Rick Tash had never planned to be a caregiver. But in April 2016, he quit working to care for his wife, Bambi Fass, whose health was fast deteriorating after a four-year battle with metastatic cancer. “I loved Bambi and wanted the best for her,” he said. “I knew the journey would be difficult.”
For family caregivers like Tash, the caregiver role presents myriad emotional, physical, and financial challenges. These issues are highlighted, through the lens of Tash’s story, in the documentary Caregiver: A Love Story, winner of the best short documentary award at the San Francisco Jewish Film Festival in 2020; screenings are ongoing.
For Tash, caregiving became a 24/7 job, with little sleep since his wife often awoke in the middle of the night. He was also the guardian for his 3-year-old granddaughter, who lived with them. Even finding time for household tasks such as laundry, housework, and paying bills became a challenge. “Balancing everything was really difficult,” said Tash. “There was a time I got sick and had to pull myself together.”
Once Tash stopped working full time, he did some hourly consulting for the firm where he had worked as a health care actuary. “Money set aside for the future carried me through,” said Tash, who cashed in stock options and began living off savings.
He is grateful for the daily visits, meals, and child care assistance provided by members of his synagogue, Beth Jacob Congregation in Oakland, California, and the support of its spiritual leader, Rabbi Gershon Albert. “I could always call the rabbi and he would put the process in motion,” said Tash. “When you are not connected, it is harder.”
For Tash, the caregiver burden rested on his shoulders because he could not ask volunteers to help with physical needs, like lifting his wife. Over time, he became physically and emotionally exhausted as her health continued to deteriorate. In July 2016, as her pain intensified, Fass decided to stop treatment and enter hospice. During the last week of her life, hospice provided a home health care aide to assist Tash with her care. In September 2016, Fass died at home.
This story is not uncommon. The number of family caregivers in the United States has increased 9.5% in the past five years, to 53 million in 2020 from 43.5 million in 2015, according to the National Alliance for Caregiving and AARP “Caregiving in the U.S.” 2020 Report. Today, nearly 1 in 5 Americans (19%) provides unpaid care to an adult, for an average of 4.5 years—with an increasing proportion doing it for five years or longer (29%, up from 24% in 2015).
As baby boomers age and people live longer, there’s a rising need for caregivers, said Jessica Zitter, a critical care and palliative care specialist at Highland Hospital—the public hospital in Oakland—who co-directed Caregiver with filmmaker Kevin Gordon. “The issue of the family caregiver burden is a rapidly rising public health crisis,” said Zitter, author of the book Extreme Measures: Finding a Better Path to the End of Life. “As people start to die in the places of their choice, the health care system hasn’t caught up with that change.” Jewish social service agencies across the U.S. are stepping up to this growing need, given that the number of Jewish adults 65-plus is estimated at 1,156,400 or 26.1% of the total U.S. Jewish population, according to the 2019 American Jewish Population Project conducted by the Steinhardt Social Research Institute at Brandeis University’s Cohen Center for Modern Jewish Studies.
In 2005, at the age of 61, Bob Altshuler was diagnosed with Parkinson’s disease. In 2010, after falling and injuring his pelvis, he was unable to continue working. His wife, Tammi, reduced her work schedule and also hired a caregiver, whom she found on Jewish Family Service Houston’s referral list, to stay with Bob while she was working. But in 2012 when Bob became ill and unable to walk, home care was no longer feasible. The cost had also become a financial burden. “I couldn’t physically lift him and make the house physically accessible,” said Tammi. “Had he not gotten ill, I am not sure how much longer financially we could have kept up that pace. We used most of his retirement and not much was left.”
Because of her experience as an executive assistant at Jewish Family Service Houston, Altshuler knew how to navigate the complex health care system to find the skilled nursing care he required. She determined that the best solution for her family was Seven Acres Jewish Senior Care Services in Houston, where Bob has resided for the past eight years.
Family caregivers face overwhelming strain and stress. They shoulder the responsibility for overseeing their loved one’s daily health needs, coordinating medical care, handling associated paperwork, and paying for services. Their employment status may also suffer because they may need to take time off from work, reduce hours, or come in late due to emergencies—and few have access to paid leave, despite state mandates.
Today there are approximately 12,000 home-care agencies in the U.S., according to the Centers for Disease Control and Prevention. Jewish human-service agencies are nonprofit organizations, often originally founded by local Jewish federations to serve the Jewish community—although they now also serve the general population. However, unlike other agencies that may simply provide home health care aides, these Jewish agencies provide a comprehensive suite of services, including counseling and access to Jewish spiritual support.
The costs to the family can be unbearable, says Linda Burger, chief executive officer at JFS Houston. According to the National Alliance for Caregiving and AARP, 45% of caregivers suffer financial impact: Three in 10 caregivers have stopped saving (28%), 1 in 4 assumed more debt (23%), and 12% have depleted long-term savings set aside for retirement and education.
Experts estimate that families can expect to pay out of pocket as much as $30 per hour for home health care assistance, depending on geographical location. The U.S. median long-term care costs are $52,624 for a home health aide who provides assistance with activities such as bathing and dressing, and $51,480 for homemaker services such as cooking and cleaning, according to the 2019 Cost of Care Survey by Genworth Financial. Annual median costs vary by state, but they are expected to rise as aging baby boomers require more care.
Health insurance generally does not cover these expenses. For example, Medicare may pay in certain instances, e.g., limited nursing care after hospitalization or for those qualifying for long-term disability. And few have expensive long-term care insurance.
In some cases, special grants do cover home-care costs. For example, the Claims Conference on Jewish Material Claims against Germany provides funding to agencies that provide home care to Holocaust survivors. JASA, an agency serving older adults in New York City, provides up to 500 hours of respite relief to caregivers through a grant from the New York City Department of Aging. JASA’s Palliative Care Support—through its Long Island Center for Dignity and Support and funded by the UJA-Federation of New York—provides free support services, including counseling and case management, to individuals caring for loved ones with life-limiting illnesses in Long Island or affiliated with Woodhull Hospital in Brooklyn.
“Caregivers are providing an invaluable service,” said Lois Mirkowski, program director of the Caregiver Support Program at JASA. “Otherwise people would be in institutions.”
In Westchester County, New York, Westchester Jewish Community Services also offers numerous grant-supported services for those caring for loved ones with dementia or Alzheimer’s including: care consultation, resource referrals, and individual counseling. It also offers a fee-based companion service, known as Project Time-Out, which provides respite for caregivers.
“I am constantly amazed at the strength and fortitude of my clients waking up day after day, putting one foot in front of another and doing what they have to do. These are my heroes,” said Heidi Weiss, a social worker and health advocate at WJCS. “Nobody asks to be in this position. Our job is to make sure that you feel supported, talk you through, and help you identify support systems.”
Often, though, people are hesitant to request help, says Sandra Ala, division director Case Management Programs Behavioral Health Division at Jewish Community Services of South Florida. The agency offers a range of services. For example, its CareConnect program provides fee-based assessments for out-of-town family responsible for managing the care of relatives in the Miami-Dade area. JCS also helps family arrange for home health care aides, providing referrals to licensed home-care agencies, as well as its sister agency, Masada Home Care. Also available is fee-based counseling to help caregivers better manage their own self-care as well as the family situation.
Across the U.S., human-service agencies offer a variety of resources to help alleviate the caregiver’s burden, including assessment and case management, health care referrals, caregiver respite, as well as counseling and spiritual support, depending on the family’s needs. But these are not consistent nationwide. Caregivers don’t always know how to connect to these resources—or they are so overwhelmed with daily caregiving responsibilities that they simply don’t have time to research available services. “Families may not know where to turn,” explained Ala. “Then something happens and they don’t know what to do.” Those who turn to Jewish human-service agencies for caregiver support are often connected with the Jewish community and are referred by their rabbis. Some feel that an agency staffed by Jewish social workers and mental health counselors will be more culturally sensitive. Others have specific needs, such as Holocaust survivors, those who require kosher meal delivery, or clients who seek access to Jewish pastoral care.
COVID-19 has exacerbated caregiver stress. Many synagogues and agencies, such as JFS Houston, provide friendly visitor programs where volunteers visit the homebound or relieve caregivers by cooking or doing grocery shopping. Today, because of coronavirus health precautions, visits have been curtailed. Other such programs have gone virtual. For instance, in lieu of home visits, volunteers with Jewish Community Services of South Florida phone elderly clients and at Westchester Jewish Community Services, programs such as caregiver support groups and educational workshops, are now conducted over Zoom.
Lori Hardoon, senior director of Palliative Care Support at JASA sums it up: “When you are dealing with a serious or advanced illness, it is not an easy journey. There are amazing resources in the community, sometimes in your own backyard. You don’t need to walk this journey alone.”
Looking back, Tash reflects on the lessons he learned as a caregiver, such as the need to seek more professional assistance, better manage his own self-care, and prepare a checklist so community volunteers could better meet his exact needs. His advice to others: “Get help wherever you can, whenever you can. Take care of yourself while you are watching someone else.”
Paula Jacobs is a writer in the Boston area.