Devoted daughter seeks help when caring for moms
Miriam Sabir reveals how Holladay, a Utah nursing home, helps her deal with the care of her aging mother, Connie.
Caroline Edwards, 59, helps her mother sit in bed every morning and give her a glass of water. She then tells the story of her mother’s life and points to a photograph of the family on the wall.
Her mother, Ingrid Martinez, began showing signs of Alzheimer’s disease in 2017, Edwards said. It started slowly, but now her mom needs 24/7 care.
“One day you realize her life and everything it is besieging — her home, her groceries and her personal care shopping, her dog, her garden, her taxes, her property tax, all her bills, all her bills, all of her – all of suddenly, in your hands, all of her bills, and everything is in your hands.
Now, more than ever, millions of Americans are wearing Edwards shoes.
According to a report published jointly by AARP and the National Care Union on July 24, “Care for the United States 2025,” one in four Americans is a caregiver. This is an increase of 45% over the past decade – over 20 million caregivers.
That number does not include people who care for the child without medical conditions or disabilities. The report was first conducted in 1997 and includes data from a national survey of around 7,000 family caregivers this year, estimateding that 91 million Americans are caring for children in households under the age of 18.
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“Family caregivers are the backbone of our health and long-term care systems. They often provide complex care at the expense of little or no training, sacrifice their financial future and their own health, and do so too often.” “As our population goes on, we must act boldly to support those who provide this important source of care.”
People are also providing care for longer. Almost 30% of caregivers have been providing care for more than five years, a 24% increase since 2015, the report found.
“Families are doing more. They are being asked to do more. They are taking on more. And it is affecting every member of the family,” AARP Senior Director of Caregiving, Rita Chola told USA Today.
There are several policies that have seen an increase in financial support for family caregivers in recent years, but the report says it was paid for the care provided by one in five family caregivers. Financial struggles are common among caregivers, with most survey respondents saying tax credits, paid leave and paid care programs would be helpful.
Caregivers said they needed help in other ways as well. Respite care, document support, better paid leave policy, and emotional support were among the most popular services caregivers said they evaluated in the survey.
American caregivers are diverse, but many of them are like Edwards. Middle-aged women care for elderly parents. The report found that the average age of caregivers is 51 years old, with 61% of caregivers being female, and 70% of caregivers aged 18-64 are employed while providing care.
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Today, around 16 million caregivers are in the sandwich generation, balancing both adults and children. Edwards is one of those caregivers, with her 17-year-old daughter heading to her third year of high school.
“You can’t be a great mom and a great daughter. That’s not possible,” Edwards said. “I have an incredible amount of guilt from all the time I wasn’t spending with my daughter.”
Dementia, Alzheimer’s Disease, affects 11% of care recipients
Old age is the most common main reason why care recipients need assistance, survey respondents said. The second most common condition in 11% is Alzheimer’s disease or dementia.
Another 19% of respondents showed that care recipients live with cognitive impairment, indicating that at least one in four caregivers care for someone with memory problems or dementia. Another 17% of caregivers responded that they “don’t know” if the care recipient had memory problems.
Caregiving for people with dementia is a more intense type of care with more complicated tasks, Choula said. Many people with dementia also develop other chronic diseases, such as heart disease and cancer, which can further complicate their care.
“You essentially have to function for that individual,” Chola said. “You need to maintain your life to maintain difficult choices and life for that individual.”
For Edwards, caregiving means helping Martinez use the bathroom and shower. She prepares food and takes her to the appointment of a doctor. They play games, puzzle together, go for walks, drive around town. Edwards said being a full-time caregiver is “very isolated and very lonely.”
Sometimes she starts to nod her mother and remember some parts of her life. But Edwards said, “There’s nothing there.”
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According to reports from AARP and the National Alliance for Caregiving, most caregivers live within the caregiver’s recipient or within 20 minutes. Caregivers average 27 hours of care work per week, with nearly one in four providing 40 hours of care each week.
Caregivers say the care work can be overwhelming, with only 11% of caregivers saying they have received formal training. Caregiving duties can be intense as caregiving duties require the help of daily tasks such as swimsuits, dressings, feeding, taking medications, using a bathroom, using a bed or chair, and moving to a room. Caregivers can also help with grocery shopping, cooking and household chores.
To reduce the burden, the National Alliance for Care from AARP has found that one in three family caregivers are supported. Others can help friends and family, including children. The report estimates that 4 million children will support their care obligations.
Most useful is what caregivers often say so that family caregivers can take a break. Four in 10 caregivers reported reporting, and only 13% reported using respite services, although they reported that respite services were helpful.
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Neal Shah, CEO of Careyaya Health Technologies, a technology platform that connects people in need with medical students, said there are many reasons why family caregivers don’t get the help they need. Caregivers are underpaid, lack of workforce for caregivers, and care services are too expensive for many families. You may also feel shame, guilt or questions about the quality of care. He experienced it firsthand when caring for a wife who was sick with cancer.
“I kept taking sabbaticals from my job to manage my care because every time I tried to get help with care, the quality was very poor. Reliability, interpersonal interaction,” Shah said. “I felt very guilty.”
The survey found that more family caregivers have been having difficulty finding affordable care services since 2015. Finding meal delivery programs, transportation services and home health assistance is a struggle for 28% of caregivers.
Caregivers find purpose in caring for their loved ones
While caregivers can be a blow to their mental health, the report also found that half of caregivers say responsibility provides a sense of purpose or meaning in life.
Family caregivers often find themselves growing closer to their loved ones to look after them, Chola said. Caregivers can empower caregivers in some families, and adult children will especially give the opportunity to return the care they once gave to their parents.
While caring for his mother, Edwards said he wanted his mother to be at home. They were always close, she said. Just from Edwards’s perspective, you can make Martinez smile.
“I’ll do this from my love I have for her,” Edwards said.
Madeline Mitchell’s role in covering women and caregiving economy at USA Today is supported by partnership with extremely and Journalism Funding Partner. Funders do not provide editor input.
You reach Madeline with memitchell@usatoday.com and @maddiemitch_ x.
