Editor’s Note: This is the 13th installment of “Our Stories,” a WOW Dems series that tells personal stories related to the critical issues of our time, such as the COVID-19 crisis. This post was written by WOW Dems Candidate Committee member Laura Dapkus.
Our personal story
My husband has not seen his mother, Margaret, for more than 138 days. She lives in an assisted living facility in McKinney, Texas, that has reported no coronavirus cases. Next door, coronavirus killed five residents in a memory care facility. The facility we almost chose, also in McKinney, had an outbreak that raged for a month and killed 11 residents (12 altogether) before the fire department finally tested all residents and staff in early May.
In mid-March, long-term care (LTC) facilities stopped allowing residents to have visitors, group activities, or communal dining. This decision was prudent since by March 3, Life Care Center in Kirkland, WA had become the epicenter of the virus in the United States. Americans accepted that our loved ones in LTC were safer in isolation while we flattened the curve to protect the most vulnerable.
Texas vs. other states
In Texas, what actually happened is that Lt. Gov. Dan Patrick said grandparents are willing to die to save the economy for their grandkids. Gov. Greg Abbott decided the economic and political cost of a shutdown just wasn’t worth it and reopened the economy well before federal guidelines were met. Abbott didn’t issue a politically unpopular (among his base, at least) mask mandate until July 2. Local governments can’t issue orders more stringent than the governor’s, no matter how rampant the virus is in their communities.
In mid-June, Texas was finalizing rules allowing family visits in LTC facilities. We were hopeful we would finally be able to visit Margaret since her facility had not had any cases. Unfortunately, spread in the DFW area skyrocketed, and there has been no progress regarding visitation other than “compassionate care” visits, which facilities confine strictly to end-of-life cases.
At least 26 states allow visits, but not Texas – not even outdoors, with masks and gowns, socially distanced, or with plexiglass barriers. Window visits and virtual visits using tablets or phones are inadequate, and for people with dementia, these visits can be disorienting and even scary.
Graphic credit: @teawithami | artists4longtermcare.org
Many nursing home residents depend on family members to perform tasks staff can’t or won’t do, such as eating, hygiene, and meeting emotional needs. Some states allow “essential caregiver” access, but Texas residents are simply going without. People in nursing homes and memory care suffer the most with weight loss, depression, delusions, and loss of the will to live.
How hard has coronavirus hit Texas LTC facilities?
According to the Texas Department of State Health Services, as of July 27, 1,894 nursing home residents and 255 assisted living residents died of coronavirus in Texas.
In public health region 2/3 (the DFW Metroplex), 406 nursing home residents and 106 assisted living residents died from coronavirus.
For more than four months, the public and families gleaned bits of information from scant news reports, social media, and press releases. In May, the Center for Medicare and Medicaid Services (CMS) began publishing cases by facility, but only from May onward, and not for assisted living. And then, finally, on July 27, the Texas Health and Human Services Commission (HHSC) released spreadsheets with facility names and their reported cases and fatalities. This is the most complete picture yet of coronavirus in Texas’ LTC facilities as it names all nursing homes, assisted living facilities, and state hospitals.
What don’t we know?
- How Governor Abbott’s reopening of the state affected cases in Texas LTC facilities. Texas did not report even aggregated regional LTC case numbers until May 15.
- How many staff members have been killed by working in our assisted living facilities and state hospitals.
- Inequities among residents or staff who are members of marginalized groups. In states collecting demographic data, nursing homes with the fewest white patients had more coronavirus cases and deaths.
- Actual living conditions inside LTC facilities, as they remain off-limits to families and even to the ombudsmen (who are state employees).
In early March, Dr. Peter Hotez of The Baylor College of Medicine told Congress: “Look what this virus did to that nursing home in Kirkland, Washington…this is like the angel of death for older individuals.” Locking out family visitors was well-intentioned, but we seemed to forget the part where we control the virus as a whole.
After all, since the residents cannot leave, they catch the virus from the staff, who are catching it from the community. As sneaky and contagious as this virus is, the only way to protect our elders is to reduce its presence. Other than a tardy mask mandate, Gov. Abbott has done little to bring the virus down to levels seen in Europe, Asia, and the northeast United States.
What you can do
My mother-in-law will be fine. Margaret can handle most of her daily activities and engages electronically with us and her friends and family back home. She has a private apartment in a nearly new, private-pay facility, but we realize not everyone is as privileged. America and Texas are not going to be fine unless we elect people who will follow the science on public health issues. I hope you will join me in supporting candidates who will expand healthcare access, increase funding to caregiving, and hold institutions accountable for failing to protect our most vulnerable people.
How you can help:
The National Consumer Voice for Quality Long Term Care offers news, updates and ways to take action.
Use AARP’s easy tool to reach out to your lawmakers and urge them to protect nursing home residents now.
If you need help:
Office of the Long-Term Care Ombudsman – Long-Term Care ombudsmen are advocates for the rights of anybody who lives in a nursing home or an assisted living facility. Although ombudsmen are still not allowed to enter facilities, they can answer any questions you may have and resolve problems with facilities.
We want to share YOUR story as part of the “Our Stories” series! Send them to communications@wowdems.org.
Sources & Additional Info
Joe Biden’s Plan – Staffing and infection control in nursing homes was inadequate even before the pandemic hit. Joe Biden has a plan that would allocate more than $400 billion on caregiving for older Americans. Joe intends to reduce Medicaid wait list times for home and community care services and provide tax breaks to caregivers for older family members. Most of the cost would be covered by limiting tax loopholes and exemptions for real estate investors. View Biden’s plan here.
NH and ALF deaths – Cumulative Long-Term Care Facility Data by Public Health Region (PHR).