Kingston family seeks changes to ‘cruel and inhumane’ lockdowns in LTC homes
Isolated in a room for 21 consecutive days with barely enough space to move around in. Windows that cannot be opened, no fans allowed. Walks forbidden, even in the hallway outside. No visitors or family members permitted to enter the room, except for two primary caregivers, garbed in personal protective equipment (PPE) at all times. Food served on styrofoam dishes on a pull-out desk tray, to be eaten alone.
These are the living conditions that 84-year-old long-term care resident Shirley Hulley, suffering from dementia, experienced for the past month at Fairmount Home in Glenburnie, Ont., due to local and provincial health care legislation, according to Hulley’s family.
“That’s their definition of health care for residents of LTC homes? Isolating people is not health care,” said real-estate agent Patrick Hulley, Shirley’s son.
“I challenge (Ontario’s Chief Medical Officer of Health) Kieran Moore, (KFL&A Public Health Medical Officer of Health) Piotr Oglaza, (Ontario Premier) Doug Ford — anybody in that sector — to see what it’s like to be locked in your room for 21 days. This is not something that should happen anywhere,” he added.
Patrick admitted that the decisions made about lockdowns were well-intended: “They want to care and protect people from COVID-19. We get that. But the measures they are undertaking are essentially cruel and inhumane. Isolation and solitary confinement, in my understanding, can’t even be implemented in the prison systems. The people who make these decisions need to hear the impact of what they’re doing.”
Patrick and his siblings — Susan Hulley, a social worker and psychotherapist based in Ottawa, and Linda Hahn, an educational assistant — insisted that they have no issue with the retirement home itself, saying that the staff are “caring and compassionate.”
They simply want the legislation for mandatory isolation for LTC residents to “cease and desist.”
“I can confirm our mother was in solitary room confinement for seven days in December, due to a staff [member testing] positive. It ended on Tuesday, Dec. 21, 2021, [but was] re-instated on Boxing Day,” said Susan. “With repeated notifications of extension, it was eventually ended for our mother on Sunday, Jan. 16, 2022.”
Susan said her mother had been triple vaccinated and had no positive COVID-19 contacts with either the staff member or other residents in the LTC home during the 21-day isolation period. “Yet, despite that, her entire unit was put on lockdown.”
What I’ve seen repeatedly is the sense of hopelessness. And the shaking… she shakes and shakes. She desperately wants us not to leave her.”Susan Hulley
Susan and Linda, as the designated primary caregivers, are the only two members of their family allowed to visit their mother. Patrick hasn’t seen his mother in person for many months.
“It’s affecting our seniors that have limited time on this earth. What’s the point of getting tested [and] vaccinated when we can’t see our loved ones?” Patrick asked.
Susan said she feels that, as a primary caregiver, she’s not really visiting her mother when she attends the home. “We go in to provide care,” she said, noting that is done with only one caregiver present at a time.
Suicidal ideations, hopelessness, and fearfulness
“The thing about lockdowns and solitary room confinement is that they create a higher risk for confusion, depression, falls, and mood issues,” said Susan.
The three siblings recounted how their mother has changed from a lively resident who loved attending various recreational activities at the LTC home, to someone who is hopeless, fearful, and has suicidal ideations after being isolated.
“Mom is a gifted artist [who has] exhibited artwork in galleries all over the world. [She is] recognized for her watercolours [and] pen-and-ink sketches, and has raised thousands of dollars for causes,” Patrick shared.
The elderly in health care are the orphans of health care: the advocacy is not on the same level as it is for children.”Linda Hahn
Passionate about seeing her children, five grandchildren, and five great-grandchildren, Shirley’s love for her family was always evident, her children said. “They love her. Everyone calls her ‘Hulley,’” said Patrick.
These days, Susan revealed, their mother expresses hopelessness and fear. “What I’ve seen repeatedly is the sense of hopelessness. And the shaking… she shakes and shakes. She desperately wants us not to leave her. She will say, ‘I’m scared. Don’t leave me. I don’t want to be here.’ She is begging us to take her with us. I have not seen this before.”
Linda shared that her mother, who has had dementia for over 10 years, has had significant physical deterioration, including muscle atrophy, and has become totally care-dependent.
During their visits to the LTC home, the sisters have often included other residents who do not have caregivers in their visits, “to give them social stimulation. There are two ladies we used to sit with; their decline is significant. Another lady who was always cognizant… has stopped talking.”
Linda referred to a very lucid resident in a wheelchair. “‘I cannot go through this again, please do not let them do this to me. I cannot survive another lockdown in my room,’” she recalled the resident pleading, noting, “We are passionate about our mother, but we are also passionate about all residents in long-term care and their loved ones.”
Their mom is lucky, the siblings said, as her room is on the ground floor with a window facing outside, where family members throughout the pandemic had the chance to see her through the window, and talk to her through a speaker phone inside the room.
However, she doesn’t understand why her visitors can’t come in.
Orphans of health care
“We want to point out the impact of the lockdowns that already occurred, with decreased staffing and the inability to facilitate care. There’s been irreversible cognitive, physical, emotional, [and] mental health damage,” Susan said. “What are they doing to repair the damage? I want them to address the damage they’ve done to the residents.”
After sending a letter to the local Health Unit and members of the provincial government, the siblings said there has been no response.
“The Health Unit, the politicians: they are not listening to us,” said Patrick. “They work for us, [but] they forgot that a long time ago. They forgot that they represent health care when they implement legislation that they would put a parent in jail for implementing.”
Patrick laid out the changes their family hopes to see in LTC homes:
- More family access, so that additional family members can be tested and be able to visit loved ones,
- For new LTC residents’ mandatory 14-day isolation to end,
- A more respectful process when there are COVID-19 cases in a LTC home.
“The elderly in health care are the orphans of health care: the advocacy is not on the same level as it is for children,” Linda said. “I work in education; there’s a great impetus to keep schools open, lots of public, political, and social [support] … I want that same level, care and attention for the elderly. They’re also vulnerable. Many of them do not have the loved ones to press for political change.”
“We’re not anti-vaxxers, we’re not on the fringe. At the end of the day, the measures taken are inhumane,” Patrick concluded.
“We owe so much of what we have today to the people in these long-term care homes.”
3 thoughts on “Kingston family seeks changes to ‘cruel and inhumane’ lockdowns in LTC homes”
My mother-in-law is in the same situation in another care home in the Kingston area. She is 97. She doesn’t have dementia, but cannot walk. My wife and I are both classed as ‘essential care-givers’ and one of us visits her 6 days/ week. We, as are all the staff, are fully vaccinated. Sometimes there is a lock-down because of a staff or resident out-break in the wing. Sometimes we have to wear PPE and googles. Of course we are tested at each visit.
During ‘lock-downs,’ she is fed in her wheelchair [with a table] at the door to her room, sometimes in bed.
Although dementia patients have a difficult time understanding what’s going on and it must be frustrating for her family to deal w/ her frustration, the staff must abide by the guidelines sent from the Gov’t.
We receive emails, phone calls and up-dates in person when appropriate.
Being in this facility as much as I am, seeing the strain on all concerned, yet still having a friendly, helpful attitude at all times, towards my wife and I. I’m at a loss to find any reason to complain. Believe me, we would complain!!
This is not a warehousing situation, but decisions have to be made for the good of all. Taking this woman out of this residence to the family’s home seems the only quick solution. Legislation/changes take time.
What changes would the writer suggest be made within the stated goal of patient safety from possible death!! Throw money at it? Sure, who wouldn’t want more PSWs, better food etc.
We are in a war, people. Think big picture, please.
Maybe I’m missing something here.
I’m not a Ford supporter, the opposite.
I would have to agree with this family. LTC homes should be homes, not prisons. The residents should not be treated like inmates who have done wrong. It is unhealthy for all concerned. My heart goes out to all having to suffer through this.
This is a real dilemma, terrible. My mother’s dementia worsened exponentially during these lockdown periods, and sadly, she was on a second floor. (Niagara region.) We need to rethink large institutions for our beloved seniors. Even with caring staff, there are excellent alternatives, if our government will invest in them. However, the large institutions-corporations make millions for former premiers and others. Check out: https://www.seniorsactionontario.com/about. – Jerri J