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.