Saturday marked exactly one year since nursing homes and long-term care facilities across Texas closed their doors to visitors. The pandemic and fear of COVID-19 outbreaks in facilities led to the shutdown, but over time loved ones say isolation and lack of contact contributed to declining health for many.
An advocacy group flew a banner over the Texas Capitol on the anniversary that read, "Isolation kills, too! Open long-term care facilities." It was a statement to lawmakers, many of whom were in Austin for the filing deadline for bills.
"A lot of loss, a lot of sorrow, a lot of grief," Mary Nichols said. "Frustration and all the superlatives you can think of, it’s just been a year of sad superlatives.”
Nichols started the group Texas Caregivers for Compromise in June 2020 -- three months after she wasn't able to see her mother.
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“It never occurred to me that this would be an all-out shutdown forever and ever until the citizens of Texas started kicking on the door," Nichols said.
She said she thought something would have been figured out in a span of weeks when the pandemic started.
Her mother, Martha is in a nursing home in Forney. She has Parkinson's, Alzheimer's and dementia. Martha can no longer speak, make eye contact, swallow or move on her own.
"My mom exists solely because of my reluctance to remove her feeding tube. I can't reconcile myself to starving my mother to death, especially since she has four children and is only allowed two essential caregivers," Nichols said. "So she has two children who still haven't had access."
Nichols has spent the last several months becoming an expert in state rules, regulations and policy. The group she started last summer has gained thousands of members and she's picked up many other strong-willed advocates like her self.
They were a driving force to pushing the state to allow essential caregivers, which included family and friends of residents, to visit inside nursing homes and long-term care facilities. But there is a training process to become a caregiver, there are time restrictions for visits and only two people are designated to an individual.
So when news broke that Gov. Greg Abbott (R) would be reopening the state to 100%, some thought that meant long-term care facilities too, but Nichols said, that wasn't the case.
"Texas is not 100% open until long-term care facilities are open and that was a miss understanding with a lot of people. They thought when he said 100% that it meant their loved ones' facilities, so there was a lot of confusion that week and we spent a lot of time that week and (the Health and Human Services Commission) spent a lot of time trying to clarify that with families that it did not apply to long-term care facilities," Nichols said.
New Guidelines Coming
Nichols said there were new rules coming from the Centers for Medicaid and Medicare Services (CMS) that would only apply to facilities that receive federal funding through Medicaid and Medicare.
She said they'll have to wait and see how HHSC would address these guidelines in an emergency rule.
"We do see some change coming and I expect to see that next week, I don’t’ know what that will look like," Nichols said.
She has been busy at the state Capitol providing comments about existing guidelines and potential guidelines.
A Year Later
Even though there's a possible light at the end of the tunnel, it's hard not to look back and see how the past few months were dark for many.
"March 13 represents one year from the day that I was told I’m not essential to the health and well-being of my mother," Nichols said. “March 13 is one year from the time I was no longer allowed to enter her facility at will when she needs me.”
She said March 12, 2020 was the last day of normalcy for her family and many others who have loved ones in long-term care facilities.
“March 13 was significant because it was a day of significant loss for a lot of people, it also marked the day they never saw their loved one again. So many people died from rapid cognitive decline and extreme weight loss that came from isolation protocols that were put in place," Nichols said. "It took time for Texas to realize that isolation and protocol were killing people in long-term care facilities, those were adjusted eventually, but it wasn’t in time those first six months killed a lot of people."
Though there's been some progress, Nichols said she still receives complaints from people who say facilities aren't allowing them in as caregivers due to a lack of understanding of the guidelines or choosing not to follow them.
"We have 1,222 nursing homes and over 2,000 assisted living and if I hear weekly there are at least one or two people being denied essential caregivers visitation or some other form of visitation end of life, compassionate care, or general visitation, you can only imagine of the 120,000 plus people living in LTC, how often that actually does happen," Nichols said.
She and others are working with politicians to make essential caregivers a law, and find a way to make sure those rights are not suspended the next time if and when there's a pandemic.
"There are two representatives and one senator who have filed resolutions to call for a constitutional amendment that would make essential caregivers an inalienable right that cannot be suspended or denied," Nichols said. "So the next pandemic, when they pause all those other rights, this one will not be paused and residents will be at least entitled to one person to come in that facility and look after them and remind them they have not been forgotten."
