Angela Biggs has a hair-thin line to walk during the pandemic.
She
doesn’t want to alienate the staff members who give her 29-year-old
daughter, Amber Reynolds, the care she needs at the Denton State
Supported Living Center. Amber and Briggs have a lot of love and respect
for the staff.
But
Biggs isn’t going to stop trying to connect with her daughter in spite
of the state lockdown policies that have kept her from seeing her
daughter since March 9, when she helped shepherd Amber through medical
tests — a process that can frighten and agitate Amber, who has
developmental disabilities and a brain injury from birth.
“Amber can’t speak for herself,” Biggs said. “Her yes doesn’t always mean yes, and her no doesn’t mean no. But my yes means yes, and my
no means no. And Amber understands that. She takes it very seriously
when I say, ‘I will see you soon.’ I can see where I am losing my
integrity with Amber. It just breaks my heart. I have always followed
through with her.”
The Denton
State Supported Living Center is considered an intermediate care
facility, and according to data state officials updated on Aug. 26, the
local center reports nine active cases of COVID-19 among residents and
16 among staff. Active cases refers to positive tests, and doesn't
reflect how many cases include symptoms. Until the facilities staff and
residents test negative for 14 consecutive days, visitors are not allowed in the center.
The
center is governed by Gov. Greg Abbott’s declaration of emergency in
response to COVID-19, which was recently extended for Texans in nursing
and long-term care living facilities through Sept. 29, according to an
email from the health commission. Now, long-term care centers can have
limited indoor and outdoor visits, but only if there are no active cases
of COVID among residents, if staff members have tested negative for 14
days, and there are enough staff to facilitate visits in compliance with
infection control requirements. For indoor visits, residents and
visitors must be separated with a Plexiglass safety barrier.
Biggs
is among caregivers demanding a better response for the elderly in
nursing and memory care facilities and Texans living in long-term care
facilities. Biggs has joined Texas Caregivers for Compromise, a group of
advocates that is petitioning the Texas Health and Human Services
Commission and the state Legislature to let them visit their loved ones
in person. Nichols collated the stories of Texans desperate to visit
their loved ones in nursing or long-term care centers.
“Because isolation kills too, that’s part of the name,”
Biggs said. “People are dying. They’re dying alone and untouched. It
doesn’t make any sense. People can come into the center from the outside
— plumbers, electricians. I get it that they have to be able to get
onto the campus. But they’re going into the residential units;
caregivers can’t. Judges can come in if they determine that it’s
essential. But guardians can’t. Amber is my child. I’m her guardian, not
the state.”
Through a Facebook
page, caregivers and advocates share stories of their loved ones’
progress or decline during the pandemic, and the group founder, Mary
Nichols, posts resources, webinars and videos from officials from the
commission.
The Denton center was hit hard by the novel coronavirus last March,
and Biggs said she went to the center hoping to see her daughter, who
suffers from acute psychosis occasionally but thrives on her routine.
Before the pandemic, Biggs would see her daughter twice a week, taking
her off the campus to shop and get some stimulation.
“She
loves going to Twice as Nice and picking out things for her friends,”
Biggs said, adding that the local thrift store is a bright spot for her
daughter. “She loves picking out things for her sister.”
She
took a bright, colorful care package for Amber but didn’t get to see
her daughter. It’s been almost six months since she has been able to
talk to Amber face to face. On the phone, Amber sometimes sounds
confused, and Biggs said she saw a note about her daughter leaving her
residence unit and wandering on the campus at night when she was
reviewing Amber’s more recent records. Biggs said she sees this as a
sign that her daughter is suffering in isolation, and vulnerable to
psychosis. All Briggs can offer her daughter are the Scriptures the two
love, singing silly songs and “pivoting” to lighthearted tones when
Amber sounds distressed.
The family moved Amber to the center in
2014, and Biggs said the staff gives her the care she needs. Biggs said
she “shadows and models” for the staff how to best interact with Amber,
who gets nervous during medical appointments. Amber has a medical test
coming up, Biggs said.
“That
means they have to put a mask on her, which she’s not going to do,”
Biggs said. “I’m worried that she’s not going to sleep. If she doesn’t
sleep, she can go into psychosis. She’s already sleeping on the couch
instead of her bed. And if she goes into psychosis, I can’t be there to
help her. I can’t be there to model for the staff what she needs.”
Biggs said it’s frustrating for caregivers, who understand both their role and the risks of COVID-19.
“What
happened to our rights and the rights of the residents?” Biggs said.
“We can’t even come up and go into the office. Judges can. Police can.
Medical students can. Why is that everyone under the sun can come in and
wear PPE — but we can’t?”
Biggs said Gov. Abbott is “playing God” with the state’s most vulnerable residents.
“Abbott
and Health and Human Services, they are the ones who have laid this
out. Their hands are on the rudder,” Biggs said. “I’m asking the
governor what good parent doesn’t take all precautions to prevent injury
and illness for their children? Abbott said earlier during the
pandemic, ‘We are Texans. We can do this. We can wash our hands and do
the social distancing.’ But we [caregivers] can’t be trusted? We have
given our trust over to the state. Amber is my child; she is not the
state’s.”
Biggs said caregivers feel abandoned by
Abbott and the state, and that the staff and administration at the
center are powerless to stoke connections that reinforce the rights of
residents.
“Abbott has robbed
us of the right and the joy of caring for our parents and our children,”
she said. “It’s moral injury. For us, the guardians, it’s a moral
injury ... It’s almost six months since I’ve seen my daughter. She’s
been wandering the campus at night. What if she gets off of the campus
and starts wandering there on the highway? I can’t help her. I’m not
allowed. What if she gets off of the campus and gets raped or killed?
Never finding her is one of my biggest fears aside from psychosis.
“We deserve so much better. Our loved ones deserve better.”
Full Article & Source:
Mama bear at the gate: Denton resident fears for daughter in lockdown at state living center
You are a great advocate for your daughter and all vulnerable people.
ReplyDeleteI can't imagine how people with special needs and elderly with cognitive problems can understand why they're being isolation. They must feel like they've done something wrong and are miserable. Thank you for this article.
ReplyDeleteAngela is Amber's voice during this unusual and difficult time for our nation and the world. I can understand the state leaders and the facility's fears during the past several months, their fear of losing just one resident.
ReplyDeleteI believe the time has come for society to learn how to live with COVID 19 vs surrendering to the silent, invisible enemy.
I believe it's time for the isolated loved ones to have contact with their loved ones, the time has come: the benefits of human touch and interraction far outweigh the risk of contracting COVID 19 or any other communicable infections.
All the best to Angela and Amber and all those who support Angela's mission.
If there's any good that came out of Covid, it is that it has started a national conversation about the devastating effects of isolation to our nation's elderly and disabled citizens who are left all alone to wonder why they are being "punished" or why their loved ones don't love them anymore or any scenario even worse.
ReplyDeleteThank you for stepping up to be a champion for these people, including your daughter, Angela.
"Mama Bear" is right!
ReplyDeleteThis is a heartbreaking story. Most people don't really know that in some guardianships elders and people with disabilities are isolated, too, purposefully for convenience. Isolation IS abuse. There must be a better way when it comes to covid.
ReplyDelete