Every morning at 10:30, Susan Mills stands outside the nursing-home window and, using her cellphone, speaks and sometimes sings to her mother via a speaker phone on the other side of the glass.
“I can see the loneliness in her eyes,” she says.
Barbara Mills, 84, has dementia. For more than a year since she moved into The Grove nursing home in Arnprior, Ont., her daughter came every day, sat by her side and helped with her care, feeding and other daily activities.
That routine ended abruptly on March 15, when strict visitor restrictions were imposed.
“It’s cruel and inhumane,” the younger Ms. Mills says. “You don’t lock out family. You don’t turn away caregivers when they’re so badly needed.”
On Monday, Marguerite Blais, Quebec’s Minister of Seniors, used similar language in announcing a dramatic shift in policy. “It’s inhumane that someone can’t see a loved one for two months,” she said as the province eased the nursing-home lockdown. Residents can now walk outside alone, and visit with family outdoors – with physical distancing, of course.
Quebec, despite the horror shows unfolding in its long-term care homes (or maybe because of it), is also urging family caregivers to return and help. In addition, the province will allow family members to be at the side of loved ones if they are dying, another ritual lost to the pandemic.
The question now is whether other jurisdictions will have the good sense to follow suit. Ms. Mills sure hopes so.
Dr. Horacio Arruda, Quebec’s Director of Public Health, said that while shutting down movement in and out of nursing homes and long-term care facilities was necessary to slow the spread of disease, it has had deleterious effects.
Healthy seniors, deprived of activity and social interactions, are suffering from loss of mobility, cognitive declines and high rates of depression. These, in turn, lead to more illness and falls.
For those with more serious health conditions – and almost two-thirds of long-term care residents are living with dementia – the effects are even greater.
The senior Ms. Mills, for example, has started using a wheelchair. “I know my mom will never walk again. After all these weeks of inactivity, she’s lost function,” her daughter says.
She can only guess at the state of her mom’s cognitive decline. “I don’t think she knows what’s going on anymore. I can only hope that she stays alive and remembers us when we can finally return,” the junior Ms. Mills says.
Quebec’s policy change, billed as a humanitarian gesture, is also a tacit admission that understaffed seniors’ care facilities never have and never will be able to meet residents’ needs without the essential contributions of family caregivers. (This applies doubly to caregivers of children with severe disabilities who require institutional care.)
The underpaid, overworked personal support workers and orderlies in these homes barely have the time to complete the most essential of chores such as feeding, toileting and bathing. To think they would be able to also take residents for walks or sit down and converse with them was never a realistic expectation.
The stories of neglect and despair that have emerged from the front lines of Quebec facilities are blood-curdling. If anything, shutting out family members allowed neglect and abuse to go unchecked.
A research study, conducted in France, actually concluded that “confinement syndrome” – cutting off institutionalized seniors from their families – will ultimately be as deadly as COVID-19.
In fact, what family members resent most about the lockout is being treated as visitors rather than essential members of the care team.
PSWs, nurses and doctors are not at the bedside 24 hours a day. Family caregivers are principal conveyors and co-ordinators of care for those with the greatest and most constant needs, such as frail seniors with dementia.
There have been many mistakes in the handling of the coronavirus crisis, particularly in long-term care homes. But one of the most harmful may have been to view family members as nothing more than vectors for disease transmission rather than essential supports.
Letting confined healthy seniors take a breath of fresh air, literally and figuratively, carries some risks. So too does allowing families back into long-term care homes.
It is also has many potential benefits: some much-needed hands on deck, some solace for frightened residents and, above all, the comforting presence and healing power of family.
Safety matters. But it can’t be allowed to trump dignity, and expressions of love and humanity.
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