It was the remarkable late American author Mattie Stepanek who published a plethora of poetry books and essays about peace before his death, just shy of his 14th birthday, in 2004, who once said, “unity is strength... when there is teamwork and collaboration, wonderful things can be achieved.”

Stepanek sustained an optimistic and hopeful verve on life, touched many hearts and accomplished impressive deeds amid his battle with mitochondrial myopathy, a muscle disease in which the body’s cells cannot produce a sufficient level of energy, thus causing weakness and fatigue.

Manifestly, there is too little currency for inspirational resilient figures like a Stepanek in a Canadian culture trumpeting a loud, well-funded and institutionally backed message that dignity can be found through a medically-assisted death.

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There are figures advocating for a culture of life alternative for end-of-life care, but too often the voices of these individuals and groups don’t resonate compellingly because of fragmentation.

But perhaps this reality is starting to change.

Kathy Matusiak Costa, the executive director of Compassionate Community Care (CCC) in London, Ont., Lino DeFacendis, CEO and founder of the Life Care Network headquarted in Thornhill, Ont., and Rex Pattison, an octogenarian Newcastle, Ont., Catholic hosting educational webinars about caregiving, have entered each other’s lives within the past two years.

“Rex and I chuckled when I mentioned to him that if we had tried to plan this somehow, it would not have happened as easily as it has," said DeFacendis. “Through God’s grace and providence, we just found each other and all of it is very complementary.”

Costa’s CCC specializes in improving the well-being of seniors by mobilizing volunteers to spend meaningful face-to-face time with them. DeFacendis’ Life Care Network is a referral service that provides seniors with personal support workers imbued with Christian moral principles. Pattison imparts knowledge and wisdom won from his experiences caring for his wife Pauline before her passing in April 2023, what he has learned about the Canadian health-care system in the ensuing years and why it is paramount to prepare for the stage of life where health declines.

Costa said a collaboration is already taking shape and there will be more opportunities to intersect going forward.

“I think we have already established a very strong referral opportunity and network,” said Costa. “People from (Compassionate Community Care) engage with members of the community, and when there is an opportunity to refer to either of the two (other) groups, I will do so.”

Costa has also heard from many colleagues and peers in a similar stage of life as her — she is married with five young children — who do not have any planning in place for the end of life. The importance of doing so is underscored by Pattison in each of his workshops.

Pattison, born in England during the Second World War, enjoyed a professional life defined by variety. He started out in civil engineering, which led to stints as a computer programmer and then a systems analyst. He then forayed into planning and training roles in the data processing fields. And finally, he transitioned into the emerging field of business continuity planning for one of the Canadian banks. Oh, and he has also written several books.

He noted that none of his roles were related to health care, “but it gave me the planning and management skills I needed to run a caregiving environment for my wife at home.”

Pauline was diagnosed with Parkinson’s disease in 2016, and the couple responded by making a conscious decision to adopt a one-day-at-a-time mentality. In 2020, she fell and broke her hip, and she had already been diagnosed with dementia.

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“Things went rapidly downhill from there, and I realized just how little I knew,” said Pattison.

He worked hard in trying to get the information he needed to care for his wife, but no one was available to help him amid the early chaos of the COVID-19 pandemic. He was left “totally in the dark as to what to do.”

The state in which Pauline returned home from her hip replacement was not what Pattison expected, and he fought to secure any concrete information about her medical state. Even getting an X-ray to see if the replacement surgery had worked was a struggle.

“I’m taking back under my sole responsibility someone who needed two people to hopefully go to the washroom,” said Pattison. “I’m in my mid-80s. I received no instruction. No help was offered. It was the scariest time of my life.”

Pattison did some research and found an agency that could supply him with a temporary support worker for $41 an hour, a solution that was not affordable for long. He kept working and was ultimately able to recruit his own personal support workers (PSWs) who helped him care for his wife for her remaining 13 months.

His devotion to Pauline during those years was informed by his love for her, his faith and his sincere commitment to the wedding vow “in sickness and in health.”

Along with urging attendees to prepare “for the strong possibility of declining health,” Pattison devotes time during his “Plan to be a Caregiver” workshops to outlining the shortfalls in the health system and where to turn when experiencing setbacks. He also sheds light on the various situations caregivers might confront and then arms them with the information and resources to take control in those scenarios.

He received assistance in developing this workshop from two former business continuity colleagues who also lost their spouses and by a PSW who cared for Pauline.

Costa, DeFacendis and Pattison coming together to host a joint workshop or a knowledge-sharing panel discussion is a prospect greeted with enthusiasm by all three, and each relayed to The Catholic Register that a collaboration could likely take place quite soon.

And there is a pressing need for these groups to come together, amplify each other’s work and provide a clear alternative road to being ensnared by the culture of death.

“I think at this point it is really do or die,” said Costa. “People are falling through the cracks. We find cases every day where people have literally been pushed into a hard place against the wall so they have no choice. I have had cases where people are not offered treatment, but instead MAiD or euthanasia.”

DeFacendis concurred that there “needs to be a more proactive planning process” in building out a network and collaborating, as “there is so much power in even the three of us doing this together.”

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Pattison, DeFacendis and Costa each know there are more faith-driven individuals across Canada striving to make a difference in caregiving for seniors.

They just need to keep finding each other.