San Jose, CA.- San Jose, Calif. – Maria Lacayo’s mother was diagnosed with dementia 13 years ago, and soon after with Alzheimer’s. Since then, Maria has taken care of her mom nonstop, every day, at their home in San Mateo. Seven years ago, her caregiving demands intensified after her mother suffered a stroke.
More than once, physicians warned that her mother might be living her last days. Regardless, of that, Maria never thought about sending her mother to a home, assisted living facility or a hospice. After the stroke, doctors said she would live only for three months.
“She is in a wheelchair, and I take care of her 100 percent. She cannot do absolutely anything, not even eat, or take her pills,” says Maria, who came from Nicaragua 22 years ago to the United States.
Maria explains that she feels remorseful and terrible, just thinking about sending her mother somewhere else. “The Lord has to give my life, and patience, to continue caring for her. Even though I feel tired, we continue fighting. If we don’t, they die.”
According to the National Hospice and Palliative Care Organization (NHPCO), less than 10 percent of Latinos use hospice services. Many, like Maria, were not aware of such services or any other services.
“Sometimes it is the lack of information, we are not aware about (services),” says Maria, “and therefore we don’t take part of things.”
Authors Melissa Talamantes, MS, Celina Gomez and Kathryn Braun, in their book “Advance Directives and End-of-Life Care: a Hispanic Perspective,” say that “lack of knowledge about Hospice programs” is one of the reasons for not utilizing Hospice services.
Their studies also find that Hispanics are less likely to complete Advance Directives, which are legal documents that state end-of-life decisions ahead of time, and five traits found in Hispanic families: emphasis on family welfare; respect for hierarchy among family members; poor communication between them and physicians or care attendants; spiritual beliefs that might cause reluctance to seek help from institutions; and “emphasis on the present, not the past or future,” which brings us back to not completing documents such as Advance Directives.
For ten years after her mother’s diagnose, Maria thought she was alone. At the hospitals, they rarely speak Spanish, and do not provide much information, says Maria. It is different with her doctor, the private clinic they attend, where they do speak Spanish.
According to statistics used by Stanford University, about 15 percent of Hispanics aged 60 and older in the United States, speaks no English at all. Nearly two of five Hispanic elders live alone.
It was only three years ago that she found different sources where she could seek help, in Spanish.
“I received a letter with information about places”, says Maria, who vaguely remembers how or from whom she received information about sources and services. “I wrote down my phone number somewhere and they contacted me.”
The Alzheimer’s Association started helping her, providing her with information and focus groups by phone. Also, a social worker from San Mateo County visits the Lacayos every three months, and calls them every week. Earlier this year, Maria found some respite for herself, when she started visiting a focus group offered by the Family Caregiver Alliance. There she met other Hispanic caregivers in similar situations.
San Mateo County now sends her a shuttle to take her mother to the hospital, or to attend her focus groups. This allows Maria and her mother to have a social life, to leave the house and interact with other people frequently. They also go to the store and walk around the neighborhood.
“I love this country. We get a lot of help,” says Maria.
Still, Maria accepts help to a certain point. She is visited by the social worker, but she is the only one who has taken her of her mother.
“My mother’s health is great. I bathe her everyday, and have great hygiene,” says Maria. “One person in our focus group took her mother (diagnosed with advanced dementia) to a hospice, and died three days after. In my case, my mother will die here with me.
Latinos usually prefer to keep their relatives at home. I notice this is changing, recently more Latinos are taking them to other places. But that would be the last thing I would do, to take her to a home,” says Maria, who added that she never held a conversation about death with her doctors.
The strong kinship networks and “availability” by Hispanic family members (higher potential caregivers within a family), has been widely documented by several reports conducted by the Health Services Research.
Reports also indicate that Hispanics prefer to care for family members over utilizing institutional settings.
“In Latino families, control is kept within the family, and the patient is often ‘protected’ from information and the responsibility of making decisions,” says Barbara Kreling, PhD, from the American Hospice Foundation. Dr. Kreling also suggests that there needs to be wider education within the Latino community, and encourages for stronger “cultural sensitivity and diplomacy” and “the need for a trained bilingual, bicultural community member” aware of “the important role of the family in these decisions.”
Many Hospices in California are launching outreach efforts targeting the Hispanic community, emphasizing the importance of the family.
“It is important to emphasize the importance of family in hospice care. Some Latinos have not heard of hospice,” reads the Latino Outreach Guide from the NHPCO, published in 2006.
NHPCO started using the term “compassionate care” among Hispanics, as they found it more effective than the word “hospice.”
At a personal level, I can relate to Maria’s story.
My family back in Mexico has never used any of these services. My father’s mother (Chelo) and sister (Carmen) both spent their last four and three years, respectively, on a bed in their homes before they died. They lived in Tampico, a small city in Northeast Mexico, where provincial life still differs greatly from the big city lifestyles of Mexico City.
My grandmother’s neighbors were mostly her own sons and daughters, with their own respective families– as is common in Mexico. The fences were brought down and the yards were connected, giving open access to any family member to her home.
Although several nurses provided their services every now and then, family members provided care for them. We never considered taking them to a Hospice, never mentioned it, never even thought about it.
What would have happened if Chelo and Carmen had been taken to specialists in Palliative care? We will never know. What we know for sure, however, is that the emotional toll on the family was very heavy; conflicts and arguments were constant before and after their deaths.
Gerardo Fernandez wrote this article for Alianza Metropolitan News through a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.