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Caregiving: Helping the Caregiver, Part 3

November 25, 2020

This is Part 3 of our caregiving series to mark National Family Caregivers Month.

If you missed Part 1, click here.

If you missed Part 2, click here.

 

Family caregivers don’t get paid nor do they often get the recognition or the caregiving help they deserve. Yet, American society depends on them. According to a 2013 report from the AARP, about 40 million family caregivers in the United States provided work worth an estimated 470 billion dollars every year. Now, there are an estimated 53 million family or friend caregivers in the US, caring for adults or children with special needs.

There are many reasons why someone may become a caregiver, sepsis is just one. Many people survive sepsis and septic shock without any long-term issues, but many do develop post-sepsis syndrome, or PSS.

The risk of developing PSS is highest among people who were treated in an intensive care unit (especially if they needed a ventilator) and those who had to be hospitalized for an extended period. The older a patient is, the higher the risk too.

Some signs of PSS include having insomnia and nightmares when they can sleep, panic attacks, difficulty concentrating, muscle and/or joint pain, depression, anxiety, difficulty concentrating, and decreased cognitive (mental) functioning. Although PSS can affect anyone at any age, one study found that for seniors, up to 60% of hospitalizations for severe sepsis resulted in worsened cognitive and physical functioning.

Who Are the Caregivers?

Caregivers come from all walks of life, but the majority are female and in the so-called sandwich generation. This means they are helping care for their parents as well as their dependent children. People between 45 and 64 years make up 23% of caregivers for aging relatives.

Seniors make up the next big group of caregivers. Seventeen percent care for another senior, usually a spouse. But often the person who needs care is a friend or neighbor.

The type of care they provide varies quite a bit. Some caregivers only need to check in on their loved one or supervise medication distribution, for example. Some manage the finances and provide transportation to appointments, while others provide day-to-day physical care. But what they all have in common is they may need help from time to time, especially if they are the sole caregiver for 24 hours a day – every day.

So how do we help the caregivers?

Businesses Can Play an Important Role

Businesses can go a long way in helping their employees juggle work and caregiving duties.

Employees often find themselves struggling. A survey from 2006 found that “in a majority of cases, caregiving compromised the ability of employees to work and often resulted in reduced hours, dropping out of the workforce, or early retirement. AARP estimates that eldercare already costs U.S. employers “$6.6 billion to replace employees (9% left work either to take early retirement or quit) and nearly $6.3 billion in workday interruptions (coming in late, leaving early, taking time off during the day, or spending work time on eldercare matters).”

Half of employed caregivers surveyed, aged 26 to 35, and almost a third of those between 18 and 25 said they had to quit their job in order to provide care to a loved one. Not only does this affect them financially in the moment, it also affects their future earnings – and savings for their own senior years. At the same time, companies lose valuable employees and must spend resources on hiring new staff.

Employers that encourage a “care culture” and provide assistance, in terms of flexible hours, flexible work arrangements (telecommuting, job sharing, etc.), paid family leave, and other benefits would retain their employees and help them manage their own stresses.

Healthcare Workers Can Provide Support Through Education

When a patient is discharged from a hospital or rehab facility, a family caregiver likely takes over. There are many times along the discharge timeline when caregiver support, especially for an illness like sepsis, can break down, starting with the discharge plan.

Mari Jan Pitcher, MSW, a social worker at Michigan Medicine, University of Michigan, explained how providing education on the impact of sepsis post-discharge, is important. “What we find is so many people don’t really understand why the person who’s been ill isn’t getting better and why it’s such a prolonged process. A lot of times, different people in the medical profession don’t relate it back to sepsis or to other things that have occurred. So there’s a lot of frustration.”

Education also means validation. When healthcare professionals take the time to educate caregivers, they acknowledge that there may be lasting issues and there can be problems ahead. Friends and other family members likely understand issues related to commonly understood health issues, like cancer. Then it’s all hands on deck and everyone rushes in to try to help, said Pitcher. But with sepsis, they don’t know.

“I think that caregivers don’t get some of the natural support [when caring for someone who had sepsis] because people don’t understand sepsis. But then you have to educate people on it and educate caregivers on the need to get help. This is like a marathon, not a sprint.”

Education can start with hospital staff providing caregivers with brochures, literature, or videos caregivers to share with friends and family. Pitcher said, “I hear all too often, that both the patient and the caregiver get asked, “Well, why isn’t he getting better?””

Those Who Are Caregiving Must Ask for Help

It’s a common thing. Someone in the family becomes seriously ill and friends, coworkers, and family members gather around and try to help. Some may provide meals or offers to drive children to and from school. Others don’t know what to do and say, “If you need anything, just ask.” And as reluctant as caregivers may be, that is exactly what they must do.

“There’s no shame in asking for help,” Pitcher said. “It takes more strength to ask for help and accept it than it does to ruin your own health and consequently not be able to provide the same level of care to your loved one as you want to.”

There are also official sources for help. Social workers are well placed to provide information about local services. “I always encourage people to start with their primary care physician,” Pitcher said. “Most PCPs have a social worker associated with their office. So ask to talk to the social worker about available community services. If they’re getting home health care, for whatever reason, maybe for physical rehab or whatever. Ask to talk to the social worker with the home health organization.”

Services do vary from state to state, and county to county. Social workers are generally aware of what is available.

Therapy: Caregiving for the Caregiver

Speaking to a therapist can also be valuable, even during a pandemic when in-office sessions may not be possible. Many therapists are offering sessions by phone or a video program like Zoom. Caregivers could ask the hospital or doctor’s office for recommendations. Insurance companies may have therapists they work with. Another option is using a therapist finder, like this one on the Psychology Today website.

It’s not easy being a caregiver. But reaching out for help, using the resources that are available, can help make it easier. “Most of us can step up for additional caregiving for short periods of time. But to do it on a prolonged basis and find balance in our life is not sustainable for anyone, no matter how superhuman we think we are,” said Pitcher.

Learn more about life after sepsis watch this video or visit the Sepsis Alliance Sepsis Survivors page.