There's no substitute for giving a damn

By Christie Blatchford
National Post
Saturday, May 18, 2001

The beast at the end of the hall, as her laconic, lanky father would sometimes rue how his oldest daughter had come to be considered, left the Hillcrest Place nursing home on Monday last.

Wendy Anne Horton was getting the boot: the private, for-profit nursing home, where this brain-injured and severely disabled young woman had lived for more than four years among the senile and the dying, along a corridor cruelly called "Down Memory Lane", allegedly was unable to find sufficient staff to care for her any longer and was unceremoniously kicked out.

In an April 25 letter, a Hillcrest administrator put it in writing: "We understand that (government authorities) are prepared to begin the transition to community sooner," she wrote, cheerfully adding, "We respectfully request that you secure community placement for Wendy as soon as possible, or not later than May 1, 2001."

This was, at minimum, disingenuous, euphemistic, unmitigated pap.

The administrator knew full well, as did a gaggle of senior bureaucrats from the Manitoba health department, who were privy to the nursing home's decision, that there was no arranged placement for Wendy, no waiting bed in another institution, no community prepared to receive her — and that there would be no nifty-sounding gentle transition.

Wendy was being sent home in her wheelchair to her ageing, retired parents, Bob and Jean Horton, and their non-wheelchair accessible little bungalow, in their non-wheelchair accessible Dodge minivan, with only a day's worth of medication and only one worker in place to help with the intensive 24-hour care the 38-year-old needs.

It was as stark and awful as that.

The vaunted re-entry into the community consisted of the Hortons, with the help of their youngest daughter Jillian, a 26-year-old physician on leave from her first-year residency at St. Michael's Hospital in downtown Toronto, wheeling Wendy out of the 100-bed nursing home and lifting her out of her chair and onto the carpeted floor of the van, whereupon Mr. Horton took his seat at the wheel, Mrs. Horton assumed her position in a crouch halfway between the bench seat and the floor, so as to keep Wendy safe during the short trip, and Dr. Horton perched herself on the portable camping toilet without which the family can go nowhere now, lest Wendy have to relieve herself with trademark urgency — and about 30 seconds of advance warning.

At the Horton's blue-shuttered bungalow, the entire process was reversed.

Bob Horton, who is 65, got the wheelchair out of the back of the can; Jean and Dr. Horton stayed inside, and, for about 15 minutes in the searing Manitoba sun — Brandon was, this day, the hottest spot in Canada, the temperature reaching 31 Celsius - struggled to help the 115-pound woman roll/crawl toward the vehicle's sliding door, then carefully wrestled her malformed body into the only wheelchair that would fit easily through the front door, and old, brown leather-seated one Wendy's deceased grandmother had once used.

The Hortons were on their own again, as indeed they have been for almost exactly 32 years.

It was in July of 1969 that their first-born underwent surgery for a brain tumour, surgery that itself had been almost four years in the making.

Wendy was a pretty and precocious toddler with glossy dark hair when she began to develop difficult with gross motor skills — later diagnosed as flat feet. By kindergarten, though reading at the level of an eight-year old, she was still having co-ordination and balance problems. She began vomiting, often in the mornings; this in turn was subsequently deemed to be "school phobia", curious in a youngster who adored school. By Grade 1, this diagnosis shifted to gastroenteritis.

Only when her desperate parents took her out of their native province for an assessment at University Hospital in London, Ontario was it deemed she had hydrocephalus — or fluid on the brain — caused, the doctors hoped, by a cyst.

But what a neurosurgeon removed from the stem of Wendy's badly compressed brain was a massive tumour.

She was in a coma for more than a week before she opened her eyes, yet might still have been on her way to a reasonable recovery when she contracted meningitis, a severe brain infection. Only in August, after turning seven, was she able to be flown to Winnipeg and, a month later, brought home to the small southwestern Manitoba city of Brandon, about 200 kilometres from the provincial capital.

The nightmares that would lay waste to the Horton's lives and the lives of the other children they would have — Dr. Horton and middle daughter Heather, now living in Winnipeg — began in earnest.

The symptoms their little girl exhibited — a vicious temper, destructive behaviour, chronic sleep disruption, virtually no impulse control — are now recognized as some of the classic symptoms of severe brain injury, but these were disability's dark ages.

Nothing worked — not enormous doses of tranquilizers, nor sessions with child psychiatrists, nor behaviour modification — and the Hortons learned early the hazards of institutional care when their little girl was sent to Manitoba School for the Mentally Retarded in Portage la Prairie, ostensibly for a three-week assessment. When her parents came to visit after only a week, they found a wild creature, almost unrecognizable: Wendy's front teeth were badly broken, chronic diarrhea had stripped eight pounds from her small frame and under a filthy dressing on her forehead was a festering, infected wound.

They took her home.

And there, for the next two decades, with an absolute minimum of outside help — from the Victorian Order of Nurses, at first, and much later, what's now called "respite care" from aides who would move into their house so the Hortons could briefly escape for a few hours here and there — Wendy stayed, with only her mum and dad to care for her.

They knew what the experts didn't — that, as Dr. Horton put it last week, and it's as true now as it was in those early years before Wendy's baby sister was born, "There's a lot of person there."

For all of Wendy's physical difficulties, despite the destructive behaviours, there were always sufficient signs of progress to fuel her parents' memories of who she had been and their hopes for who she might yet be — and of real intellectual life.

Soon, Wendy learned to print and use a workbook. After her parents fought to show she was capable of being taught, they won her a teacher's aide and the right to go to school — even if it was, in later years, a school for the retarded.

(The brain injured were typically misdiagnosed as retarded or mentally ill, Margaret Green, president of the Brain-Injured Association of Toronto, said last week. The Manitoba brain-injury Association, for instance, is still trying to find a place for a young man who was wrongly sent to the Selkirk Mental Hospital as a teenager where, in the company of the criminally insane, he learned behaviours so violent he was recently pronounced a threat to society.)

Wendy's speech improved; she learned to use a typewriter and would write letters long into the night — to Santa Claus, to local radio talk-show hosts, to the country singers she adores, especially Canadian star Tommy Hunter, the mere mention of whose name still inexplicably renders her giddy with pleasure.

Always there was evidence of a dry, properly bitter sense of humour. One of her famous family recipes, for Roast Rat on Ryes, reads as follows: Step one. Get fresh dead rat. Step two. Roast it. Step three. Put on piece of dark rye bread. Step four. Bake in oven if desired." She once sternly rebuked Santa: "You have a lot of nerve and gall not to be delivering gifts in August, right after my birthday, because I want more present right now! Bring me diamonds, rubies, emeralds, and gems for Christmas as well as a Randy Travis record and any old Bob Willis records." And at the Hillcrest Home, Wendy often referred to her elderly fellow patients, many of them with Alzheimer's, as "the old goats," and described herself as "the Invalid", emphasis on the second syllable.

In 1991, by the time she had been out of school and thus at home every minute of every day for seven long years, and futilely on a waiting list for a residence for the retarded for more than five, the Manitoba Brain-Injury Association held a series of public forums to examine the effects of traumatic brain injury and garner some attention for its small group of members.

Both Mr. and Mrs. Horton spoke out publicly for the first time, painting their 22 years of quiet desperation in ghastly detail, though always in the quietly reasonable language that is their way.

"After raising a family and coming to an age where we should be able to go and have some freedom," Mrs. Horton read then, "we find ourselves more confined than parents who have infant children."

"I am virtually a prisoner in my own home after all these years. I can hardly express my absolute frustration in not even being able to plant or weed my garden. Do you know what it's like not to be able to go outside for a walk around the block when you want to? Do you know what it's like not to be able to go to the grocery store, visit a friend, pursue a hobby?"

Mr. Horton, who was then still working at a local community college, spoke only briefly. As he noted last week, "As a man, you keep it all inside." In four short pages he described his family's anguish — 22 years of enforced house arrest; of no holidays or dinners out; of a parade of socials workers and helping professionals going through the Horton's lives, each burning out after a few months; of broken furniture and holes smashed in walls from Wendy's rages; of hundreds of letters to bureaucrats and politicians "who either write you off as a nutcase or fail to answer you. Imagine the futility of it all after 22 years."

At times, Mrs. Horton, an attractive woman of 62, said at the hearings, "We feel at our wit's end and can see no way out of this predicament."

She was, it turns out, not merely tortured, but prescient. The Hortons had bared their souls and their hearts. Did they imagine something would change? Did they believe someone in authority would hear them?

Well, they did believe, of course.

As Dr. Horton, who entered medicine precisely because of how she had seen her big sister, and her parents, treated by the health care system for so long, said last week, the family mantra was "It's going to get better." I remember going to bed every single night in this house thinking it's going to get better and it never did. If we had known then, if we'd known, how would we have coped?"

Yet, then as now, no matter how frantic and battered, the Hortons were not prepared, as Mrs. Horton said in her presentations, "to solve the problem at any price...by dumping out daughter into a mental institution where she would, after a few agonizing weeks, die because of her physical and mental inability to adapt to such an environment."

It was after the hearings ended, in 1992, that the parents first began actively trying to move the mountain that is big government to provide some sort of housing for people like their daughter.

They formed a small working group that came up with a plan, and architectural drawings, for a small three-bedroom residence for Wendy and the two other brain-injured people they know.

But this modest dream was turned down in the fall of 1993 when the formal grant application went to the then-Conservative Manitoba government; there was no money for new construction.

The Hortons were urged to come up with a new plan, this time for a wing for the brain-injured that could be added on to an existing small rural hospital.

As this project gathered momentum on paper, the family agreed to have Wendy moved from Brandon to the little town of Rivers, about a half-hour away, the idea that she would stay there temporarily while the necessary renovations were done, and then slide over to the new unit. The Hortons secured a pledge from the government to fund the one-on-one, round-the-clock care she required.

In 1994, just after her 32nd birthday, Wendy left home.

When she said goodbye to the main-floor bedroom she had shared for most of her life with her mother, and the blue and white bungalow, Wendy could still walk; she had to be steered gently, mind you, but she could walk. And she was still pounding out letters on her battered Underwood, still composing songs and quirky recipes.

But once Wendy was settled in, the renovation project grew by leaps and bounds to become a grandiose 10-bed expansion, and the Hortons were essentially cut out of the planning loop.

After a year, the project was still in development; Wendy was clearly regressing; her room was too small for a desk and her beloved typewriter; she had no activities of any sort and was spending all her days lying on the floor or in bed.

By now her parents had learned well the difficult line they must walk, and which they continue, to this day, to straddle in their guarded discussions of the medical care Wendy has received: how to fight to get adequate treatment for their daughter without being seen as demanding parents and being written off completely as poisonous.

This phenomenon was aptly described by Ms. Green of the Toronto brain-injured group: "The squeaky wheel doesn't always get the grease in the health care system. Just as often, it gets the static."

Dr. Horton has seen the same thing at work n her own practice. "I can't tell you the number of times that I've been told, when I get a new patient, that they have a difficult family, and what I invariably find are reasonable, decent people just trying to look after their loved one." The best advice, the firmest advice, this pretty young doctor has for her medical students is "there's no substitute for giving a damn."

During Wendy's time at Hillcrest, it was the Hortons who bathed her, taking her home with them every second weekend. At some point a few years ago, they said, Wendy developed a real aversion to baths, when even Mrs. Horton's cunning plan of labelling bath products with pictures of her favourite country stars and giving her a bogus "survey" that required she try the products and rate them, no longer worked, and Wendy could not be calmed.

No one has quite figured our why she so loathes a bath. Perhaps she feels vulnerable, naked and slippery and at the mercy of staff, and is frightened. Perhaps, since this is one of the few choices still remaining to her, she is exerting control in the only way she can.

But the fact is, at bathtime, the Hortons say, their daughter is often aggressive and angry, and though she is frail, Wendy is also strong and notoriously stubborn. The staff at the nursing home couldn't or wouldn't manage it, and began, with the doctor's approval, drugging her first, finally refusing to bathe her unless they could use Haldol, a major tranquilizer that would knock Wendy out for days and which she tolerated poorly.

Thus did Mr. Horton and his wife come to believe that at the home Wendy was deemed "the beast at the end of the hall" and they "the beasts' parents". As he told the story unconsciously diminishing the family's remarkable efforts, he watched my face carefully, as though looking for signs that I, too, considered him over-demanding or pushy.

Such, said Mr. Horton, are "the Bob Latimers created. They're not born, but created by the system, by a thousand events just like this in their lives."

The Hortons have thought a good deal about Latimer, the Saskatchewan farmer now in jail for the deliberate gassing death of his severely disabled daughter, Tracy. "He's a lot like us, I think," Mr. Horton said last week, "except his daughter was a lot worse off than Wendy." Of all those who sit in judgement of Latimer now, he asked rhetorically, "Where were they before? I know where they were. They were a thousand miles away." Jean Horton agreed, adding, "It's not a choice I would make, but he was driven to that."

The brain-injury unit was never built at the Rivers Hospital. The Horton's simple plan was again rendered grandiose by the empire-builders, and was turned down by the government in 1996. The only renovations ever done on Wendy's behalf occurred shortly after she moved in, when the walls and floor of her room were carpeted so she couldn't injure herself.

That fall, the Hortons were advised that the best plan now was to "develop a program with a Brandon personal care home." Weary of the near-daily drive they made for two years to and from Rivers, they brought Wendy back to Brandon and she moved into Hillcrest.

By the fall of 1999, it was the Brandon Regional Health Authority that was to establish Manitoba's first brain-injury program; the projected target date for the new unit was January of last year. About 1 month later, this plan was submitted to the New Democratic Party government and, depending on which official was doing the talking to the Hortons, in November of last year either rejected or put on hold until 2002.

It was then the Hortons decided to try to do it all on their own — establish a charitable board; secure the dollars the government was already spending to keep Wendy in the nursing home; get a builder and a lot and a mortgage and actually build the very same sort of simple house they had envisioned all those years ago.

But soon they were embroiled in the same red tape that once saw it take more than a year to get Wendy a new wheelchair.

One day, the family were told the health department had transferred the money to the family services ministry; the next, no one in government knew anything about the mythical "flow" of funds. Not so long ago, at a meeting, Dr. Horton was greeted by beaming bureaucrats who appeared shocked when they asked how the family was and she replied, "As well as can be, in the circumstances."

Why, the chorus went up, what ever could she mean? Things were going splendidly!

Dr. Horton was alluding, of course, to the abrupt announcement from Hillcrest in late April that Wendy was to be turfed out of the home and back into her parents' lap — and at least some of the people in that room know very well that this was the case, as Hillcrest's boss confirmed last week.

Just yesterday, Dave Chomiak, the NDP Minister of Health, whose office was alerted to the Horton's immediate crisis by the Post a day earlier, acknowledged that the so-called "transition" — Wendy's enforced move — was badly "screwed up" and miserably handled. He admitted that some of his officials were aware of the situation before Wendy was sent home, and pledged to find out how it happened.

"This was a systemic screwup, and there's no defence, and it's true," he said.

Mr. Chomiak said the issue of the brain-injured "is for me a big personal one", and that in his occasional tours of nosing homes over the 18 months his party has been in power "there's always a group of young people in there who aren't getting the care they need. These people cannot, and should not be sitting (in homes and mental institutions) all across the province but they are." Brain injuries, Mr. Chomiak said are a growth industry in Manitoba — accident victims, failed suicides, drug overdoses — and there isn't a single bed for such patients in this province.

In the long term, Mr. Chomiak said he is seeking to put in place a program that will mix institutional care with proper community residences for the brain-injured.

In the short term, with the minister breathing down his officials' necks, the Hortons were yesterday presented at last with what may be a viable plan: The government will advance the family a down payment, so Mr. Horton can be approved on his limited retirement income of $35,000 a year for a $130,000 mortgage. Almost a decade after they first dreamed of the little house, it appears it may actually be built. The target date for completion is now August 1, though no one expects it will be met.

As for Bob Horton, he sounded weary and defeated yesterday.

"They're going to tell you it's all solved," he said, "and maybe it is." He should be forgiven his cynicism; well-intentioned these new faces may be, but they hail from the same system that for decades did nothing, in which, as Dr. Horton said, even a slightly challenging case is often met with paralysis.

"I didn't realize how pervasive it is in the system," she said. "I see it now as a doctor. You get a slightly complex situation, and you're lucky if someone makes a call. If they make two, they expect the Nobel Prize."

And, for the next three months at minimum, the family is right back where they started so long ago in the summer of '69, except Wendy is s much worse.

Her few remaining opportunities to exercise a modicum of independence — her refusal to be diapered, for instance, and her insistence of feeding herself, spoonful by painful spoonful — are evidence of her indomitable spirit, but, in turn, punctuate her mother's nights with a half-dozen mad scrambles for the camping toilet in the bedroom the two once again share, and render mealtimes two-hour long ordeals that blend in, one with the other.

"I wish we had never taken her out of the house," Mr. Horton whispered fiercely last Monday, as, drenched in sweat, he moved into the bungalow all Wendy's possessions from the Hillcrest Home. "We'd be better off, Wendy would be better off." Dr. Horton said her parents are ripped by guilt at how her sister's condition has deteriorated. "After all they've done," she said wonderingly, "they fell guilty on top of it. Can you imagine?"

Sandy Murray, whose husband, Ken, remains at Hillcrest across the hall from Wendy's old room, once stepped in to help the people who have so often helped her, and was one of a group who looked after Wendy so her mom and dad could visit Mrs. Horton's own ageing parents in Victoria.

"I learned," Mrs. Murray said, "in a very short time of what these two went through."

"This may not sound right, what I'm about to say, but they've got a living death here. When is it going to end for them? They should be doing things, together, and having a life."

Mrs. Horton says she's lucky her husband didn't walk out when it became apparent what lay in store for them. "Jean always said," he demurred with a weak grin, "that if we broke up, I'd have to take the kids."

He couldn't leave her, any more than they could have left Wendy. Some people can walk away from trouble; some can't. And that, of course, is how all this happened. How could the Canadian health care system sentence an entire family to a living death? The answer is because, as with the ribald old line about why dogs lick their privates, it could.

Christie Blatchford
National Post