Valerie Jones sits in a sun-lit room at a rented townhouse in Bridgeport, Connecticut, singing happy birthday. It’s not the birthday of anyone she knows, but it’s the only song she can remember, and she loves to sing.
“Happy birthday to you, happy birthday to you,” she hums.
Jones is 87 years old and has breast and bladder cancer. But she doesn’t know it because she also has Alzheimer’s disease. Turning to a woman standing nearby, she asks, “So your name is what?”
“Cookie!” the woman replies, and Jones shakes her head in disbelief.
“No, no, no, no! You're not my Cookie,” she nods vehemently.
The woman is, in fact, Cookie Jones, Valerie’s 60-year-old daughter. And she’s one of millions of American adults who are caregivers for family and friends, according to the new documentary “Caregiving,” premiering on PBS June 24.
“I’m not sure you could find somebody who hasn’t either been a caregiver themselves or knows someone who’s a caregiver,” says Debra Barrett, vice president of corporate affairs at Otsuka America Pharmaceutical. The health care company studies family caregiving and sponsored the PBS documentary.
“And yet the work, and the sacrifice, and the support that caregivers are giving is oftentimes not seen,” Barrett says.
If unpaid care was a business, America’s family caregivers combined would earn more money than some of the biggest global corporations — Walmart, Apple or Amazon — according to a Columbia University study, commissioned by Otsuka.
“The hope with this film is that we lift up this issue,” Barrett says. “[That] we have audiences recognize how important the role of the caregiver is, how much work they're doing.”
‘I don’t want to take anything from her’
Cookie has been a caregiver for 10 years, all the while raising her two sons as a single mom. Even though her labor comes from a place of love, taking care of her mom is far from easy.
“Every day, I get her up, I take her into the bathroom, and I put her on the toilet and I clean her,” she says. “Some days I let her brush her teeth, I put the toothpaste on there, and I stand in there, and I just let her, because I don't want to take everything from her.”
Cookie says her mother had always been a strong and independent woman. Valerie worked for more than 30 years at a helicopter engine manufacturer. Now, Cookie ensures her mother’s physical safety by buckling her in with a gait belt to a sofa chair, as she cleans the house and cooks for them both.
That morning, Valerie had eaten four tiny pancakes, a sausage and an egg, Cookie says. “We're gonna have spaghetti tonight for dinner.”
Being a caregiver is isolating, Cookie says, adding that people don’t quite understand what it means to be one, if they haven’t done it. Her sons are now grown, one is a firefighter and the other a mailman, and busy with their careers.
All she wants is someone to talk to, but there isn’t anyone, she says. So she talks to herself in a video diary. It’s a memoir of sorts. Pulling out her cell phone, Cookie shows a day in her life.
“This Sunday, June 1st, 2025. This is the diarrhea my mother has. All over my floor. Her diaper is covered. This is what I had to clean up. I don't have help.”
Those last words come out in a whisper, like she’s bone tired.
Calls for help
Cookie says she would have to pay $25 an hour for someone to come home to care for Valerie — and that’s money they don’t have.
After she quit her job to be her mother’s full-time caregiver, she says she used up all her savings from working as a saleswoman at a shoe store for more than 30 years. Now both mother and daughter are mostly living off of Valerie’s social security income, Cookie says.
Across Connecticut, caregivers are calling United Way’s 211 helpline to know where they can get help. Call volumes surged more than 35% last year from 2023, says Tanya Barrett, vice president at United Way.
One program in particular is drawing interest.
“We’ve received roughly 3,200 calls [in 2024] from caregivers who are seeking information about how to get a Community First Choice program for their loved one,” she says.
Community First Choice is a Medicaid program, It allows individuals at institutional levels of care to have services and supports in their homes, which are provided by personal care assistants (PCAs).
The person insured by Medicaid can select a family member to be their caregiver with some exclusions – a spouse cannot be a paid caregiver, a parent of a minor child also cannot be the paid caregiver, and if the person is the conservator of the Medicaid member, they cannot be a paid caregiver.
“Other than those three scenarios family members are welcomed and encouraged to be the PCA,” says Christine Stuart, a spokesperson with the state Department of Social Services. “We find that family caregiving offers an opportunity for our Medicaid members to receive care from those that they love and trust which offers high quality of care.”
Medicaid-funded Home and Community-Based Services (HCBS) continue to grow each year, serving over 40,000 members in their home and community that would otherwise require institutional care, Stuart says.
For Cookie, caring for her mother at home was the only viable option. Valerie never wanted to enter a nursing home to “trade her money for the state,” Cookie says.
It can cost several thousand dollars a month to live in a long-term care facility without private insurance.
Valerie is insured by Medicare, but Medicare does not cover long-term nursing home care. Insurance premiums can add up to several thousand dollars and are out of reach for many. And Medicaid requires a person to keep just $75 of their income per month for personal use. All other income and assets must go to the nursing home for their care.
Cookie lists these options and begins to cry. She says she loves her mother, but she is exhausted. Added to that, she says, is the dying dream of opening her own consignment shop.
‘Burnout is huge’
Cookie walks through a basement stacked high with boxes. Mannequins and racks for shoe display are everywhere. Stored neatly are hats, scarves, sweaters — all of which Cookie bought over the years as inventory for her shop that never opened.
“These are some of the shoes that I have, and they're beautiful shoes. I used to tag them, see. These were just $10 and they're practically new,” she says, holding up a pair of heels. “I really, really, really wanted to do this, and it really, really hurts me that I cannot go forth, because I don't know how long this journey is going to be with caregiving.”
Across the country, caregivers like Cookie are calling the Caregiver Action Network (CAN). The group supports family caregivers through a free “help desk” hotline, which many call just to vent, says Jodi Koehn-Pike, content development manager at CAN.
“Burnout is huge and that’s what a lot of people call for – they need somebody to talk to,” she says.
Koen-Pike says CAN informs home caregivers they can get paid to take care of their loved one, and that local support groups are available to help them feel less isolated.
But many people don’t know that help is available. Koen-Pike says she gets that. She was a caregiver for her mother, who also had Alzheimer’s, and says she wishes she knew then what she knows now about caregiver resources.
Back in Bridgeport, Cookie says she and her mother have always been close since childhood.
Caregiving can be isolating and exhausting, but her mom has her.
“It’s no regrets,” she says. “Literally, she was welcomed 101%.”
Valerie might not remember who she is, but Cookie remembers with love, her once, fiercely independent mother.
