From the CBC:
“Restrictions
on care home visits traumatize families, caregivers”
It's a sunny
fall day but there's a chill in the air, so Laura Meffen grabs an extra layer
before she and her son head to their van, smiling and balancing bags full of
toys and snacks. They're off to see Meffen's 22-year-old daughter Emily, who
lives in a care facility a few kilometres away. The home recently allowed
outdoor visits, for about an hour each time. Meffen chases away the thought of
how quickly that time goes by. "I try not to think of the ending,"
Meffen says, her eyes watering. "I think of the joy, the laughter, the fun
we have. I always make the visits fun for her. And we just try not to think of
the end." Like many families and caregivers with family members in care
settings, the pandemic has taken an emotional toll on Meffen. From full
lockdowns to the more recent restricted visits, many like Meffen have spent the
entire pandemic desperately trying to get closer to the ones they love.
Emily has lived
at Participation House in Markham, Ont., for the past two years. Participation
House is a care setting for adults with severe disabilities. Emily has a
neuro-degenerative disease and requires round-the-clock care. When the pandemic
hit the home in April, Emily got infected and so did Meffen. They've recovered,
although Meffen still battles fatigue and a cough. Her bigger fight now is
against the agonizing uncertainty of what comes next. "We went through a
lot with COVID, it was traumatic. It really was. So I understand not being able
to go in, but I need to be with my daughter. I need to make sure she's OK. I
need to have her know that I'm there, that I haven't abandoned her." Emily
squeals in delight as a staff member wheels her out to meet with her mother and
brother under a gazebo on the home's grounds. She has limited verbal skills,
but there's no mistaking her joy — and her confusion, too, as she reaches out
for a hug and no one leans in. Meffen has to keep her distance. And it's
tearing her apart. "It's the hardest thing I've ever had to do, not being
there with her and being able to comfort her like a mother can only comfort a
daughter. It just, it devastates me."
(Marla DiGiacomo, right, had to fight hard to see her mother Helen in a long-term care home during the COVID-19 lockdown)
'She needed
love and attention' For Marla DiGiacomo, the pandemic has been an
exhausting battle. DiGiacomo helped organize one protest after another in front
of Extendicare Guildwood, a long-term care facility in Toronto where her
86-year-old mother Helen, who has dementia, has lived for the past nine years.
DiGiacomo's mother also got COVID-19 but had no symptoms, although she was
weak. DiGiacomo fought hard for the right to see her mother, and two
months after the lockdown, she finally did. It was a window visit, and the
sight of her mother devastated her. "When we first saw her, she was
in such terrible condition," DiGiacomo says. "She had lost 30 pounds.
She was unresponsive." DiGiacomo went back to the home the day
after that first window visit during mealtime, and saw a staff member leave a
tray of food at her mother's bedside. Her mother struggled to get to it. "I
was outside the window and she was trying to get the food with her hands.
That's when I just lost it. I realized she hadn't been fed — nobody was helping
her, assisting her. She was incapable of feeding herself." DiGiacomo
says she immediately started to advocate for better care, and to be allowed
inside to be with her mother. She argued her mother needed not only nutrition,
but was starving for affection too. "I approached them and said
look, my mother is lacking human contact. She needs affection, attention, and
touch. That's what she needed as much as food. She needed love and
attention." It took weeks of relentless pressure before DiGiacomo
was finally allowed inside in August. Since then, Ontario has issued a
directive clarifying that essential visitors include caregivers. But directives
can change, and DiGiacomo is afraid of being shut out again. Family
caregivers can visit Ontario long-term care homes with no time limits, province
clarified.= The impact on her mental health, she says, has been enormous. She
says she cries often, can't sleep and feels a constant sense of dread. There's
a raw agony in her voice, even now. "It's taken a large toll. I've
aged, you know? And I'm scared. I'm scared that she'll get it again. I'm scared
of what will happen there.
Ensuring
caregiver rights The trauma caregivers have experienced and the toll taken
on them has been eclipsed by the brunt of illness and deaths in long-term care
settings since the pandemic, but that doesn't make it any less concerning. "Over
my 10 years of studying caregiving, I've never seen anything like this kind of
burden or trauma placed on caregivers," says Vivian Stamatopoulos, an
associate teaching professor at Ontario Tech University who specializes in
family caregiving. "It's tantamount to a form of post-traumatic
stress caused from forced helplessness." Stamatopoulos is an
outspoken critic of systemic failings in long-term care, especially chronic
staff shortages. She says prior to the pandemic, families filled gaps in care, often
visiting during mealtimes to make sure their loved ones were eating and to make
sure they were safe. It's why Stamatopoulos says it was so hard for them to be
forced out by COVID-19. "That kind of trauma — of knowing that you
can help, and you're available to help and you want to help, and you had been
helping for God knows how long before the pandemic struck, however long that
loved one was in care. That is the story that really hasn't been out there, and
which should get out there, because it's a very serious level of trauma."
Restrictions in most care settings have eased since the initial pandemic
lockdown, but policies vary from home to home and the fear is that the access
won't last. Stamatopoulos's outspokenness has turned her into an
accidental advocate, she says. Dozens of families have reached out to her on
Twitter, and she's supporting them as they pressure the Ontario government to
pass legislation that would guarantee caregivers access at all times. Bill 203,
the More Than a Visitor Act, has been referred to the Ontario Standing
Committee on Social Policy. Families across the country are rallying for
similar laws. "We really need to get ahead of this and have this in
law," says Stamatopoulos. "Ontario right now is so close to setting
the precedent. I think it will really push the needle forward in terms of
caregiver rights." A law would clear the uncertainty, and give
caregivers the peace of mind of knowing what to expect even as pandemic
conditions change.
Back in
Markham, Laura Meffen's visit with her daughter Emily is winding down. She
packs away the toys she brought with her and tries to sound cheery as Emily
grows quiet, as she does at the end of every visit. Emily's home hasn't
guaranteed indoor visits when it gets too cold to meet outside. With COVID-19
cases on the rise again, Meffen is afraid of more restrictions. Afraid every
visit could be the last one for some time. The hardest part for Meffen is when
Emily wants to know when her mother will come back. "And I can't tell her.
I don't know when I will be able to see her again. I don't know when I'm going
to be able to give her a hug again, and be in the same room with her, and be
able to take her home. And that is heartbreaking. It's heart wrenching."
^ Our best and
our brightest are the real victims in all of this political and medical chaos
caused by Covid-19. ^
https://www.cbc.ca/news/health/pandemic-covid-caregivers-trauma-anxiety-1.5765027
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