A couple of years ago, family life was moving at a normal pace for Albert. At midlife, his work had its usual challenges and rewards. Then, while on a business trip, he received an urgent call advising him to return home immediately. His mother was seriously ill. The treatment option did not offer full recovery, and after much heart-rending family discussions, she was discharged under hospice care to Albert and his family. So began a phase in the life of Albert and his family, a totally new experience. There was no going back. Albert had a college education, but there was a lot of learning to do. What happened to Albert is one way some of us become family caregivers.
Perhaps you have a slightly different story. Right now, you may not even think of yourself as a caregiver. Maybe you’re only helping your parents with trips to the supermarket, church, bank, doctor’s office and social events because they do not know how to drive. When they immigrated after retiring in the Philippines, they lived with you to help raise your young children. Years passed and you now notice them getting up from the couch a bit slower, needing a stronger pair of eyeglasses, and showing other telltale signs of aging. In the privacy of your thoughts, you ask yourself what you will do when their health begins to fail and they need someone to look after them. The more you think these thoughts, the more uncomfortable you get. You may quickly tell yourself, “Of course, I’ll take care of them. My husband and the children will help. It will be our turn to show our love, devotion and respect by attending to their needs.” Thus, you and others who are in similar circumstances are gearing up for the caregiving experience.
The Family Caregiver Alliance (FCA), a nonprofit organization in San Francisco, describes a caregiver as “anyone who provides assistance to someone else who is in some degree incapacitated and needs help.” There are two types of caregivers, a formal caregiver and an informal caregiver. A formal caregiver is a volunteer or a paid person who is trained in the basic care of older people and usually associated with a service agency. The informal caregiver is a person who provides care to an older person without pay. A family caregiver falls under the second type. When a family member takes on the role of family caregiver either by choice or default, it often means adding more responsibility to existing ones, changing some family routines and social commitments, re-arranging sleeping quarters and personal spaces if the elderly lives with the caregiver, re-allocating financial resources, reducing your hours at work, etc. Over time, major adjustments are made. On a day-to-day basis, caregiving can be stressful especially if it lasts for an indefinite period of time.
One does not have to live with the older person to be involved in the caregiving process. Edwin, an executive of a California nonprofit, visited his father in Washington as often as he could, watching his father’s health gradually fail due to Parkinson’s disease, aggravated by late-onset Alzheimer’s disease. Although his mother was the primary caregiver, she needed someone to guide her through the maze of the Veteran’s Administration system and other service agencies. He gladly stepped into this role, using his management expertise and knowledge of health care and social service resources. Today, Edwin provides emotional support to his widowed mother as a “long distance” caregiver. He hopes to have an arrangement for a primary family caregiver for his mother who prefers to stay in Washington.
Caregiving can be more stressful to family members who are not directly involved with the care of an aging parent, says Leny Strobel, a professor at Sonoma State University. She knows the anxiety of not knowing when the final moment will come. Her mother who had a heart condition was up and about until the last week of her life. Living in the Philippines with Leny’s father and a family caregiver, she had appropriate care and attention. Nonetheless, Leny found herself thinking of worst-case scenarios. Telephone conversations with siblings residing in other parts of the U.S. alleviated some of the stress. Living the faith taught by their parents and learning from the caregiving experience, the siblings grew closer together. It opened meaningful dialogues about their own aging and mortality. Leny believes that her research on decolonization, or the re-discovery and re-creation of our identity as Filipino Americans, are important in helping her cope with the demands of caregiving. Trips to the Philippines strengthened family ties. Like Leny, Rosa, who worked as a paid caregiver for an elderly Filipino immigrant, took an unpaid leave to visit her ailing mother in the Philippines, staying until after the funeral and the family affairs had been settled.
Elena, a second generation Filipina, agonized over her decision to move East, which meant leaving her widowed father behind. Although her father was still quite independent, she worried about unexpected events and her inability to be there for him if something happened. Being the only child, she felt the full responsibility of caregiving on her shoulders. She did not know how to talk with her father about her concerns. When finally she overcame her fear of rejection, she discovered how supportive her father was, which reinforced the open and loving relationship she had always enjoyed. For Lydia who would have been the first one in her family to get a graduate degree, the situation was different. Also a second generation Filipina born to a hardworking family, she could not overcome the family pressure to give up her job and graduate studies to take care of an elderly relative. When that was over, she had to start her life over again at age 29.
Max, on the other hand, had no choice. His mother had to go to a skilled nursing facility. He did not have the skills and resources to meet his mother’s health care needs after a stroke that left her right side non-functional. Born and raised in the U.S., he, too, believed that family took care of each other. He understood the pain and disappointment his mother felt about the arrangement. She was treated for depression, and Max as a family caregiver was at risk of becoming depressed as well. With counseling, Max is learning to communicate with his mother and making important emotional adjustments so he can move on with his life.
According to the Administration on Aging, there are 70 million people aged 65 and over in the United States (as of 2009), representing 12.9 percent of the population. By 2030, the number is expected to increase to 19 percent as the last of the baby boom generation reaches retirement age. As of November 2012, there are 65.7 million caregivers providing services to the ill, disabled and the aged. Of this number, 43.5 million care for the elderly. The majority of the informal caregivers are women and the average age of caregivers is 46 years. What do these numbers mean to the Filipino American community? Consider that our current elderly are predominantly first immigrants and many are living in intergenerational households with at least one adult. The Filipino American baby boomer, such as those who shared their stories in this article, are either already caregivers or will be caregivers. They are involved in their careers, raising families and just reaching economic stability. The women who would most likely become a primary caregiver are also employed. According to gerontologists or specialists in the study of aging, these individuals are the “sandwich generation” because they are in dual roles of caring for their children and caring for their aging parents.
It is common knowledge that our cultural values include honoring older members of the family, and one way to show this is to take care of them when they need help. In 1979, social scientist Gelia Castillo described the Filipino family in the Philippines as an entity of nuclear and extended family members providing a wide range of social, health, economic, psychological and emotional support to the unmarried, aged, troubled or needy family members. In many ways, our community continues to live this value, which has its pluses and minuses as each of us also struggle to find a meaningful place in American society. Carmen Galang, former president of the Philippine Nurses’ Association of America, interviewed Filipino American caregivers for her dissertation project. She found that many claim the difficulties or suffering they experience as caregiver has spiritual significance. They also appear to link this belief to their moral and ethical beliefs.
According to Edith Superio Cabuslay, a public health professional, and Betty Foronda Miranda, a clinical nurse specialist, there is a beginning shift in expectations among Filipino Americans. The two independently studied filial piety among Filipino Americans. When they asked whether children should be taught to care for their elderly, the young and the elderly group strongly agreed. Those who were middle-aged also agreed, but with a caveat that in their old age, they expect their adult children to see to it that they receive good care but do not expect to live with them. This is a wake-up call for our community. Before a caregiving situation catches up with you, find out what services are available in your region. Every county government has programs for older people housed in the Area Agency on Aging unit. Its existence is legally mandated by the Older Americans Act. You can also learn about online resources for caregivers at www.caregiver.org or call the Family Caregiver Alliance at 1-800-445-8106. The FCA recognizes the importance of a diverse staff and bilingual Filipino staff are accessible.
Looking outside the family network to care for an aging parent became a reality for Albert and his family. His mother’s health status needs changed from terminal care to long-term care. Different options for caregiving and living arrangements had to be made other than a live-in paid caregiver. Once again, there were new challenges. It was important to the family to choose a place with providers who would care for Albert’s mother with respect and appreciation of the family’s cultural values. With supportive help from the hospice care staff, they were able to select an assisted living residence with bilingual Filipino caregivers. In retrospect, Albert says the experience would have been less challenging had he known what he knows today. We do need to educate ourselves on the options available to family caregivers. Using formal caregivers when looking after our aging family members in America is also a way to honor our elders. It is an act of love and respect to share the caregiving responsibilities beyond the family. In doing so, you could be a better source of emotional sustenance for your elder, your family and your community.
Melen McBride, PhD., RN, was Associate Director, Stanford Geriatric Education Center, Stanford University. She wrote this article for Filipinas Magazine in September, 2004. We have updated the statistics for this version.