If anybody knows the pressures facing employees who are caring for loved ones who are at the end of life, it's June Thompson.

 

Thompson has worked as a home health aide for Peachtree Hospice for eight years, the last four in Fort Smith. Now when she arrives home from work, she takes care of her 90-year-old mother, Mona Brothers, who lives with her and suffers from Parkinson's disease and dementia.

 

Thompson, who is sharing the caregiving responsibilities with her sister, is determined not to make the same mistakes many of her clients have made. Through the years, she has seen how working caregivers neglect their own needs, sometimes for years, in order ever to be available for their loved ones. At times, she has counseled that if they don't start taking care of themselves, she'll be taking care of them next, and so she has joined a gym she intends to visit at least twice a week. Still, she finds it difficult to leave her mother to take care of her work responsibilities.

 

As a hospice employee, Thompson has an understanding employer, a luxury many of her clients have not enjoyed. Some employers don't give their employees the time off they need and penalize them professionally – especially when the caregiving responsibilities last for years. She can't help but notice the difference in the way employers treat an employee with a sick child and one with an aging parent. "Just put them in a nursing home," she said more than one client has been told.

 

Those are the kinds of attitudes that the National Hospice and Palliative Care Organization is trying to address through its Caring Connections workplace outreach initiative, It's About How You LIVE – At Work. Funded by the Jacob & Valeria Langeloth Foundation, the initiative is providing materials to 35 hospices across the country for distribution to employers to increase awareness of caregivers' needs.

 

The materials include brochures as well as an employer manual with sample policies and procedures. Information is provided about the Family and Medical Leave Act, how to support caregiving employees, advanced directives, and what to do when an employee suffers the loss of a loved one or colleague. It includes surveys for both employees and managers that help companies assess how many employees are caregivers, how many face grief, and how their company supports them. Also included are newsletter articles and fliers that can be posted in the office.

 

Kathy Brandt, the NHPCO's vice president of consumer and caregiver services, said that there is no one-size-fits-all approach for employers to work with employees who are caregivers or who are dealing with grief. "Employers have to figure out how to make it work, and we talk a lot about this," she said. "These aren't things where we're saying, 'This is the only way to do it.' We're saying, 'These are things you can think about and adapt them as you're able to depending on the size and scope of your organization.'"

 

Meanwhile, the NHPCO is making the case that being flexible with caregiving employees isn't just the right thing to do, but it's also good business as well. The big picture is that American businesses lose from $17.1 billion to $33.6 billion each year because full-time employees are also caregivers. But at the company level, it means that some employees are forced to quit their jobs in order to care for a loved one, which means that employers must find and train replacements.

 

Along with employee caregiving, grief is another major issue facing employers, and according to Brandt, many don't handle the issue correctly. Many fail to differentiate between funeral leave, which provides employees just enough time to pay their respects, and bereavement leave, a long-term arrangement that recognizes that the death of a loved one can affect an employee for a long time and that grief can strike at any moment. Flexible leave, rather than just more of it, as well as an understanding workplace are keys to helping employees through tough times such as holidays and birthdays.

 

"We don't do our employees any favor or our company any favor by just kind of ignoring it," Brandt said. "We'd be better off acknowledging that it's going to happen and saying as a team, 'Suzy just lost her husband. How can we support her, not just in terms of baking a casserole and not over this one week or two weeks, but over the next six months or year?"

 

Jim Petrus, chief operating officer at Peachtree, said the hospice plans to use the materials provided by NHPCO to reach out to local employers, larger ones first.

 

According to Petrus, caregivers undergo a lot of self-questioning as they struggle to do the right thing for their loved one. Sometimes they resent their responsibilities or the person they are caring for – emotions that are followed by guilt. Meanwhile, the lack of sleep, the physically demanding aspects of caregiving, and the stresses of trying to be all things to all people can take their toll. "You can easily reach the end of your fuse," he said.

 

Still, according to Petrus, despite the emotional and physical challenges, the time before a loved one's death can be very meaningful for their caregivers. "It's such a strain physically and emotionally, but for most people, I don't think they would trade it because there's a great deal of reward for them knowing that they've taken care of that loved one," he said.

 

June Thompson knows those rewards. Recently, the light in her mother's eyes came on during a visit with her grandson and great-grandson, and she shared memories about her husband's farm and animals that she hadn't discussed in years. It was the kind of family experience that might not have happened if she were institutionalized. It's a long goodbye, and Thompson wants to experience as much of it as possible. "I think she'll stay with me for a while," she said. "We had talked about maybe putting her in the nursing home when she started declining, but now that I've gotten her, I don't know if I'll let her go."