Every night since March 2020, Brianna Grech has ended her day the same way: She tucks in her two children and then descends the stairs to her basement, where she tucks in her 70-year-old mother. The two say their prayers together before turning out the lights.
Irma Welsch, who suffers from a rare brain disease called progressive supranuclear palsy, is at home with Grech now — because Grech couldn’t bear the thought of losing more of their limited time together during the coronavirus pandemic, and pulled Welsch out of her assisted living facility.
It turns out her rash decision may have saved her mother’s life, helping her avoid the outbreaks that plagued long-term care facilities across the country. Though less than 1% of the population lives in a long-term care facility, that group made up 38% of all Covid-19 deaths through the end of 2020, according to a Health Affairs report.
Grech is lucky: Her mom has long-term care insurance, providing a cushion for the potentially heavy financial toll. The two home care agencies that help her take care of her mom would cost about $2,000 each week out of pocket — more than $100,000 a year.
“I absolutely loved having her here and taking care of her,” Grech said. “It was stressful and it was hard,” she added, but “I don’t want to lose this time with her that I will never get back.”
As Grech’s story underscores, pulling a loved one out of a long-term care facility when the pandemic hit was often a great alternative — for those who could afford it. It sparked closer relationships with older family members, especially as they neared the end of their life. But it also raised questions about the financial accessibility of home care and general discrepancies in long-term care policy.
“[Covid] made people worry more about quality of care, worry about the isolation, whether someone was getting the care that they should have been getting,” said Christina Irving, director of client services at Family Caregiving Alliance. “And so it’s understandable that some families chose to bring someone home when they were in the position to be able to do that.”’
But for some, taking their loved one out of a long-term care facility is not an option. Paying for home care out of pocket can run a steep price tag, depending on the state and amount of care required. In Pittsburgh, for example, a home caregiver that works 40 hours a week costs around $4,000 per month, slightly more than an assisted living facility.
Chronic conditions, like dementia, require around-the-clock care. A home caregiver that works hands-on, 24/7 can cost more than $17,000 each month, significantly more than a private nursing home room, which hovers around $10,000.
Although Grech avoided harsh expenses through long-term care insurance, fewer than 1 in 30 Americans have long-term care coverage, and for those who are seeking it, it can be hard to find. Many employers have stopped offering it, and government coverage is slim. Grech said the only reason her mother bought it was because an insurance broker friend recommended it decades ago.
“All that type of care is expensive and unless somebody qualifies for Medicaid, there is a huge out-of-pocket expense for families,” Irving said. “It’s not always feasible for families to keep somebody at home with the level of support that might be needed.”
Medicare doesn’t offer a full range of long-term care services, and only those who are very low-income or have completely exhausted their savings are eligible for Medicaid.
“You have a huge amount of people that sort of fall in the middle, so they have too much money for Medicaid, but they’re unable to afford expensive care,” Sue Peschin, president and CEO of Alliance for Aging Research, said.
Those who can’t access professional home care may opt to take care of the family member themselves. As a result, unpaid caregivers with full-time jobs are forced to take time off, or quit, reducing income. Women make up about 61% of family caregivers, Peschin said, and they are disproportionately more likely to leave the workforce for that reason.
“White, wealthier folks are definitely going to take a lesson from Covid and look for more home-based care options” because of the high-profile problems that patients in long-term care facilities faced during the pandemic, Peschin said. “Communities of color and poor folks are going to be … left with similar options to what they had before and during the pandemic.”
Advocates have pushed for policy changes to ensure more people have access to the benefits of home care. The Biden administration has proposed a $400 billion expansion of Medicaid to cover more home and community-based care.
Now that long-term care facilities have relaxed visitation policies, Grech and her husband have had discussions about bringing her mother back into assisted living. But Grech isn’t sure if she is willing. “I just don’t know if I can let her go,” she said.
Their long-term care insurance only provides up to five years of home care coverage, leaving them with another year or so before it runs out. Then, they may be forced to move her back into an assisted living facility due to the steep costs.
In the meantime, Grech’s mother continues to live at home with her, watching her grandchildren grow up. “We’ve had some unforgettable moments together,” Grech said. “She gets to watch my life unfold.”