NORFOLK, Va. — The lifetime cost of caring for a loved one with dementia can reach well beyond $300,000, according to recent data from the Alzheimer's Association, much of which might not get covered my Medicare or Medicaid.
While you can't put a price on caring for someone you love, that financial burden can be heavy.
Lawmakers in Washington, D.C. are working on a bill that would provide a tax credit that would potentially lift some of that weight, and one Hampton Roads family—the Rivera's—told News 3's Jay Greene that help can't come fast enough.
Jess and Rosey Rivera met through their church in 2018, then they got married in 2021.
"He was doing a conversion class for people who wanted to get their sacraments in the Catholic Church. I was working with the English speaking adults and he was working with the Spanish people. And that's how we met," Rosey said.
As they were planning a beautiful wedding, Rosey started noticing a trend in Jess's ability to remember some things.
"I had noticed some misunderstandings happening between the two of us," Rosey said. "I had tried to urge him to go and get checked out. And eventually he conceded and we did go to a neuropsychologist that ran a day long battery of tests."
The results came back just a few days before their wedding—Jess, who is in 50's, was diagnosed with early onset Alzheimer's Disease, Rosey told Greene.
Rosey said Jess had been in the mild cognitive decline stage when the couple first met.
"He was still functioning very highly being able to go to work and remembered, you know, dates and appointments. So he was very, very independent," Rosey said. "And then a year into it. It became moderate. And then in the last six months, it's become severe moderate, so we're at the end of the moderate stage."
The next stage is severe, but it's no match for their faith and love.
"I think our faith has a lot. I mean that's the foundation of our marriage," Rosey said. "That is what attracted to me to him."
During the interview, Greene asked Jess about his time in the Navy. He could remember somethings.
But when Greene asked about some recent projects around the house, it was a bit harder to remember before Rosey helped jog his memory just a little bit.
She said she continues to notice declines week-by-week, and the profound increments hit about every three months. Emptying the dishwasher is an example.
"Everything that you pick up out of that is a decision and he has a really hard time making decisions," Rosey said. "He's much better at loading the dishwasher, but the putting the things back away where they belong is much more challenging."
The couple said they've made some renovations to their Hampton Roads home to make it safer for Jess, including installing special locks and cameras.
"We need to have the cameras so that if I'm running an errand, I can keep tabs on everything," she said.
And the renovations weren't cheap—coming to at least $10,000.
They've also researched options for in-home care for the future.
"It would all be out of pocket. So I have asked for some special accommodations at work so that I can work remote on some days. My mother steps in and spends the day over there. And his local kids do help as well," Rosey said.
All of the expenses, so far, have been out-of-pocket, and that would likely be the case moving forward.
Lawmakers in the nation's capitol are working out details of a bill—the Credit for Caring Act—which would provide up to a $5,000 tax credit for eligible, working families who pay out-of-pocket costs to care for a loved one. It would apply to families who have spent more than $2,000 whether it be on transportation, in-home care, etc.
The bill, which was introduced by Ohio Congressman Mike Carey in the U.S. House and by Senator Michael Bennett (D-Colo.) in the U.S. Senate, is still in committee but has already gained support from both sides of the aisle in the House and Senate.
Congresswoman Jen Kiggans (R-Va.) is a co-sponsor of the bill. She told Greene it incentivizes care giving at home.
"We have some wonderful, wonderful facilities out there. But facility level care isn't for everyone," Congresswoman Kiggans said. "As a nurse practitioner, I saw that the best health health outcomes for my patients when they were cared for in homes by loved ones."
The bill, which is still in committee, also has co-sponsorhip from Represenative Don Davis (D-N.C.) who represents portions of Northeastern North Carolina.
“Family caregivers are unsung heroes, providing essential care and support to their loved ones, often with little recognition or assistance,” said Congressman Davis in a statement to News 3. “The Credit for Caring Act acknowledges the invaluable role of caregivers, who provide much-needed financial relief, allowing us to give back to those who selflessly dedicate themselves to the well-being of others.”
Jess and Rosey said the credit would provide more than financial relief.
"It would be a huge it would take away a little bit of the fear of if I lose my job," said Rosey, who is currently able to work from home a bit. "When I'm at work, I'm thinking about 'What is he doing? Is he okay? Has he eaten?' So it's not just a financial stretch, which is why we haven't had somebody in yet, but it's also a huge stress psychologically."
For now, Rosey said it's a routine that helps Jess get through each day—making Puerto Rican coffee in the morning, for example.
But it's also faith.
"That's what we have to keep going back to is our faith," Rosey said.
