For the past five years, Alzheimer's has stolen Belkis Nieto’s dreams of a happy life with her husband Rafael. "When I got married, I always thought that we would travel, go to the beach and be active until the end of our days," she said.
In addition to caring for her husband's needs, she is now her family’s breadwinner. "I have to make all decisions on my own," said the retired schoolteacher.
For the nearly nine million family caregivers in the country, the experience of caring for relatives can be very challenging. Many fall into depression.
Though frustrated by her lack of freedom, Nieto has avoided that fate. "[Sometimes] I feel a bit overwhelmed, but life goes on," said the retired teacher, who exudes perseverance.
Among the positive decisions she made was to move from Puerto Rico to Miami, after a brief stay in Pennsylvania, where one of the couple's five children lives. In Florida, the good weather and a broad network of support services in her own language are important factors.
"In this situation of caring for a loved one, it’s essential to seek support, either in the community or through a doctor, or through different government agencies," she recommended.
Nieto joined a support group via the University of Florida, which has become a safe place to voice her concerns. The solidarity is an anti-stress therapy as well as an educational experience. "I found that there were people who have experienced exactly the same [problems as me] and some even worse," she said.
With the support of Easter Seals, an organization that assists thousands of families in South Florida, she recruited a home-aid through a respite program that provides free temporary relief for family caregivers. For four hours a day, the aid helps with tasks like bathing her husband and making him breakfast. Nieto uses the time to go grocery shopping and to exercise.
Going to the gym has been a source of comfort for Nieto. At 84, exercising "is what keeps me active, mentally more receptive and more alert to take care of him," she said.
Resources exist ... but how to find them?
The Easter Seals program is funded by a grant from the Florida State Alzheimer's Initiative, and is for "people who do not receive services paid by Medicaid," said Vice President of Adult Services, Ángela Aracena. Depending on the patient's condition, the program determines how many hours of care that person requires. In the U.S., most public (state) programs for long-term care include respite services.
"Cash and Counseling" programs are other useful resources. These services go by a variety of names and have different rules, depending on the state; in New York it is known as CDPAP, in Arkansas, IndependentChoices, and in Michigan it's called ChoiceWaiver, for instance.
Cash & Counseling Programs "provide the beneficiary with cash assistance and with the flexibility to 'consumer direct' or self-direct the spending of the cash on care providers of their choosing," according to the website Payingforseniorcare.com. In essense, each state pays for a caregiver chosen by the patient or the family. Home aids can be a family member, a friend or another trustworthy individual.
For people like full-time caregiver Amy Ruiz, CDPAP is a source of income. In addition to looking after her 18-month-old son, she now cares for her mother, who was diagnosed with Alzheimer's last year. "I had to choose between getting help at home or being my mother's caregiver," she said. She was registered for the program by a social worker from EmblemHealth.
Although her work as caregiver is 24/7, Ruiz got approval for 15 hours of care per week, at a cost of $11 per hour, as her elderly mother can still care for herself in some ways. In an effort to find more help and to better prepare herself for future challenges, Ruiz signed up for Circle of Care, an initiative of PSS, a charitable organization that provides assistance to youth, families and seniors in New York.
"Most caregivers are overburdened by all the responsibilities and tasks," said Katherine Martínez, deputy director of PSS. "We help them find a domestic caregiver to get some relief, but it is very important that they use that time for taking a break and doing what they like."
New York state funds all PSS services, which include: caregiver training and support groups, a home aid network, nine community centers for seniors and families, free transportation for seniors to these centers, assistance to get benefits and services such as CDPAP and pooled trusts, among others .
"What the community needs most is education to understand what services their elderly loved one needs and how they can receive them," Martínez concluded.
Caregivers can access information about assistance programs that exist throughout the country via a simple phone call. A good start is to visit eldercare.gov.
Allies caring for a loved one
Being a domestic caregiver was not María J. Díaz's first choice, but it changed her life for the better. She has worked caring for elderly people in their homes for more than half her life. In that time, Díaz also raised her two daughters and got her own home after a divorce left her and her children homeless.
"You must have a good heart and tons of patience," said this Puerto Rican from Chicago who works 40 hours a week. "My passion for what I do allows me to better serve the elderly. But it also makes me love my mom even more."
There are almost three million home aids in the U.S. About nine out of 10 are women, with a median age of 45 and no formal education.
Díaz arrived at the Chicago-based Casa Central , the largest social services agency for Hispanics in the Midwest, more than 20 years ago. She was given a place to stay, at a shelter for women called La Posada. They also trained her as a home aid at no cost, while her two daughters — one is now 28, the other 24 — attended a daycare center for families in need.
"My experience with my mother — who has suffered from anxiety and depression since I was a child — allowed me to understand how to talk to and look after people with her condition," Díaz said. At Casa Central's training sessions, she learned to identify early signs of illnesses such as Alzheimer's and depression and how to assist seniors with basic needs, such as personal hygiene, healthy eating and entertainment.
You won’t be able to learn how to support an elderly person in a manual, she said. Once, one of her elderly patients suddenly began saying 'forgive me' over and over. Her faith and natural instinct led Díaz to pray with her. "I said, 'Stay calm and do not worry, you're going to be fine,'" she recalled. Shortly after, the elderly woman died.
Those memories are still painful, but Díaz finds comfort knowing that she helped the woman pass in peace. "Sometimes we are the only ones who visit these people. And they wait for us eagerly just to be together for a while," she said.
Díaz cooks what they like. Her mission is to make them happy. "They have lived a long life and they are tired and depressed because they are alone."
She said she always goes to work in a good mood and greets them with a smile.
Since 1982, Casa Central's home aids program has been a nationwide model. The program is subsidized by the state of Illinois.
At Casa Central, caregiving candidates must have at least one year of experience. Cynthia Guerrero, the executive assistant of Casa Central, said the organization profiles candidates based on their communication skills, genuine desire to help, ability to work under pressure, and other skills. Once certified, caregivers continue their education through monthly sessions.
Essential for any caregiver, Guerrero said, are: "Compassion, patience, being open-minded and being able to stay alert."
Casa Central also provides psychological support as part of their ongoing training. Many caregivers learn how their personal lives impact their ability to express affection or communicate properly. In group therapy sessions, Guerrero helps caregivers channel those feelings.
Domestic care in figures
- There are 2.9 million domestic caregivers in the U.S., according to the Bureau of Statistics of the Department of Labor. This number has doubled since 2005, according to a report by PHI, a non-profit paraprofessional healthcare institute based in New York, Washington D.C. and Illinois.
- An average annual salary for a full-time home aid is $22,170. According to PHI's analysis, two thirds of domestic caregivers work part-time.
- Domestic care is one of the 10 fastest growing job fields in the country. According to the U.S. Department of Labor, this industry will create more than one million new jobs by 2026.
Resources at hand
The ABC of Respite: This site from the ARCH National Respite Network explains how to get the most out of respite programs. Available in English and Spanish.
More about respite services: The U.S. Administration for Community Living website provides extensive information on how Lifespan Respite Care systems work in your community or state.
Tips to fight depression and fatigue: AARP’s site has articles in English and Spanish for caregivers at risk.
Support groups network: The Well Spouse Association is a foundation that offers peer support across the country and educates about the challenges faced by spouses caring for their loved ones.
Combined or pooled on trusts: These accounts allow seniors to access public assistance benefits and maintain their income for supplemental needs. For a list of pooled trusts available in each state: specialneedsanswers.com/pooled-trust
State assistance: The Family Caregiver Alliance browser allows you to locate local programs for help at home for the elderly.