B.C. woman calls for change after being 'robbed' of last moments with dying parents in N.S. care home
Advocates pushing for legislation ensuring access to family members in long-term care
Bonnie Sherman wants to make sure no one else has to face the same painful separation from dying loved ones that she suffered during the first year of the pandemic.
The B.C.-based neonatal nurse said she was denied meaningful visitation with her elderly mother and father, Cora and Lee, in their long-term care facility in Nova Scotia until it was too late.
Sherman said her experience raises serious questions about the model of care in nursing homes and who has the authority to grant access to those loved ones in care.
"I think the government needs to enact legislation so that fully vaccinated, designated family members can never, ever, ever be denied access to their loved ones again," she said in a recent interview with CBC Radio's Information Morning.
Her mother was diagnosed with terminal cancer in January 2020 and given two to four months to live. In April 2020, Sherman started trying to get internal visitation access.
She had a letter from Public Health in Nova Scotia saying she would be granted access on compassionate grounds. She said she understood the need for public health precautions, was fully vaccinated, quarantined on arrival in the province, and was willing to wear the required PPE.
Denied meaningful access
However, her parents' care home refused her admittance. The home told her she was not eligible because she was not a previously designated caregiver and because, despite the terminal diagnosis, her 89-year-old mother was not "actively dying."
During the months Sherman was in the province, she was only granted outdoor, distanced visitation, which she said was meaningless because of her parents' dementia and hearing loss.
"When people have end-stage dementia, they really don't know you're there unless you're touching them and looking into their face," she said.
She said she was only able to secure indoor visitation when her 91-year-old father was suddenly deemed to be "actively dying." By which time, she said, her father was already unconscious and unaware of her presence.
During that time, her mother was moved out of their shared room, so Sherman was unable to have any indoor, non-distanced time with her. After her father died, Sherman returned to B.C., and her mother died shortly after.
"Our last words together, all of this time, was robbed from me, from both of my parents," said Sherman.
Sherman contrasts the way she was treated by the facility with the family-centred model of care they use in her own work as a neonatal ICU nurse.
"In this model, the family's welcomed as an essential partner in care, integral to all aspects of care and decision-making," she said.
Families not seen as allies, says group
Sherman's story was included among 70 others in the Long Term Care Visitation Horror Stories report compiled by ACE, Advocates for Care of the Elderly.
Spokesman Paul Jenkinson said Sherman's story is emblematic of his group's concerns.
"She comes to Nova Scotia and meets a long-term care system who fundamentally sees her as a problem, an irritant, a person who takes up time rather than a health ally," Jenkinson said in an interview on Information Morning.
Jenkinson said ACE doesn't believe care homes should be able to override Public Health recommendations and make their own rules regarding the access of designated caregivers. This, he argued, leads to arbitrary rules and unequal visitation rights across the province.
In the report, ACE recommended introducing legislation to ensure uniform access for designated caregivers across the province according to current Public Health recommendations. If a care home feels its situation is exceptional and requires stricter measures, Jenkinson said, it should have to apply to the province for an exemption.
ACE also recommended the creation of an independent body to field and investigate families' complaints and concerns.
"It's very difficult for families to complain about lack of visitation or anything else because they greatly fear that their senior may receive less than adequate care because they complained or they may be seen as a problem," Jenkinson said.
The group's report was sent to Barbara Adams, the province's minister of seniors and long-term care, on June 14.
'Tremendously difficult' time in long-term care
In a statement sent to CBC News, Adams said the last few years have been incredibly difficult and acknowledged both the tireless work of long-term care staff and the sacrifices made by families.
"We know that was tremendously difficult, and we also know it saved lives," Adams said.
She said a key challenge of the pandemic was balancing the protection of the elderly and most vulnerable from disease with the importance of social interaction and the need to be with loved ones.
"Many of these stories occurred years ago and the constantly changing variants and public health rules were a challenge for everyone," she said in the statement.
Adams said she will continue meeting with families and staff and listen to their ideas and stories. She said her department is also working to bring consistency in the hours of care residents receive and is taking steps to increase training and wages for CCAs.
With files from Information Morning Nova Scotia