She’s about to give up when her fingers catch an edge. Something is caught in the drawer’s far corner, a tiny foil envelope which she retrieves with difficulty. Its slippery texture, its size, are familiar but she can’t say why, or what. Those raspberry candies she loved as a girl, maybe, hundreds of them individually wrapped in the bulk bin. One of those would be good right now. She can feel her mouth watering. She pulls at the partly open corner, squints as its contents drop to the floor. In the low light, she feels about on the flower-patterned rug until her fingers brush against something; it feels like a dried-up insect skin or beetle carcass or maybe an old scab. She recoils with a shiver, pulls her hand away, searches unsuccessfully for her glasses in the pocket of her bathrobe, in the items strewn about her, then reaches again, gingerly, bravely.

What is it, she wonders, holding the crispy wrinkled thing at arm’s length, squinting against the window’s glare. When she places it in her palm, its disintegrated insides all but fall away. She blows at the dust in her hand. Now she can see it. It’s—a ring. It’s her lost wedding ring. She is exultant. Norman, I’ve found it! Honey, don’t worry, I found my ring!

She turns to rest her elbows against the edge of the low chair beside her, uses them as leverage to push herself to standing, grunts with the exertion. She does what might pass for a little jig around the bedroom until her floppy pink slippers and her wheezing lungs trip her up, sending her back to the chair. Catching her breath, she slips the frayed brown-gold circumference onto the ring finger of her left hand, pushing it easily over swollen, arthritic knuckles. Gently she twirls the ring round and round, its rough edges catching on the loose skin of her finger. It doesn’t fit at all as she expected it to. It’s too large; it feels all wrong.

Suddenly she sees it for what it really is. Oh, for god’s sake, it’s a shrivelled old condom! What a stupid biddy you are, she says to herself. Where’s Norman Probably still in his workshop. Thank goodness he hasn’t seen her mistake. Angry with herself, she throws the thing. It lands on the bed, falls into a crease in a pillow.

Things have been moved around and missing ever since Richard came by last week to check on her. Everything is topsy-turvy.

Norman is so smart, so capable, always busy with some project or another. When he isn’t working, he’s tinkering away, repairing a household item or inventing some new gadget for them to try out, like an electric potato peeler or a miniature spout that lets you drain the water from a tin of tuna before opening it. He’s tall and strong; he can lift her off her feet if he wants to, just for the fun of twirling her around him, but his fingers are slender and sensitive for such a large man, and able to do precise and delicate work.

Rising slowly from the chair and tightening her robe around her, Lydia catches a brief glimpse of her face in the dresser’s dull, mottled mirror. It’s a good face, a face that launched a thousand ships. Is that right No, that isn’t her. Don’t be ridiculous. Who is it, then Someone beautiful. Ah, yes, Helen of Troy, that’s who. Or Cleopatra. Lydia knows she herself has always been a looker. Didn’t what’s his name, their neighbour, tell her so often enough Those very words—you’re a looker, he’d say. In front of everyone, his wife. Lydia thrives on the attention generated by her fine features and voluptuous figure. You’re a beautiful woman, Norman tells her. She smiles at him through the mirror and backs closer to where he stands watching her. Love me forever she asks him. Of course, he replies. His voice arouses desire in her; she wants to slip her arms around him. She leans backwards into him and loses her balance, falls against the wall. Shoulder throbbing, she turns to face him, to where she thought she saw him standing. Her throat catches with sorrow; emptiness fills her body.

The phone rings, six times before she finds it, right there in the pocket of her robe. Hello Hello Who is it Who Oh, yes, Richard. Of course I recognize your voice. I’m fine. Yes, I’ve been taking care of myself. Yes, I’ve been turning out the lights. Whose business is it, anyway I’m not about to let myself starve to death. I’m fine.

As she hangs up she hears him say, “Talk to you later, Mom.” Mom He called her Mom. Oh, it was that Richard. Her son Richard. She can see him now, as though he’s right there in front of her. A little blond-haired boy of three or four, a toddler still, cute as can be. Their only child. Always getting into trouble, the little monkey, but a sweetheart. Little button of a nose. Honey, she says to Norman’s face in the flowered wallpaper. Honey, Richard called. Then she panics. What is Richard doing, calling her Where is he Didn’t she just tuck him into bed Still holding the phone, she clutches at her robe, turning blindly around from where she is standing. Norman! Norman! She spots the clothes strewn about the bedroom, certain her little boy is in the midst of them. Her mood shifts; now she’s angry. What does Richard think he’s doing, throwing clothes and underwear around like that Young man, she scolds him. This is very naughty of you, getting into Mommy’s and Daddy’s things and making a mess. You clean this up right now, do you understand When I come back into this room I want it shipshape. With that, she heads to the kitchen, annoyance fuelling her step.

She’s had enough of this growing old, dammit. If she has to look at herself in the mirror one more time, she’ll poke her eyes out.

She places the phone in its charger, remembers her lost ring and bends to check for it beneath the oversized desk that serves as her home office. This is where she pays bills and answers email and does their yearly taxes. But now her laptop sits on it, unused. She can’t remember her password, can’t get the annoying thing to work. The way it’s tucked into the corner, the desk forms an inviting space—safe underneath, like a hideout. With effort she bends and crawls halfway in, the desktop a low roof above her. It’s nice in here. She likes it. Crawling out again, she slips her bathrobe off and drapes it over the open side to make a tent. Grunting, she manoeuvres back underneath.

It’s just like Girl Guide camp, like the summer she and her best friend, Samantha, spent an unwashed week swimming and hiking and learning to make fires. Samantha is here now, waiting for her, red pigtails sticking straight out from her head, a grin on her freckled face. The two girls lie on their backs in their secret hideaway, whispering and giggling. Lydia watches the stars until her eyelids become the night and she drifts off to sleep, her back pressing into the hard ground. When she wakes, she feels sore all over. The varicose veins in her legs ache as though someone is landing slow punches on them. Sam, quit it, she tells her friend. That hurts, smarten up. Quit it! I’m not playing anymore.

The pain continues and Lydia pushes her way up to sitting, knocking her head against the bottom of the desk. She swears loudly, moves onto her hands and knees and makes her way awkwardly past the draped robe out into the light of the kitchen. With the help of the desk she hoists herself to standing. The low-slanting sun is bright even through the dirty window; she blinks several times, reorienting herself. Naked, she shivers with cold. Where is her bathrobe Finger to her mouth, she turns round and round on the worn linoleum, her forehead creasing with frustration. She put it on when she woke up this morning, didn’t she What is happening to her memory Ah, there it is, right there on the desk. What’s it doing there Things have been moved around and missing ever since Richard came by last week to check on her. She hasn’t been able to find her pearls, or her small diamond earrings, or her wedding ring. Everything is topsy-turvy.

She goes back to the bedroom. Norman is there now, she’s sure of it. Lydia puts her hand through the gap between the buttons of his shirt. Her fingers stroke his belly and chest, dark hairs twisting softly around her fingertips. She nestles into him, can almost feel the warmth of his hands on the small of her back. She flushes, heat rising in her body. I like that, she says, softly. Don’t stop. She thinks of the striptease she performed for him, slowly taking off her sweater and then her blouse, her skirt and her pantyhose, until she was down to only her bra and panties. You like it, don’t you honey, she’d said, a bit shyly. He’d grinned and reached for her, finishing the rest himself.

Why won’t you hold me she asks Norman now. She catches herself and shakes her head. For heaven’s sake, here she is, thinking about sex. Funny, when you were getting it, it could be all-consuming, but when you weren’t—well, she could hardly remember what it was like.

She indulged in a pedicure, a rare treat, several months after Norman died. When her feet turned soft and pliable from soaking in the hot footbath, the middle-aged esthetician scraped the calluses from her heels and pushed back the cuticles on her toenails. Then she massaged Lydia’s feet and calves. The woman’s hands were warm and strong, and she seemed so comfortable using them on a stranger. Lydia found herself weeping with the unexpected pleasure of it, the loss and yearning the contact awakened in her.

Now the mirror’s reflection reveals her standing alone. Norman Fine, then. Lydia heads again for the kitchen, the ache in her loins pleasurable and frustrating. Her arousal has made her hungry. The fridge is empty but for a half-full carton of milk and a shrivelled head of cabbage. Slamming the door shut, she reaches for the cupboard instead, pulls out a jar of peanut butter and another of honey. At the counter she dips a finger into the peanut butter and licks it off. Mmmm, that’s nice, she says in a low voice. She dips her finger again and licks the tip of it slowly, gently. It tickles a little bit, feels good. She nibbles at it, scratching the tip ever so lightly with her teeth. Another dip into the jar, another languorous lick, this time sucking her finger to the first joint, pulling at it gently, her lips closing around it. Again. Now into the wide-mouthed honey jar—two fingers, three, all of them in her mouth at once, her fingers alive and throbbing, her tongue eager and strong. Hungry, lascivious, so many fingers, the taste delicious and sweet, the warm fullness of her mouth causing her to pant, a moan escaping her parted lips. She can no longer stand up and so she sinks into the chair beside the table. Enough; she is satisfied. She belches, she giggles. Pardon me, she says to the face in the wallpaper. She hasn’t felt this good since she can’t remember when.

The doorbell rings, startling her. No one ever comes to the door; no one visits her tiny apartment. Not that she can think of. She pulls her bathrobe into place and makes her way across the kitchen to the entry, a distance that feels, what with her gassy stomach, bad back and resentful hip, like plenty far enough, like too far. When she finally makes it to the door, stumbling twice and swearing, no one is there. I don’t want any, she hollers down the empty hallway.

She hopes Norman will come home soon. Summer evenings they walk together before bed, holding hands in comfortable silence, or talking about the day behind and plans for the next. She can see his profile from the corner of her eye. His nose is straight, his chin hidden by a short beard. She loves the way his eyes crinkle when he smiles or even when he frowns, which happens only rarely, when he is intent on a project and she irritates him with her interruptions.

Oh, she’s tired. She could fall asleep right here, one hand resting on the handle of the half-open door, her body leaning against the frame. She closes the door and considers making the couch her bed. No, that won’t do. She needs to brush her teeth. They are her pride and joy, straight, still all her own. In the harsh light of the bathroom she forces herself to pull out toothpaste and toothbrush. As she bends to spit, her bathrobe falls from her shoulders, cream-coloured fabric catching on her elbows and ample behind. Raising her head to the mirror, she sees her naked body reflected back at her. She can’t tell where the fabric ends and her skin begins. Dear god in heaven, who is that looking back at her What is that Thank god Norman isn’t here to see her. What does he, still so fit and handsome, see in her anyway?

She’s had enough of this growing old, dammit. If she has to look at herself in the mirror one more time, she’ll poke her eyes out with her knitting needles. That is, if she can remember where she put them. What would it be like, she wonders, to live in a world without mirrors, a cavewoman world, she supposes, where what you look like never even occurs to you?

Her hands are sticky from her feast; she runs them under the water, uses her special bar of lavender soap to take the honey from between her fingers. She barely recognizes her hands, all spotted and wrinkled. They look so bare. Where is her wedding ring Oh, god, where is it She panics, searches the countertop, knocking toothpaste and lotions to the floor. Where has she left it She steps into the darkened bedroom, her heart beating furiously, close to tears. How can she have lost her ring Norman, I can’t find it, she tells him. I’m sorry, honey, I’m sorry.

She lies down on the bed and pulls the rumpled comforter over herself. Sorrow pulls at her, wraps her in its arms. She floats on a vast wave of emptiness, uncertain what it is, exactly, that she has lost. Face buried in the pillow, she feels a touch against her cheek. A ring.
She holds its rough edges to her lips. She remembers. She forgets.

Rancher/therapist-turned-writer Patti Lott lives in the Alberta foothills. Her poetry is forthcoming in Prairie Fire and CV2.

____________________________________________

Learn more about our annual short story contest.

Support independent local media. Please click to subscribe.

The post Lydia appeared first on Alberta Views.

In spring of 2020 I chaired a working group that prepared the Royal Society of Canada’s “Restoring Trust: COVID-19 and the Future of Long-Term Care,” published in June 2020. The report documented two crises in long-term care.

The first was a crisis of high mortality. At the time, of all countries in the world, Canada had the highest percentage of its COVID deaths coming from long-term care: 80 per cent. We continued to have a shameful record, with rates dropping in the second and third waves only to about 70 per cent. This, in one of the richest countries in the world, considered by many people to have an exceptionally desirable standard of living. How could this happen In truth, that high standard is reserved for the young, the well off, the highly educated, those still working, and maybe that small proportion of the elderly with wealth or exceptional social circumstances. The latter, however, are not typical of the older adults living in most of our long-term care homes, or nursing homes as they are often called. There, residents are very old, frail, cognitively impaired, beset by multiple chronic conditions, many with untreated depression and other illnesses, on many drugs, with sensory impairments such as diminishing hearing and sight. Residents who were in the formal workforce collect CPP; some have a work pension, some only OAS. Most are female and poor.

Of all countries in the world, Canada had the highest percentage of its COVID deaths in long-term care.

The second crisis was the lack of humane care. This concerned how older adults lived their last days and how they died. During the pandemic, all residents in long-term care suffered. Those with COVID-19 suffered the most. Death from COVID-19 is a hard, hard death, even in a fully resourced ICU in the best hospital in the world. You cannot get your breath as your lungs fill; you are frightened; you are feverish; and as the virus breaks the body down, all systems rapidly fail—often your blood won’t even clot. I saw those kinds of deaths many years ago in the ICU from other virulent but isolated causes. When I read the first reports out of China of the way COVID patients were dying in ICUs, it took my breath away; old memories flashed back and tears stung my eyes. Then it happened in Canada. In our most-stricken long-term care homes, staff walked away, patients died of starvation and dehydration, in their own excrement, alone—in Canada! But no aide or nurse or manager leaves their post unless the conditions are beyond anything you or I can imagine. One doesn’t call in the army, as Ontario and Quebec did, unless the situation is dire. Across Canada, homes quickly became overwhelmed—bad and intolerable conditions descended on unprepared and ill-equipped settings.

Whether or not they had COVID, older adults were isolated from family and friends and confined to their rooms, immobile, eating alone, receiving infrequent and limited care because there weren’t enough staff. Even when they received care, they were tended to by seeming strangers in full personal protective equipment (PPE). Old people have sensory losses; they don’t always hear or see as well as they used to. In Canadian long-term care homes at least 70 per cent of residents have a dementia, and at least 90 per cent some degree of cognitive impairment. This means they need familiarity and routine, special attention to hearing and vision losses—not people who look like aliens garbed in PPE, making muffled sounds behind masks, their facial expressions unknown. For people with advancing dementia, it’s worse. You get confused (“Why are you punishing me?” “Why won’t my family visit?” “Where am I?”). You get anxious, and the thing you need most is recognizable human connection. It’s what keeps you alive. When one isolates an older adult who is frail and has dementia, predictable things happen: rapid loss of muscle mass and mobility, apathy, fear, agitation, loss of appetite… decline. In the fall of 2020 the Washington Post published an article based on Centers for Disease Control and Prevention data estimating that in a six-month period in the US 13,200 deaths among long-term-care residents with dementia had occurred due to COVID-19 conditions, prime among them social isolation. The death certificates said dementia, but these people died of loneliness.

The social isolation and confinement lasted past the first and second waves. Only well into 2021 did we see the widespread lifting of restrictions. We could have done that much sooner with proper resources.

All of these things happened in Alberta and across Canada. Some provinces were hit harder and some had more difficulties in certain areas, but none escaped. Importantly, the root causes were the same in every jurisdiction—all that varied was degree. Some differences are worth noting. COVID-19 was much more devastating for residents in Ontario’s and Quebec’s private, for-profit sector, for example, than in Alberta’s. Alberta manages the private for-profit sector rigorously, with careful regulation, comparable funding and thorough oversight. Some differences between for-profit and not-for-profit were apparent in Alberta (e.g., staff in private facilities are paid less, hence the provincial government gave them a temporary $2/hr wage top-up), but the overall quality of care here did not differ significantly across ownership models.

Two colleagues and I outlined steps to deal with the immediate crisis in a Globe and Mail op-ed in June 2020. These included all long-term care homes having a plan for responding to outbreaks. We recommended regular, unscheduled, in-person inspections by a public health authority (not by an accreditation body). Long-term care homes must be equipped for infection control with adequate PPE and staff education in infection prevention. During an outbreak, long-term care homes must have means to connect residents with family and friends. Familiar voices, support and comfort are essential and these people also ensure accountability. All long-term cares homes must be able to properly isolate individuals with communicable illnesses. Long-term care workers must be given full-time work. Minimum wage is unacceptable given the importance of this work, the expertise required and the personal risks for workers. And jurisdictions must have a “one-site work policy.” Employment in two or more settings contributed to COVID-19 outbreaks.

These recommendations weren’t all implemented; second and third waves occurred and high mortality and care failures continued. But long-term care was prioritized immediately upon availability of vaccines. Alberta had fully vaccinated nearly all long-term care residents and most facility staff by late April 2021. This was a singularly urgent action. PPE was also made available to all Alberta health workers as of February 2021, although this came one year after the pandemic began. Education about infection control and PPE is ongoing. And, as of midsummer 2021, no more than two residents may occupy a room in an Alberta long-term care home.

The crises of high mortality and lack of humane care may have seemed sudden, even unexpected. But this novel coronavirus—to which no one had immunity, and which older adults were especially at risk of acquiring because of their aging immune systems—entered a long-term care system whose foundations were already severely weakened. How do we fix those long-standing deficiencies that enabled COVID-19 to hit long-term care so hard?

The 80 or so reports produced in Canada over the last 50 years about serious concerns in long-term care provide a tragic profile of neglect. This neglect is driven by some of the most difficult “isms” there are to change—ageism and sexism—all wrapped up with the profound devaluing of caregiving, stigma about dementia, an aversion to and fear of thinking of ourselves as old. We fear being cognitively impaired, dependent or unable to take care of ourselves, the loss of liberties. And, of course, we have a deep-seated cultural unwillingness to talk about death.

We have also been able to ignore the horrific conditions that often prompted those reports because they are treated as independent, unrelated problems. The nearly three dozen old people who burned to death for want of sprinklers… one of Canada’s most prolific mass-murderers doing her work in long-term care… a single, elderly woman dying from scalding in a bathtub in a long-term care home… horrific sexual assaults in long-term care facilities… all real events in four different Canadian provinces. We think of them as terrible one-time tragedies.

They are not; they all happened because the system in which we care for older people is flawed. We have never really shed the vestiges of its origins. Nursing homes are a product of 17th century Elizabethan almshouses and poorhouses—wretched places staffed by wretched people. Elizabethan poor laws created classes of the deserving and the undeserving poor. Those same classes were echoed in nursing homes of the 20th century—classes of the deserving and the undeserving old (often poor, destitute, female, ill, alone or mentally ill).

Today, long-term care homes sit uncomfortably between the Canada Health Act and 13 different provincial/territorial jurisdictions, legislations, regulations and arrangements, a sort of “no woman’s land.” This is a realm rife with jurisdictional squabbling that only serves to deflect our attention from solutions. These homes don’t exist in a vacuum of ignorance—of insufficient knowledge about how to improve care. No, they sit in a vacuum of inaction and neglect.

What long-standing conditions in long-term care homes have we ignored?

First, we are failing to keep up with the changing profile of residents enter-
ing long-term care. Residents are now older, more dependent, most of them with dementia, and much further along in the course of their various conditions because of the success of “aging in place” policies. These are a good thing, but only if we adapt our long-term care sector to higher care demands and improve staffing.

This change in the profile of long-term care residents has been accompanied by our delusions that their care—some of the most complex and demanding in healthcare or social services—can be adequately provided by a workforce of whom roughly 90 per cent are unregulated, usually with a high school education and a certificate that requires less than a year of training. We also kid ourselves into thinking this work can be done without enough registered nurses and educators to provide support to this unregulated workforce and without raising minimum hours of care accordingly over time.

Care is poorly integrated across the entire spectrum, from hospitals to primary and community care. We have a sometimes incoherent regulatory system that in some instances overregulates around risk and sometimes underregulates, and where accreditation and inspection are inconsistently applied across the country. Alberta’s regulatory system, while imperfect, is more coherent than many.

Our society utterly fails to put the older adult’s voice front and centre, to hear it, to heed it—whether that voice is from people with dementia or not. Similarly, families are often poorly integrated into long-term care.

We also take a “head in the sand” approach to long-standing population trends. The aging of the population should surprise no policymaker or citizen. It has been baked into our demographics for a century, accelerating as living conditions have improved, fertility rates have dropped and medical science enables us to live longer. We also ignore other population trends. New Brunswick’s population, for example, was the youngest in the country in the 1960s, and 50 years later it is the oldest—a stark illustration of how a sagging economy and out-migration can accelerate a province’s aging. Alberta may be young now, but we too are unprepared for an aging population, and inaction will make us even less prepared for the years ahead.

 Our long-term care systems require serious and rapid attention to long-standing inadequacies. The Alberta government’s Facility Based Continuing Care (FBCC) review, released in May 2021, noted that many issues existed in long-term care prior to the arrival of COVID-19 and “were amplified by the pandemic itself.” Its 42 recommendations include an increased focus on quality of life and person-centred care, particularly culturally appropriate services and specialized services for people living with dementia; improving the coordination of long-term care with other health and social services; increased hours of care from nurses, healthcare aides and therapy staff; better wages and benefits, more full-time employment, and mental health and wellness supports for staff; improved monitoring and inspections; replacement of aged facilities; elimination of shared rooms; and funding for the development of new types of long-term care spaces.

We must make workforce improvements immediately. This is the single most important factor to creating a sturdier system, better able to withstand pandemics and other events. It depends on multiple factors, as estimating staffing needs requires us to understand the residents, the workforce caring for them and the local care environment. Alberta is better positioned than most provinces to bolster its workforce. We have good data on residents’ characteristics and their care quality by virtue of having implemented routine data collection every three months in long-term care homes. Not every province has this.

However we have almost no data on the long-term care workforce throughout Canada. It’s  nearly impossible to even count the unregulated workforce—the care aides and personal support workers. Few registries are in place, and where they are, they are ineffective. In late 2020 Alberta moved to be the first province to regulate care aides. This is a significant step. The province’s FBCC review did recommend increasing minimum hours of care, but it stopped short of stating the proportion of care that must be provided by registered nurses and allied professions. The evidence is unequivocal that not just minimum hours of care but also the skill mix determines adequate staffing.

We lack data on the characteristics of the workforce, particularly the care aides, e.g., ethnicity, languages spoken, caregiving burden outside of paid work, and workplace stress (burnout, physical and mental health, engagement, empowerment, job satisfaction, intention to leave etc.). Such information would be essential in normal times; it is urgently needed in the aftermath of COVID-19’s toll on the long-term care workforce. In Alberta a partnership of government, regions, long-term care facilities and researchers is monitoring a representative sample (about 20 per cent) of urban long-term care homes, but this effort is not comprehensive.

Attitudes about age, women and race enable us to think it’s acceptable to provide poor care to residents and insufficient education and support to care workers.

My colleague at York University Dr. Pat Armstrong frequently says, “The conditions of work are the conditions of care.” She’s correct. The care environment must include strong leadership at all levels, including the front lines; cohesive teamwork; a supportive culture; adequate resources; feedback on care unit performance; opportunity for ongoing learning; good communication; inclusivity; meaningful integration of ancillary workers on a unit (dietary, housekeeping, custodial); a focus on relationships and relational care; and, importantly, the prioritization of resident quality of life and autonomy. When these conditions aren’t monitored, it is impossible to know whether they’re improving, staying the same or declining. We need to assess them and act on those assessments. Monitoring must be widespread and embedded in routine systems, just as payroll is embedded. If available, relevant and acted upon, data are a powerful tool for change.

Funding goes hand in hand with political will and the will of the people. Our governments respond to what citizens demand, sometimes slowly, but the ballot box speaks loudly. If politicians haven’t responded, this is in part because we haven’t demanded enough. If we haven’t demanded enough, this is surely because we haven’t understood what long-term care conditions are truly like or what care our grandparents, parents, spouses, siblings, long-time companions—and, soon enough, ourselves—need. And maybe we’ve let the rhetoric about the “grey tsunami” sway us: the old people “bankrupting the economy”; the “boomers who took it all and left nothing.” This is utter nonsense, but these ideas are persuasive. They’re persuasive because we’re a profoundly ageist society. We do not value older adults; we value them less when they’re not “unit-producing individuals,” and still less when they’re cognitively impaired or no longer vote and have no voice because advanced dementia has taken it.

Neither does our society value the work of caregiving, work often done by women—and in the case of long-term care, almost entirely by women, over half of whom are women of colour. Our attitudes about age, women, race and caregiving enable us to think it’s acceptable to provide poor care to residents and insufficient education and support to workers to do this complex and demanding work, this honourable work. We think older adults aren’t entitled to live the last stage of their lives with dignity, free of fear, loneliness and pain. What happened in long-term care during COVID speaks louder than any protestations we may raise to say it isn’t so.

It will take more than just informed voters, better resources, more staff or good data to improve long-term care. We need committed policymakers, educators, health professionals, lawyers, civil servants and everyday people who care. We must commit to support our fellow citizens who require long-term care so that they can live and die with dignity, with purpose and without fear or suffering—and even with moments of joy.

If all of the recommendations in the Facility Based Continuing Care review are prioritized and action is taken, if Albertans of all ages step up and demand change, we could come out of this pandemic the better for it. But this is not a given. Without fundamental changes and tenacious effort, long-term care will continue to be inadequate at the best of times—and woefully unprepared for the inevitable next pandemic.

Carole Estabrooks is a professor of nursing at the U of A and scientific director of the Translating Research in Elder Care program of applied research.

____________________________________________

Support independent local media. Please click to subscribe.

The post Fixing Long-Term Care appeared first on Alberta Views.

Family caregiving can be like that.

Family caregiving, for those unfamiliar with the modern usage of the term, is an informal, ad hoc process associated with family members caring for other family members who are experiencing an ongoing illness or disability, and whose existence would not be sustainable without some kind of support.

In a sense, before a name was provided, there has always been family caregiving—caring is, after all, what families do—but the contemporary term has evolved as modern medicine itself has evolved. As medical practice developed in sophistication and scale in the 20th century and became an integral part of western society’s social contract, designed and controlled by federal governments and universally expected as a right by citizens, governments were confronted with a dilemma. Intractable medical problems, ones for which there were no quick fixes, required significant resources and proved enormously expensive. By using a family caregiving model, patients still requiring extensive medical attention could be released earlier from hospitals to their families, who with guidance from medical staff could provide the necessary support. Patients would enjoy greater comfort in their own home, greater autonomy, feel less isolated and receive more personalized attention. For individuals recovering from strokes, or coping with cystic fibrosis, or the early stages of Lou Gehrig’s Disease, or any one of a variety of other chronic disorders, it made no sense to expose vulnerable patients to the viruses and germs that enter a hospital. And, from the government’s perspective, the care was provided free of charge, and so a line item could be extracted from the healthcare budget.

In the 1960s through the 1980s, another major component of health-care followed this trend: the care of patients with mental illnesses. Up until the early 1960s the prognosis for the treatment of mental illnesses had been so poor that apart from a few mostly ineffective treatments (think insulin therapy—induce a coma with insulin injections to shock the brain and somehow reset it—or hydrotherapy, in which the application of cold or hot water somehow has therapeutic value upon the brain) the dominant solution had become simply to isolate and aggregate psychiatric patients. Enormous asylums and mental institutions were constructed, ostensibly offering “care” to patients suffering from mental distress.

In the late 1950s and 1960s, however, new drugs were invented that promised a better outcome for psychiatric treatment; patients were not entirely cured by these medications, but the most obvious symptoms of mental disorders were mostly controlled. Medical professionals soon realized psychiatric patients were better served practising their social skills in the community rather than being warehoused in institutions. As psychiatrist Werner Mendel wrote in 1976 in his “The Case for Closing of the Hospitals,” “The hospital as a form of treatment for the severely ill psychiatric patient is always expensive and inefficient, frequently anti-therapeutic, and never the treatment of choice.” The concept that evolved out of this was that patients would, instead, receive care and attention in the community, and by doing so would become more fully integrated into society. As psychiatric institutions closed, though, funds that were supposed to follow patients into the community to create these services never really did. Instead, as Andrew Scull observes in his book Madness in Civilization, “In the midst of all the excitement about the replacement of the mental hospital and the breathless proclamations about the virtues of the community, it seems that few people noticed the degree to which the new programmes remained figments of their planner’s imagination.”

Which remains the case today. Every official report in this country—see the latest Canadian Mental Health Commission’s “Mental Health Strategy for Canada (2012),” and every government-funded report prior to it—declares mental health care to be woefully underfunded. And the community services component is particularly neglected.

Family caregiving is a term, I must confess, that I’ve never much liked. It sounds too neat, too clear, too tidy. The impression it lends is that there exists a particular paradigm: someone who gives care, and someone who gets it. In my experience that model is too simple.

Our family has lived alongside schizophrenia for 40 years. My younger brother, Ben, was diagnosed in 1977, and in 1978, unable to see a good outcome in his future, took his life. My older brother Olivier began displaying delusional and paranoid thinking in 1979, and following a diagnosis of schizophrenia in 1980, and his own attempted suicide, entered Calgary’s Holy Cross Hospital psychiatric unit. When Olivier was discharged from the unit, jobless, adjusting to his medication and its debilitating side effects, and struggling with the new reality of living with a life-long illness, he moved back in with my mother. That living situation went through many adjustments, some of which Olivier and I chronicled in our previous book, Bitter Medicine: A Graphic Memoir of Mental Illness.

My mother provided financial and emotional support for my brother. In return, Liv provided emotional support and companionship and physical assistance for her. My oldest brother Nic and I stayed close and provided emotional support, assistance with groceries, communication back and forth between a variety of medical and government agencies, arranged transportation to medical appointments around town, and facilitated emergency interventions when health situations arose. The combination of all these intersecting efforts allowed life to carry on. What we all provided was less a direct give-and-get than an interconnected, complex network of care, like a spider’s web.

But it wasn’t pretty. The truth was it more closely resembled the flawed, wonky structures generated by those spiders given LSD during lab experiments in the 1960s than the glorious, dew-dappled symmetry you might spy hanging from some branches on an early morning walk. It was a web fashioned as much from good intentions and competencies as from compensations, mistakes and frailties. It sustained and supported, but only barely. Snap a single thread and everything tumbled away.

When I realized my mother was displaying signs of dementia, I could sense that particular thread shearing, and for three or four years my family scrambled to construct a new web.

I knew that finding a solution—a solution transitioning out of the previous situation that would benefit both my brother and my mother—would be difficult. I just didn’t understand how difficult.

For one thing, everything about my mother and Olivier’s living arrangements was so entirely meshed. They co-owned an apartment and split the monthly condominium fee; they shared grocery expenses, utility expenses, telephone expenses, daily household responsibilities; provided help and emotional support for one another in a thousand different ways. As well, both of them were creatures of habit and had nearly 40 years to establish a comfortable routine.

Once my mother began manifesting signs of dementia, the living situation deteriorated rapidly. Nic and I tried to solicit medical help, but my mother, always independent, resisted intervention. She began to fall, so we had railings installed and obtained an alarm bracelet and necklace. She responded by “losing” the bracelet and refusing to wear the necklace, and continued to fall. When she lost the ability to prepare meals or clean herself, we arranged for home care to assist—she vigorously rejected it. The phone was disconnected and the utilities went into arrears because bills weren’t being paid, so I took over the finances. She grew physically ill and contracted infections. The conditions around the apartment became unsanitary and dangerous. As the situation spiralled downward, my brother’s mental state became precarious.

At times it seemed like we were playing a perverse game of Whack-A-Mole—whatever problem emerged we hit, only to have a brand new problem instantly pop up. We couldn’t arrive at a collective solution because my mother wouldn’t agree to one, couldn’t even agree that there was a problem, was adamant that she remain home where she could provide care for her Olivier, and at least initially her family doctor was unwilling to offer any clearer diagnosis beyond what he characterized as “age-appropriate memory loss.”

Obtaining medical assistance or advice in this situation was difficult because each separate medical branch viewed the other as representing “the problem.” In the eyes of Olivier’s medical supports, my mother and the increasing complications of her dementia represented the problem. I received a call from a member of his psychiatric support team telling me I had to do something. Did I know how challenging my mother was, how unsustainable the situation was becoming for Olivier He was depressed, I was told; the living arrangements were unhealthy. What was I going to do But from the perspective of the paramedics who arrived in one instance when my mother fell, and who took her to the hospital to see if she had any broken bones, my brother’s mental condition was the complicating factor in her untenable living arrangements. What was I going to do about that?

Desperate for answers, I enrolled in a couple of online courses, one on dementia and one on caregiving and dealing with psychosis—at this point my mother was already beginning to see and hear things. I discovered we were far from alone in our family-caregiving distress. There were, in fact, many, many people struggling to find a way forward as their family aged, not just in this country but internationally, and they too were unable to find answers or support. In the chat room provided for students, one participant from Ireland wrote, “My biggest worry is what will happen when I die. Who will look after my son Some practical advice on preparing for this inevitability would be extremely helpful.” This sentiment was echoed by others, and in response another member of the chat group chimed in, “The anxiety is there on the other side too! My parents are getting elderly and I’m really anxious about how I’ll cope without them.”

Which perfectly reflects a few of the central weaknesses associated with family caregiving. There’s no particular training involved in family caregiving beyond what you find or improvise. As Carol Levine writes in her article “Family Caregiving” on the Hastings Center website, “Although family care-giving has always been an important kinship obligation, changes in demo-graphics, workforce patterns, healthcare economics and service delivery have resulted in dramatic change in its extent and complexity… Family caregivers are expected to provide the level of care that only a few decades ago was reserved for hospitals. But they are typically not trained or supervised.”

The books I read and the online courses I took certainly helped, but at no time did I feel like an expert as I struggled to develop solutions to the problems that arose, or even especially competent, and I often felt overwhelmed. When my brother experienced some-thing that looked like a seizure—clutching the back of a chair, his body rigid and trembling—I wondered: Is that a symptom of undermedication, overmedication, or is it an entirely new disorder When my mother insisted that the plumber had stolen her dentures, or imagined that a host of uninvited guests had spent the night partying in her home, or when she fell and wouldn’t permit home care staff to lift her or even touch her, what was the procedure, I wondered, that I should follow

In addition, very little support or advice can be found to assist with transition as caregivers age. In an institutional model of care, of course, if a doctor or nurse or any of the staff of a hospital falls sick or must leave or retire, they are replaced. That option doesn’t exist in most families. There may not be any children, or spouses, or in-laws with a particular skill-set available, or who live in proximity, or who have the financial wherewithal to take up these duties.

Nor is the relationship between family caregivers and hospitals and medical staff at all clear. Doctors and nurses frequently don’t know what to do with family caregivers, how much information to share, what kind of medical privileges or responsibilities they can or will authorize. As Levine continues in her article, “…professionals often turn the question (Why shouldn’t families care for their relatives?) on its head: Why don’t all these meddlesome families just stay out of our way?” While some in the medical profession are more open to including family caregivers, in my experience this is very hit or miss. I’ve been informed in Emergency to step back, told not to interfere, informed by doctors that they aren’t permitted to disclose information about prescriptions that I may actually have to administer. I may be part of “a team,” but I’m always made to feel like the very most junior member.

I would have preferred to write one of those articles that chronicle triumph over adversity and conclude with an uplifting message and a ringing endorsement of future solutions. Instead I can only share a story of very mixed results—one that ends with questions rather than a solution.

Because my mother was unwilling to let anyone else care for her, and because the dementia advanced at a pace that outstripped any preparations we could put in place, and because the living situation for Olivier was so chaotic and presented such a risk, my mother ended up being moved to a long-term care facility—the very last place she wanted to be.

And dying in the last place she wanted to die, as it turned out. On New Year’s Eve, 2016, she passed away from pneumonia. I wish to heavens my family had been able to coordinate an easier, clearer, cleaner, less troubled, more organized transition. That transition was enormously difficult for Olivier, emotionally trying, difficult to work through. He’s doing well now, but the adjustment to a new living arrangement tested him. Tested all of us.

The irony of the family caregiving model is that while there’s no particular protocol to follow, the responsibilities are vast and there is an enormous capacity for resulting feelings of guilt. When my mother finally moved to the transition unit of the Rockyview Hospital, she wept bitterly as soon as she realized she was never returning home, her biggest fear being how her son would survive. “Who will make sure he takes his pills at night?” she cried, certain she had failed him. And when I spoke with Olivier the day after my mother left, his biggest worry wasn’t for himself, but that he might have failed in his duty to look after our mother.

There are millions of earnest, desperately unprepared, underqualified families providing care for ill or aging relatives the best way they know how, improvising solutions for medical troubles they’ve never been trained to recognize or treat—an enormous number of them ill or aging themselves. They are hanging on as best they can, but they need help.

Hospitals can barely accommodate the present numbers of patients, let alone hope to accommodate in a conventional way the enormous numbers of aged looming on the horizon. And as the family caregivers the government relies on to perform caregiving in their homes falter, how will the healthcare system cope The Alzheimer’s Society of Canada estimates that 564,000 Canadians currently live with dementia and that in 15 years those numbers will increase to 937,000. The odds are good that many of those nearly one million elderly individuals are presently caregivers themselves.

“Most of the arguments for supporting family caregivers rest on economics: family caregiver assistance is essentially irreplaceable,” Carol Levine notes. “Beyond the loving relationships embodied in family care, there is simply not enough money, nor are there enough workers, to replace family members as the broad base of the workforce.”

This is absolutely true, and it will continue to be true. But if the family caregiving model is to be employed, some serious thought must be given to the notion of transition.

It’s long past time we had a hard look at the family caregiving model and determined how it can be better integrated into the healthcare system. What supports can be provided What will happen when a significant number of our caregivers themselves require care Whose needs will be met, and how In a medical system that only barely—and very informally—acknowledges family caregivers, who will offer support and mediation when things go sideways When so very much is at stake—lives, after all—what support and guidance can be provided?

Text by Clem Martini
Illustrations by Olivier Martini

Clem and Olivier Martini’s book The Unravelling, about their family caregiving experiences, launched in September 2017.

The post When Things Fall Apart appeared first on Alberta Views.

Over the previous two years, amyotrophic lateral sclerosis (ALS) progressively hijacked bits of her life: She stopped driving when her hands grew weak, quit ballroom dancing as her legs began to fail. The disease robbed her—a woman known for her strong viewpoints—of the ability to speak. She travelled in a wheelchair pushed by her husband, Daniel Laurin, and could communicate only by typing with some of the fingers of her left hand.

“She asked me, ‘Can you help me?’” recalls her friend, Mary Valentich, a professor emerita of social work at the University of Calgary, “And I said, ‘Of course I can help you. I’ll do everything I can.’”

They began a search for a physician in Canada who would help Schafer die.

Six months before, in February 2015, the Supreme Court of Canada had overturned a legal ban on physician-assisted death, ruling the law must be amended so doctors could help people with irremediable medical conditions to die. Federal and provincial governments were given one year to draft new legislation.

Valentich contacted professional medical organizations and patient advocacy groups across the country, even her provincial minister of health, but she couldn’t find a physician in Canada who would perform a procedure that was not yet legal. Valentich, Schafer and Laurin discussed travelling to Switzerland but feared Schafer would suffer on the trip. At several public meetings in Calgary on the upcoming changes to the law, Valentich stood up and asked if anyone in the province could help. With no new law yet in place, the answer was always no, not yet.

Then, in January, a hematologist in the Netherlands gave them the name of Vancouver physician Dr. Ellen Wiebe. Weeks later the ban was lifted, but with no provincial law in place, a court order was still needed. The trio spent $13,000 to take Schafer’s case to court—a significant sum of money to exercise a right the Supreme Court had already ruled valid, Valentich says.

On February 25, 2016, a judge in Calgary confirmed Schafer met the criteria to qualify for an assisted death. Four days later, Schafer, her husband and Valentich flew to Vancouver. In an ironic twist, Schafer choked badly while waiting at the airport; a stranger who knew how to use a suction device stepped in to help, perhaps keeping Schafer alive a few more hours. At 7 p.m. that evening, the trio arrived at the doctor’s clinic in the Fairview neighbourhood near the general hospital, knocking on the locked door after all other patients had left. Schafer lay in a bed in a 10th floor room as Dr. Wiebe administered a series of injections outlined by physicians in Oregon. Valentich and Laurin held Schafer’s hands.

I said, “Of course I can help you. I’ll do everything I can.” We began a search for a physician who would help my friend die.

“We told her, as you just keep telling people, that we loved her. What else can you say under those circumstances?” Valentich says. It took 40 minutes for Schafer’s heart rate to slow to a stop—a process longer than expected, says Valentich, because a pharmacist, on the advice of lawyers, did not provide the exact medications requested. Then Schafer “quietly fell asleep. It was incredibly peaceful.”

Over the next months, as Valentich grieved the woman who used to call her a sister, she asked the court to lift the publication ban on Schafer’s name, imposed during the application. Valentich promised her friend she would keep fighting so that other Albertans who wanted assistance to die would be able to do so more easily.

“It’s a promise I want to keep as long as I can because she wanted us to do this,” says Valentich.

Hugh Wallace was the first person to undergo a medically assisted death in Alberta. A Calgary-based engineer who’d run his business from a house he designed himself, he’d been diagnosed with multiple sclerosis in his mid-50s. That was the beginning of a series of losses over the next 20 years, says his wife, Evie. He lost his ability to walk (though he still managed a dog-sledding trip to the Arctic) and to go to the bathroom unaided. Eventually his eyesight faded. In 2015 he was diagnosed with small-cell lung cancer too aggressive to justify chemotherapy, with its toxic side effects. Within months, his tumour pressed on his laryngeal nerve and his voice disappeared too.

“That’s what made his decision,” says Evie Wallace. The Wallaces spent $15,000 in legal fees getting a court order.

“Going to court was very cold, very clinical, very law. There was no one to say ‘I’m sorry you’ve got this. This must have been a hard decision,’” says Evie. “It was a pretty crazy time. When I look at where Alberta has come in a year, I’m very proud of this province and what AHS has done.”

Hugh Wallace died at home on April 19, 2016, with his family, two physicians and a nurse.

In the first three and a half months after Schafer’s death, when Canadians still needed a court order to die with medical help, six people in Alberta underwent an assisted death. Requests picked up when the federal law came into effect on June 17, 2016, eliminating the need for a court order. Now, there are sometimes two or more requests a week.

In the 20 months since Schafer’s death, a number of physicians and non-physicians in Alberta have emerged who are willing to facilitate a medically assisted death. So have many patients who seek it. “Far more people came forward than we ever imagined,” says Dr. James Silvius, the lead for medical assistance in dying preparedness for Alberta Health Services.

In total, 197 Albertans (and more than 1,300 Canadians) have undergone a medically assisted death since the ban was lifted in February 2016. In nearby Oregon, which has a population similar in size to Alberta’s but has allowed physician-aided dying since November 1997, 1,124 patients died by self-administered lethal medication in the 19 years it’s been permitted. In the first year there were 16 deaths; in 2015, 132.

In Alberta, people who sought assisted deaths came from all regions of the province; 139 died in a hospital or hospice, another 58 in private homes. Most often they suffered from cancer, multiple sclerosis or ALS. Their average ages vary from region to region. Although the overall numbers are too small to discern trends, average ages range from 67 in the north zone, to 75 in the central area, and 72 and 65 in Calgary and Edmonton, respectively.

When a person in Alberta considers an assisted death, they can ask any healthcare provider or contact the provincial Medical Assistance in Dying Care Coordination Service by calling Health Link (811) or emailing the MAID team. They then undergo independent assessments by two physicians and/or nurse practitioners, arranged by one of the five “navigators” who are responsible for managing the healthcare team that works with each assisted dying case.

When someone makes a formal request for an assisted death, it must be attested to by two independent witnesses who know the individual personally. They cannot know or believe they are a beneficiary of the patient and cannot be directly involved in providing healthcare services to the patient.

The assessors must confirm the person seeking medical assistance—and by law, they must be at least 18—meets the following criteria: They are capable of making decisions with respect to their health; they are not being pressured into the request; and they give informed consent after being advised of everything that may be available to relieve their suffering. A person must have a grievous and irremediable medical condition, serious and incurable; they must be in an advanced state of irreversible decline; and their suffering must be intolerable to them and without relief. Their death must be “reasonably foreseeable”—though what that means is not precisely defined.

The person making the request and their family are interviewed separately to alleviate any concerns about possible coercion. Then there is a 10-day period of reflection between the signing of the request form and the provision of assisted dying. Immediately before being provided medical assistance in dying, the patient must be given the opportunity to withdraw the request. Although a detailed review is carried out at the end of each case to reflect on how to improve the process, Dr. Silvius says it’s too early to see consistent learnings.

Many Albertans have sought medical assistance in dying—“far more came forward than we ever imagined,” says Dr. Silvius.

At least 76 Albertans have been turned down for assistance in dying because physicians decided they did not meet the criteria set out in the law. Some of the more common reasons for ineligibility include a mental health diagnosis, loss of competency to give informed consent or lack of evidence that death is “reasonably foreseeable.” Under AHS policy, someone deemed ineligible can seek a second opinion and request reassessment “at any time.”

Medical assistance in dying is often known as MAID, though the term is contentious. Some, like AHS’s Dr. Silvius, feel the acronym is too glib for an act fraught with emotion and complexity. Even now, MAID is a sensitive and controversial idea, delicate and difficult. Physicians who have performed MAID and family members who have witnessed it say it is an experience requiring compassion and an intense personal connection between provider and recipient. One physician recounted a story from a colleague: While giving the fatal drugs to a patient for a first time, the doctor got blood on her hands. After the procedure she sat in her car, looked at her hands and sobbed.

At the same time, this is a process coldly constrained by federal legislation. Healthcare workers are required to make decisions about a person’s eligibility based on black-and-white criteria where conditions are often grey. The procedure involves administering a series of medications that many physicians have little familiarity with and that are most often injected intravenously. (No one in Alberta has, to date, chosen the other option: ingesting pills. This technique carries a risk of choking and still requires a doctor to be there.) It is a patient’s legal right to request and receive assistance in dying if they meet the criteria; equally, it is the right of a healthcare provider not to participate in a medically assisted death if they are uncomfortable with it. Many are.

Dr. Eric Wasylenko, a palliative care physician and clinical ethicist in Calgary, helped formulate AHS’s assisted dying program although he himself is unwilling to help a patient die. “It is against my moral commitments to patients and myself and my profession,” he says, “but I will not abandon my patients and I will not judge them about their own choices.” He talks with patients about assisted dying, tries to understand their values and beliefs, and provides any information that can help a person figure out how to proceed, without, he says, trying to convince them of his point of view.

Healthcare providers volunteer to be part of the province’s MAID teams and are compensated on an hourly basis (with the maximum number of hours capped). Although compensation varies widely by case and by province, one estimate put a typical Alberta rate for the procedure at $621.60.

Dr. Silvius accepted the role as the lead for the province’s MAID program not because he believes in it—he claims to have no opinion—but because he considers himself an advocate for individual rights. “It struck me that if people were coming forward asking for this, providers were going to be put in sometimes uncomfortable situations and we had to figure out a way to support the needs and also the rights of both individuals asking and providers who may choose not to participate…. We took that approach right off the bat.”

One physician, who asked that her name not be published, has helped two patients to die. This physician—I’ll call her Dr. Sarah Martin—has also been involved in three cases where a person backed out or failed to meet the criteria.

In the days leading up to the first case, Dr. Martin couldn’t sleep and started grinding her teeth. A nurse had told the patient he would go to hell for ending his own life, and she worried colleagues and patients might say the same to her. “You don’t want to feel like people are thinking you’re a bad person, that what you’re doing is something sinful and evil,” she says. “There are definitely people who feel that way, but I’ve come to a place now where I know in my heart that it’s not.” Instead, she says, MAID alleviates a person’s intractable suffering. “Initially, you keep thinking to yourself, first do no harm, first do no harm. Having done it twice now, you come away feeling like you did the right thing. You did no harm.”

A nurse who has participated in medically assisted dying and who also requested anonymity argued that keeping someone alive when they are suffering is a form of harm. “There’s a fine line we all tread between doing no harm and forcing on someone an existence that no one would ever want themselves. That in itself, I believe, is one of the worst types of harm we can do… It’s our responsibility to help people not only to live when they want to but also to help them die with dignity and autonomy when we can.”

Dr. Martin says no two people make this choice for the same reasons. It’s the job of healthcare providers to explore who the patient is and the context of their request. “Make sure they’re not vulnerable,” she says. “Make sure they’re making this decision for the right reasons… The more you do, the more challenging it will get, because you might think you know that person’s story but you never know that story.”

Doctor Nadeem Bhanji, a psychiatrist and a clinical associate professor at the University of Calgary, has been involved in assessments of two patients who applied for MAID. One ailing woman had survived much longer than expected. Because Dr. Bhanji found her confused, he felt she was ineligible and declined the request. “It’s a very tough decision… If you over-call, you could take somebody’s life unnecessarily. If you under-call, meaning that you deny somebody the right when they have repeatedly wanted it, that certainly hurts as well.”

In Canada, people with mental illness only qualify for an assisted death if they also have a physical condition that meets the criteria. Mental illness alone is not enough. Patients with conditions such as dementia are ineligible because their capacity to make decisions is questionable. A person with mild dementia, however, can still make important decisions, says Dr. Bhanji. “Refusing MAID for those individuals because they have a condition of dementia or depression is in other ways also harmful because we’re saying you have a mental condition and therefore you cannot exercise your rights the way other Canadians do. In a way, isn’t that discrimination?”

The patient’s death must be “reasonably foreseeable”—though what that means is not precisely defined.

Valentich, as well as the advocacy group Dying with Dignity, argues people should be able to request an assisted death ahead of time through an advanced directive. That way, if a person becomes incapable of giving their informed consent because of dementia or another illness, they could still die in a manner of their choosing. But the proposal is controversial. The Provincial–Territorial Expert Advisory Group, which helped advise the various governments on legislation, was split over the issue of advanced care directives. The group did, however, recommend that substitute decision-makers should not be given legal authority to consent to an assisted death on behalf an incompetent patient.

Another doctor who asked me not to use her real name (to protect her patients’ identity), whom I’ll call Dr. Alison Counter, practises in Calgary, where she primarily looks after patients with addictions and mental health issues. Many of her patients are poor, some homeless. In the last year, she assessed three who requested an assisted death and watched as one died. She’s impressed with the program—it’s sensitive to proponents and opponents of MAID alike; the healthcare providers who work with the service are well supported, as are the patients and their families.

Yet vulnerable populations concern Dr. Counter. “I worry that people who live in shelters or on the street who don’t get access to appropriate care early on could choose (an assisted death) because that’s what’s covered,” she says. “I haven’t come across it myself but it’s something that’s deep in the back of my mind.”

Counter, Valentich and other advocates for MAID are also uncomfortable with the number of publicly funded institutions in Alberta that do not provide assisted death. Faith-based hospitals and hospices do not offer assisted dying, saying it runs counter to their religious beliefs. Rural health centres, meanwhile, often have no provider in the community willing to perform the procedure.

A patient can make a request for an assisted death to a healthcare provider in any hospital or hospice, says Dr. Silvius. The request goes to a navigator who finds physicians to do the assessments and provide the service. A patient at a non-participating site who asks about MAID or sends a message online will be connected with a navigator. If the person is deemed eligible, they’re then transferred to a participating facility or the patient’s home.

The numbers suggest people in areas with a higher number of faith-based facilities have no more difficulty accessing help in dying than elsewhere. In Edmonton, where 90 per cent of palliative and hospice beds are run by Catholic-based Covenant Health, 72 people have had an assisted death—all carried out in the non-faith-based facilities, suggesting that patients are transferred when necessary. Calgary, with far fewer faith-based facilities, has had 70 assisted deaths. By late summer 2017, 22 patients across Alberta had been transferred from faith-based facilities and four from non-faith-based ones to a participating provider or their own home to receive medical assistance in dying.

Gordon Self, the vice-president of mission, ethics and spirituality at Covenant Health, says staff are, by policy, not to try to influence a patient who requests information about an assisted death. “We ensure that we respect that choice, not stand in their way, ensure that they have timely access to the care coordination system.”

Still, many advocates feel patients should not have to be transferred from a publicly funded institution to undergo a medical procedure that is their right. “The idea of having to be transferred to a hospital bed or something to have this happen is unnecessarily potentially distressing, let alone if there are pain issues with being moved,” says Dr. Counter. “I know of situations where people have had to be moved and that was a stressor on them.”

In her Calgary home, Valentich keeps stacks of photos and newspaper clippings of stories about assisted death. She monitors the news closely and runs workshops on assisted dying. When the Alberta College of Social Workers sent a message to their members that they were not to raise the issue with clients, Valentich led a successful charge to have the policy changed. She hopes to see other professions follow suit, especially more lawyers willing to represent clients who are denied assistance in dying. She attends public meetings—at times, just to get the ear of someone who can effect change.

Alberta, she says, has experienced a revolution on the issue of assisted dying but there is room to grow. To her it is a question of social justice.

“Those who are denied—I think that’s the group we have to pay attention to. Why are they denied and how are they living?”

She’ll keep asking questions until she’s satisfied. That is, she says, her promise to a friend.

Christina Frangou is a Calgary-based journalist who specializes in medicine, fitness and health.

____________________________________________

Support independent local media. Please click to subscribe.

The post Assisted Dying appeared first on Alberta Views.

As a physician that locumed for weekend shifts in rural Alberta hospitals, I’d not previously worked in a public facility run by a religious institution. Unbeknownst to most people—including myself until I signed up—Alberta isn’t administered by only one health “superboard” (as Alberta Health Services is sometimes called). In fact, 23 hospitals and health facilities compose a separate board within AHS, led by the Catholic Bishops of Alberta, called Covenant Health.

In Killam the absence of emergency contraception owes to the ethical mandate prescribed by the hospital’s Catholic administration. According to Covenant Health’s corporate policy and procedures manual, “it is never permissible for Catholic healthcare providers to terminate an established pregnancy” or administer medications that have termination as their purpose. The only exception is for sexual assault—where the “assailant’s act is a violation of justice, and any semen within the woman’s body is considered a continuation of the unjust aggression.”

The morning-after pill works for up to 72 hours after unprotected sex, but the sooner it’s used, the greater its effectiveness. When there’s no pharmacy open on the weekend, and when the nearest other hospital is 40 km away, a teenager or any woman without a vehicle could be in trouble if their local hospital won’t help them.

The scenario was theoretical for me in Killam. I saw cowboys thrown from horses, an alcoholic farmer with a bleeding gut, the usual cuts and bruises—but no distressed women as I tended the ER. What was certain, though, was that the hospital, funded with public dollars, was passing judgment over private behaviour in no uncertain terms.

Covenant is now raising concerns that extend far beyond birth control. Following a Supreme Court ruling in 2015 and the federal government’s passage of Bill C-14 last year, Canada has approved physician-assisted dying. Just as it stated about emergency contraception and abortion, Covenant Health will not permit physician-assisted dying in its facilities. Their stand has many patients and physicians questioning how public hospitals can continue to be administered by Catholic agencies and operate under different medical ethics.

The Catholic Bishops of Alberta lead Covenant Health, a separate board within AHS comprising 23 hospitals and health facilities.

Covenant Health has the largest budget and covers the largest geographic area of any public Catholic health agency in Canada. Where the trend in other provinces has been to gradually absorb such agencies into the secular system, Covenant has lately been growing. Should Covenant Health continue to be protected and allowed to grow in Alberta, or is the role of the Catholic Church in administering public healthcare an anachronistic legacy that must be changed

Hospitals in Alberta—indeed in most of Canada—began through the labour of Catholic missionaries. The first in Alberta was established in 1863 by the Sisters of Charity (Grey Nuns) in St. Albert. Dozens of others were soon created to provide care for indigenous people and the hundreds of thousands of immigrants staking out a new life on the prairies. Managed as charitable organizations, these hospitals were the only option for people without the means to pay for private doctors. They led the battle against tuberculosis and the 1919 influenza outbreak, and established the first schools of nursing.

Their role changed after the Second World War as Canada and its provinces brought in government-funded healthcare. Universal coverage of hospital and doctor services coincided with a dwindling number of Catholic missionaries—soon there simply weren’t enough to run religious hospitals. Many Catholic hospitals handed over their administration to municipal and provincial authorities; others closed their doors. Between 1969 and 1975, 20 Catholic-administered hospitals in Alberta made this transition.

In 2008 the Stelmach government embarked on an unprecedented experiment in Canadian health management, amalgamating all provincial health services under a single, arm’s length corporate body. Alberta Health Services (AHS) was meant to harmonize services and exploit economies of scale.

At the time, only a few Catholic hospitals remained in Alberta; the last one in Calgary had gone over to the government in 1969. But rather than absorb the surviving faith-administered hospitals into AHS, the province decided to bring these institutions together under their own separate administration. Covenant Health would be anchored by the high-patient-volume Misericordia and Grey Nuns hospitals in Edmonton, but would include small hospitals, long-term care facilities and hospices across the province, from Banff Mineral Springs Hospital to Killam Hospital.

Today Covenant Health accounts for 10 per cent of ER visits in the province, 20 per cent of deliveries and 12 per cent of acute care beds. Its 2015 budget was $895-million, or roughly 5 per cent of the provincial health budget. Covenant remains largely dependent on public funding—88 per cent of its revenue in 2015 came from the government. Its budget has grown over the past few years as Covenant builds long-term care facilities.

CEO Patrick Dumelie says Covenant works under “dual accountability.” Its board has a commitment to AHS, which sets annual targets for quality and cost. But Covenant must also adhere to policies set by the Catholic Bishops of Alberta. These men, the leaders of the seven dioceses spanning Alberta and the Northwest Territories, approve appointments to an intermediary board entitled Catholic Health of Alberta, which appoints Covenant’s 11-person board. The Most Reverend Richard Smith, Archbishop of Edmonton, also holds one of the Covenant Health board positions. (Smith was appointed archbishop by Pope Benedict XVI in 2007.)

The bishops, says Dumelie, ensure that Covenant fulfills its “thousands-of-years-old calling to serve others… through protecting the sanctity of life from conception to natural death.” This includes guiding the policies adopted by Covenant on, among other things, birth control, pregnancy termination and end-of-life care. But the continuation of Catholic administration of hospitals in Alberta is entirely at the discretion of the government in power.

Alberta isn’t the only province to permit faith-based groups to manage health facilities. Across the country, 124 hospitals, hospices and long-term care facilities are affiliated with the Catholic Church. They’ve gone from covering 35 per cent of national healthcare needs in 1968 to just over 5 per cent today. A handful of other faith-based providers exist, with affiliations to the United Church, Seventh Day Adventists and the Jewish faith.

Ironically the only province with no Catholic health providers is the one with by far the largest Catholic population—Quebec. Church control of hospitals in Quebec was ceded in the 1960s Quiet Revolution, when a conscious effort was made to throw off what was seen as oppressive clerical meddling over many aspects of social policy. Elsewhere in Canada the process of secularizing health administration has been gradual and conciliatory. Catholic management hasn’t been forced to cede control, but little effort has been made to preserve it. When provinces restructure services or build new facilities, they tend to close religious facilities at a pragmatic pace that honours Catholics’ historic contributions but affirms the importance of secular administration.

As with emergency contraception and abortion, Covenant Health will not permit physician-assisted dying in its facilities.

Such was the pattern in Ontario between 1996 and 2000 under the Ontario Hospital Restructuring Commission, when 43 hospitals were shut down or amalgamated. It was briefly the pattern in Alberta prior to 2008, when several religiously administered hospitals were closed. It is the pattern in BC, where Comox’s St. Joseph’s Hospital will be replaced with a facility without Catholic administration.

But this isn’t the case for Covenant Health, which is expanding. Covenant Care, created in 2014, brought into the organization’s purview a number of new long-term care facilities with a combined budget of $56-million. Covenant is also distinguished by its geographic reach. In other provinces, the few remaining Catholic hospitals tend to be free-standing structures under regional health jurisdiction. Covenant spans a province, including urban hospitals and rural hospitals that are often residents’ only nearby practical option.

In February 2015 the Supreme Court handed down the Carter decision, recognizing a Charter right for medical personnel to assist in dying when patients are mentally competent and suffering a severe and incurable condition. On June 16, 2016, after lengthy debate, the federal government passed Bill C-14, giving legislative permission for what became known as medical assistance in dying.

Although the change had support from 85 per cent of Canadians and 88 per cent of Albertans, according to a 2015 Ipsos survey on behalf of Dying With Dignity Canada, the ruling and the law faced opposition. The question of whether individual doctors should be compelled to perform the procedure—or at a minimum refer patients for it—was challenged by the Christian Medical and Dental Society.

But the question of whether public institutions—hospitals, hospices, long-term care facilities—should be able to deny assistance has raised the most concern.

Covenant Health stated in May of 2016 that it has an “ethical and moral opposition to medical assistance in dying” and that the organization’s “unequivocal position to not provide or explicitly refer” must be recognized. Functionally, this means that any assessment of capacity, any answering of technical questions, and the act of assistance in dying itself would require a transfer away from a Covenant facility.

The Alberta government thus far has accommodated this objection through the creation of AHS’s Medical Assistance in Dying Resource Team. Team members are patient “navigators” brought in for all requests for medical assistance in dying—whether from patients or from facilities that object to the procedure.

CEO Dumelie believes this team ensures a seamless experience for patients. “We organize transfers for all sorts of reasons every day,” he says. “There’s no reason why we can’t do this well.” By February of this year, 85 Albertans had received medical assistance in dying. Ten of these people had been transferred from Covenant facilities, Dumelie says, “without concern.”

Others aren’t convinced the transfer plan is adequate—or that it ever could be. Dr. David Reggler is a family physician in Comox who conducts physician-assisted dying and has participated in five procedures. He recently resigned from the ethics committee of his Catholic hospital because it decided that all patients who opt for medical assistance in dying must be transferred to a community 45 minutes away.

“The process of medical assistance in dying involves first confirming that a patient has capacity, then waiting a minimum of 10 days, and then confirming on the desired day of the procedure that the patient has capacity and continues to seek the procedure,” he says. “Realistically, these patients are frequently in an extremely fragile situation. To move them at any point during this process can be a tremendous burden. It can undermine the entire intention of dying with dignity.”

Dr. Reggler says that if Canada follows the model of physician-assisted dying adopted in the Netherlands, where 85 per cent of procedures are conducted by the patient’s own family doctor, more such deaths will occur in rural areas. “It’s not an overly complicated process [and] can easily be brought into the training of a GP. It can be done at any facility where patients can stay overnight—an acute care centre, a hospice, a residential care centre.”

He predicts a problem if Covenant Health’s nine rural Alberta hospitals continue to refuse medical assistance in dying, because they’re often a patient’s only choice. But even Edmonton presents a challenge. There, Covenant is responsible for 71 of the available palliative and hospice beds—or 90 per cent of the regionally available spots.

The case of Ian Shearer, an 84-year-old Calgary man living in Vancouver with palliative heart and kidney disease and severe chronic pain, brought attention to how transfers can do harm. Shearer was denied a request for medical assistance in dying from St. Paul’s Hospital, a Catholic facility near where he lived and where he’d been admitted for care. On the day he chose to die, his ambulance was delayed three hours and his medications were withheld to allow him to confirm consent. The ordeal, last August, was described by his daughter as “unnecessary… excruciating suffering.”

To understand Covenant Health is to consider much more than its perspective on medical assistance in dying. Advocates suggest Catholic healthcare has a special “ethos” of compassionate care, emphasizing those who are neglected, that is worth preserving. Outside of the morning-after pill, only a few practical inconveniences are created by Covenant when it comes to women’s health. Early-term abortions are not regularly provided in any Edmonton hospital. And although elective tubal ligation isn’t typically provided at Covenant, it will be if a woman seeks it and is having a C-section delivery anyway—thus avoiding a second surgery.

“It’s just like working at any other hospital,” says a colleague of mine who works in the Misericordia ER. “The only difference was I had to fill out a different form for getting hospital privileges.”

But if the benign effect is an argument for maintaining Catholic-administered healthcare, it’s an even more powerful argument for ending the extra administration. If the care is essentially no different, Covenant Health merely represents an added layer of senior management in a system already top-heavy with administration. With Alberta spending the second-highest amount per capita among the provinces on healthcare, streamlining bureaucracy can’t be overlooked.

Dr. David Swann, leader of the Alberta Liberals, calls the senior management of Covenant Health “redundant.” Rather, he suggests, “more primary healthcare out in the community is what’s needed. Not higher salaries for unnecessary leadership in Covenant Health.”

Covenant CEO Dumelie dismisses these criticisms. “People like to focus on the smallest of pieces but it depends on the overall context. We perform well in terms of accreditation and are good value for money.”

But it’s difficult to square how Dumelie’s 2015 salary of $560,000 can be justified when AHS CEO Dr. Verna Yiu earned about $575,000 in the same year to oversee a budget nearly 20 times bigger. Nor is it clear how critical each of the 12 members of Covenant’s senior leadership team are when their job descriptions match similar positions in AHS.

As for the claim of compassionate care disproportionately directed towards society’s most vulnerable, there are certainly signs of this. Alberta has a rapidly aging population and disappearing patient-centred care. Covenant Health fills many of the gaps, from its geriatric mental health program in northern Alberta to its new long-term beds and palliative care.

Meanwhile many of Canada’s most progressive healthcare programs have emerged from Catholic facilities. St. Michael’s Hospital in Toronto and St. Paul’s Hospital in Vancouver are known internationally for the work they do on injection drug use, HIV and the urban poor.

Bud James, mayor of Killam, is a 50-something small-business owner born and raised in his prairie hometown. He’s adamant that Covenant Health has a unique ethos that leads to high-quality care, crediting Covenant with, for example, a recent extraordinary effort to keep an elderly couple together in assisted living. And James says his attachment to Covenant is premised on general, not religious, terms. He believes that in contrast to AHS, Covenant considers “holistic care” and “understands the unique needs of a rural health facility.”

But Steven Lewis, a Saskatchewan health policy expert, has a more dispassionate view of the alleged superiority of Catholic-administered care. “We hear this all the time—that there’s a different vibe at Catholic facilities,” he says. “Yet no one to my knowledge has ever demonstrated that with research. But let’s say it’s true—good, then we should all learn from it. It is good for elderly couples to stay together regardless.

“But the argument that [such care] can’t possibly take place in a secular system is ridiculous. We have examples all over the world of great care provided in non-religious facilities. The argument that it’s necessary in even a small way to impose a particular religious view of healthcare in order to make this happen has no defence.”

Alberta is not a particularly Catholic province—Statistics Canada reports that 23 per cent of Albertans are adherents to the faith, the second-lowest rate in the country and well below the national average of 44 per cent. But religious pockets—a number of French-Catholic communities, and Edmonton’s sizeable Ukrainian Catholic community—create important local constituencies.

The appointment of former Premier Stelmach—himself a Ukrainian Catholic—in 2016 as chairman of the board of Covenant, which was created during his tenure, undoubtedly brings a level of political heft.

There may be other benefits for Covenant Health aside from maintaining the privileged role of the Catholic Church. Given Covenant’s separate budget from AHS, any cutbacks to its facilities will be more transparent—and likely more scrutinized. This gives local administrators an incentive to maintain the special attention they receive in being outside AHS.

The clearest reason for Covenant’s continued role, however, is the absence of any challenge to it. The potential backlash is presumably too fierce for the government to make an issue of the arrangement.

But the time has come, says Lewis. “If we were to redesign the healthcare system today, we wouldn’t allow Catholic administration to continue… When Canada consisted of two religious groups, Catholic and Protestant, it was a simpler world. We now have a much cleaner separation of church and state… It’s the political norm that state institutions be even-handed about religions.

“Frankly it’s reprehensible that government doesn’t go to the wall on this. They say [to patients], ‘Well you can go somewhere else.’ Well, sorry, then you’re accepting the imposition of a religious view on people who have no choice.… It takes principle to raise [this issue] and stand up, and governments are basically cowards.”

So far, the province has settled for a workaround when it comes to medical assistance in dying. It’s time to change course. Alberta should have a transparent and comprehensive review of why in 2017 nearly $1-billion in healthcare funding is under the administration of the Catholic Church. And an answer of “because it’s always been that way” isn’t good enough.

Ryan Hoskins is a GP and emergency room physician based in BC who regularly locums in rural Alberta.

____________________________________________

Support independent local media. Please click to subscribe.

The post Holy Healthcare appeared first on Alberta Views.

When I can’t find something in my mind that I know is there, I often get an anguished “tip-of-the-tongue” feeling. I say pathetic things like, “Wait, wait. I’ll have it in a second.” I once asked a psychologist how many of his middle-aged clients were worried about their memories. “About 100 per cent,” he replied.

It turns out “tip-of-the-tongue” is a concept in psychology with its own acronym (TOT) and its own French phrase: presque vu. There is an argument over whether it is caused by knowing the answer but not having the power to recollect it, or having some knowledge of the answer and groping in search of it. But why the associated anguish Experiments have shown that the emotional side of TOT is enhanced if the question has emotional content: that is, what was the song you and your sweetie used to dance to in 1971, as opposed to what is the capital of New Brunswick.

About memory, Aristotle said: “In those who are very young or very old, or too quick or too slow, or strongly moved by passion, an impression is less readily formed because the condition of their receiving organs is not optimal.” Next time your failure to recollect is noted, remember to say, “The condition of my receiving organs was not optimal.”

Memory begins when our minds grasp from the air a name, face or place, and begin the process of putting it into storage in our brains. The first grasp is called “short-term memory” and its contents rapidly erode. The duration may be as brief as 30 seconds, based on experiments with brain-impaired people who have no long-term memory. The number of things that can be held in short-term memory at once is a measly four or five—not much when you consider that a seven-year-old chimp named Ayuma can remember a 19-digit number flash and, what’s more, can reproduce it.

The thing that converts memory’s brief holdings into long-term memory has been called “rehearsal.” If you keep thinking the idea or perception, it is more likely to transform into a stable memory. The complete model goes something like: stimulus; rehearsal; track laid down; memory. Our memories are brain cell circuits. When a memory is cued, its neuron chain “fires,” including the secretion of fluid across the synaptic gap.

Scientists in the crowd will be thinking: That model is outmoded. It is, and I wish it weren’t, because it was so easy to picture. It also explained things such as the indelibility of shocking and pleasurable memories. Because we thought these things over and over, their patterns burned into our brains.

Boomers are attacking the mind problem exactly as they battle with muscle and bone loss…they want to exercise the brain.

Aristotle noted that memory and recollection were two different functions. Having remembered does not always mean you can retrieve (hence: TOT). Also, the fact that you remember doesn’t guarantee the thing happened. One clever experiment took a group and showed them a video of a car accident. Afterwards, the researchers interviewed some of the individuals and asked them how fast the cars were going “when they smashed.” The remainder of the group was asked how fast the cars were going “when they hit.” The “smashed” group remembered the cars as going much faster than the “hit” group. This and other experiments suggest that memory is constructed, not recorded.

Some of the concepts in the “tracks laid down” model are still intact, but studies of brain physiology and function have added scores of refinements. Many newer findings have to do with synapses, the gaps between the axon of one neuron and the dendrite of another (their heads and tails), and the equipment on the sending and receiving ends. Nerve cells can have many synaptic attachments on a single neuron. These can be in many states: active, silent, recently silent, potentiated or depressed. Chemicals involved in the transmission from one neuron to another play a role in changing the states, so neurons “wire together” or not.

The biggest single evolution in thought about the adult brain is that we’ve gone from conceiving of it as static (incapable of growth or development) to plastic (capable of change). One of the first depressing things I ever learned was that my brain had millions of cells but they were steadily dying. Once I was an adult, I could create no more of them. Meanwhile most anything could kill a brain cell. A study of the brain-killing power of LSD in the 1970s proved that LSD did kill brain cells but only at the rate that coffee did. “Hold the phone! Coffee kills brain cells!” said I, who drank half a dozen cups a day.

To figure out if the brain was changing, we had to know it in some detail. A major event along that path was when Dr. Wilder Penfield did his experiments on epilepsy patients at McGill in the 1930s. His goal was to find out if brain cells associated with epileptic seizures could be identified and destroyed, and if this would cure the seizures. He removed a section of skull, exposed the brain and searched for causal brain cells by stimulating the exposed cortex with electricity, while the subject was awake. To his surprise the electric stimulation caused limbs to react and specific memories to be sparked. “I smell burnt toast,” says the patient in Penfield’s Heritage Minute.

The studies that followed “mapped the brain,” showing which parts corresponded to which limbs and functions. These findings were revolutionary, but, combined with the static-brain concept, they produced a cortical map that was also static.

Michael Merzenich and other scientists did experiments on animals from the 1970s to the present in which they were able to prove that the brain is not static. It physically changes when challenged by injury or overstimulation. Study of animals before and after the loss of a digit showed that their brains rewired to adjust to the loss. Training animals to do tasks with repetitive stimulations caused increased activity and connectivity in the brain areas governing the task.

Even adult human brains can change. This is what enables people to recover capacities lost after they’ve had a stroke; their brains reorganize and create new circuitries that compensate for damage. The current belief is that the brain has five systems for memory, not just one as was previously thought.

But the Alamo of brain plasticity was whether or not adult brains could make new cells. Even after “neurogenesis” had been proven in rodent brains, there was no proof of it in human brains. A 1998 study involving injection of a substance that was taken up into the DNA suggested that new cells were being made in the brain’s hippocampus. A more recent study at a Swedish institute was able to replicate the results even more convincingly. Using Carbon 14 in the brains of people affected by US nuclear tests in the 1950s, Spalding et al. were able to age the cells in human hippocampi and found that their ages differed. It proved that the hippocampi were indeed making brain cells, at a rate of about 700 a day.

The hippocampus may be memory’s holy grail. Tucked deep into the brain and not very large, it looks like a sea horse, which accounts for the name (in Greek, hippos means horse and kampos means coiled). Accumulation of research data involving people with amnesia yielded belief that the making of new memories occurs in the brain’s two hippocampi. The fact that their cells regenerate is excellent news.

Now back to the question of how the state of knowledge about the brain and memory is affecting the baby boomer generation’s adjustment to memory loss. What we want to know most is if the effects of our aging on memory are inevitable and irreversible. Or is there something we can do to slow the decline, stop it or even turn it around To say our search for answers is feverish is to understate.

Baby boomers may legitimately differ from other generations when it comes to aging. First, we are aging in a world of unprecedented scientific knowledge and technological know-how. Second, we have been told we will live longer than previous generations. A widespread response has been to try and be the healthiest, fittest generation of aging people ever. We pursue fitness in myriad ways: biking, hiking, gym workouts; perhaps a personal trainer. We play many sports (not only golf) rather than going straight to the bridge table and cribbage board.

Our attention to diet is legendary and the stuff of jokes. Check out the sales of the book Wheat Belly. As science makes and remakes up its mind about the effects of coffee, gluten, eggs, milk, we stay fit running from one side of the grocery store to the other. Then there are the vitamins, herbs and pharmaceuticals. Most everything promoted as good for the brain has been proven insignificant or even detrimental, but most of us still have our little battery of substances we believe in.

Only the most boosterish believe they can out-hike the grim reaper, but the rest of us have some sense of improving our odds for a long life. But the body part we feel most helpless about is definitely our brains. Chances are, everyone knows someone who has been struck down by Alzheimer’s. Now that science has demonstrated the genetic basis of the disease, occurrences in our family history produce an aura of doom.

As a group, we are frantic to find some mental crutch that will give us the kind of confidence in our minds that sport and moderation give our neck-down bodies. That confidence is hard won when we are so frequently told that “age-related memory impairment” is a fact of life or that we have “age-appropriate brain size.”

So, let’s get to what everyone really wants to know: Can the performance of the aging brain be improved If our brains know how to rewire in response to injury, could they not learn to rewire to compensate for dying memory storage cells The neurogenesis of the hippocampus makes us wonder if other brain cells could not also be taught to do the trick. Maybe, like the salamander does with legs, we could grow a whole new brain before the old one packs it in.

The boomer generation is attacking the mind problem exactly the same way they battle with muscle and bone loss. In particular they want to exercise the brain, and this has spawned a great many Internet products that offer to improve your mind—supported by peer-reviewed proof of incredible gains. Whereas our parents did crossword puzzles and endeavoured to keep their brains active and involved, we are entering our brains in marathons.

It might surprise some of you how long the world has been attempting this. The ancient Greeks were at work on a regime of principles and methods to push the brain beyond average performance before the birth of Christ. Art of Memory it was called, and its genesis story featured Greek poet Simonides of Ceos attending a wedding banquet. He left the hall for a moment and the building fell, crushing all the celebrants to death. Simonides was able to create a mental image of where every single person had been sitting, so the bodies could be identified.

This stimulated the idea that geometric and lushly visual images might allow humans to remember far more than they normally would. The images often contained cat’s-cradle interplay of points and lines, numbered and lettered; and the greater goal was the ability to contain all human knowledge in one’s mind.

This concept stuck around for 1,500 years and only died out because it was subsumed into the 17th century pursuit of logic and scientific method.

The test-based mind improvement regimes that are now for sale on the Internet are reminiscent of Art of Memory. The US ones tend to be cartoon- and game-based. The British ones are more print-based and sedate. They have in common advertising, cost and promises. Not surprisingly, they have been the target of much questioning and testing from the academic community. Do they work or are they simply duping aging rubes?

I enrolled in one of these programs and it was thrilling. In just four days, I became 25 per cent smarter. I slowed down after that but was 50 per cent smarter come the end of my introductory month.

Okay, it’s a laughable notion, and lately, major magazines have been lining up to satirize the brain-game fad. Many studies agree on one damning fact: The brain training improves the subject’s ability to play the games but causes no lasting improvement in brain functions such as memory.

This news may not even slow down sales given how badly we want something in which to invest our hope. A good day of training gives you a boost. The games are also highly addictive. Which reminds me: It’s time to give up Word Barrel.

People who seek to improve their brains by exercising them might be better off exercising their bodies, neck down, instead.

But before you throw out brain games, they can tell you a few things about your brain. In the first days of “training,” you find out what you’re good at and lousy at. It comes as a shock to be told you’re in the 23rd percentile of your age group for mind speed. My point is that I don’t think these tests lie, and they may tell us what skills we’ve become reliant on, and which ones we’ve ditched. One of the oddities of education is that it stops for most of us at a young age. Some never read a book again. Many more never use algebra to solve a problem. What the games showed me was which mental abilities I’d given up using and which ones I relied on for everything. An important discovery. If we narrow down to the same couple of skills for all problems, we’re greasing the wheels of our decline.

Now for the good news. Scientific research has found something that really does work for the aging brain. In the 1990s, researchers at California’s Salk Institute found that mice given an exercise wheel produced more brain cells in a memory-related part of the brain than did a control group with no exercise wheel.

Very recently, at the University of British Columbia’s Brain Research Centre, a team tested older women’s memories before and after a period of weight-training and found that after the exercise the women scored better at associative memory—names of people and where you met them, for example. For their next study, they selected women between 70 and 80 years old, all of whom had mild memory impairment. The group was divided into three. One group did regular brisk walking; one did weight training; and the third group did only stretching. After six months, the women were tested again for verbal and spatial memory. Verbal memory includes remembering words. Spatial memory includes knowing where you put things. The two exercising groups improved their memories. The stretching group became more impaired. There was also an interesting difference between the exercising groups. Improvement on the spatial memory tests was about the same between them, but the brisk walkers had more improvement on the verbal test than the weight-trainers.

This experiment has striking similarities to tests on animal memory. Different kinds of exercise affected different kinds of memory in rats. The moral: Don’t stick to one machine when you work out. The powerful irony is that the people who sought to improve their brains by exercising them might have been better off exercising their bodies, neck down, instead.

Often, when thinking about this business of the aging mind, I have thanked goodness that I was born when I was. Older people have probably been groping for lost words and names since the dawn of time, but I was born into the generation with the “auxiliary mind”: the computer. What did it matter if my mind was shrinking as long as RAM and hard drives were growing But there is apparently a downside.

Some time ago, the Japanese began testing their avid computer-using young and found they were alarmingly poor at memorization. Tests of this kind have continued, and there does appear to be a problem with young people’s memories, problems that may be related to computer and smartphone use. The most obvious “explanation” lies in the use-it-or-lose-it realm—that if you rely on your computer’s hard drive, you are neglecting to train your own. But another testing direction shows that people choose not to remember if they know the material can be found. This is not new. If someone in a family is a hockey trivia buff, the other members tend not to try to remember anything. They ask the trivia person instead. So it goes with the computer. If test subjects are told to remember a group of things that will be erased as soon as they’ve read it, they remember better than if they believe the material is still there to be looked up. If told it is stored in a certain file, they are more likely to remember the file than the stored material. Of course, the problem about relying on computer-stored information is that your childhoods and family stories aren’t there. If you have forgotten how to remember, that sort of information will be lost.

There may also be a problem with “surfing.” I’m speculating here, but if processing of short-term memory must begin in under a minute, then continual switching seems designed to prevent conversion of sense-information into long-term memory. Interference prevents memory formation. A factor in memory decline for older people is that they have so much in their brains with which to interfere. We throw everything we know at each new fact, and this can prevent us from absorbing anything. For the young, listening to music through earbuds while messaging and surfing TV may be creating a storm of interference that prevents recall.

But since the middle-aged to the elderly are computer-using like mad to keep up with the times, we also could be sabotaging our future capacity to remember.

Lastly, let’s consider the importance of memory. It has been said by many that people in undeveloped countries often have amazing memories. Aboriginal Australians can paint the landscape of their childhood and never miss a watering hole. Aboriginal song lines, brought to international attention by Bruce Chatwin’s book of that name, are an auditory Art of Memory for essential facts of landscape, food and water, kinship and religion. In the early 1800s, John Tanner wrote of his life with the Ojibwa after being captured at age 10. Years after the fact, he could remember how many buffalo they killed and where. It is as if he forgot nothing.

The simplest conclusion is that we remember better when our lives depend on it. A water seep in the Australian outback as opposed to the name of the Wookie in Star Wars. Our memories may suck simply because we can stay alive without them.

Fred Stenson writes historical fiction and non-fiction relating to the Canadian West and is a long-time columnist for Alberta Views.

The post On Memory and Aging appeared first on Alberta Views.

I knew the girls had it all wrong. To begin with, I was supposed to be in at least a hospital gown and shoes. More seriously, I was supposed to be seated, not in my wheelchair but in a commode, a kind of elevated chair on wheels that fits over a toilet seat and has a convenient hole in the middle through which excrement and urine are designed to fall. They had at least gotten the shoes right. It was a safety policy for patients always to wear shoes on a linoleum floor.

I had known the hospital procedures for almost a week, and there was something infectious about the humour with which these nurses tried to get everything right but managed to get things mostly wrong. It was late at night, they were inundated with patients, I was a heavy-lift case and a commode case at that—the three of us couldn’t stop laughing. Finally, the two women got it right. They transferred me again with the heavy lift to the commode and covered my nakedness with a hospital gown and wheeled me to the toilet. The two nurses and I were giggling so hard I was afraid we’d wake up Homer, my roommate. One of them summed it all up: “What happens in Las Vegas stays in Las Vegas.”

I suffered an aortic dissection at my home on Good Friday, April 6, 2012. I had known something was wrong; I called Roberta Stavely, my Pilates partner, and Jan Carew, another good friend, and left messages on their answering machines. I told each I thought I was having either a heart attack or a panic attack and asked them to call me. I had been a widower for six years and lived alone, though my family doctor and good friend Dr. Liliane Bartha had recently moved in as my temporary houseguest. She found me late that night lying on the sofa in the living room, looking green. She immediately called 911. The ambulance came, but I insisted on retrieving my wallet and climbed the 11 stairs back to my bedroom. The EMTs protested that a man who could climb 11 stairs clearly wasn’t having a heart attack. But Dr. Bartha insisted. She recounts that leaving the house I rolled my eyes and said, “More drama.”

I remember nothing of that evening. My memory even of the several weeks preceding it only slowly came back. I apparently made a further telephone call to Jan’s answering machine, also lost down the memory hole, from inside the ambulance.

I underwent a nine-hour operation at the Foothills, during which I suffered a stroke. An aortic dissection occurs when the aorta splits open of its own accord. Surgeons commonly call it the widowmaker. It is usually unsurvivable.

This patient survived. I was in the ICU and a step-down ICU for about a month. I recall hearing voices, including my brother’s and that of Linda Johnson, who had power of attorney, and I dreamt vividly. I dreamt I was sailing the seven seas, in various vessels and various periods—always in sick bay. But I had to wait until I’d recovered enough to be transferred to a regular hospital bed to realize that I had become blind. When I learned this, I attempted to get out of bed. I hadn’t planned on being paralyzed in my right arm and leg. This was the only time I ever fell out of bed to the floor.

I was transferred to the Fanning Centre on May 22, 2012, with Margaret (my then-future wife) accompanying me in the ambulance. The Fanning, not strictly a hospital, is one of Alberta’s only two stroke rehabilitation centres. Built 40 years ago, it now runs, as does all of Alberta’s health infrastructure, at full capacity. Once admitted to the Fanning, I was thoroughly assessed.

Disabilities (deficits): paralysis in the right leg and arm; blind in both eyes; speech heavily impaired. The first six months is a critical period in the recovery of motor function in stroke patients. There was no time to waste. I was quickly immersed in the routine of stroke rehabilitation. I called it “my summer of rehab.” I had a daily occupational-therapy session followed by a speech-therapy session followed by a physical-therapy session. Margaret accompanied me during most of these speech- and physical-therapy sessions. On Tuesdays and Thursdays I participated in group speech-therapy sessions, and in time the physical-therapy sessions were followed by daily strength-building sessions. The sheer number of therapies tended to fill the days. But the weekends were endless. And the Calgary summer meant that I had to suffer through no fewer than three long weekends.

In the dining room, patients were assigned to tables, and since we met for breakfast, lunch and dinner, this made for comradeship. I was fortunate in my companions. There was Bob, whose major problem after the stroke was keeping his balance; he had made progress and was looking forward to being discharged. He was a naturalist, and his erudition, and what’s more his gentlemanly manners, made him a favourite among the ladies. What most interested me was his closeness to the Calgarian Tibetan community. My late wife had been a Buddhist; I had spent seven months in Cambodia and had written a novel set there with Buddhism as one of its themes. Bob and I had several long after-dinner discussions about Buddhist philosophy. Another favourite was Elsie. She was a high-performing stroke victim despite her great age. She was 97. Born in Philadelphia during the First World War, she had moved with her parents to Toronto but retained her Philadelphia accent. Hearing her was like listening to an historical gramophone recording. Her voice had also retained a typical American volume. You could hear her clearly across the dining room. I remember her saying with hilarious clarity, “Home was never like this!”

And there was Homer, my roommate. He was at the Fanning for months before my arrival, and still had no departure date when I left. We shared the same room for four and a half months, but not a word ever passed between us. It couldn’t. The stroke had robbed Homer of the power of speech. I was blind and he was mute and we were both lame. But that didn’t stop us laughing. We both had bladder issues. At night I preferred to wear a male adult diaper, and to call a nurse to wheel me into the bathroom. Homer elected to use what the Fanning called a urinal bottle. Unfortunately his aim was often off, and he would, not infrequently, leave the bottle lying in bed, where it would fall over. We had a nurse, an immigrant from South Sudan, a little woman with a very high-pitched voice. After every trip with me to the bathroom, she would inspect Homer. “Homer,” she would cry, “You’re wet!” and then, upon further investigation, even higher pitched, “You’re drenched!” There was something about her voice that moved Homer to laughter, even in his predicament; he was Jamaican and had a deep voice (his laughter was the only voice he had left) and I was moved to join in their hilarity.

The nursing staff was in every sense the backbone of the operation. I was lucky. On my very first morning I drew a nurse named Christina. When she entered my cubicle I was sitting on the edge of the bed, and that so impressed her that she proceeded to show me a technique whereby holding her across her shoulders with my good arm, I could dispense with the heavy-lift machinery and get directly into my wheelchair. Thus, on the very first morning, Christina broke Fanning Centre policy but gave me what was more important: hope. I remember also a young male nurse, Damian, who was always cracking jokes, sometimes at my expense. He always made me laugh.

Rarely would a nurse irritate me or make me angry. Although it did happen. I recall one nurse, a tall Jamaican woman, Sonia, who showed disrespect to an older lady and my dining partner. My grudge lasted almost a whole evening, until she was helping me in the bathroom—she was on night shift—and asked me in her soft Jamaican voice, “Dearest John, what’s the matter?” I recognized the term of endearment as standard Jamaican diction, but it melted my heart.

Of course, recent stroke patients are notoriously emotional. Tears ran down my face as I recited to my speech therapist “Jabberwocky,” by Lewis Carroll, and “The Second Coming,” by Yeats, a poem I had used in one of my books. And I remember also the tears of laughter when a nurse, I believe from Nigeria, told me, “You are blessed.”

“Why?” I had to say.

An aortic dissection occurs when the vessel splits open on its own accord. Surgeons call it the widowmaker. It is usually unsurvivable.

“Because,” she said, “as you know, the Fanning Centre turns off the boilers for the hot water at night to save money. And when, as I occasionally must, I have to wash a gentleman’s privates with freezing cold water, they almost always swear at me. But you only laugh.”

I should add that Sonia and I formed a bond of another sort. We watched together, or rather I heard and she and Homer watched on his TV, the US Democratic National Convention. If Sonia had been American, she would have been a Democrat. It turned out that she was intensely interested in US politics. “So much more interesting than Canadian,” she said. I couldn’t help but agree.

Of course, not everything at the Fanning was perfect. The food, although nutritious and sustaining and edible, was on the whole tasteless. The ladies at the table and I would discuss whether a soup was tomato or yam or carrot. We rarely came to agreement.

Personal hygiene standards were stuck in the late 19th century. Staff and equipment shortages ensured that showers were limited to one per week, unless a hospital visit was scheduled for that week. Fanning Centre patients couldn’t be seen by other physicians to be unwashed, unbathed or smelly.

More seriously, the Fanning Centre had little pull or influence with local hospitals or doctors. I was told in May that I would have to wait until October to see an ophthalmologist. Fortunately, friends, as they often did, came to the rescue—in this case Cheryl Cohen, who knew an ophthalmologist personally. He made room for me in his schedule in less than a month. Another friend, a Ukrainian doctor who had worked in a rehab hospital in Kiev, performed functional electrical stimulation (FES) on my right arm and hand for up to two hours a day in her time off. The half-hour-a-day AHS-supplied occupational therapy sessions were simply not up to that. It took the occupational therapist 20 minutes to set up her FES apparatus, which was very old, leaving 10 minutes for actual therapy.

The more technically educated the staff, the more effective they were. The nursing staff, the pharmacy techs, the therapists—physical, occupational, speech, even recreational—were all exemplary. The social workers were less so. It took one social worker from May until October to complete my application for Assured Income for the Severely Handicapped (AISH), despite my very effective advocate offering him every assistance.

The continuing education of staff occasionally took a hilarious turn. On one occasion I was enlisted to help describe to two young female nurses the correct operation of urine-collection trays for male patients. I pointed out that the tray’s orientation was critical. If the tray were placed upside down, the man’s scrotum would interfere with and possibly even contaminate the urine sample. On the other hand, the correct positioning would allow the man’s scrotum to hang free.

Sex, at the Fanning Centre, was a forbidden topic. When I mentioned to my young occupational therapist that when I kissed my fiancée, my hand spontaneously opened (my paralyzed right hand was usually clenched), her only response was “too much information.” I had expected she would find this professionally interesting. In the same vein, I was asked by the young speech therapist in a group session to create a sentence using the word “regret.” I said, “I don’t have many regrets, but I do regret lost opportunities for sexual intercourse,” to the uproarious delight of the group’s men. She dismissed us with, “That ends today’s session!”

In the end I stayed in the Fanning Centre for four and a half months. I successfully graduated on October 5, 2012, and remarried on October 6. I had known Margaret for two years, and although my social worker sought to delay the union, I overruled him.

Sonia gave me some sage advice the night before I left. Sharon, my lead physical therapist, bade me farewell in the morning. And before I got up, Chelsea, an assistant physical therapist, decorated my wheelchair with pink ribbons, a sign saying “Just About Married” and a few empty tin cans. I was wheeled out trailing them behind.

What did I learn at the Fanning Centre I learned to dress myself, even though one-handed and blind. I learned to wash and take care of myself. I learned to walk with a cane and to take my first experimental steps walking unaided. I learned to live with my deficits—read disabilities. But most of all I learned compassion. Compassion for my fellow patients, but also for the staff who worked tirelessly day in and day out. In the words of Christina Rossetti, “To cheer one on the tedious way/ To fetch one if one goes astray/ To lift one if one totters down/ To strengthen whilst one stands.”

John Lathrop is a Calgary-based author. Now blind and one-handed, he uses a Dictaphone and Margaret, his wife, transcribes.

The post Awakened by Laughter appeared first on Alberta Views.

Looking back, what surprises me is my willingness to jump in and learn more about something most of us don’t really like to think about. I don’t like hospitals all that much, or doctors, or the questions they ask, or the tests they want to do on me. Like many men of my age, I prefer not to think about it… in this case, “it” being a loaded term referring to health, loss of health, onset of disease (probably a grisly one) and, finally, death. Ironically, at the same time, because I have reached a certain age, I can easily convince myself that every little pain I feel, every sore throat I wake up with, is the beginning of the end.

Death actually presented itself to me at an early age—11 to be precise—when my older brother died in a car accident. The loss was immense and has no doubt informed much of my character as I have grown older. Obviously, the longer we live, the more family and friends we lose along the way. And yet I suppose that because I was exposed to death at such an early age, it doesn’t scare me and I have become quite dispassionate about the matter.

Over the years, I have written about death extensively in my dramatic work; at least five of my plays deal directly with the topic, and one of them is even titled A Guide to Mourning. Artists are always looking for new fields to explore, and the field of death—because of its universality and mystery held together in one event—is a particularly rich field to stick our shovels into.

And so, on a cold morning a few weeks into the new year I got myself over to the Foothills and made my way up to the fourth floor of the Tom Baker Cancer Centre. My friend met me and I was soon in a room with members of the palliative care team, which was much larger and more comprehensive than I would have imagined, including, among others, physicians, residents, nurses, pharmacists, therapists, social workers and spiritual counsellors.

What I hadn’t realized was just how welcome I would be—not just as a new friend of one of the lead doctors on the unit, but as a writer with a reputation for exploring difficult issues, often ones people simply don’t want to talk about. In this case, the big one, I suppose. Not just death in general, but specifically: What does the process of dying look like in our culture these days What might we be in for as we near the end of our journey At this point, I might as well step out of my narrative to remind readers that we do, in fact, die. It’s the only thing we know for sure about our journey—that it’s going to end.

I think as a culture we do an admirable job of staying in denial of this eventuality. I was talking to a man the other day who was speculating on his own demise, which he put some 50 years in the future. He was in his 50s. I suppose as long as we can put an event at least five decades from now, we clearly don’t have to deal with it. As it was, I didn’t have the heart to tell him that he was, by any meaningful calculation, well beyond middle age. Who am I to burst his bubble

A variation of this, which I indulge in almost daily, is to read the obituaries in the paper, checking out the birthdates of the dearly departed, comparing them to my own. Most days I successfully perpetuate my delusion of immortality, confirming that only people older than myself are dying and that I am certainly too young to die. But of course the older we get, the more likely we will read about people our age or even younger (or even very much younger) passing away. In the face of such evidence, we might do well to consider and come to grips with the implications.

To put this all in perspective: The average age of the patients in this particular palliative care unit is 51 years old. I find that rather sobering, if not chilling. We reach a certain point when the experience and expected outcome of hospital visits change. When you’re younger, you expect to get better and get out. When you find yourself in the hospital and are told you’re not going to get better, and face the reality of your imminent demise, then a hospital visit is a much different thing. And it’s easier and comforting to think this only happens to older people; not so easy or comforting to get your head around the number 51.

If we are collectively in denial of the reality of death in the abstract, it can only be worse when it comes to considering the specifics. And so, for a writer to walk into a room full of professionals who work in this area day in, day out, was thought to be a wonderful thing, a great step forward in public relations, as it were. You have to understand that when these people tell others what they do for a living, it can be a bit of a conversation ender.

My reputation was a double-edged sword, however. As much as the staff welcomed my help to bring their work out into the open, when it came to visiting patients—well, not everyone wants a writer hanging around witnessing what is, after all, a very private event.

As I sat among the staff that first morning, on the one hand I knew nothing about palliative care and on the other hand I realized I’m a bit of an expert. Listening to them talking about their work I was flooded with a remembrance of an event that had happened some 17 years earlier: the death of my father in the palliative care ward at the Pasqua Hospital in Regina. I shared that experience with them, for I think at its heart it has to do with the essence of palliation, which means dying in as good a way as possible. It is a story of someone who lived a good life and then, at the end, did a very good job of dying.

“Your own death, it comes as a surprise. No matter how much time you have to get used to the idea.”

We had our usual Sunday evening phone call. I was in Calgary, and my dad and mom were back in Regina. On this particular evening, my dad complained about a sore arm, telling me he had arranged to go for a massage the next day. A few days later, my brother called to tell me the masseuse had not liked something about my dad’s sore arm and had suggested he see a doctor. He had done so, and was subsequently admitted to the hospital for tests. On Thursday my brother called to say things weren’t looking all that good as the result of these tests. On Friday he called and his message was unequivocal: Get here, now.

I got there, driving through a prairie snowstorm to do so. My dad held on until I arrived, and then, son of an Englishman that he was, shook my hand and promptly slipped into a coma. A few days later, I sat in his room with him in the palliative care ward. I had no idea if he had any awareness of what was going on around him, so I read him the hockey stories from the night before. I was holding his hand, the first and last time that ever happened. As I was doing so, he let out one last rattling breath and then he was gone. In death as in so many aspects of life, my dad was efficient and orderly.

The people from the ward came in just at that moment. When they found out I was alright, they did a few things with my dad, removing equipment, arranging him, as it were, the way I thought we should leave him until my mother had a chance to spend some final moments with him. I suggested staff meet her in the hallway before she got to the room, to let her know what had happened. All of this took place with great reassurance and professionalism, and I would have to say that as far as possible, the staff made a potentially terrible situation really as good as it could possibly have been.

So, looking around that room in Calgary all those years later, I had a good sense of what palliative care workers do, what they are all about. They make dying as good an experience as they possibly can, for all involved. I know that isn’t a very technical explanation, but I don’t think anyone on the unit would dispute its veracity.

You might die on a lonely stretch of highway some night when you hit black ice. You might have a very sudden and very fatal heart attack while riding your bike along the river. Or you might be lucky enough to have the dream death ahead of you, the one I hope is in store for me: you may have a beautiful day doing all of your favourite things and go to bed with a big smile on your face and simply not wake up. It happens, I guess, but only to a few.

But should you be diagnosed with a disease (most likely cancer), which is all the more common these days, and should that disease prove fatal, with no hope of a cure whatsoever, then you will be left in a situation where the rest of your life will be spent dealing with the process of dying. If you have complications, you might find yourself in palliative care with a team to help with any or all of these.

What might those complications be Pain, too much of it to deal with, and so you might be there on account of pain management. You may have psychological difficulty—after all, death is an enormous thing to get your head around. Even in these times of vague spirituality, we still contemplate what lies beyond death, not just the patient but the family as well. Legal or financial or family issues can complicate matters. In any of these cases, a staff person on the unit can help look after things.

As we all know, given Alberta’s ongoing crisis with healthcare funding, long hospital stays are not encouraged, and the best outcome as far as the people who work on the unit are concerned is that once your complications have been dealt with, you go to a hospice or return home, and with the support of community professionals and family get on with the matter at hand, which is to say dying. To put this into perspective, the unit has 29 beds. In 2009 about 250 patients were admitted and the average stay was 12 days. One in every four patients died on the unit.

On the day of my first visit, one of the doctors invited me to spend some time with him, to get a sense of a day in the life. This doctor is a specialist in pain management. He is also a father and a slightly off-centre jazz musician. All in all, I would say that the hospital, and the people who work there, seem much more human and even fun than in the old days. Obviously, the staff take their work very seriously, but the mood on the unit is anything but grim.

This doctor was on his way to consult with a patient in another ward and so we walked through the labyrinth of construction at the Foothills, even getting lost a few times along the way. We eventually found his patient, who had come in with one issue but been found to have something else, much more serious. A complication. The doctor spent a very long time talking to this patient so he could design an effective pain management program.

“The only pain we can’t do anything about it the pain of someone who realizes that they haven’t really lived.”

On our way back to the unit, the doctor explained to me that many different pain medications can be used to alleviate suffering and help keep the patient as comfortable as possible. But then he added, “There’s only one kind of pain we can’t do anything about… and that’s the pain of someone who ends up on our unit with no chance of recovery, and who realizes they haven’t really lived their life… that’s a pain that no one can take away from them.”

Carpe diem, indeed.

For the last few months, I’ve been spending time on the unit a little, getting to know some of the staff, and when possible visiting with the patients. I plan on doing this on an ongoing basis. I may have thought there was a book of poems or even a play in this experience, but now I’m not so sure. I’d like to think my motivation for these visits is more altruistic. If we see our lives in terms of narrative, it would be very sad indeed not to share that with someone. If I can be an audience for someone’s story, then I feel my time and energy are being well spent.

I was visiting a patient last week, and knowing it would be my last visit before I wrote this piece, I asked if he would like me to share anything. He’s a lovely man, and I know it may sound cliché, but I find visiting him a very humbling experience. He has such courage and even humour in the face of what is obviously a serious situation.

“It comes as a surprise,” he said. “Your own death, it comes as a surprise. No matter how much time you have to get used to the idea, it still comes as a surprise.” He talked about how the instinct to survive must surely be embedded in our DNA, and that the knowledge of our imminent death goes contrary to that instinct. In his mind, no matter how well you understand the situation intellectually, no matter how clearly your doctors lay it out for you, it always comes as a surprise.

Maybe that in part explains our denial of death and our tendency not to think about it. But when the time does come, as it will for us all, I take some comfort in knowing there are intelligent and compassionate people who will make the last part of our journey as pleasant as humanly possible.

Eugene Stickland was Alberta Theatre Projects’ playwright in residence for 10 years and a Calgary Herald arts columnist for five.

____________________________________________

Support independent local media. Please click to subscribe.

The post What Happens at the End appeared first on Alberta Views.

In theory, Alberta’s home care system makes good sense. Individuals who need support are assessed by an Alberta Health Services (AHS) case manager, who develops a plan allotting time for such services as bathing, dressing, toileting, giving medication, ventilator upkeep and palliative care. The work is contracted out to providers, who hire frontline workers (health care aides, in provincial parlance) to deliver the care under the supervision of nurses—with support from occupational therapists, nutritionists and other specialists as needed.

In practice, the system is being chipped away at the very time when an expanding number of seniors need care. Housekeeping help, which Pidgeon’s mom had received in earlier years while recovering from a back injury, was not included in her care plan after the stroke. The time allotted in her care plan shrank from 26 hours a week to as little as eight, even as her needs escalated. The care also shifted from non-profit to for-profit providers, including the Toronto-based CBI Health, which took over all contracts in Oss’s area of Calgary during a regional move to zone-based care. A revolving parade of health care aides began coming to the door, many lacking training in key tasks—and each unfamiliar with Oss and her needs. With minimal pay and no benefits, some aides worked multiple jobs to make ends meet, and arrived at Oss’s house late or overtired and distracted, resulting in accidents. Pidgeon’s calls to the agency led to long periods on hold while listening to advertisements for fee-based services, only to have concerns dismissed as isolated rather than systemic issues. “It was a profit-first, care-second business model,” Pidgeon says.

Desperate for relief, Pidgeon occasionally booked a bed for her mom in a nearby nursing home under a caregiver respite program that has also lost funding over the years. But her mom returned depressed and diminished. Clearly, home was best, but Pidgeon was bearing the brunt. “By last year, I thought I might die before mom of a stroke or heart attack,” she says. “And you know what It seemed like a good idea.”

Pidgeon’s story is far from unique. Every sixth senior receives home care, according to the Canadian Home Care Association; 98 per cent have an informal, unpaid caregiver, most often a family member. Across Canada, five million family caregivers provide as much as 75 per cent of their loved ones’ care, a service worth $25-billion a year. But many (especially those looking after high-needs seniors) are at a breaking point, says a 2012 Health Council of Canada report tellingly titled Seniors in Need, Caregivers in Distress.

Family caregivers and the home care workers who support them are foundational to our entire healthcare system. Together, they enable people to live longer in their own homes (where most want to be) at less than half the cost of nursing-home care and a twentieth the cost of being in hospital, according to Dr. Samir Sinha, who leads Ontario’s Seniors Strategy. Yet Alberta caregivers and care workers alike relate tales of shrinking care plans, disrupted relationships and a disjointed system that discourages input even though complaint seems the only way to effect change. “If the government continues to download eldercare to families without providing suitable support, the system will fail,” Pidgeon predicts. “Hospitals will end up with many more beds filled with elderly disabled, plus families will be thrust into crisis situations they have no way of handling.”

The Alberta government’s own Continuing Care Strategy, in effect since 2008, calls for “enhanced and expanded home-support services,” including increased daily care hours and more respite for informal caregivers. Its guiding health document, Vision 2020, “puts patients at the centre” and commits to “providing the right service, in the right place, and at the right time.” But actions speak louder than words. With the number of nursing home (or long-term care) beds stalled at 14,554 (despite Conservative election promises to add 1,000 beds), a recent Health Quality Council of Alberta (HQCA) study found 7 per cent of hospital beds were being taken up by seniors waiting for appropriate places to live. “The government promised all sorts of things so you don’t have to move into a long-term care facility,” says Sandra Lyons, executive director of the University of Alberta’s Institute for Continuing Care Education and Research, who also coordinates care for her mother. “So they stopped building long-term care facilities, but they didn’t put the money into the community supports that are necessary in order to age in place.”

To be fair, Alberta’s home care budget has been inching upward. Last year’s $496-million budget is up 9.5 per cent from the previous year, and expenditures were $507-million according to the AHS annual report. But the home care client list is expanding apace, from 97,326 in 2011, when the first baby boomers crossed the 65-year line, to 108,855. What’s more, Alberta trails other provinces in its percentage of health dollars invested in home care, at just 2.4 per cent compared to 4.1 per cent across Canada and 6.4 per cent in New Brunswick. By 2031, when the last baby boomers turn 65, Alberta will be home to 923,000 seniors, twice as many as today. Unless the budget trajectory shifts, need will far outstrip home care capacity.

Alberta stopped building nursing homes, but hasn’t put enough resources into the home care system.

The care needed by the typical client is rising as the senior population ages—and as acute care patients are discharged earlier from hospital. Pilot projects in Alberta and elsewhere have seen those clients doing well at home, but only with consistent and adequate support. All too often they’re left waiting for essential therapy, equipment and care, says Sandra Azocar, who hears many such stories as executive director of Friends of Medicare. “If people cannot go home because they can’t receive the service they require, core issues such as wait times are not going to be addressed.”

Publicly funded home care has also become increasingly focused on core medical needs, despite growing evidence that housecleaning, transportation, companionship, caregiver respite and other “soft services” are crucial to keeping seniors at home. Those services may be available in the marketplace, but at a cost many seniors cannot afford, says Elaine Roberts, who led house meetings about seniors’ needs for the Greater Edmonton Alliance. “Seniors are saying we’re not looking for a handout, but there has to be more attention to ability to pay.”

Liberal health critic Dr. David Swann echoes that view. He and his wife needed extra help while looking after his mother in their home for six years, even though both are medical doctors. “We were able to pay for a caregiver to come in, but many are not, and that’s where the rubber hits the road,” he says. “Families are financially and emotionally and physically exhausted because they’re trying to fill that gap. Are we a society that’s going to ensure that we care for our most vulnerable elderly, who created this province Or are we simply going to abandon them to chance—and to private, for-profit providers?”

Critics say Alberta Health Services is doing exactly that. In a surprise move that threw thousands of home care providers and clients into panic, this summer AHS contracted the lion’s share of home care in its Edmonton and Calgary zones to a handful of large private corporations, some headquartered in Ontario, displacing dozens of smaller providers with local roots. Bidders were sworn to secrecy throughout the process, which happened without consultation and was fundamentally flawed, says Bruce West, who spent decades behind related government desks before becoming executive director of the Alberta Continuing Care Association. “The government went to the team that contracts for hospital beds and linen services and used that same procurement mentality as if these were widgets rather than direct care to people in communities.”

Edmonton was particularly hard hit by a shift to zone-based delivery—the same shift that occurred in Calgary while Pidgeon was looking after her mom. That shift gave each winning agency a monopoly in its area, raising questions about the province’s stated commitment to patient choice. What’s more, some of the providers shunted aside have an admirable record of embedding home care within a larger package of holistic support. Those include Strathcona County and the City of Leduc, which used local funds to subsidize services such as housekeeping and caregiver respite—and to pay home care workers significantly more than the provincial dollars allocated. “AHS has said its direction is more community-based,” West says. “Yet here we have municipal entities removed from providing care to their own citizens.”

In response to concerted outcry, three Edmonton co-ops providing home care to their own disabled residents got their contracts back. “We should have paid more attention to the needs of some individual Albertans,” AHS president Chris Eagle said in announcing the reversal. As NDP health critic David Eggen puts it, “The Eagle was forced to eat some crow.” Still besieged by protests, Health Minister Fred Horne instructed newly appointed health administrator Janet Davidson to review the contract process. In mid-July, 10 “congregate living providers” and three others with “unique population needs” were invited to renew their contracts. Examples include Lifestyle Options, a retirement community whose around-the-clock staff provides a mix of home care and more intensive care under contract with AHS, and Edmonton’s Operation Friendship, whose inner city lodges serve seniors with addictions and mental-health concerns.

Throughout the summer, thousands of other clients were “transitioned” to new providers, often losing trusted care aides. From day one, clients were calling with horror stories, says Sue Dittrich, who has provided care for 14 years with Strathcona County Family Services. The calls echoed Pidgeon’s experience: Missed appointments. Untrained workers. Rushed care. Errors. “When everybody works together, people can get a tremendous amount of help,” says Dittrich. “But when a link breaks, that’s when people fall through the cracks.”

The consolidated home care contracts continue a shift that puts the majority of Alberta’s home care delivery into a few corporate hands. AHS predicts the move will save $18-million. The NDP’s Eggen stands among those who say any savings will come on the backs of frontline workers and the families they serve. “The public health system was set up because we knew that if we looked after each other in the most equitable way possible and pooled money to do that, no one would get left behind,” he says. “I see this latest chapter as nothing less than breaking that sacred trust.” By contrast, West, whose association includes for-profit providers, calls concern about corporate ownership a “red herring that allows us to ignore the fact that none of these organizations are adequately funded in relation to what is expected.” Exceptional private providers do exist, but studies by both the HQCA and the Parkland Institute indicate that, on average, care tends to be inferior in for-profit settings, largely due to fewer and less-qualified staff.

Contract details have not been made public, another reason to avoid using private suppliers for a fundamental public good. But there will be less government money. In the past year, the government cut the time allotted for workers to do typical tasks, and stopped paying travel time. Mileage payments, previously eliminated in cities, are now gone in rural zones. At a town hall meeting that attracted dozens of incensed home care workers, Sharon Smythe said she’s been earning $15 an hour and driving 60,000 km a year to serve clients south of Edmonton for We Care, one of Alberta’s largest private contractors. “Mileage is more than my paycheque,” she said. “Without it, it doesn’t pay to leave home.” The loss of mileage, coupled with reduced wages, is expected to heighten a chronic shortage of care workers in rural Alberta, forcing seniors and other vulnerable people to uproot.

Home care RNs and LPNs across the province are losing their jobs under a new AHS staffing model that puts more frontline work in the hands of health care aides. We Care worker Shannon Comeau believes it’s a calculated move: “We’re going to be the backbone of healthcare in a very short time, and they want to be sure they’re not paying the backbone very much.” West predicts that unintended consequences will include a shortage of workers and a push to unionize. “I can’t help but think AHS painted a very big ‘X’ on the backs of those that got contracts. Not only are salaries dropping, but there are now just a few agencies that need to be organized.”

Unlike RNs and LPNs, health care aides are not regulated, and their training consists of a six-month certificate program that not all employers require. “We put tiny toddlers into daycare and playschools with people who aren’t well educated for the job and pay them shitty wages, and then at the end of life we have these seniors who have worked their whole lives and raised their own families and we do the very same thing,” says a frontline worker with a for-profit firm who asked not to be identified. “Really and truly, we need to be better educated and regulated—and we need to be treated fairly. We’re dealing with vulnerable people in the late stages of life who deserve respect. We’ve got to do our absolute best to give them that.”

At the core, the government’s reluctance to meet escalating home care need reflects a silo mentality that fails to connect the budgetary dots between service cutbacks and costs elsewhere in the system, says Irene Martin, executive director of Alberta Senior Citizen Housing. Working with ill family and friends, she has seen how the miserly doling out of things as basic as beds, diapers and time results in bedsores, hospitalization and diminished humanity. Such environments make clients, staff and families angry, she adds, and that’s not good for anybody’s health, let alone healthcare budgets. “If we don’t integrate all these chopped-up little pieces, we’re never going to make it.”

Tina MacDonald discovered the value of integration while caring for her husband, Duncan, during his final five years of life. As health consultants, the MacDonalds knew how the system works—and who to call when it doesn’t. Yet they too bounced from silo to silo until Duncan was diagnosed with a neurological disorder and began attending Edmonton’s interdisciplinary ALS clinic. The entire team, home care included, met with the family, providing a place to troubleshoot challenges as Duncan’s mobility rapidly declined. “It gave home care a framework to fit within, and we didn’t have such a problem with things falling off the edges,” reflects Tina, who cared for Duncan along with her son, some home care support and a dizzying array of privately paid specialists.

Among international models of integrated home care, Denmark surfaces often. In stark contrast to Canada, Denmark invests equally in home and institutional care; as a result, it has closed thousands of hospital beds in recent decades without expanding long-term care. Citizens over 75 receive regular home visits that pay attention to such proactive measures as diet, exercise, fall prevention and social networks as well as home upkeep and caregiver needs. It’s an approach that matches Swann’s prescription for home care: “Moving upstream is what’s needed,” he says, “right to primary prevention.”

Today’s technology offers the potential to connect and inform teams in ways that weren’t possible in the past, Swann adds. Indeed, the Health Council of Canada calls technology the “missing link” that could integrate health care, for example by making electronic health records available at home and enabling doctors to make virtual house calls.

Compensating caregivers means investing money, as does paying aides a living wage and focusing on preventive health care.

I meet some family caregivers who have a self-managed care program under which AHS allots families money to hire and pay workers themselves rather than depending on outside providers. Anna Burrowes and her father, for example, have hired a live-in caregiver to look after her mom, who at age 62 is as dependent as a newborn due to a rare degenerative disease. While more complex than many families can manage (“It’s like owning your own business,” Burrowes says), this approach shows what can happen when family is at the centre rather than on the periphery of the team.

As the women describe their caregiving with frank, black humour, it’s clear they are devoting huge chunks of their lives to the task. Were they living in Australia, the UK or Sweden, they could expect to be paid for their time. Not here. Short-term employment insurance is available to citizens looking after dying family members, and Alberta recently joined other provinces in ensuring that employees can return to their previous jobs after eight weeks of caregiving. But Albertans without employment receive no financial support.

Judy Pidgeon (who petitioned for compensation while looking after her mom, but was repeatedly refused) advocates extending self-managed payment to full-time family caregivers who prove they are dependable, responsible and honest. Government’s reluctance to do so reflects a philosophy that families should look after their own, West notes. “But that’s a holdover from the old nuclear family concept and doesn’t match today’s reality.”

Of course, compensating family caregivers means investing more government money, as does paying healthcare aides a living wage, turning silos into teams and focusing more on preventive health care. The recent reinstatement of contracts to Edmonton providers demonstrates that public outcry can shift the political course. But fundamentally restoring home care will take sustained persistence. Politicians respond to light (accurate information) and heat (public confrontation), Swann says. “Generally we’re good at turning on the light in this society—not so good at turning up the heat.”

Cheryl Mahaffy is a journalist and long-time contributor to Alberta Views.

The post Home as Hospital appeared first on Alberta Views.

He’s now more comfortably ensconced at the Colonel Belcher Care Centre, one of Calgary’s newest facilities, where each resident enjoys the precious privacy of their own room. “When I moved in here, I thought I’d gone to heaven,” he says. Mind you, he only gets one shower per week, so he pays for two more at $40 each. That’s $80 per week out of pocket—or more than $4,000 a year—for something most of us take for granted.

McMeekin may be in one of the newest facilities in Alberta, but even here things aren’t perfect. “The staff are excellent,” he says, “but there aren’t enough. They’ve done away with registered nurses [RNs]. Licensed practical nurses [LPNs] do most of the work.” And there’s the regimentation of the institution: dinner at 5:00 p.m.—“One hundred ways to cook hamburger,” he smiles.

McMeekin’s experience, however, could be called cushy compared to the neglect many senior citizens experience in long-term care in Alberta. And even the limited resources being put into long-term care in this province are in jeopardy. The Alberta government, like those in most provinces, now proposes that many seniors currently in publicly funded nursing homes shouldn’t be there. Instead, they argue, these seniors should be in some other type of assisted living arrangement (including private facilities and “aging-in-place”) where necessary health services would be delivered by home care while other services—including “unnecessary” services like showers—would be paid for by senior citizens themselves.

It’s a proposal based on shaky premises. “Where is the data showing that those people don’t belong [in long-term care]?” asks Donna Wilson, professor of nursing at the University of Alberta. “The government hasn’t collected data for 10 years.”

Seniors advocates are also up in arms about the shift. “The [government] promises that care will be virtually the same, but they pass it off to investor-owned facilities,” says David Eggen, executive director of Friends of Medicare. “There aren’t the same regulations regarding nurses or the same provisions for training.”

The cost implications for individual seniors could be enormous, he adds. “Once you move from long-term care to assisted living, you’re not afforded the protection of price controls,” Eggen says. (Alberta seniors pay from $16,000–$20,000 a year to live in publicly-funded long-term care; they can pay up to $72,000 a year for private assisted living facilities.)

Also in the works is a new omnibus Health Act, which will supersede all current health legislation, including the Nursing Homes Act. The Nursing Homes Act sets out standards which guarantee residents a minimum level of care. Under the proposed new legislation no such specifics are laid out. “What is proposed is an Act with principles that are so vague as to be meaningless,” says Noel Somerville, chair of the Seniors Task Force for Public Interest Alberta (PIA).

Most Albertans haven’t thought past the “elderly” stage to the “incapacitated” stage, and even fewer have any idea of what awaits them in long-term care. “Doing some market research five or six months ago we found that people don’t think about it until there’s a crisis,” says Greer Black, president and CEO of Bethany Care Society, a not-for-profit organization that operates close to 800 long-term care and supportive living beds in the province.

The number of elderly who need the 24-hour medical support provided in long-term care is about 4 per cent of the senior population; not a very big number, hardly worth thinking about—until it’s your relative who’s been assessed as needing such accommodation. Then you begin to realize that the nursing-home residents of this province would populate a town the size of Camrose (some 16,000). Not so insignificant. And that number is set to double when baby boomers hit their 80s.

Projections put Alberta seniors at 20 per cent of the province’s population—or more than 880,000—by 2025, when the last baby boomers turn 65 and the first are starting to need long-term care. That group of men and women in their 80s and beyond will number more than 35,000. According to Dr. David Hogan, head of geriatric medicine at the University of Calgary, “[Long-term care] is not an unusual thing. A person’s risk over a lifetime is 30 per cent. We have to expect that many of us will have to move.”

Helping a relative move into a nursing home is one of the most painful of life’s experiences. If you are the spouse, you are grieving the loss of a once-vibrant partner, and the comfort and support they gave you, and at the same time, you are coping with the prospect of a lonely future. If you are the child, you are grieving the loss of the strong and healthy person who brought you up, and dealing with the fact that you must now assume the role of parent. “For children, it is very difficult to take on making decisions for their parent, for someone who has lived 80-plus years making their own decisions,” says Dr. Norah Keating, professor of human ecology at the U of A and a family gerontologist. Consumer/seniors advocate Wendy Armstrong, whose mother was in long-term care, agrees. “It’s a grieving process. You need the support of other people.”

“There are other costs, too,” says Keating. “With dementia there is loss of relationship: you may not be able to relate to your relative. Researcher Pauline Boss calls it ‘ambiguous loss.’ They’re not the same person, but they’re still there. That kind of ambiguity is really difficult because you can’t resolve it.”

Keating points out that grief is not the only challenging emotion caregivers have to deal with. “Pressure on families is emotional, physical and economic,” he says. “The transition to a nursing home is fraught with guilt: we think ‘I should be able to do this on my own.’ ” As Armstrong sees it, “It’s not only a grieving process, it’s also a new care responsibility.”

Most of us haven’t thought past “elderly” to “incapacitated”—to what awaits us in long-term care.

And it’s often one we don’t anticipate. “When people hear ‘long-term care,’ they think, ‘that’s a long way off, it’s nothing to do with me, it’s a seniors issue,’ ” Armstrong says. “I never describe it as a seniors issue. The reality is it’s a family issue. This is an issue that has a profound ripple effect on the family and community. At one presentation a young man asked me, ‘Why is this important?’ I said, ‘If your widowed dad had a stroke tomorrow, would it be you or your wife who quit their job?’”

Facing a similar situation, “Muriel Patman” (name changed to protect privacy) quit her job. Her father has been waiting for a private room in his Calgary nursing home for four years. “He worked hard all his life, and now look what he has,” she says. “Three men sharing one dinky bathroom. There’s only room for his bed, side table and dresser. No chair.” She and her sibling spent a huge amount of time dealing with fallout from staff shortages, and eventually decided to bring in their own caregivers at a cost of $10,000 per month.

“They’re doing everything the staff should be doing: helping with meals, changing him, moving him around,” she says. “But external assistants can’t do transfers, so sometimes they wait 45 minutes.” For Patman, the need for continuous vigilance and oversight was overwhelming. “I finally had to leave my job. It took so much time, having to be the squeaky wheel.” But she’s paying another price, too: lost connections. “I may go back to work,” she says. “It’s isolating, having to do so much for Dad.”

Carol Wodak says she became an outspoken seniors activist after dealing with her mother in an Edmonton nursing home in 1995. Wodak, now 70 herself, became so involved in her mother’s care that she pretty much abandoned her own interests. “I used to do quilts, make clothing, doll clothes… my work table looks the same today as it did in 2005. [Caring for my mother] became a full-time job,” she says. “I remember thinking ‘at least she’s going to be cared for 24 hours a day.’ I learned really quickly that I couldn’t stop worrying; the level of care required of me was even greater. I couldn’t stand what was happening to my mum. I was fighting to get her one bath a week—every week.”

“Willa Shields” is not working, but even so, she finds caring for her mother a challenge. At this point, her mother is in an assisted-living complex with private health services rather than home care. Shields is picking up the slack, not just financially but in terms of time. “I’m probably averaging 15 hours a week,” she calculates. “It’s put a lot of things on hold—not top-of-the-list things, but things I would like to have done: taking longer trips, spending time with my grandchildren. I can do the basics but I’ve cut down on socializing. I’d love to have people over for dinner but I can’t do it. Either I’m too tired or I don’t have time.”

“Fern Janson” is following the aging-in-place dictum with what some might deem heroic efforts. Her father has dementia and other, physical problems and the family wants to keep him at home as long as possible. “The doctors, including a geriatrician, told me my dad won’t get proper care in long-term care,” she says. “They said, ‘Your dad will be sedated, diapered and restrained.’ ” She tried home care. “Home care would give us an hour at breakfast, an hour at lunch and an hour at dinner—and it was a different person every time. It just wasn’t right. Over time I decided to do it myself. I do a way better job because I know my dad.” Now she spends well over $10,000 a month bringing in support workers privately and countless hours managing everything. “This is my full-time job, helping my dad,” Janson says. Putting her father in assisted living was also not an option: “Assisted living places are private and they have their own criteria for who they’ll accept.”

While a monthly expenditure of $10,000 for private caregivers might sound high to the uninitiated, the cost of services adds up quickly. Caregiver rates start at around $25 per hour, or $300 per day for a 12-hour day, which works out to $9,000 per month. Caregivers provide bathing, dressing, medication supervision and other services not provided by healthcare. Add housekeeping and meals and you get to $10,000 pretty quickly. These costs can double if two parents need special care.

In addition to bearing the monetary cost, however, these women are examples of the hidden costs of “aging in place.” The U of A’s Norah Keating lays it out: “You’re going from full time to part time, leaving employment altogether, taking early retirement. So people are taking short-term and long-term economic hits—not only loss of salary, but perhaps reduced pensions. It’s getting to be a big and growing issue. The other costs are people’s time. There’s some kind of assumption that if you’re providing the care it’s free. But you may not be taking care of your family or yourself. Those are economic costs.”

In the summer of 2010, 1,700 people were waiting for admission to long-term care in Alberta. More than 700 of them were taking up acute care beds in our already overstressed hospitals; the rest were waiting at home or in assisted living. These numbers have barely changed in the past 10 years. Neither has the number of long-term care beds, which has ranged from 14,000 to 14,300.

Long-term care in Alberta operates in borderline crisis mode. Just about every facility is short-staffed, which limits the amount of personal attention any one resident receives. Infrastructure is deteriorating, the province is already short of long-term care places and government policy is heading into unexplored territory that includes a lot more privatization. On the one hand, facility owners want provincial funding increased by 40 per cent; on the other, a class action suit against the province claims the government overcharges nursing home residents. A government study called “Visions 2020, The Future of Health Care in Alberta” forecasts massive growth in demand for long-term beds—some 50 per cent between 2008 and 2020. In another document, “Aging in the Right Place,” the government claims that, with alternatives in place, the number of beds can remain static “for the next several years.”

To the government’s incoherent policy add a looming shortage of healthcare professionals. According to the U of C’s Dr. Hogan, “One of the big issues is that very few students are going into geriatrics, gerontology in medicine, nursing, physio, occupational therapy. It’s very hard to recruit. These are viewed as less glamorous aspects of nursing, for those with less training. But they’re also more difficult areas to practise. There are more complex people with multiple problems, physical limitations.”

This is why it’s important to have RNs on staff, according to Bev Dick, vice-president of the United Nurses of Alberta. “The elderly in a care facility usually have several issues,” she says. “They’re very vulnerable. There’s all kinds of research to show that when you take RNs away, bad things happen. Other care staff don’t necessarily have the skills to recognize when a condition has worsened. By the time the RN is brought in, the intervention becomes more costly and harder on the patient.”

The ratio of RNs to LPNs fluctuates in Alberta, with demand for LPNs (formerly called nursing aides or orderlies) rising and falling depending on system needs, resources and healthcare trends. According to the College of Licensed Practical Nurses of Alberta, the number of LPNs “steadily declined” in the 1980s and 1990s as their value and role were seriously questioned, but has since risen following a review of education and a period of mandatory upgrading.

It’s a contentious subject. Alberta saw a 17 per cent decrease in the number of RNs in direct long-term care from 2007 to 2009 due to the closure of public facilities and transfer of patients to assisted living, increased numbers of lower-paid LPNs, reassignment of RNs to administrative duties and staff reductions. Tom McMeekin’s wife, Sandy, a former RN herself, watched the change. “I worked in long-term care for 15 years, and staffing used to be a lot better,” she says. “With the loss of RNs the things that should be in place for quality of life are gone.”

In many cases, the facilities themselves do not contribute much in the way of quality of life. Some 50 per cent of the long-term care facilities in Alberta are 30 years old or older, and 50 per cent of the beds are in shared rooms. In 2008 Alberta Health & Wellness published a fact sheet on its continuing-care strategy which included a number of promises that have yet to be acted upon, including a commitment to “refurbish 7,000 long-term-care beds by 2015.” Since 2008 the government has announced new beds, but they are described as supportive-living or continuing-care beds. This does not necessarily mean long-term care, but fits with its aging-in-place strategy.

Hasmukh Patel is CEO of AgeCare, a company that builds and runs long-term-care facilities, and president of the Alberta Continuing Care Association, which represents most of the continuing care accommodations in Alberta. “No question, buildings need to be replaced,” he says. But, he adds, the room and board payments mandated by Alberta Health & Wellness don’t cover the cost of capital. “Money to modernize has to come from the government.” Even then, new construction takes time. It may seem like 2031 is a long way off, but it’s not in the nursing home business. According to Greer Black, “We’re looking at a 20-year period in this sector; you need to look at demographics that far out because what we do is capital intensive. Getting the money to develop is almost a 10-year process.”

Garth Mann saw the writing on the wall years ago. His company, Statesman Corporation, was in the business of building resort residences. It soon became clear that some of the aging residents needed more support, and so Manor Village Life Centres was born: luxury seniors residences that offer a communal dining room and other social supports. “The real mandate is how to preserve independence as long as possible,” Mann says. “The last thing we want to do is create an institutional atmosphere.”

Staywell Manor in Calgary—a “premier seniors community”—has been extremely successful, says Manor Village vice president Nicolle Blais. “We’re looking at additional opportunities,” she says. “I think we’ll find private companies such as ours can’t build communities fast enough.” The catch: a room plus meals at Staywell starts at $4,000 per month, and despite Mann’s assertion that residents can stay “ ’til they become angels,” this cost is beyond the pocketbooks of many Alberta seniors. The facility also doesn’t offer the same extent of services as a nursing home.

“Children must assume a new role. It’s very difficult to take on making decisions for one’s parent.”

Public Interest Alberta’s Noel Somerville is concerned that a lot of Albertans are doomed to spend their last years blowing through their savings, running out of money and ending up in desperate situations. “The government will look after very low-income seniors and won’t worry about the people with lots of money,” he predicts. “It’s the people in between. A lot of people can afford the privately operated assisted living facilities only because they’re living off the proceeds of their house and worrying if it will last. I think that’s atrocious.”

It’s a situation that has seniors advocates in the province deeply worried. “People have to realize it’s a big problem for society; it’s in all our best interests to improve care for older individuals who have become infirm,” says Dr. Hogan.

Are there right ways and wrong ways to care for these people Not according to Eric Wasylenko, executive director of clinical ethics with Alberta Health Services. “There are questions society needs to ask,” he says. “How much are we willing to put the burden on the family, and how much are we willing to put the burden on society to pay for our care?”

Most Canadian baby boomers have had access to excellent healthcare their whole lives. They’ve listened to the advice of nutritionists, doctors and trainers and they expect their bodies to hold up well into the future. As Dr. Keating says, they expect to be “healthy, healthy, healthy, healthy, dead.”

But when that doesn’t happen—when those corporeal assets start to let them down, and there’s no quick fix—what is going to happen Are they going to go gladly into long-term care, sharing a small, cheap room with some stranger or mouldering away alone and in poverty It’s a scary scenario. If those of us who are edging toward old age don’t get involved, we will have no control over what could be a rather bleak future.

Hope Smith is a freelance writer whose first-hand experience with senior care in Alberta prompted her to write this story.

The post No Place to Age appeared first on Alberta Views.