“It wasn’t fair, the fact that she was diagnosed at such a young age,” said Kathy Norris-Wilhelm.
In 2016, Jean Norris-Wilhelm, a long-time math teacher, received a devastating diagnosis. At just 55 years old, doctors revealed she had early-onset Alzheimers.
“She was ever the warrior, Jean was a natural leader, we just ran into the storm, we didn’t run away,” said Kathy.
Kathy watched as her wife Jean took on the unknown. An unforgiving disease that steals your memory, language, and the person you once were.
For the first few years, Kathy, friends, and family cared for Jean. But as the disease progressed, so did Jean's needs.
“It’s everything from dressing, cleaning, cooking, brushing your teeth, showers, as the disease is progressing, it’s just more and more and more and more,” said Kathy.
It quickly became obvious Kathy couldn’t do it alone. But Jean had always said she wanted to live and die at home.
“It is utterly insane that families have to go bankrupt just to care for their loved ones, it is absolutely unnecessary,” said Kathy.
Kathy looked at in-home care but none of it was covered under insurance or Medicare. In the end, she took out a home equity loan just to pay for the extra help.
“I’m personally going down to the capitol here and spending a lot of time in Washington D.C. to try and figure out how we can make care affordable for everybody,” said Bob Roth with Cypress Home Care Solutions.
Roth is the managing partner for Cypress Home Care Solutions, a Valley company providing professional caregivers in at-home settings. Right now the cost of at-home caregiving is paid for the most part out of pocket without much help coming from Medicare or private insurance programs. The Medicaid system does offer some help with costs but is only available to those who have no financial resources or who have fully exhausted them. It also generally pays only for care in nursing homes. Something many are hesitant to use following the pandemic.
“Our pricing for employer-based home care agencies has gone up close to 100% in the last ten years and consumers do not have more discretionary dollars, and we need to be able to help them,” said Roth.
Private insurance companies do offer long-term care insurance but the premiums are extremely expensive and out of reach of many who would need them most. Fewer insurance companies are even offering those policies since mispricing them in the 90s and early 2000s. Not only has the out-of-pocket cost gone up, but there’s also a shortage of workers. But as baby boomers retire in record numbers the need for home care is only going to get greater.
“We all knew that 10,000 baby boomers were turning 65 every single day, that started in 2011, we’re almost at 2022, so they all started turning 75 this year,” said Roth.
Research by the Insured Retirement Institute found that 45% of boomers have no retirement savings and more than a quarter of those who do have less than $100,000. Based on data from the long-running Health and Retirement Study at the University of Michigan, the center estimates that 20% of Americans will not need long-term care services before they die, about 55% will have low to moderate needs and 25% will have “the type of severe needs that most people dread.”
It also estimates that 33% of retirees don’t have resources to cover even minimal long-term care needs, and only a fifth could afford “severe” long-term care needs of four years or more.
Both Kathy and Bob are now advocating lawmakers help force insurance companies, Medicaid, and Medicare to provide more financial support so families don’t go without what they need.
“We met our state and local legislators, we need funding to help families like us,” said Kathy.
To learn about more resources, visit Family Caregiver Alliance's website and AARP Arizona.
