Waliah RaKhem worries that someday soon, her mom won’t remember her.
The 73-year-old, who has dementia, has been separated from her family since March, when the coronavirus swept across the country and forced her St. Louis nursing home to shut its doors to visitors.
“Imagine waking up, not knowing who you are or where you are, not being able to talk to your family,” RaKhem said. “I don’t want my mom to suffer like this.”
To keep a stronger connection, RaKhem and her siblings purchased a Google tablet for about $250 and installed it in their mother’s room at Life Care Center of St. Louis.
Under a new Missouri law that went into effect in August, families are allowed to set up cameras in the rooms of nursing home residents, with certain restrictions. But the logistics of installing these devices during a pandemic have proven challenging, leading to months of frustration for some families.
Missouri lawmakers passed the Authorized Electronic Monitoring in Long-Term Care Facilities Act in July, following a yearslong debate that pitted resident advocates against some nursing home industry groups.
Ensuring the safety of nursing home residents and strengthening family relationships was always the goal of the legislation, said Jo Anne Morrow of the Missouri Coalition for Quality Care, an advocacy group that supported the measure for years. But the pandemic propelled this issue into the spotlight, she added.
“Particularly [at] this time, when relatives aren't able to get into the nursing home to see their loved ones, it's very difficult for them to assess what's going on,” Morrow said. “It’s not the solution to everything, but it’s a tool.”
‘A process of negotiation’
For a few days, RaKhem was able to check in on her mom periodically throughout the day, as she ate her meals and napped.
But then, the feed abruptly disappeared.
Life Care Center staff had turned off the tablet and removed it from her mother’s room.
The facility’s director told RaKhem that state law required her to submit an application to the Missouri Department of Health and Senior Services and get permission from her mother’s roommate. She did both, and for the past two months, she’s been waiting for staff to return the tablet to her mother’s room.
"Imagine waking up, not knowing who you are or where you are, not being able to talk to your family."
“It’s just been a constant runaround,” RaKhem said. “In the beginning, it was like, ‘Well, we have to check with our corporate office.’ ‘Now we have to check with the state.’ ‘OK, now we got to get the paperwork.’ I mean, stall after stall after stall.”
A spokesperson for Life Care Centers of America declined to answer questions about the status of RaKhem’s application, citing patient privacy, but said their legal team is “currently reviewing all the documentation from the state to ensure that we handle any requests properly.”
While a facility cannot refuse a resident or family’s request to install a camera, the law does not specify a timeline for when it has to be done, said Chien Hung, program director at VOYCE, a St. Louis nonprofit that pushed for the camera legislation.
The pandemic has complicated matters, as nursing homes grapple with staff shortages and work to keep the coronavirus from infecting high-risk elderly residents. To get a camera installed over the next several months, families and staff must cooperate with one another, Hung said.
“This is actually a process of negotiation,” he said. “If you don't compromise, then things probably will not get done until after COVID.”
A key challenge is physically installing the camera in the resident's room. Facilities are not required to allow relatives or contractors inside to set up the devices and may be wary of visitors who could spread the virus inside facilities.
“Let's say there are 20 households in this facility that want to get their camera installed, then we're talking about at least 20 visitors, and that’s actually very dangerous,” Hung said, adding that he has advised facilities to consider hiring a single contractor to do the installations.
In some nursing homes, however, staff members have taken on the task of installing the cameras themselves.
Mary Ann Schroeder, social services director at McKnight Place Extended Care in St. Louis County, recently positioned a camera in a resident’s room while his family stood outside the window.
“At first everybody said, ‘Oh my gosh, this is to get us in trouble,’” Schroeder said. “I think we were all concerned [about] what is the intent, what is the purpose? But the family said right away, ‘We just want to make sure our loved one is safe and see if we can help,’ and that's truly how it has been.”
The electronic monitoring law prohibits anyone from releasing recordings without written permission from the resident or guardian and the facility, except during investigations of abuse or neglect.
Waliah RaKhem stresses that she’s not trying to “spy” on the staff at Life Care Center. In fact, she believes staff are taking good care of her mom and has appreciated the handful of times when nurses have used their personal cellphones to set up a video call with her.
Still, she feels anxious, knowing how quickly her mom’s dementia is progressing.
“We just want to make sure she still remembers us, that she’s not scared,” RaKhem said. “I don’t want her to get lost. I’m just trying to do what I can so she’s not lost.”
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