AUSTIN, Texas – In Texas, 3.4 million people are caregivers, a role they are thrust into whether they choose it or not. And new data quantifies the value of their efforts.
According to AARP, Texas caregivers provided $35 billion worth of unpaid care in 2017.
Rose Puente of San Antonio has been a caregiver for both her parents, her aunt, her son and her husband. She says while it's a rewarding job, caregiving is a highly stressful and sometimes emotional experience.
"They all get to a point where they lose patience and I happen to be the one that kind of gets the brunt of that,” she says. “But it doesn’t take long for them to say, 'Thank you for what you’ve done, I’m sorry that I did that.'"
According to the Valuing the Invaluable report, family caregivers come from every age, racial and socioeconomic group, and 60% are balancing their caregiving duties with a paid job elsewhere.
November is Family Caregivers Month.
The report also reveals the complex responsibilities of a caregiver, which include patient advocacy, financial management, and assisting in daily living activities.
According to Amanda Fredriksen, associate state director of advocacy and outreach at AARP Texas, caregivers also are becoming increasingly responsible for complex medical tasks, such as wound care and medication management.
"That’s stressful and that’s taxing and caregivers need support,” she stresses. “They need help and training and they need to be able to ask questions of the professionals so that they can do right by their care recipients."
Texas lawmakers passed the CARE Act in 2017, which is helping to support family caregivers when their loved one is admitted to the hospital. This year, they provided funding for respite programs for caregivers.
Puente says she values any 'alone time' she can get.
"It’s important to take care of yourself,” she explains. “It’s important to know how to just take an hour to two hours a week, that’s what I look for. Just to be able to say, 'I need to take care of myself so I can take care of them.'"
The report notes that increasing demand for caregivers and shrinking families will make caregiving even more difficult in the years to come.
There were about seven potential family caregivers for every person age 80-plus in 2010. By the year 2030 that number could potentially be cut in half.
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Advocates for people age 65 and older urged Colorado lawmakers to fully fund a program helping people remain in their homes and avoid placement in assisted living facilities.
Jayla Sanchez-Warren, director of the Area Agency on Aging for the Denver Regional Council of Governments, said home-based services cost under $2,000 dollars per year, on average, compared to $74,000 for nursing homes. Since most people cannot afford the nursing home charges, state and federal taxpayers have to pick up the bill after their savings are gone.
"It saves money for individuals, it saves money for the state, and it keeps people where they want to be; living in their own homes," Sanchez-Warren emphasized. "Someone who needs help with preparing meals and maybe showering should not have to go to a nursing home."
Sanchez-Warren noted adequately funding home-delivered meals, transportation, in-home assistance and similar services would cost the state $20 million. The number of people age 65 and older is projected to rise from 928,000 to 1.3 million by 2035, according to Colorado State Demography office data, outnumbering people 18 and under over the next three decades.
Federal support for community based services has dropped, and state-based funding is stuck at 2019 levels.
Sara Schueneman, state director of AARP Colorado, said demand has risen dramatically. Nearly eight in 10 Coloradans say they want to age in place in their communities.
"There is a growing population of older adults in the state of Colorado, and there is growing demand," Schueneman pointed out. "We are trying to support more people with less money because there is so much need."
Advocates urged lawmakers to increase funding by at least $5 million in the state's annual budget, and increase the amount year over year to ensure people can access services.
Sanchez-Warren added right now, their largest transportation provider has a 700 person waiting list. If someone needs to get to a doctor's appointment or a dialysis treatment, they have to wait at least two months for a ride.
"You can't get a home delivered meal right now," Sanchez-Warren stressed. "It used to be where you would come out of the hospital, and maybe your doctor said you should get home-delivered meals. And within a couple of days we could get you into a program and there would be a meal at your door. Not anymore, it's on a waiting list."
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Senior and older-adult groups are frustrated by cuts to services in New York's budget proposal. This includes cuts to home-care programs and the Long-Term Care Ombudsman program.
It comes a year after Gov. Kathy Hochul announced the state's Master Plan for Aging, a legislative framework to help New York seniors age in place.
Rebecca Preve, executive director of the Association on Aging in New York, feels this lack of funding undercuts the state's dedication to helping seniors. She described how service providers are dealing with already low funding.
"And what that means is, if you go to your locality to ask for a home-delivered meal or a personal care aide to assist you in your home, because of the funding issue, a lot of people are being placed on waiting lists for those services," Preve explained. "In the state, currently, we have about 18,000 service lines that are waitlisted."
She added that doesn't begin to capture the numbers of people at a crisis point who are reaching out to their local Office for the Aging. The pandemic increased service demands for local Offices for the Aging. But the difference now is, there aren't any federal stimulus dollars going out to fund these programs -- and yet the need for services remains.
According to Preve, if the state doesn't boost this funding, seniors will either leave the state or possibly die from a lack of necessary services.
Without proper caregiving services, this responsibility falls to family members. An AARP report shows family caregivers in New York provided $39 billion in unpaid care in 2021 -- a $7 billion increase from 2019.
Preve noted without a fully funded support system to help them, things just get harder for these caregivers.
"We know that working caregivers are missing time at work. They're either leaving the job market entirely for their caregiving duties, or they're cutting down the number of hours that they're able to work," she stressed. "We know that the mental-health impact on caregivers is incredibly significant."
Considering the ongoing challenge, Preve isn't certain what lies ahead. She noted some people rely on skilled nursing facilities or Medicaid instead of Office for the Aging services. But some might make too much to qualify for Medicaid, making them ineligible.
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It's International Women's Day, and AARP is highlighting the important role older women will play in this year's election.
The organization recently conducted a survey on the priorities of women voters age 50 and older in the 2024 election. The rising cost of living topped the list for this group, along with concerns about caregiving.
"Women have varied life experiences," said AARP Oregon state director Bandana Shrestha. "They're not a monolith, but there are certain things that really stand out - related to financial security, related to family caregiving. They also feel like their voices are not heard and that they want elected officials to really pay attention to the issues that matter to them most."
Women in this age group are split nearly evenly when it comes to a choice between Joe Biden and Donald Trump in the 2024 presidential race. However, among women age 50 to 64, 15% are undecided, making this a large group that could swing either way.
People age 50 and older comprised nearly 60% of voters in Oregon's 2022 election, with more than half of them women. Shrestha said that's important in the upcoming election.
"They're a large voting bloc," she said. "They care about the issues, they are caring for their loved ones and often, especially those women in the middle, they're a sandwich generation. They're caring for the younger loved ones but they're also caring for their parents. So they're juggling a lot."
Shrestha said politicians should take note of women age 50 and older.
"There is a lot of stuff that can be done through policymaking and through prioritizing what is important to the real people, and this is a great year to do that," she said. "Women's History Month and International Women's Day is a great day to lift up the voices of women, especially women 50-plus."
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