Millions of working Americans serve as caregivers and care managers for a loved one living with a mental health condition, placing tremendous stress and added responsibility to their everyday lives. Stigma often prevents people from discussing the day-to-day role they play as a caregiver, leaving them feeling isolated, increasing stress and impacting their lives at work.
Mental health advocate and Executive Director of The Living Assistance Fund, Monica Luke below tells her story about how her role as a caregiver for her son impacted her work and how her employer supported her through her journey.
Continue reading for Luke’s five practical tips employers can take to support employees serving as caregivers.
The Distraction of My Son’s Illness
My son was living with my father in New York City, when I got the call. I was at work, preparing for an important meeting. At age 20, my son was being admitted to the psychiatric ward at New York Presbyterian Hospital. While he had previously been troubled and dropped out of college, this call was still shocking. I had no idea this was the beginning of a long journey into a system of care that is fundamentally broken.
I arranged to leave work for a few days and headed to New York where I visited my son on a locked ward. It’s a surreal experience when the door locks behind you. How do they know who to let out again? It’s not like those who are patients have signs on them. How must my son feel, knowing he is locked in?
When I met with the medical team, they said very little that made sense or that I could act on. I learned that it’s not unusual to not receive a diagnosis for a first psychotic episode – for the lucky ones the first episode is also the last. My son was past age 18, the age of consent, so would have to authorize the medical team to talk with me. Fortunately, on this first occasion, he did.
When the first rush of crisis ended, I headed home to return to work, even though he was still in the hospital. They would only keep him a few more days and it was up to me to help find him a placement in a residential or group home. The hospital was covered by the COBRA insurance I’d purchased for him. Finding a place for my son to receive treatment was difficult. I found myself making multiple phone calls during work hours, because that’s when facilities are open. I would make a call or two, go to a work meeting, come back and make some more phone calls. Without question, my work productivity was negatively impacted, but my boss was understanding, at least at that time.
I made a lot of phone calls to find space and the right fit for my son. We quickly discovered that NONE of the programs were covered by insurance. We found a place in Western Massachusetts, but my son had to travel there to be interviewed. Arrangements for his transportation took several more phone calls, as I figured out how to hire a car and arrange for my father to accompany my son to the interview and then back to the NYC hospital, so I didn’t have to miss more work. He could not be discharged until he had a placement – so it was all a Catch-22 of aligning timing and circumstances. We believed the program would help him, so we found a way to pay for it.
Good news – the program accepted him. I took more time off from work to travel to NY to get him discharged from the hospital, packed his belongings and took him to the program in Massachusetts. He lasted a week there. It turned out that this program, like many other treatment programs have strict rules and if you violate them once, you are expelled. People with psychotic conditions often find it difficult to follow the rules, which was also true for my son.
Once again, I took time off from work to pick him up – they were putting him on the sidewalk immediately, while I frantically called hospitals in the area to find a bed because he was once again actively psychotic.
At this point, I was falling behind on work deadlines and responsibilities. I wanted to take time off using the Family Medical Leave Act, but that meant unpaid leave. With high out-of-pocket expenses, I could not afford to do that. So, I continued working, doing the best I could and figuring out how to meet my most critical path deliverables. That was not easy in my position as a software engineer and tech leader given the fast-paced nature of the work.
My nights were spent staring at the ceiling wondering what to do, how to pay for it and what would happen next. My body and mind were exhausted as I continued to work and tried to stay on top of my son’s needs. Like many others, I have another child and needed to be there for her too.
Over the next several years, I discovered this was just the first of many times my son would be hospitalized in a crisis. Unlike other types of chronic illnesses, severe mental illness results in multiple crises and chaos for families. The mental health system is complex and extremely difficult to navigate. Families often serve as care managers, which is very difficult for working parents.
Our story was not unique. I have talked to countless parents of grown children with severe mental illness living in their basements because they cannot find safe and adequate care for them. These parents miss untold hours of work, go to work but must use work hours to arrange care and check on the safety of their child at home.
Nearly all parents facing a medical crisis with their child become anxious, stressed and struggle to perform well at work. Far too many leave the workforce, believing they have no other choice.
I was a highly trained and valued employee with many opportunities to change jobs. When my employer provided healthcare coverage for my son beyond age 23 as a disabled adult dependent, it was a key factor in my decision to stay for many more years. When I had managers who were openly supportive of my need to juggle the stresses of family and work, I worked harder, was more productive and performed at my best. Investing in supporting employees through the challenges of mental illness is not only good for your employees and their families, but it is also good for business.
Five Practical Steps Employers Can Take to Support Employees Serving as Caregivers:
Create a work environment of managers who are supportive and understanding of mental health issues to ease the burden of isolation that comes with mental illness. A workplace that openly supports mental health, allowing parents to take time for mental health crises and working with parents and caregivers to make reasonable schedule adjustments brings increased employee loyalty and retention.
Create benefit packages for mental health and wellness that meet the needs of employees and their families requiring adequate mental health coverage. Provide insurance policies that include evidence-based recovery programs for serious mental health conditions like Assertive Community Treatment (ACT) and coordinated specialty care for early psychosis. Paying for effective care reduces both hospitalization costs and the frequency of crises. These, in turn, positively impact the bottom line in improved productivity and performance as employees are less distracted and more engaged in their work.
Be sure employees understand leave policies, whether paid or unpaid. Often employees are not aware that mental health conditions qualify them to use these benefits. The supportive work environment will encourage employees to take advantage of what is already available and reduce the likelihood they will leave their positions permanently.
If you have an EAP, promote it and use the promotion as an opportunity to remind employees that the EAP provides support for employees and caregivers impacted by mental health conditions. This offers another opportunity to bring mental health out of the shadows and into the light so that employees can get the help they need when they need it. Also, emphasize the confidential nature of accessing EAP benefits.
Request that your benefits team or third-party administrator audit your health plan for compliance with state and federal Mental Health Parity laws and regulations. Providing adequate coverage for mental health care improves access, keeps out-of-pocket costs in line with other healthcare and helps employees and their loved ones access the care they need to get better.
Monica Luke is a mental health advocate and Executive Director of The Living Assistance Fund. She currently sits on several non-profit Board of Directors and is a former long-time IBM software development professional and technology executive.