The Story of System Failure
Was justice served after family caregiver in Winnipeg goes to jail?
About eight years ago, I gave a presentation during a conference for those who care for a family member with dementia. I opened the conference with a keynote based on a concept I developed in 1997 which stages the caregiving experience.
During the presentation, an attendee asked, “My caree won’t accept help. What do I do?”
“Help is for both of you,” I answered. “Consider what could help you. It’s frustrating that your caree won’t allow help. You deserve help, too. Find what can help you.”
The audience responded not with a sound but with more of a movement. They all shifted to look differently at their experience. They could take a break from the tug-of-war with their carees to focus on finding and receiving what they needed. During caregiving, we can focus so much on the pressing needs of our caree that we sometimes lose sight of the bigger picture.
The structure of the system contributes to our narrow focus as it often only sees our carees, rarely asking about our needs and infrequently referring us to what could help us. The irony, of course, is that we are a caree’s main care provider.
I’m reminded of this experience because of an article I read yesterday: “Ron Siwicki failed his mother. Who failed him? A Winnipeg family’s horror shows the limits of elder care at home.”
It’s a heartbreaking story of a son who went to jail after his mom died at home on the floor covered with bed sores.
It’s a devastating story of how difficult caregiving is. Although his mom regularly refused help, Ron tried to get help in the spring of 2012:
“Ron stopped at the Misericordia Health Centre on his drive home from the Pony Corral, knowing the hospital would not be busy at 3 a.m. There, he inquired about how he could get help for his mom and was given a phone number for a mobile crisis centre. When he called, however, he was told the centre mainly dealt with suicide and mental-health crises, not situations like his own. Instead, they got a specialist to call him back and arrange for a home assessment.
“During her visit, the specialist spoke with Betty, testing her ability to recall such things as the date and day of the week. Even when fed the answers, Betty could not remember them several minutes later.”
“The specialist suggested to Ron that she thought his mother might have early signs of Alzheimer’s disease, and recommended that she come to the geriatric program at Seven Oaks General Hospital on a Thursday for a more complete evaluation.
“Betty turned to Ron, just as she did the time he called 911. ‘Ron, why are you trying to make me look like a fool?’ he recalled her asking. Ron said he felt horrible, as though he had betrayed his mother.
“He never did convince her to go for the evaluation.”
Betty died in December 2014. In 2018, Ron pleaded guilty to criminal negligence causing death and failing to provide the necessities of life and, upon an appeal, sentenced to two years in prison.
What could have made a difference to Ron and for Betty? I think of that in-home assessment.
What if that specialist who visited their home also spoke to Ron about help for him? What if the specialist spoke privately with Ron to let him that caregiving is hard, that it’s common for a family member to refuse help, that it’s frustrating when that happens and that there’s support and help available for him?
I regularly write and speak about the concern I have about the message that “family caregivers don’t self-identify.” Family caregivers identify their role to the system and to our communities every day. Ron showed up as his mother’s family caregiver on the day of the at-home assessment. Perhaps Ron’s horrible predicament could have improved had the assessment included that conversation with Ron that there’s help for him regardless of whether his mom receives help. What if the specialist connected Ron with another man who cared for his mother? What if Ron understood he wasn’t alone in his challenges, that others faced similar difficulties? If Ron connected to someone who understood and who listened without judgment, would he have shared the truth of his situation so that more services could have intervened before the situation became so dire?
Simply put: What if the specialist identified Ron as the family caregiver and explained that he deserved support and help because caregiving is hard? What if the specialist said that every family caregiver deserves support and help because every family caregiver faces really tough days?
During our long pandemic long months, I have wondered about families in their homes trying their best without help and support. During the pandemic, both family caregiver and caree went without help. When will we start to hear the traumatic stories of what caregiving without help was like? How will we create support and services and help that’s pandemic-proof, which means it remains regardless of any crisis or emergency?
It’s clear we need to do better. It’s clear we need to do more when a family caregiver reaches out for help. It’s clear the system failed Ron.
What do you think? I’d love to hear your thoughts and reactions in our comments section, below.
(Image by Pexels from Pixabay)
We still don't have any cohesive national plan for caregivers. Especially during the continuing pandemic, we have seen an abandonment of those in need in a way, we have never seen in U.S. history. We have seen abandonment even of those in LTC facilities. We have seen those actually trusted to care for vulnerable in LTC facilities refuse to get COVID19 vaccines, and so vulnerable get sick and too many die. My own wife was in a rehab facility in January when she was infected with COVID19. We need a new coalition of caregivers and those in need to help one another, because I simply don't see it coming from our shared governments. I also think we need to reassess how male caregivers are treated, as too often they are looked at as second-class caregivers, with suspicion and even disrespect.