Tips to Avoid Caregiver Burnout

In the United States, more than 37 million people are caregivers to elder family members or loved ones, with almost a quarter falling into the sandwich generation: adults who are caring for their children and aging family members simultaneously. This can often lead to caregiver burnout.

“Unpaid caregivers provide the vast majority of home care,” says Dr. Cynthia X. Pan, a geriatrics and palliative medicine specialist at NewYork-Presbyterian Queens and professor of clinical medicine at Weill Cornell Medicine. “They are working in addition to caregiving for their family members and it can be a lot of stress.”

Family caregivers often help loved ones with what is called instrumental activities of daily living, including housekeeping tasks, shopping, and managing finances. Caregivers may also be relied on to help with cooking and feeding their loved ones, as well as manage and administer medications and help with scheduling and taking them to doctors’ appointments. “It’s a lot of responsibility and there’s no formal training,” says Michelle Solat, a licensed clinical social worker at NewYork-Presbyterian Queens. “With family caregivers, it is more like, ‘Let me figure this out.’”

In recognition of National Family Caregivers Month, Health Matters spoke with Dr. Pan and Michelle, who offered five essential tips to help avoid caregiver burnout and provide ways to ease stress.

Find out as much as possible about the patient’s health, their medical condition, any medications or treatments they are on, and keep a record for easy reference. Knowing these details can help caregivers manage the patient’s health care, understand what is happening, and anticipate how an illness might change or worsen, according to the National Institute on Aging.

For example, for people caring for a loved one with dementia, the journey can be a long one, says Dr. Pan. “At first, they may need somebody to remind them to take their medicine or of an upcoming appointment. But as time progresses, they may need help with walking, going to the bathroom, and getting out of bed. Knowing that support needs, including the physical demands, will increase over time will help the caregiver better plan for what they might need so they are not overwhelmed.”

Dr. Pan and Michelle recommend ensuring that advanced directives and formal documents are taken care of and to discuss with your loved ones their wishes. Advanced directives are formal documents that detail instructions and preferences for a person’s future care and go into effect when the person reaches a point where they cannot make their own medical decisions anymore, states the institute. “If it hasn’t been established yet, we do urge families to look into advanced directives before it becomes too late,” says Michelle.

There are three main types of advanced directives. The institute defines them as:

• A durable power of attorney for health care identifies someone – called a health care proxy or health care agent – who can make decisions for a person if they cannot make them themselves. The patient appoints health care proxies specifically to carry out this important responsibility.
• A living will would indicate the medical treatments or care a person would want if they had a life-threatening illness, which treatments they would not want, and under which conditions each of their choices would apply.
• Physician orders for life-sustaining treatment or medical orders for life-sustaining treatment are medical order sets completed by physicians and other medical professionals, based on a person’s medical care preferences that health care professionals can act on immediately in an emergency. Typically, these orders are created when a person is near the end of life or is critically ill and knows the specific decisions that might need to be made on their behalf.

“As an individual becomes seriously ill, it is so important for caregivers to make room for advance directives conversations, even if emotionally overwhelming,” says Dr. Pan. “I have seen too many patients and families who could not find the words or courage to start these meaningful conversations, leading to guilty feelings, fractured relationships, regrets, and suffering. Ask for help from your doctor, or a hospital’s palliative care or geriatrics team to help facilitate these sensitive conversations.”

Don’t be afraid to ask other family members or friends for help, especially if they can handle different tasks, says Michelle. “Consider their strengths. Divide and conquer – one person does not have to take on everything,” she says. “Maybe someone is more hands-on and better with personal care, another who is more financially minded and can take care of the finances or may feel more comfortable taking on the medical aspect of things, like taking the patient to doctor appointments.”

This worksheet from the National Institute on Aging can help coordinate responsibilities, shares Dr. Pan.

Caregiving can have stressful moments, but knowing how to react in these situations and when you have to adjust care can help manage the pressure. Michelle advises keeping a notebook to write down what you are learning, including what works for the patient (and yourself) in terms of daily care.

For example, patients with dementia may feel distress and become agitated. When moments like these arise, it can be helpful to have resources to turn to. “Sometimes playing their favorite show or film on the TV or music that is familiar to them, giving them pictures to look at, or stress balls to play with can help,” says Michelle. “Keep notes about likes and dislikes, and what works.”

Dr. Pan says to avoid caregiver burnout – it’s important for you to put time into your own well-being. “Remember what the airlines say: put your oxygen mask on first and then help those around you,” she says.

Go to your doctor appointments and take care of your mental and physical health. Nearly 25% of caregivers agree that caregiving makes it challenging to maintain their physical health. And four in 10 caregivers report they rarely or never feel relaxed, according to a study led by AARP on caregiving in the U.S.

Studies show caregivers tend to engage in activities to manage stress, like connecting with family and friends and listening to music. Still, they do not attend therapy or support groups as often. Dr. Pan recommends finding support if you need it and never feeling alone. Caregiver support groups are offered by the National Caregiver Action Network and disease advocacy organizations, such as the Alzheimer’s Association and American Cancer Society.