When Nancy Aponte moved from Colombia to the United States, Alejo Conde and his wife helped her find a way to make a living in her new country. Years later, she decided to return the favor by taking care of Conde as he aged. “He knocked on my door looking for me, and I felt that [taking care of him] was my mission,” Aponte said.
Conde agreed to accompany Aponte each morning to SunnySide Community Services, a senior community center in Queens, New York. “Sunnyside has unique programs for older adults so they can interact with others,” she said. Alejo's favorite event is Rumba Thursdays, Aponte says. Despite having Alzheimer's, Conde remembers some of the lyrics when he is dancing.
At the senior center, Aponte found free opportunities to educate herself. That allowed her to spend quality time with Conde while giving him the care he needed.
“There were many things that I didn’t know how to handle, things that I couldn’t understand,” said Aponte. “I felt impotent. I felt I did not have the strength to see Alejo [that way]," compared to the way he was 16 years ago.
But she learned how to work with the family, how to recognize what Conde needed and how to deal with her emotions. Nancy also urged Conde's daughters to participate in courses and support groups at the center. “His daughters are very open to learn, to know and to investigate," she said.
“These opportunities," she added, "are very important to the community and to families in similar situations."
A duty that runs in our blood
Since her 87-year-old mother had a stroke four years ago, Beatriz Santana has been her 24/7 caregiver. She said she would not put her mom in a nursing home. "I feel like that would be betraying her.”
With dementia and a variety of complex medical conditions, her mother lives confined to a bed at home, where two domestic caregivers feed, clean and provide her comfort for 12 hours a day. Past unpleasant experiences with some home assistants, as well as the difficulty of moving her mom, have kept Santana limited to her home to watch over her mother.
The good thing about having " abuela" at home, says the 54-year-old Santana, who was born in Dominican Republic, "is that I can give her the care that she deserves.” She now performs medical tasks that she never imagined she could.
Years ago, Santana's mother told her: “If anything happens to me, do not send me to a nursing home." Her own mother died in one.
Santana is part of the so-called ‘sandwich generation’: adults between 40 and 59 years old who support both their parents and some of their children. She lives with her youngest daughter and cares for her grandchildren for eight hours or more each day.
“It is assumed we will take care of them because they sacrificed for us. When they are sick, it is our turn,” said Santana about the responsibility.
“In our culture, taking care of our parents is a duty that we carry deep within our hearts and which also hurts us,” said Roberto Reyes of Caringkind NYC, a non-profit organization that provides free assistance to individuals and families affected by Alzheimer's and other types of dementia. He said caregiving takes a physical, financial and emotional toll on caregivers.
Several studies show the high risk of mortality on family caregivers.
Overwhelmed by responsibilities, isolation and depression, Santana’s health is deteriorating. She receives periodic help from her daughters, an elder aunt and a friend, so she can go grocery shopping or take a break. But it is not enough.
The problem, Santana admitted, is that she never anticipated how demanding it would be to take care of her mother, and how it would keep her from caring for her own needs.
They are also caregivers
While most Hispanic caregivers are women, more and more men take on this task each day (40 percent), according to a report by the NAC and AARP. Rafael Vélez, a 68-year-old handyman, is one of them.
“We have spent more than half of our lives together,” Vélez said of his wife of nearly 50 years. Now she suffers from severe depression, memory lapses and a volatile temper, and is unable to fend for herself. “If we have come so far, how can I not care for her,” he said. He plans to retire in December and devote himself to caring for his wife around the clock.
Every day Vélez has to perform a balancing act. “I say to her ‘Let's go to the doctor together, as a family,’ so she doesn’t think that I think she is crazy,” he said.
The frustration comes from not being able to help her get better.
“We feel that we fail when we cannot find the right treatment or when we cannot prevent them from falling, or keeping their blood pressure from going up,” said Amy Goyer, an AARP consultant, family caregiver and author of the book "Between work and the care of our people: How to achieve a balance."
Nevertheless, more is needed to measure the success of a caregiver, she said.
Now that Rafael is about to retire, he wants to “seek help to manage his stress and be mentally healthy," because work is a refuge for him, he said.
In his spare time, he finds solace listening to classical music or taking pictures. Although a neighbor helps him to take care of his wife during the day, he is always concerned about her and leaves work frequently to assist her when she has a crisis. His daughter found some information for him on the Internet, but he has not reached out for support yet.
Caregiving is a very emotional journey that can be complicated, said Goyer. Sponsored by AARP, the new documentary Every Step of the Way, narrated by TV personality Marco Antonio Regil, explores the daily challenges that this duty requires. Based on his own experience as a caregiver, Regil encourages Hispanic families to talk about their challenges.
Family caregivers tend to isolate themselves and not ask for services that are available to help them. “It is not shameful, it is only practical, because one person cannot do everything and now people are living longer with chronic diseases,” Goyer said.
Prepare ahead of time
Goyer's father was a college professor and he has a good pension, in addition to benefits as a veteran and a long-term care insurance. And yet it is still difficult. “We must have a plan and prepare," she said. She urges people to consult a financial advisor and work with an elder care lawyer.
In a survey by AP and NORC Center for Public Affairs Research, 49 percent of Hispanic caregivers said their savings had reduced due to caregiving expenses. The report also revealed that for most people, taking care of a loved one is a priceless experience.
Santana pays incidentals not covered by her mom’s Medicaid or Medicare by taking money out of her 401K and getting help from her two brothers. The family paid $27,000 out-of-pocket to bring their mother back from the Dominican Republic when she had a stroke. There is no more money to save for the future, she said.
With the help of a social worker, Santana signed up for services with Doctors On Call, a network that provides medical care at home in New York, and bought funeral insurance for her mom.
For years, Vélez has been saving for his retirement. “Using these funds wisely, both my pension and my savings will give us enough to cope with the situation,” he said.
On average, a Latino family spends 44 percent of their annual income to care for their relatives, according to a 2016 report. Per month, a family's out-of-pocket expenses can be more than $7,000, depending on whether the elders live with them at home or not.
Although Vélez will lose the private health insurance he gets through his union, he is looking to qualify as a Medicaid Part B beneficiary (he and his wife are already covered by Medicaid Part A). One of his daughters is the executor of their will and health care proxy.
“One has to know how to prepare a care regimen to avoid being overwhelmed," Roberto Reyes said. “Latinos make decisions with the heart and that is why the level of care we provide always surpasses our own capabilities as caregivers.”
A starting point for this preparation is to have a will and a health care proxy.
“These are basics that most families do not think about,” said Goyer. Having "real communication," in Goyer's opinion, is the basis for decisions such as whether parents want to go to a nursing home or stay home, and how much money the family has to pay for their medical care and other expenses.
How to get help
There are many organizations that offer free assistance for seniors and their families embarking on the caregiving journey.
Eldercare.gov: The U.S. Administration on Aging website connects caregivers with more than 1,650 public and private charity programs across the country, which can help with meals, transportation, home care and education.
AARP: Prepare to Care is a free guide that summarizes all essential steps for planning the care of a loved one. It can be downloaded at AARP.org, where you can also find helpful videos.
Caringkind NYC: Based in New York, this organization offers workshops for family caregivers on information to improve the quality of life of people with dementia and their families, focusing on communication strategies, how to identify early signs of Alzheimer and safety at home. Caringkind NYC prepares and certifies health workers to care for people with Alzheimer's. By calling 646-744-2900 you can talk to a social worker, seven days a week, to coordinate services.
Alliance for Aging: Based in Dade and Monroe counties in Miami, Florida, this group is part of the national network of 650 local agencies that focus on the elderly and their families.
The Scan Foundation: Provides easy to understand publications on elderly health and long-term care services, such as the "10 Things You Should Know" series about aging well.
FCA CareJourney: An online service by Family Caregiver Alliance, it offers specialized online training for family caregivers who do not have time or cannot leave their homes. After answering questions upon registration, the site selects content according to individual needs.