Joyful Journey

The current horrific circumstances resulting in thousands of deaths in our long-term care homes has been a virtual ticking time bomb that was waiting to explode. And now we have seen it explode into the public consciousness day after day. Into the aching hearts and minds of family members and friends of residents in long-term care. Into the consciousness of staff who have become numb to the poor quality of life of many they serve. And into the overwhelming sense of frustration and personal failure of those in leadership.

As of this writing there have been 2,781 deaths in Ontario long-term care homes and there are 207 homes in outbreak due to COVID-19.

A resident in a seniors community challenged me today. She felt my silence as a leader in my chosen field reflected a complicity with those who are responsible for the tragedy. She felt I had to do something.

My silence was not complicity, but rather my own feelings of helplessness and heartache.

Experience has taught us that media exposures accompanied by political posturing and threats of increased rules, inspections, and punishment, create an opportunity for grandiose commitments to effect permanent change but in fact serve only to delay and wait for the drama to settle and the situation to return to normal.

However, I was startled into painful distress and the need to do take whatever action I could  when faced with the following story.

A member of my extended family, admitted from hospital into long term care in Toronto on Christmas Day with a diagnosis of dementia and resulting difficult behavioural issues, was speedily administered an antipsychotic as a solution, rather than reaching out to family for assistance.

“Too busy!”; “Not enough staff!”; “The hospital did not tell us!“; “(We likely would not have admitted her if they had)”; “She was bothering other residents”; “We don’t have time for this”.

And so they rendered her helpless with something that is effectively a chemical restraint. No consideration appeared to be given to the horrendous trauma the gracious former school teacher, choir director community leader, and loving wife, mother, and grandmother was experiencing.

In the midst of a pandemic she had become just another terrible nuisance.

The next day, her fully engaged loving daughter realized something was seriously amiss in her mother’s condition. She had not been advised of the decision to administer these drugs, and challenged the nurse leader. Only her intervention changed the approach of those responsible. The chemical restraints were withdrawn but no assurance given that she will receive the care she needs. The future is bleak.

I do not agree that the primary issue is for-profit ownership of long term care homes.

I am convinced however that there is an underlying societal issue which permits this travesty of justice. Our cultural view of our Elders, especially those suffering dementia is that “they are lucky we care for them“ not “we are privileged to serve them”. It speaks of a lack of respect for folk at their time of greatest need. 

It is almost as though some have decided that their long lifespan renders considerations of their quality of life as moot.

As a society we have become more conversant with and accepting of mental illness — this is very significant progress — however the same cannot be said of dementia affecting our elders. Dementia is understood as an inevitable part of aging. It is not.

And so in that unfortunate dynamic, horrific behaviours are permitted to occur.

How dare the management company exacerbate the pain felt by anxious relatives by not answering the phone?

How dare they not allow relatives to visit their loved ones?

How dare they pay dividends to shareholders when staff and supplies are woefully inadequate?

How dare they expect four bed wards to be acceptable accommodation?

How dare they hide behind the mantras of “every dollar we receive is spent as directed” when in fact the profits (surpluses in the not-for-profit sector) are still being realized and the return on investment insisted upon, regardless of the needs of the people they serve?

They dare because the general public accepts the service, albeit reluctantly, rather than insisting there is a better way. They dare because the political leaders posture impotently without the unrelenting commitment needed to make change happen.

Commissions, studies, public posturing, and more money! With no end in sight.

And so the drama continues to unfold. The senior who challenged me suggested a letter writing campaign, “The ‘prisoners’ in long term care need to know there is someone out there advocating on their behalf”. 

The daughter committed herself anew to hold the organization accountable for the care of her mother.

And I will do my part by advocating whenever and wherever I can, to effect permanent change.

We are privileged to care for those who have gone before us. The potential losses we may face in our own functioning capacity do not change our history. And even if our history is not notable, those who have accepted responsibly for our care need to be taught respect, by word and deed. 

We have an obligation to change the culture of care, not just turn away and hope it will all be ok. There is indeed a “better way”. And if it is my turn for care, may that better way be underway.