Long Term Care:  Turning Grief and Rage into Change

By Karen Henderson, Introduction by Evelyn Jacks

It’s an issue that made devastating headlines for months: the suffering and death of vulnerable seniors before our very eyes.  All the worse for the raw fact that they lived in deplorable conditions of neglect.  According to Karen Henderson, Founder of the Long-Term Care Planning Network, planning for our own aging is a critical element of tax and financial planning discussions with advisors.  But it should also be a key issue in today’s national discussions to enable responsible change.  Her passionate story is Knowledge Bureau’s Special Guest Report this week:

Why Are Canadians So Upset About The Abuse, Neglect And Deaths In Our Long Term Care Homes?©

They are coming out of the woodwork—politicians, ex-politicians, lawyers, doctors, academics, citizens—exclaiming, even raging about the deplorable conditions now exposed in our care homes.

Let’s back up. Twenty years ago, my father lived in a care home; since I could not be there for hours every day, I was forced to hire private caregivers to ensure my father was fed, bathed and properly cared for. I saw abuse, I saw unacceptable food, I provided the special care that dementia demands. I didn’t blame the staff; they were doing their best, most of them with great compassion.

Twenty years ago.

Fate and caregiver guilt have impelled me to continue to speak, educate and write about the unacceptable conditions that families face as their loved ones require care near the end of life. In 2008 I wrote an article entitled Caregiving: Plus ça change, plus c’est la mème chose. A small part of what I wrote about long term care:What do we have to do to ensure our long-term care facilities provide adequate and safe care for the frail elderly? In May 2005 one poor 86-year old soul in Edmonton felt that she had no choice but to launch a hunger strike to try and demonstrate the inadequate level of care in the facility where she resided. In Toronto it took three murders in the summer of 2003 to get the attention of the courts; the result was that a jury made 85 recommendations in all, saying the provincial government needed to take more seriously, and spend more money on, nursing home care and safety. It remains unclear what recommended changes have been instituted. In 2004, violent residents attacked other residents 864 times in Ontario’s long-term care homes, and attacked staff 264 times, the inquest heard. There are ten times as many attacks today as there were five years ago.

There are many more people like me who have seen the suffering, who have tried to bring about change, who have been deeply affected by the fractured fairy tale we call long term care.

But sadly, the status quo has always been too strong to overcome. Old people in care homes can’t advocate for themselves; their families are too exhausted and discouraged to march. The media has done their best; there have been countless exposés on care home abuse and neglect followed by a momentary public outcry, followed then by life as usual.

We are experiencing the perfect storm fueled by government health care cutbacks, by politicians squabbling among themselves, by short-sighted public health experts, by overflowing hospitals and care homes, by greedy care home owners and by people unable to work in health care under the conditions imposed by the system. The devil could not have planned it better.

So why are Canadians now so shocked at the state of long-term care? We shouldn’t be—there have always been too few beds, too little money. Personal Support workers (PSWs) have always been underpaid, and underappreciated. They have always been forced to work in multiple homes to earn some sort of living. We have always known that flu outbreaks happen every year, killing residents every year, including my father. One would think that governments, public health officials and home administrators would have the drill down by now.

Canada and indeed the world can no longer relegate home and long-term care to the sidelines. The horrors have been made public. Our hospital and long-term care systems have needed a kick in the ass for years; I am just sick that it has taken a lethal, anticipated novel corona virus to expose the despair our most vulnerable citizens live with on a daily basis.

Collectively as a nation we will grieve for years to come, but right now I believe we need to focus on a long, overdue unrelenting rage. We have not yet earned the right to cry; first we must assume the responsibility to act.

What Can Be Done.  One of the first things we must do is plan for our own ageing—by understanding the long-term health care system and talking to our families about what we want in our last years. If you don’t make your own choices, others will make them for you.

Canadians must also push to get long term care on the election agenda for ALL parties. If we don’t demand change now, we will have lost the best opportunity we will ever have to create a humane long-term care system that we will all need to access at some point in our lives.

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Karen Henderson, Founder of the Long-Term Care Planning Network, was responsible for the care of her father for 14 years. She is now a specialist in ageing and long-term care planning and works with Canadians, their families and their professional advisors to help all groups understand the implications of ageing and the need for care on their personal, professional and financial well-being. Contact her at www.ltcplanningnetwork.com.

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