Why Caring for Family Caregivers is Essential & Lifesaving

Just after her husband passed away, Nechama, who had cared for him around the clock, visited the doctor to address her own health. She hadn’t been to a doctor for years, as she was too busy focusing on her ill husband. Unfortunately, her health had rapidly deteriorated and she, too, passed away, just a few months after her husband. 

Sadly, stories like this are not uncommon. Studies show that 72% of those caring for ill, disabled or elderly family members report neglecting their own health, and that caregivers between the ages of 66 and 96 have a 63% higher mortality rate than people in that age group who are not caring for a sick or elderly family member.

Over the years at Yad Sarah, where I serve on the board and oversee international fundraising efforts, we have seen too many cases of people who were not able to care for themselves, mentally and physically, as they were too busy and occupied with their sick or ill family members.

This is a widespread problem that is putting lives at risk every day. As we prepare to enter a new Jewish year, it is an appropriate time to take count of the burden caregivers experience and make more of an effort to alleviate this. We must take better care of caregivers, and increase awareness around this issue. As many people do not realize until it is too late the burden that caregivers, like Nechama, can experience. 

Medical Equipment is Only Part of the Story

Among our services at Yad Sarah is providing medical equipment at low or no cost, allowing ill and elderly people to stay home rather than in a hospital or other medical facility. In fact, our organization saves the Israeli healthcare system more than 5.5 billion shekels a year- or $1.5 billion. This equipment, and all of our services, are available to anyone, without discrimination, as part of our mission to enable all individuals to live with dignity and independence, whether at home or in the care of their loved ones. This is truly amazing and inspiring. But it is only part of the story. 

What actually happens when patients are at home? We must remember that in addition to hospital beds, wheelchairs or lifts, many people also require constant help and care. When there are not enough resources for a professional caregiver or live-in home health assistant, tasks like bathing, dressing, and feeding patients fall on their family members. In addition to taking up time and being physically taxing, there are multiple emotional ramifications of being a caregiver.

This is often the case when families do not have the resources for professional caregivers or in-home nurses, and must tend to the disabled, sick or elderly themselves day and night. In fact, more than 60% of people caring for sick family members experience caregiver burnout, whose symptoms include physical and mental exhaustion, social withdrawal, changes in sleep and appetite, the inability to concentrate, weakened immune system and feeling hopeless and helpless. Between 20% and 60% of caregivers experience depression; the rates are higher among women. 

Lack of resources is only part of the reason that not enough people receive help. Caregivers also often feel ashamed or guilty when they experience stress or depression; one survey found that 41% of female caregivers cited embarrassment and shame as barriers for addressing their depression. While being at home rather than in the hospital is the first step, we need to also make sure to follow through and offer support for family members who are helping provide that care.

Recognizing and Caring for Family Caregivers

Experts have found that simply recognizing the role that caregivers play can lead to improved outcomes for their physical and mental health. Too often, caregivers are invisible to the healthcare system and to society, even though their efforts are critical to keeping people out of hospitals and other medical facilities. In addition, support for caregivers, including training, financial reimbursement for some activities; along with more cooperation between doctors and caregivers and more integration of community programs and the medical system, have potential to help improve outcomes for caregivers.

We see for ourselves at Yad Sarah that such efforts do indeed make a difference. Our Yad LaTomech program, which offers counseling and support to more than 4,500 family caregivers mainly caring for those with Alzeihmers and other neurodegenerative diseases, is the go-to program recommended by healthcare providers, social services and government agencies. Through this program, caregivers are first and foremost acknowledged for the important role they play and the sacrifices they are making in order to keep their loved one alive and at home as long as possible.

For many caregivers, participating in Yad LaTomech, which is staffed by volunteers, including retired social workers and psychologists, is essential to their physical and mental well-being. Volunteers like Ariela Hendler, who coordinates Yad LaTomech in the Jerusalem area, raised a child with cerebral palsy, took care of her own aging parents and has a brother-in-law with Alzehmers, can really relate to and help caregivers, and helps arrange the specific support they need. Caregivers deal with everything from exhaustion to anger to guilt, Hendler says. By focusing on caregivers’ challenges and needs, Yad LaTomech ultimately helps people take better care of their relatives. 

The diversity of services offered at Yad Sarah–from lending out bassinets for newborns to running a helpline for seniors to providing transportation for those with disabilities– means that we have long served people throughout their lives, and our services affect multiple family members and multiple generations. Supporting caregivers is a natural and important extension of these values. It is also an essential service—perhaps the difference between life and death– that should be readily available to every single caregiver.