Where do caregivers go for support? A guide to combating compassion fatigue

The physical, emotional and financial costs of caregiving

Caregiver burnout affects millions. Here’s how to fight it.

Caregivers must perform a delicate balancing act — caring for their loved one and other family members, while also caring for themselves.

“These challenges often lead to emotional and physical stress as caregivers try to find a way to balance all of their caregiving duties and other life responsibilities,” says Amy Goyer, a caregiving expert for AARP.

America’s caregivers spend an average of almost 25 hours a week providing care for their loved one, with almost one-quarter of those surveyed devoting at least 41 hours, a study by AARP and the National Alliance for Caregiving found. That can include helping loved ones perform daily activities, such as bathing, or they may provide medical care, such as giving injections or dressing wounds. What’s more: many caregivers do so without having received any training to help them handle those responsibilities, the study found.

As a result of those demands, “caregivers don’t care for themselves (and) their health really starts to suffer,” says Gail Hunt, president of the National Alliance for Caregiving, a nonprofit coalition of organizations working to improve the lives of caregivers.

The demands of daily life often mean caregivers let their social life slide. “That means a lack of connections and a shrinking support system,” Goyer says. “We become isolated, which puts us at risk in all sorts of ways, including in terms of our health.”

Stress and exhaustion can also have a major impact. “We may become short-tempered, less patient, scattered and discouraged,” she says. “It’s hard to keep up a positive attitude and encourage those we are caring for when we are so depleted.”

Finding strength in support

With more than 43 million Americans providing care for a loved one, caregivers should know they don’t need to soldier on alone, as resources are available to make their physical, emotional and financial lives easier.

Goyer recommends that caregivers take part in a support group, either online or in person, so they can draw on the knowledge and insights of others. While organizations like AARP offer a wide range of caregiver resources from self-care to legal and financial help, caregivers can find this kind of peer-to-peer support from Facebook groups that allow users to share experiences and insights to better equip them with assisting loved ones with specific illnesses, such as dementia.

For caregivers who work, or who want their loved one to have contact with others, adult day care may be an option, Hunt says, and fees are usually based on a sliding scale.

Caregivers also might be able to find respite care for their loved ones, so they are able to take a break, or can seek homemaker assistance, meal delivery and other services that can make caregivers’ lives easier, Goyer says.

One law designed to empower caregivers is the CARE (Caregiver Advise, Record, Enable) Act. Already adopted by 32 states and the District of Columbia, the measure is designed to help caregivers stay informed when a loved one is in the hospital, and to help them be better prepared to care for that person once he or she returns home.

Among other things, the act requires a hospital or rehabilitation facility to record the name of the caregiver when a loved one is admitted, and then notify the person when the patient is to be discharged. It also requires hospitals and rehabilitation facilities to provide information and instruction on medical tasks the caregiver will need to perform.

The costs of care

Along with the emotional and physical challenges, caregiving can also place heavy demands on a caregiver’s financial life, says Frank McAleer, vice president of financial planning and retirement solutions at Raymond James.

Those who leave the workforce to be a caregiver lose an average of $325,000 in wages¹ and benefits, McAleer says. They also spend about $11,000 out of pocket each year to help care for their loved one.²

Even those who continue to work might have to cut back on their hours or skip a promotion in order to provide care, Goyer says.

That means it’s incumbent that individuals plan for the possible financial impact of caregiving. That planning typically needs to begin when clients are in their 50s, McAleer says.

But many people don’t want to admit their concerns, or know where to begin. To address that, McAleer educates Raymond James’ financial advisors on questions they can ask clients regarding any potential caregiving needs that could affect their financial plans.

The company has also made available guides to help clients navigate health care, caregiving, transportation and housing needs, both for loved ones now and for themselves in the future.

“One common theme is money,” McAleer says. “Caregivers often have to navigate financial topics with their loved ones, while also managing their own money.”

By proactively preparing a financial roadmap for such costs, caregivers are thus better positioned to combat any compounding stress that may contribute to their emotional and physical well-being.