Caring For a Loved One with a Chronic Health Condition Can Be Emotionally Stressful: CaringBridge Offers Tools and Resources to Help
Managing family life with a loved one on a health journey can be overwhelming. But there is a free service that can help take at least some of the stress away.
CaringBridge is a no-cost, non-profit health platform that surrounds family caregivers with support while they care for a sick, or elderly loved one. Founded in 1997, the organization offers tools to share and document a health journey, simplify care coordination, and connect caregivers with a supportive community.
Tia Newcomer
“Our vision is to create a world where no one goes through a health journey alone,” said Tia Newcomer, Chief Executive Officer, CaringBridge. “Through our core values of make connections, give hope, keep it simple, and offer guidance, we strive to make a meaningful impact in the lives of family caregivers and the loved ones they support on a health journey.”
Connecting Caregivers to Family and Friends
According to Newcomer, caring for someone living with a chronic or life-altering illness is often a 24/7 responsibility and is rarely a planned event. Overwhelmed caregivers tend to retreat inward and become isolated or lonely – a condition the U.S. Surgeon General’s office likened to smoking 15 cigarettes a day.
CaringBridge helps to ease those feelings of being overwhelmed by creating a safe and private online space for caregivers to communicate to their community, capture their thoughts, and coordinate help on their terms. Over one million CaringBridge pages have been created since 1997, with more than 240,000 daily visitors surrounding family caregivers and patients with support.
“From the time someone is diagnosed or admitted to the hospital, caregivers may be bombarded with questions from friends and supporters asking what is going on and how they can help,” said Newcomer. “With CaringBridge, caregivers can communicate to everyone all at once, relieving them of the burden of individually updating people about milestones like testing results, surgery outcomes, and treatment plans.”
In addition to sharing important milestones and communicating health updates, CaringBridge makes it easy for caregivers to activate their community and ask for help – often the most difficult thing to do – and easy for the community of their choice to provide the help that’s actually needed.
People use CaringBridge to coordinate rides for their loved one to doctor’s appointments, start a GoFundMe campaign, ask for gift cards, request grocery deliveries, and more. Caregivers can be very specific about their requests and wishes so that they don’t, for example, end up with three meat lasagnas delivered to their house on Wednesday, when they really need a meal for Tuesday and nobody in the house eats meat.
“Supporters of someone on a health journey tend to be well-meaning, but asking a caregiver, ‘what can I do to help?’ is vague and puts the burden on the caregiver to respond,” Newcomer said. “That is why we built prompts and tips into our system that make it easier for a caregiver to identify exactly how and where they need help and easy for a supporter to activate the support they can provide.”
Caregivers also use CaringBridge for journaling purposes, to capture their loved one’s health journey and process their own emotions about caregiving. While some caregivers opt to keep their CaringBridge journal private, others share it with friends and family, who can add their own supportive reactions and comments. Some will print out their journal to look back on the journey and the support they received for years to come.
“Capturing a loved one’s health journey and bringing together the community of their choice to rally support improves emotional health and social support,” Newcomer said. “In fact, CaringBridge users were found to have three times greater connection to family and friends than the national average, four times less loneliness, and double the sense of purpose as a caregiver.”
Caregiving Costs Can Add to Caregiver Stress
Adding to caregivers’ feelings of overwhelm is the stress of financial concerns. They may lose income if forced to quit their job, work shorter hours, or take unpaid leave to care for their loved one. They also are likely to incur significant out-of-pocket costs for medical equipment, personal care supplies, treatment deductibles, or home modifications – none of which are covered by insurance.
“The financial stress of caring for a loved one can lead to negative impacts on the caregiver’s emotional health, primarily in the form of depression, guilt, anger, and resentment,” Newcomer said. “Caregivers also report negative physical impacts. They tend to stop exercising, become more sedentary, and adopt unhealthy eating habits.”
Newcomer added that providing access to a range of behavioral health services that are affordable can make a significant difference in a caregiver’s behavioral health. That is why she commended the HealthWell Foundation for providing support to family caregivers through its Oncology Caregiver Behavioral Health Fund. Through the fund, HealthWell provides up to $2,000 in copayment assistance for prescription drugs, counseling services, psychotherapy, and transportation costs needed to treat or manage behavioral health issues related to providing caregiving to a cancer patient.
“Patients with chronic and life-altering illnesses like cancer, Parkinson’s disease, or Alzheimer’s don’t go through their journey alone,” said Michael Heimall, President & CEO, the HealthWell Foundation. “They are on that journey with the family and friends who surround them. We need to take into consideration the impacts of caregiving on both the caregiver and the patient. Through our fund, caregivers who are struggling with depression or anxiety can get the assistance they need so they can better support their loved one.”
The fund is one of several mental or behavioral health funds HealthWell has launched in recent years to help those facing financial toxicity afford the care they need. Others include a Cancer-Related Behavioral Health Fund and an Emergency/Medical Workers Behavioral Health Fund.
“The cost of health care in the United States is getting higher every year, and for many it has become financially toxic,” said Heimall. “This financial toxicity can manifest itself in mental health disorders like stress, anxiety and depression, as well as poor physical health due to the emotional burden patients and their families face. Organizations like HealthWell and CaringBridge provide crucial support and a much-needed safety net for Americans in need.”
