At first, Vera Galeas was reluctant to reach for a helping hand to deal with her mother’s dementia.
“In the Hispanic community we are very much into 'I know everything and I do it by myself and I don’t want any help.' It’s embarrassing to ask for help, plus what are people going to say,” she said. “But we hurt ourselves.”
Galeas is one of an estimated 425,000 caregivers in New York City who are helping family members with Alzheimer’s Disease or other forms of dementia.
The journey from isolation to outreach was a rocky one. While the Yonkers resident is working with the nonprofit PSS Circle of Care to access services for her mother, she wasn’t also open to receiving help from others. Her unwillingness to get outside help came from not believing her mother’s health was as bad as it seemed and her culture teaching her that children were solely responsible for parents.
According to the Alzheimer’s Association, Hispanics are at a higher risk for Alzheimer’s and other dementias than older Caucasian individuals. However, even with the high risk the National Council on Aging has found that among Spanish-language communities there is a lack of knowledge of the illnesses, with many not fully knowing the extent and complications of the disease.
For Galeas — whose mom immigrated from Guatemala — it took a case of coincidence for her to realize that her mother needed more than just help from her family.
Galeas said she attended what she thought was a caregiver gathering aimed at those caring for children — where she planned to bring back information to her job at the Family Learning Place at the Children’s Hospital — but instead found it was for seniors.
PSS had been on hand and offered examples on what happens when elderly individual deal with issues such as dementia.
“A light went on and I was like, oh my gosh, that sounds like my mother,” Galeas said.
Even with the information in front of her, Galeas said she still put aside the material and believed her mother was not that bad. Three months later the doctors diagnosed her mother in the late beginning/mid stages of dementia.
She decided to reach out to PSS but again was reluctant to seek help, even after a caseworker evaluated her situation. However, her mother’s health kept deteriorating and it became increasingly stressful to deal with everything on her own.
“Within a couple of weeks she went from taking care of herself, doing everything she was supposed to do, to failing. Every other day there was an issue,” Galeas said.
In the past year, PSS has helped Galeas seek help for her mother, receive a grant from the Alzheimer’s Association, guided her through services for her mom, and also provided her with a support group which has taught her to remove the guilt and not be afraid to ask for help.
And even though Galeas added that she is coming to terms with her mother’s illness, her two sisters – who are nurses — are still in denial. She said they do not address the disease by its name and will not attend PSS support groups.
“The more she deteriorates, the harder it is for them,” she said.
Six months ago, Galeas’ mother was moved to St. Patrick’s Nursing Home in the Bronx, and while the family was met with critiques from “nosey neighbors” and there are still bad days when her mother’s behavior is erratic, she says her mother is more peaceful.
And even if there is still a long road ahead she said she knows she has the support system to move forward.
“Right now, if I didn’t contact [PSS], I think I would still be handling things by myself with a lot of guilt,” she said. “I should have three years ago immediately asked for help.”
PSS is one of two New York City nonprofits — including Sunnyside Community Services (SCS) — awarded $15 millions over the next five years through Governor Andrew Cuomo’s Alzheimer’s Caregiver Support Initiative.
With these funds the nonprofits will roll out caregiver support services throughout the five boroughs — which before was limited to a few communities.
Tthe goal is to help ease the level of stress among caregivers, while also addressing the issue in largely Latino communities so more individuals either seek help or just get informed.
“They feel that no one is going to care for their loved one better than them and they are the ones that should be doing it anyways,” said Diana King, PSS Circle of Care caseworker. “No caregiver should have to do this alone.”
Judy Zangwill, executive director at SCS, hopes the expansion of their services will allow families to seek help early on in the diseases and lift barriers that individuals — primarily in immigrant communities — face.
Along with being there to offer caregivers support, Zangwill added that SCS aims to also help senior citizens transition into other programs within the center so they always feel like they are in a trusting environment.
“We are supposed to have it all together, we can’t fall apart and I think that one of the goals is to prevent [caregivers] from getting to that point,” Zangwill said. “We see our role as helping them navigate these systems so they can access the help they need.”
To find out more about the PSS Circle of Care Alzheimer’s Caregiver program, caregivers can email firstname.lastname@example.org or click here. For Sunnyside Community Services’ program caregivers can click here or email email@example.com.