entrees for hospitals, rehab facilities and nursing homes. The food may look awful, but it smells like the real thing once it’s been microwaved.  We supplement the frozen foods by buying eggs, cereals, juice and soft desserts – as well as the laundry and washing up necessities, all the little things that make life tick over in a day. 

     Mary has a washer and dryer, a dishwasher and one small room besides her bedroom and combined living/dining/kitchen. This tiny place also holds her giant walker, two wheelchairs and a variety of other equipment. It’s a mini hospital.

    Mary worked as a social worker at a non-profit agency that had a pretty good benefits plan. It ended when she went on long-term disability. She now has a private plan that has certainly helped. But like most plans, it pays for only six therapies a year – and that doesn’t go far enough for Mary’s needs. She requires many hours of private therapy a month.

    Those first few months on the “outside” were breathtaking, like watching a sick, fragile bird teeter on the edge of the nest. That nest needed poles for stability during transfers, grab bars, commodes, bath chairs, special shower attachments and a hard surface floor. The apartment we chose for her – with the aid of CCAC agency staff – had carpeting. We, and the building management, went halves on replacing the carpet and putting down laminate flooring – so much easier to manoeuvre wheelchairs and walkers.

      All this had to be done before she moved in, so it took us a few months of work to get the place ready. She needed a hospital bed that could be lowered to the floor and this was thankfully arranged by a care agency. (Mary has a tendency to forget her disability and attempts to get up; that sieve-like memory.) She needed furniture for the people who cared for her, pots, pans, dishes, cutler, a TV, lamps and whatnot. That wasn’t so bad. We sold our retirement home in N.B and carted back a lot of stuff that went from the truck to Mary’s apartment.

     A nearby pharmacy went the second mile in helping set up her prescriptions and actually delivers her drugs if we’re not around. The building management went out of its way to help and ensure she was comfortable and safe. It was a smoother transition than anticipated. She was to be monitored by a CCAC nurse, under the care of a family physician with a practice not too far away, and watched like a hawk. Her caregivers were trained to move her safely and taught how to deal with her specific brain injury.

     Mary can do little for herself. She cannot hold a spoon or fork, has trouble holding a cup, cannot dress herself (although she will try to aid as you’re dressing her). She cannot stand up by herself, cannot place one foot in front of the other without aid or prompting. She relies on someone else for all her needs. She can chew, swallow with difficulty and drink thickened fluids. Choking is a Number One concern.  So is falling, hitting her head. She sits strapped into a wheelchair for most of the day.

        Quality of life? Not so much, despite everyone’s best efforts. But it’s not for a lack of trying. We have been working in a variety of ways to make sure her daily life is worthwhile, comfortable and stimulating. But it is almost impossible to attain a degree of quality that is satisfactory. We have fought for therapies, visit almost daily and get her out. We trek to shopping malls, to stores and take her on walks so she can stay in touch with what’s going on and get some badly needed fresh air. Not easy this past winter, that’s for sure.

      Mary’s eyesight is an unknown quantity and we’re not sure exactly what she does and doesn’t see. Even an ophthalmologist can only do so much testing. Her world – once so great with travel to far-flung places – is now tiny. We can visit, go away for twenty minutes and come back only to discover she doesn’t remember us being there. It is frustrating and heart-breaking.

     She is on drugs to aid memory – a max dose of the same drug used to help sufferers of Alzheimer’s disease - and drugs to aid her perceptual abilities. There’s a drug to relax her muscles and help stem the spasticity. Gone is the Fragmin, which is an anti-clotting drug. If she were to fall again, it might prove fatal – as it almost did when she was left alone and fell in the hospital washroom. And gone is the dreaded G-tube, (gastric tube), which stuck out of Mary’s stomach and caught on her jeans, her shirts, her underwear. It got caught up while was going to the washroom, while she was being dressed. The thing must have fallen out a dozen times over the years she was in hospital. It fell out twice within five months of her being in her own apartment. The last time it came out – the caregiver nearly having a fit – we simply left it and allowed the hole to close. A nutritionist suggested the liquid supplements be doubled and Mary has continued to hold her own and eat and maintain her weight. This is crucial.

     Also gone is the risk of infection through the G-tube, the need to clean and dress it, watch for redness and be utterly paranoid that the thing will fall out again. We were assured when Mary left the hospital that she had been fitted with a tube that would withstand ‘community life’ – whatever that means. Actually, I was informed it was a “Kangaroo French 16.” I did what I do best – I nodded wisely and ran off to check Google.

     But sturdy or not, the G-tube did not withstand Mary’s desire to have it be gone.

     We do our best to help improve Mary’s standard of living, but it is not enough. The damage to Mary’s brain in those minutes after she vomited and aspirated was just too great for her to achieve any real measure of recovery. The memory slips and slides, comes and goes. This winter, one caregiver told us Mary managed to remember a visit from an aunt the previous afternoon. That was miraculous. But it isn’t the norm. 

     Her life is a daily struggle; not enough sleep and she’s miserable, her head nods and she wants to be left alone. She cannot speak clearly so she has a moan that is persistent and never-ending. As much as we love her, it can drive us up the wall. She might think she’s talking, we’re not sure; what we do know is that her throat muscles cannot support consistent speech. Intubated for weeks and weeks, tests revealed there was no damage to her vocal cords. So the inability to speak is, we assume, tied to the brain damage. She tries desperately to make herself understood and it comes out as a long, continuous sound. If we tell her to stop, take a breath and start over, she can say a few words, but they are unintelligible for the most part. She communicates by tapping on a laminated alphabet board that we created. We have several lying around and I recently found one in the trunk of my car. They’re handy – and everywhere until you need one. (And we tend to leave them wherever we go.)

     Mary’s most common word is “thanks.” She thanks everyone who does something for her. On a really good day, she can let you know in a few words what she wants, what she thinks of something or someone: “Weird.” The word will be forced, strangled and unclear.

      The process – and it is a very, very long one – is underway to have Mary try a communication device similar to the type used by Professor Stephen Hawking. But we found out this week there is a year-long waiting list to even get to see the people who help set it up. That’s a long time to wait if you really have something to say.

      Mary has one outstanding trait that is constant; her ability to understand intelligently and obey every order you give her.  She does her best to do what she is able to do. She loves her coffee, a sip at a time to prevent choking, loves to work on crosswords (and gets most of the clues), and trying to read. She loves to sit and listen to us gossip and talk about what we’ve been doing. We sometimes think she really isn’t paying attention but will look up to see her doubled over with laughter – silent laughter in place of the great guffaws she used to share – but laughter nonetheless. She shakes her head at us, still thinks she has crazy parents. She adores her twin brother, Alastair, and reaches up to hug him when he leaves. She was once the strong one, the advisor, the friend, the one who guided him, defended him, listened to him. Now she can only hug him.

     But she does laugh. And often. She sees the funny side in all kinds of situations and always has.

     Several years ago, the summer before this whole thing happened, Mary, Bob and Paul drove down to St. Andrews, N.B., where we had our lovely 200-year-old home.  I was already there, having something or other repaired or fixed – not uncommon in an old house. When they arrived, Mary was bursting with barely suppressed glee and a secret she said she just had to keep. She wouldn’t say what it was. She’d promised and promised. In my usual fashion, I set about poking and prodding. Her father and Bob were poker-faced.  They were giving nothing away.

     I finally succeeded one evening as we prepared dinner and had a few glasses of wine. She finally spilled the secret. It was the kind of story that Mary loved, and loved to retell: They had made many stops on the drive from Toronto – for coffee, food, gas, this and that. Paul can be a bit absent-minded at times, and they had made a stop somewhere along the way and were more than an hour along from that last stop. Mary might have been driving, I’m not sure now, but Paul suddenly realized he did not have his wallet with more than $100 in it, all his ID, credit cards and the things that get him through life. The car was apparently abuzz with full-blown panic.

       Another stop: There was a lot of swearing. The car was searched from top to bottom, luggage shifted, coffee cups moved, bags emptied, pockets checked many, many times. They stood beside the car, frantic, considering driving back to the last gas station. Paul in a panic is something to behold. It just never happens. Mary says he happened to glance across the roof of the car … and there, jammed under the luggage rail, probably where he’d put it as he jockeyed keys and coffee, was the wallet. Not only had it made it along the 401 on the roof of the car at 130 km/h, its contents were intact. Paul swore Mary and Bob to secrecy. They were not, under any condition, to let me know about this mental misstep. He’d done it once before. We drove home from Vermont a few years previously with his sunglasses wedged under the roof rail, while he moaned all the way about the bright sun and not being able to find his sunglasses.

    Mary thought her dad’s absent-mindedness was absolutely hilarious. And she got a lot of mileage out of those tales.

     She loved to share. And she could find humour in almost any situation. Now, when we bring up those tales that she laughed over, she shakes her head. She can’t remember them. In fact, there are huge gaps in Mary’s memory up to a year prior to her brain injury. She can’t even remember that trip, can’t remember the house in New Brunswick, leaning out a gable window to yell at us, “Will you two stop arguing! Everyone in the neighbourhood can hear you!” We were on the front lawn, haggling over where to put the home’s historic sign. Should we move it or not? I don’t know why it was such a contentious issue.  I can’t remember. And neither can Mary.

     So we struggle with these things and try to help her improve her memory, playing computer games, word games, testing her memory and trying to stretch it a bit.

     For the most part, she has done well enough living outside of an institution. There are other disabled individuals in her huge tower. Most of the residents are young and the place has a nice bright atmosphere, a gym, all the amenities close by. It’s all good – now.

     But for the first three months after Mary arrived in the building, she was the victim of persistent harassment from a neighbour who was overly sensitive to noise. It began on Mary’s very first morning in the building. The woman knocked on the door to announce she could hear the phone ringing when the first day’s shift was arriving. And she said she could hear Mary moaning.

    She would knock on the door when we visited. She didn’t want to hear our voices. She didn’t want to hear anything. She didn’t want to hear Mary. She actually would stand outside Mary’s door and listen. I stood outside the door many times and heard nothing. I couldn’t hear Mary, I couldn’t hear a thing.

    But the harassment persisted. The least little noise and she’d pound on the door, scaring the wits out of the caregivers. She complained and complained to the point where we concluded she had a serious mental illness. Maintenance was forced to come and put special foam taping around Mary’s door so this woman couldn’t hear it open or close. We were asked not to talk at the door or in the hallway as she could hear us saying goodbye or greeting Mary.

     She seemed to hate the thought of a disabled young woman living so close to her.

     We wrote notes to management, we expressed our dismay at the behaviour which they seemed to be condoning.

     The final straw came when this woman appeared at the door one day, pounding and pounding. When the caregiver saw who it was and opened the door a fraction,  the woman shouted that Mary should be in a nursing home, not in an apartment, that she shouldn’t be living there at all. Mary heard it all. The woman went completely over the top and frightened the gentle PSW working the day shift. We had to order the caregivers not to open the door unless someone called to let them know who it was.

       Management finally got it and told us simply that if anyone in the apartment felt threatened, the police were to be called. It didn't come to that. And in a matter of weeks, the woman was gone.

      What a brutal start to Mary’s freedom.

      But it is indicative of the fear people feel when confronted by disability or illness. It has not been the first out-there reaction we’ve come across, nor will it be the last.  People gape, gawk and stare. They give you a wide berth, as though Mary is contagious.

     And yet – there are many, many who rush to hold open the doors, ask if you need help, touch Mary’s hand and ask her how she’s doing.

       It’s a strange old world and we’re standing on a long, long road. We’re not out of gas yet, but there are days when we get completely fed up with the obstacles we’re finding. Ignorant people are some of the worst.

    

A never-ending fight

     It is almost five years since that fateful night, April 8, 2009, when the blithe attitude of a second-year surgical resident reduced our daughter’s life to a wheelchair, leaving her with the inability to speak and a body that must be controlled through drugs and physiotherapy.

      A complaint to the Ontario College of Physicians and Surgeons against the young resident - who had not consulted the senior resident, let alone the surgeon in charge, about Mary and her post op fall - found in October, 2013, he did not do enough that night to find her better care, either in an ICU or a room with a PSW (Personal Support Worker) in attendance. Either location would have ensured that someone would have seen her vomit after that fall in her room after getting out bed. The care provided in ICU, or in a room where four patients are monitored by a PSW, would have been more immediate than being alone in a semi-private room.

      After five years of legal wrangling and the ongoing stress associated with attempting to sue a hospital (it just isn’t as easy and straightforward as one might think), we have at least had our suspicions about Mary’s care verified by the College. She should have had better care; as a pregnant woman, she certainly deserved it. We have berated ourselves to hell and back since that night, blaming ourselves for not sitting up with her through one more night, for not watching, for not monitoring, for not making sure medical staff were doing their jobs. It had taken us five days of trying to convince another Toronto hospital she needed her shunt replaced.

    You just assume they will do the right thing, don’t you? That they will take care of your loved ones and make sure they receive adequate monitoring and watching.
     Don’t ever count on that.

     And proving a lawsuit is difficult: when we met with our lawyers, it came down to us asking, “Well, why didn’t this resident consult with his senior resident, or better still, the consulting surgeon? It seems clear to us Mary wasn’t watched carefully after she fell in her room. Why doesn’t that count?”

    The answer: A convoluted response that still has me wondering what it’s all about. The lawyer explained the expert had to ask himself whether or not it would have mattered, time-wise, if the resident had consulted the senior resident or other surgeons, who were on their way to a trauma case in ER. Would it have made a difference? Would she have vomited anyway? And why was she vomiting? They don’t know, so … there isn’t a case. 
    What?

     Perhaps she vomited because she was 24 weeks pregnant? She had just had brain surgery to replace a failed VP shunt? She had fallen on the floor some eight hours after surgery?

     Not taken into consideration.

     Common sense doesn’t count. It was completely absent that night. And what about her nurse? Who knows. She didn't make any notes. 
     Interesting, that.

     What we learned, in fact, from one expert’s perusal of the file, was that this resident suspected, from very early on that evening, that the shunt was not working properly following its replacement. Because Mary was presenting as coherent and able to answer questions, they did nothing. They’d wait and watch. At least that’s what the lawyer passed on to us.
     Who knows? We didn't find that in the files.

      So that is how difficult it is to sue a hospital or doctor. It’s tough. Add to the fact that if you don’t have many, many thousands of dollars to place on a lawyer’s desk to help the fight, you’re sunk. Unless it’s easy and clear-cut, you can forget it. 
     You go into hospital thinking you’ll be fixed, healed, you come out years later unable to function, feed yourself, walk or talk.

     One lawyer – there were three of them, actually – looked at us levelly and told us emphatically: “They (the hospital) will fight you. They will take you to court.” We would lose, one of them predicted. “Don’t even think of it.”

      Doctors, the lawyers told us, through their medical malpractice insurance, have millions and millions at their disposal to fight cases such as Mary’s – and for years and years. 

     “And this will go on for seven years, at least,” one warned us.     

     “But someone,” one of the team said angrily, “should do a story on doctors and their huge war chests – partly funded by taxpayers. Really.”

     We were speechless.

 

       Mary’s flight from the hospital, (three and a half years after her injury), when we finally got things set up, was quick, the goodbyes embarrassing and the exit one of the most exhilarating experiences. Never again would we have to use dirty hospital washrooms, beg to try and find out exactly what was wrong with Mary, let alone what happened to her (and that’s still a somewhat murky area as there is no clear explanation written in her records). We would never have to trudge through a dreary and cluttered neuro unit with its smells, its sounds, its sadness. So much sadness.

      I swore I would never write another word about Mary’s story or revisit the past few years and the tragedy.  We wanted healing, peace, and time to be the engaged advocates any disabled person needs; for government, for pensions, for care, therapies and to help navigate the tricky medical system, which, by the way, is one rocky road when you have a brain injury.

      But Mary’s story is one that doesn’t go away. And it is one that could happen to anyone, given the nature and flaws of major hospitals; it is a story that needs telling. And that story goes so much further than the doors of a hospital.

     If we can prevent even one family from going down that precipitous road we’ve travelled, then we’ve accomplished something. If we can alert a patient to the fact they need an advocate even before they get to the doors of a hospital, then that is a good thing. Because things don’t always work out the way they are supposed to.

      Most patients are treated, go home or to rehab and get better, maybe - eventually.  There is the overriding fear of being in a hospital, the uncertainty of surgery, treatment or the disease itself. One way or another, the illness is resolved. But that never happens with a brain injury.

     And there are several things you have to know about brain injuries, about being a disabled person. It is very, very expensive. Equipment to help them stand, to use the washroom, the wheelchairs, walkers and therapies comes with a high price tag. Government funding offers some relief, as does fund-raising, but if you want to buy a specific piece of equipment, you know there will be sticker shock when you pay the bill.  A large supportive walker, which is vital to getting Mary on her feet, cost $1,400 used. It was originally priced closer to $5,000 new. If it’s not bad enough to be disabled, it’s a crime those people reduced to pensions and penury must be forced to pay outrageous prices for the very things that would help them live a better life.

     There’s nothing good about sustaining a brain injury; it is a life sentence. There is no fondly remembering the day the doctor told you everything was fine, there is no elation at going home, no well-being and no relief from the symptoms. Brain injuries are, by their very nature, vague and indefinable, finicky and unpredictable. Brains can, research has shown, rewire and function again to some degree following an injury. But brains are also like jelly; they hurt easily. And they contain our very world; our fears and beliefs, our moods and intellect. They govern our speech, our movements, our decisions and drive. They are our life force and can go seriously awry when damaged.

      A traumatic brain injury is one that occurs when a person sustains a blow to the head. There has been a lot of talk about hockey players and the long-term effects of the constant beating their heads sustain during the game. Helmets do a lot to protect the noggin, but the brain still moves about inside our skulls when we take a fall and hit our heads, or are struck by a hard object.

     Anoxic brain injury seems to baffle many in the medical world, as we’ve discovered, to our sorrow. If you cast about for a physiatrist (a specialist who treats brain injuries), you will be hard-pressed to find one who knows a great deal about anoxic brain injury. We have been lucky and feel blessed to have found one doctor in Toronto who has done research in this field.

     It’s harder to predict an outcome for someone who has suffered such an injury, we have been told. It occurs when the brain is deprived of oxygen for several minutes or more. It might happen to someone in an accident, runners who collapse during marathons, those who suffer heart attacks and stop breathing for any length of time.

     And this type of brain injury can affect other parts of the body. In fact, we were told within the first 24 hours of Mary’s incident, that her heart and other organs were affected due to a lack of oxygen.

       Not so. I’ll never forgive the trauma doctor who assuredly asserted all these things were true. We now know they were lining us up for the news that she was brain-dead, would never recover or live, that they wanted to withdraw life support after Isabella was born.

       Nevertheless, that oxygen deprivation has left Mary with more challenges than you can imagine, few options or choices, a battle to communicate and a memory that’s like the proverbial sieve.

      She’s not alone in her fight. She has a battalion of private therapists and aides to help her try and recover what she lost; some of her ability has come back.  She can stand now, straight as a die, as long as someone has a hand on her to steady her. She peddles furiously on a stationary bike and works hard to walk in her giant walker. We are trying to help her regain her balance. (Little known fact: when a person is confined to a wheelchair over a long period of time, their sense of balance shifts to their backs, instead of their inner ear. Regaining that takes a lot of time and practice.)

                                  

      Unfortunately, Mary has a degree of spasticity that is controlled only through certain drugs and Botox injections.  She needs 24-hour supervision and constant monitoring and care. And despite trying everything we can possibly do to alleviate her suffering, Mary is still not better, will never be better. She can improve, but she will never be the same Mary we raised. 
     And that is key to our turmoil – or perhaps it’s key to MY turmoil. Paul has handled everything about this tragedy very differently. A natural optimist, a cup-half-full kind of guy, someone who takes things in his stride, he has suffered but persevered. I’m a compulsive worrier – about every thing and every detail you can imagine. I was born that way. I have fussed, made myself ill, been mired in disbelief and horror and been a miserable sod to be around. It has been trying to accept the fact that Mary is so very changed that has torn at my heart and soul. It has been realizing that the woman in the wheelchair who struggles to say, ‘Hi, Mom,’ is the same one who tore through our house and played ridiculous pranks on all of us.

     But I get it now. I think.

     She is the same Mary. We know that for a fact. Rigorous testing last fall – the results in three weeks ago – indicate Mary’s intellect is largely intact. Her intelligence is normal, albeit reduced from her much higher intelligence quotient prior to the injury. She laughs at the same things, rolls her eyes when we argue, is delighted and happy when her daughter, Isabella, dances or sings for her. Her twin bond with Alastair is stronger than ever. She still loves to get out, still wants her daily dose of coffee, still loves her partner, still loves listening to music, still wants a glass of white wine (only sometimes if she’s out with extended family), still thanks everyone who helps her. She’s still the super polite, solicitous girl we raised and she still has a wicked sense of humour. That’s all good.

     And knowing that, it is easier to understand why her hair has been thinning from the stress of her situation, why she frequently sits and cries, why she seems utterly lost at times. She is completely frustrated by the fact she can’t speak clearly, and angry that she can’t see well enough to read her newspaper or the countless books she faithfully passed on to family and friends.

     So we continue to work on her behalf, trying to find ways to alleviate her discomfort and improve her quality of life. And while we do that, we battle the system, every step of the way, the very system that made her the way she is. We trot to doctors, specialists and therapists. We try to make life as normal as possible because Mary is, in many ways, the same Mary, albeit much altered. What we miss are the whoops of laughter, her non-stop chatter, her insight, her compassion and understanding of others who suffer, her desire to care for others. She was a social worker who worked with disabled adults. How cruel that she is now the disabled adult.

     We miss Mary. But we still have Mary – and that’s what is so bloody miraculous and confounding.

(This blog will run every two weeks, hopefully on Thursdays, and will continue to chronicle Mary’s journey and recovery from anoxic brain injury.)