Brighten the Corner Where You Are

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I reflect frequently on my conversation earlier this year, with a Care Partner at Christie Gardens, our well-known “campus of care”. 

Sarah was on her lunch break and often sat for a few moments in the quiet of the 10th floor library. I was there that day and welcomed her to join me. I knew I would enjoy our conversation.

Sarah’s daily work assignment was to visit and provide needed care for Independent Living residents in their suites. This support program is called Assisted Living. 

Assisted Living can be the key to the resident remaining “at home” safely and with dignity, in spite of health challenges and personal losses. In some cases the resident might be suffering the onset of dementia and participating in the Assisted Living program, while waiting for a move to The Courtyard, our full care home on the first floor.

Sarah was a highly respected employee. She had been working full time as a Care Partner for over ten years. Throughout her work shift she might spend time with a dozen residents. Her duties were primarily to assist them with activities of daily living as needed. The majority of her residents knew her well and were very happy for her kind attention.

At times, however, she might encounter resistance and on occasion aggressive personal insult from a resident. There was no doubt she knew fatigue and sometimes pain as she fulfilled her duties.

I inquired about her day and her relationship to the residents she was currently supporting. I had heard of one particularly challenging lady, a Mrs. Jones, who may have caused Sarah grief. I had heard of Mrs. Jones’ unpleasant responses and of her frequent insults aimed at those who attempted to provide her with much needed support.  

I raised this subject with Sarah. She spoke of really enjoying both assisting and becoming a friend to the residents. When I inquired specifically about Mrs. Jones she was uncertain how to respond. And so, I attempted to encourage her by sharing my vision for respectful care of our Elders, using Mrs. Jones’ history and current behaviour as an example.

Mrs. Jones was a former professor. She was a high-achiever, and life-long social activist but recently had driven away those who attempted to be close to her or help her in any way. Mrs. Jones’ responses, including personal insults to the team, were no doubt driven by her dementia, frustration, and fear. 

I shared my vision that we might all consider the following philosophy of care. Our perspective should be clear. Not that Mrs. Jones was “lucky to have us care for her but rather that we were privileged to assist her especially at this time of her greatest need.”

I acknowledged that getting that message beyond our doors was proving difficult for me. Sometimes it felt simplistic in the face of complex situations. I acknowledged that I often felt I should just give up trying to share it with others in our field of service, and retire.  

However, I remained convinced that the quality of Mrs. Jones’ life would be directly impacted by Sarah’s attitude and responses toward her, no matter how Mrs. Jones behaved. And that in turn Sarah would also benefit, as would we all.

We then digressed into more personal matters like how long it took her to travel to work by public transportation. That her daughter was a nurse and really needed the family car to get to her work and that what her daughter did was more important. And so she travelled daily to the heart of the city from north Mississauga.

Our brief but meaningful conversation ended. Sarah stood to leave, took a deep breath, and turned to me with her recap of our discussion.

“I am on my way to see Mrs. Jones now. When I get to her door, before I knock I will pause and say to myself I am privileged to assist you”. Then with a radiant smile she went on her way.

She could, and I have no doubt would, brighten Mrs. Jones’ corner of fear and loss.

And so, I was once again encouraged to continue to share my message. Large group or small, or conversations with individuals, the message is clear. The ripple effect is difficult to measure but I remain convinced that we can “change the culture of Eldercare”.

And so, front line workers, and all who support you in the daily challenge of caring for our Elders, please remember it is our privilege to assist them and be their friend.

Brighten the corner where you are.  

I leave you with this hymn written by Ina Mae Duley Ogden and Charles H. Gabriel in 1913, and performed here by Ella Fitzgerald in 1967.

Ownership is Not the Issue

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The Toronto Star posted an article a few days ago that was focused on for-profit ownership in long-term care. Of all the drama and hype we have seen in the past months, this article captured more clearly than usual the subject of private versus public ownership. It is an excellent learning tool.

The problem with profits: As Ontario’s long-term-care homes stagger under a COVID death toll of more than 3,000, some say it’s time to shut down for-profit homes for good.

https://www.thestar.com/business/2021/01/26/the-problem-with-profits-as-ontarios-long-term-care-homes-stagger-under-a-covid-death-toll-of-more-than-3000-some-say-its-time-to-shut-down-for-profit-homes-for-good.html

However, search as I may, and I have reread it several times, nowhere can I find the core of what we do and why.

I am left with a feeling of helpless futility. 

Outcomes require objective data and while they may drive decisions about legislation, funding and inspections, they fail to address quality of life issues.

What about the folk who are served?

What about the daughter who was called and advised her mother had died, and that she should come and pick up her stuff? She was then directed to the underground garage where her mother’s personal belongings had been stuffed into garbage bags and left among others in an empty parking space. No expression of concern or regret for the daughter’s loss. A complete lack of respect for all that remained of a beautiful lady who had been entrusted to their care.

I recall a garbage bag scandal 30 years ago. We were seriously chastised and rightly so, for putting deceased residents’ belongings in garbage bags. Homes were actually given an extra day they could collect revenue in order to allow for respectful handling of personal possessions.

Here we are again.  

What about the member of my extended family who suffered through a month of neglect and abuse in a long-term care home because she was “combative”? Staff explained that they had no time to determine how best to meet her needs. Of note, she was under 100 pounds and bedridden from the lack of any kind of physiotherapy, and in her dementia possibly fighting for her life.  

She was removed from their “care” and taken to a different home. She was found to be severely dehydrated, disheveled, with filthy clothes, and suffering bedsores over her whole body. 

In neither case was the issue that of ownership, but the evidence of a complete lack of empathy on the part of staff, our front line heroes, for the resident or her family.

What action will have an impact on these types of outcomes in future?

What is critically needed is that intangible quality of caring which will certainly not be achieved through money managers promoting the sector to potential investors.

Nor will it be achieved solely through legislation and inspection. Nor can any amount of money thrown at the “problem” solve it.

There has to be a shift in the overall paradigm. 

Who are we? Whom do we serve and why?

Will the politicians step back and consider the quality and nature of the social service we are offering as their motivation to effect change?

Will the owners understand that this is not an accommodation business, but human lives entrusted to us at their time of greatest need?

Will the educators change their focus from body care and documentation to the personhood of the individual?

Will the students grasp the principle of providing “Home” with comfort, dignity, and respect?

Will the pendulum swing from celebrating our front line heroes to celebrating the Elders we are privileged to serve?

I am hoping, and indeed praying, that in the midst of this relentless tragedy leaders will emerge who will make a difference. 

There is a better way.

And the story continues to unfold.

The Doctors Made House Calls

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Who could have ever imagined the sight? Chairs outside each doorway on Floors 2 to 10 of the 10-storey building, where three hundred forty of the city’s finest Elders live. The remaining eighty residents of this remarkable community live in The Courtyard, our full care home on the ground floor, a critical service in our Continuing Care Community. A “Campus of Care” as it is now described. (See my previous post)

From the beginning of the COVID-19 pandemic, Christie Gardens residents have exhibited exemplary responses to the ever changing rules and restrictions.

Those in Independent Living faced limitations on their movement they could never have envisioned. Those serving them could not have anticipated the day to day disruptions and ever-changing guidelines.

Residents in the Courtyard who had isolated to their rooms during the first wave of the virus faced the most challenging losses.

Once again the staff teams showed their true colours. 

There were no staff shortages; Care Partners worked double shifts to ease the workload for their colleagues; Nineteen staff members from all departments chose several weeks of accommodation nearby in order to keep their residents and families safe.

Team leaders met twice and sometimes three times daily to stay fully apprised of and respond to the changing situation. The sense of concerned gentle care permeated the whole community.

For some members of the Directors Team, twelve long days over the holidays with no time off to be certain residents were served well and community life was rich.

Endless decisions and regular communication to residents and families. Unrelenting determination to keep residents safe and see the crisis through.

Amazing responses from Independent Living residents …

Several left to be with families but were soon asking to come back to Christie Gardens. They would handle the restrictions, they just wanted to be home.They face each challenge as it occurred and trusted Christie Gardens staff to care for them.

And the reaction of The 340 residents on Floors 2 to 10 faced with the directives from Public Health and guidelines from our team.

Dining rooms closed?

No problem.We will order from the menus provided and enjoy the “bagged” take out meals delivered from the Dining Services department.

No fitness classes?  

No problem  We will sit on the chairs provided outside each suite door and encourage each other in the exercises led by the personal trainer going from floor to floor and calling out to them with the help of a portable sound system.

Toronto Public Health says we can’t go for a walk?

Now that’s a problem. I am going for a walk. I will be screened each time I return.

Need groceries?

Not a problem. I will pick them up on my walk and will shop for others is they need my help. You can see why I must go for that walk.

Staff Care Fund established?  

Do whatever you can for them. Here is my donation toward the cost of accommodation so they can be safe. Over $90,000 raised to cover the extraordinary expenses,

No group gatherings?

I will learn to “Zoom” and take part in whatever Is offered. And learn they did, with frequent interventions from the IT specialist to see them through it. The chairs are not needed in the halls any longer.

Would you like meals delivered to your suite?

Great, when you come to my door I will pass you my plates so it will feel like normal. I will wash them after and save you the work.

The store is open every day and you offer delivery?

Great, I can get most of what I need right here. You won’t have to worry about me going out.

You want me to be tested for the virus? Again?

Of course I will sign the consent form. We need to be safe.

And now the long wait is over! The big day is here!  

Of course I will get the vaccination. I can hardly wait! What do you want me to sign? Where do you want me to go, and when?

The Mt. Sinai Health Team arrived with five hundred doses of the Moderna vaccine. All residents and staff who had not yet been vaccinated had been invited to participate. Consent forms had been signed by all and many questions answered.

Many hours of planning had been undertaken. Plans for staff support for the residents’ floor by floor groups. Safe distancing on the elevators at carefully prescribed times so the residents could travel safely to the Maple Dining Room for their turn. The excitement was palpable.  Support staff teams equipped with full PPE had been instructed regarding their roles in assisting the Mt. Sinai team. 

However, in the midst of the best made plans, late in the day before the big event, a fresh perspective was introduced.  From the leader of the Mt. Sinai team assigned to Christie Gardens came the vital comment and question: “It can be challenging for all the residents to have to come to a central location. Based on our experience at other homes, how would you feel if we go to each of their suites instead?”

How would we feel? Delighted. To their doors? No elevator congestion. No concerns about stresses for some of the very frail elderly persons living in our community. Wonderful suggestion.

And so, with the same capacity for quick decision making, the community was immediately informed of this highly desirable option. Overnight, chairs were placed beside each door, with careful spacing in the halls for medical carts and social distancing. The house simply “buzzed” with good will and excitement. Felt like a Canada Day celebration.

And the Doctors would be making house calls.

What a day. Inspiring and motivational. Residents visiting with each other, from a safe distance, staff cheering them on. 

All residents in The Courtyard were first on the list to be vaccinated. Care partners each assisted their residents.  

Essential Visitors, family members and friends chosen by residents as their approved guests, were almost giddy with relief to see what was happening. They had previously been offered the opportunity to receive vaccinations at a nearby hospital clinic.  Over 150 of them had responded with only a day’s notice and could now help if they were needed. Indeed some of them had come to assist in this important event.

The team from Mt. Sinai arrived on time and were extraordinary. 

It is apparent an excellent new partnership has emerged in the midst of this crisis. Cheerful, optimistic, and well prepared with their invaluable cargo ready.

Immediately following the visit to The Courtyard, they made their way with Christie Gardens staff in full PPE assisting them in introductions and record keeping.

A thank you email from a resident said it well: “I can only imagine the enormous effort and skill needed to see this project through. And to make the last minute switch to house calls which, of course was so much easier for us. Thank you. So glad to be a part of this community.”

Changing the Culture of Care

Over arching the whole experience from February of last year with the intrusion of COVID-19 into our lives, until today with whole house vaccinations, has been the active and unrelenting expressions of RESPECT from all serving, to all receiving that service.

We have worked diligently for many years to change the culture of Eldercare care, from: “you are lucky to be living here”; to: “we are privileged to serve you”. ThIs sometimes overwhelming pandemic has tested our resolve and ultimately strengthened all of us. We are so grateful to experience first hand strong evidence of the success of our Culture Change ideals.

We are indeed privileged to serve the finest group of our Elders we could have ever met. And who are they? Those who have gone before us, setting the standard for a just Canadian society and worthy of our Respect. Those who have faced the traumas and losses of life and still wanted to actively engage with others. Those who are gifted and continuing to make meaningful societal contributions. Those who will help their neighbours, express their appreciation and challenge us when changes are needed.

And the doctors and their team have joined us in that Respect. So grateful for their meaningful contribution.

THE DOCTORS MADE HOUSE CALLS. And the future is brighter!

An Unrelenting Determination

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“A voice crying in the wilderness”, in modern idiom speaks of the idea of a lone voice promoting an unpopular idea. It was often how I felt. Not today! It took 37 years but a recent Ministry of Health announcement to 29 organizations that they had been awarded long-term care beds for development, included the affirmation that the “lone voice” was no more. Of these 29 organizations, 19 were identified as communities which were, or planned to be, “Campuses of Care.”

In 1983, Christie Gardens was incorporated as a not-for-profit registered charity, developed to provide accommodation and services for seniors. The doors were opened in 1984. The community comprised apartments, a retirement home, and a nursing home all under one roof. We called it a “Continuing Care Community.”

Our commitment was clear, expressed in marketing slogans at the time …

“The last and best move you will ever make”; “Home for the rest of your life”; and “A community you can have faith in”. While these were meant to be catchy, the commitment was clear: to provide flexible high quality services, if and when needed, in the face of changes in the health status or capacity of its residents. They could stay “at home” at Christie Gardens, and never be a stranger again. This commitment included admission to its nursing home should the need arise.

The concept was unique and charted a new course in seniors communities. Operating it was challenging and there were many naysayers. However occupancy was the envy of many at 98 to 99% yearly with growing waiting lists.

Over time, legislative changes and the introduction of government-managed waiting lists were major hurdles. There was no provision for preferred access to publicly funded long-term care (as it was now called) and our commitment to our residents was at risk. Long term apartment and retirement home residents faced with the need for care could no longer access the services that were onsite in “their home.” Spouses could be separated into different facilities without recourse, and those with complex health needs could be forced to endure the stress of a move at their time of greatest uncertainty.

The story of that transition is told in my memoir: Joyful Journey – an Adventure in Eldercare.

Our decision in 2009 to sell our licenses and withdraw from the publicly funded long term care system, was the path to fulfill our mandate to our residents and provide care “if and when needed.”

The lone voice continued however. Many groups toured and inquired of the  “what” and the “how”. There was always the “but”. We were told that legislation did not support our model. We were told that it was too complex to operate. We were told that we would always need government funding. We were told that we would never be able to get bank financing.

It took 37 years but our commitment never wavered. Campuses of care! A novel idea, or so it seemed, pioneered in no small way by one lone voice.

The lesson: clearly identify your mission and vision and be unrelenting in its implementation. There will be major hurdles, but keep climbing over them. It’s ok to be a lone voice. The day of affirmation will come.

Up next, Changing the Culture of Care.

Spotlight on a Human Tragedy: Long-term Care in Ontario

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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.

Source: https://covid-19.ontario.ca/data/long-term-care-homes

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.

Dawn Irwin

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From an Instragram post:

I read a lot of books and don’t share them all however this one needs to be shared.

If you work with the senior/elder population, whether in a retirement setting, long term care, private care or in any setting, you need to read this book.

I have an enormous passion for working with seniors and this book resonates with me because I have been a frustrated manager when it comes to access to care for our seniors — waitlists, funding, who we can accept, and who we can’t — and wanting more for the seniors we are caring for.

This book is full of wonderful stories but the underlying message is clear. There is a better way and after reading this book, if you are an employee of a broken system you will want to do better.

Grace Sweatman is an inspiration and I feel honoured to be an employee of Christie Gardens.

Go on this #joyfuljourney, you won’t regret it. #inspiration #eldercare #seniors #success #leadership @gracesweatman @heatherjanes22

Dawn Irwin

Patricia Roy

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This book truly is a must read for our time! Grace’s tenacity in learning all aspects of her responsibilities shines through at every stage of her career in elder care ending with a model that could and should be adopted everywhere.

Grace’s descriptions are vivid and through her words, one can feel the excitement and energy in the many projects undertaken throughout her years as administrator leading to an innovative new approach.

I highly recommend this book for its informative value as well as for the joy and pride of seeing how one person helped to make it possible to change the end-of-life days for so many.  

Patricia Roy

Former Journalist

IQ Conference Experience

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Had a very satisfying experience this morning presenting to the Alberta Continuing Care Association annual conference.

Had to give my presentation twice which was taxing, but fulfilling. There is still a place for telling the stories of advocating for our Elders.

Very kind audience, many of whom approached me afterwards to tell me that they had bought or planned to buy my book. I was very encouraged by the broad range of responses and their affirmation.

It was gratifying to fulfill the Foundation commitment to “inspire peers”!

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Onward.