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Jersey Sisters Care for Their Mother, Lean on Each Other
A lifeline delivered through love and caregiving
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Lillian Blue Johnson and Diane Allen are fortunate, even on the days when it might not seem so.
Their 95-year-old mother, Ethel Blue, lives in her own home in East Orange. She is mobile. And she can feed herself. But for everything else —cooking, laundry, cleaning— Lillian and Diane have had to take over.
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The bond between the sisters has grown stronger as the responsibility of caring for their mother has deepened.
They are among the 1.76 million family caregivers in New Jersey providing care to a loved one, according to Valuing the Invaluable 2026, an AARP report released in March. In November, AARP New Jersey will once again observe Caregivers Awareness Month to raise consciousness of the challenges caregivers face and to honor them for the sacrifices they make.
One in five New Jerseyans are caregivers, providing about $28 billion in care, according to the March report. That amount is nearly the same as the state Medicaid budget, says Crystal McDonald, AARP New Jersey’s senior associate state director of advocacy.
Now, AARP New Jersey is pushing the state Legislature to pass the Caregivers Assistance Act, which would provide a fully refundable state income tax credit. The credit has a cap of $675.
“Financial relief is the No. 1 thing we hear from caregivers that they need,” she says. “We also hear a lot about respite services.”
The sisters’ mother has had a series of mini strokes. She also has dementia. She once asked the two women, whom she no longer recognizes as her daughters, if they were being paid to care for her.
“I guess she sees those commercials on TV where they say that the caregivers get paid something for taking care of their loved ones,” Diane says. “We told her that no, we’re not.... We do it out of love.”
When Ethel’s primary care doctor told her daughters she could no longer be alone, Lillian, 77, and Diane, 73, began a more intense form of family caregiving, alternating the days —and nights— they stayed with their mother.
Pushing for Financial Relief
AARP New Jersey has been proactive in advocating for caregiver services. The state was among the earliest to establish a paid family leave insurance program, independent of the federal Family Medical Leave Act, McDonald says. And over the years, it has worked to increase the wage allowance caretakers receive and to strengthen job protections.
Lillian and Diane serve as officers of the West Essex AARP Chapter 131. It meets on the first Monday of each month. One of their brothers stays with their mother so they both can attend. And on Tuesdays, their other brother stays with their mother for about eight hours, giving the sisters additional time away from their responsibilities.
The sisters are retired, but caring for their mother is a full-time job—one that takes patience and devotion. They’re also very clear that it is hard.
“Burnout comes rapidly with caregiving, and you’re doing it continuously,” Lillian says. “So you do need to rest with the caregiving.” Diane, who worked as a caregiver in nursing homes and other facilities, says taking care of her mother is different.
“It is very much more emotional,” she says. “Like with Mommy, this touches you more about the times whenever she’s not recognizing, or the times when she doesn’t know where the bathroom is, things like that. It just bothers me more.”
Support Matters
The sisters want others to know how important it is to have support. Lillian has wanted to cruise the Hawaiian Islands for some time. She will do so in November as she and her husband celebrate 50 years of marriage. That means Diane will be the one staying with her mother full-time.
In November, the portraits of the sisters will be part of an exhibit in Atlantic City to coincide with a League of Municipalities conference. Rutgers University’s Mason Gross School of the Arts has commissioned portraits of caregivers from across the state.
McDonald says the exhibit is a reason for their success in helping caregivers: It provides space to talk about that part of their life.
It also will provide a platform for family caregivers to be seen.
More Information for Caregivers
- Caring for America's Caregivers
- AARP Resources and Solutions for Local Caregivers
- AARP New Jersey Caregiver Connection
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