Deciding whether or not you should share your status as a caregiver isn’t always an easy decision. Though in some areas of our life, like work, we have policies in place that often protect our jobs while we’re providing care for a loved one, that doesn’t make explaining our situation any easier, and it doesn’t mean that we’ll be met with the compassion, empathy, flexibility, or any of the other things we deserve.
And for many nontraditional caregivers, they may also be wondering if they should disclose their caregiver status at school or at work.
As someone who has been in each of these situations (more than once!) I understand the unique challenges you face as you navigate each of these life transitions and their impact on your role as caregiver.
Caregivers at School
3.4 million children in the United States are providing unpaid care to an adult recipient, including at least 400,000 kids ages 8-11.
For many young caregivers and their families, deciding what and how much to disclose to their friends, teachers, coaches, and other important folks in their lives is a challenge.
The idea of young people providing significant care for an adult is not something that’s always met with the compassion or understanding we believe it deserves, which can leave families fearing that disclosure may lead to judgment, shame, or intervention by school staff or other professionals.
School-aged caregivers face unique challenges and though this area is extremely understudied, the research we do have is clear – young caregivers are more likely to experience adverse effects that impact their academic performance, behavior, and ability to participate in activities alongside their peers.
Even when they do disclose their status, they often find that there is little support for them that allows them to effectively balance their roles, and as a result, many young people drop out of school when they reach legal age.
Caregivers at Work
Once they’ve completed school, caregivers are often forced to take on a new challenge: navigating their role as a professional in the workforce while also providing care.
Estimates suggest that 20% of the American workforce is providing some type of unpaid care for an older loved one or a person with a chronic illness, and more than half of these folks are employed full-time. 70% of these folks have rearranged their work schedules or found more flexible positions in order to meet the demands of caregiving.
For many caregivers, it can be tricky to decide if, when, and how much to share with your employer about your role as a caregiver. You might fear becoming irrelevant if you need to ask for more flexibility or a shift in responsibilities, jeopardizing your ability to continue to advance in your career.
You may feel you’re letting your team down by asking to make accommodations. Or you may fear others will think you’re not as reliable, or perhaps may even take advantage of your vulnerable status and retaliate.
And for those caregivers who do share their role as a caregiver with your employer, even with colleagues or managers are initially supportive, you may find that navigating policies around PTO, FMLA, Paid Family Leave, workplace benefits packages, and other things means to protect you are cumbersome or not always implemented fairly, leaving you feeling like you’re flying solo.
Despite the large number of caregivers who also work outside their role as a caregiver, an Employee Benefits Survey from the Society for Human Resources Management found that only around 5% of employers provide referrals for workers looking for help navigating benefits and looking for resources. According to a 2020 AARP report, more than half of caregivers say they’re offered paid sick days (53%), flexible working hours (56%), and unpaid family leave (53%). But less than 40% have paid family leave, and just 25% say they have employee assistance programs and telecommuting opportunities.
The result? For many caregivers, they eventually have to make tough choices – continuing to work while somehow outsourcing some of their caregiving responsibilities, or reducing hours/quitting their jobs to take on the demands of caregiving. Together, it is estimated that caregivers are missing out on nearly $3 trillion in lost wages, pensions, retirement, and other benefits in order to provide care for a loved one.
So, should you disclose your status as a caregiver?
Each person and family is unique, and I know that there are many valid reasons why disclosing your situation may cause more harm than good. But in my experience, sharing that you’re a caregiver with teachers, coaches, colleagues, supervisors, and others can often feel like a relief, and may give us an opportunity to get access to the resources we need. And, if the reaction isn’t as expected – it can give us an indication that it’s time to consider finding an employer or school district that can give us the things we need.
I’ll give you two personal examples:
My sophomore year of college, I went through a particularly tough semester. I was taking a full course load, attending twice a day swim practices, working my job as a nanny, and trying to balance helping my dad care for my mom who was increasingly ill. There were a few people who knew my situation, but I tended to keep most of the struggles I faced to myself. I finally cracked sometimes that winter, and shared my challenges with two important people – my swim coach and one of my favorite professors. And overnight, they stepped up to help. My coach helped me take some time away from the team, adjusted some of my practice schedule, and advocated with my professors to get extensions on projects and more time on tests.
My favorite professor also advocated for me with other professors, and set up an appointment for me with the on-campus mental health clinic to take care of my own mental health and discuss potential resource referrals. He gave me space to attend the appointment when I should have been in his class.
Both of these adults knew that I didn’t need huge changes, what I needed was time, space, and balance to get through a tough season. And as a result, I was able to carry some of those skills with me into future semesters and life after college, and find better balance overall.
As a professional, I’ve had several, varied experiences in disclosing my role as a caregiver, not all of them positive. But perhaps the best example of an employer who got things right was during my time at a nonprofit in Minneapolis.
By this point, I felt confident and unapologetic asking for what I needed – namely, work that challenged me and helped me grow as a professional, while also allowing me the flexibility I needed to provide the right care at the right time. This meant that there were times that I was going above and beyond, able to grow the program and contribute at my highest potential – and there were times when I needed to step away, work offsite, call-in to meetings (this was before COVID made remote work common), or make space mentally for the load I was carrying. My colleagues often stepped up to help out when I couldn’t be there, kept me in the loop via email and phone, helped me continue to grow and learn as a professional, and were never worried that I would drop the ball or not get things done. Together, we created a system that worked and allowed me to advance my career while also providing care.
Now, as I’ve continued to move on in my career, I am able to identify early when organizations aren’t going to be able to provide the things I need. I’m quicker to trust my gut and know when it’s time to move on. And as we continue to build Caregiver Collaborative, Laura and I are clear about the type of company we’re trying to build, the values that we hold, and the long-term balance and benefits we’re envisioning for our future.
If you do decide that it’s time to disclose your status as a caregiver, here’s a few tips I’ve found helpful to keep in mind:
AT SCHOOL:
- DO: Find trusted adults with whom you’ll share. This might be a favorite teacher, the school nurse, a mental health professional, or an administrator.
- DO: Give high level details about what’s going on and what you need, for example: “My dad is having an exacerbation and I may need to attend appointments with him.”
- DO: If you’re the parent of a young caregiver, it may be helpful to request a conference with your child and their teachers, nurse, social worker, etc. to explain the situation and come up with a plan for ensuring your child can balance their role as a caregiver with their role as a student.
- DO: If necessary, ask for help finding resources that can help you better balance this role so your child can still find plenty of opportunities to just be a kid.
AT WORK:
- DO: Consider sharing your status as a caregiver early, perhaps even during the interview process. I know it can be intimidating to talk about this before you’ve even secured the job, but finding out before you accept if they can offer you the flexibility and support you need can provide insight into the company culture before you’re committed. Remember – interviews are just as much about you finding out if it’s a fit for you. If they react positively, then you might feel more confident accepting, and if they react negatively or don’t offer you the position as a result – then it’s probably for the best.
- DO: Tell your manager high level details about what’s going on and what you need, for example: “My dad is having an exacerbation and I may need to attend meetings or bring him to appointments.”
- DO: Come up with a plan for covering your duties should you need to be out, and keep your calendar up-to-date. Clear communication and careful planning makes it more likely your team will trust that they don’t need to worry about things getting dropped.
IN ANY SITUATION:
- DON’T: Share overly personal details. For example, you may be worried about paying medical bills, or be frustrated by family members who aren’t pitching in, but these aren’t things we need to share with our managers.
- DON’T: Agree to solutions that aren’t helpful for you. I always encourage folks to get comfortable early with self-advocating and only agreeing to solutions that will actually help you while also meeting your professional goals.
We hope you found this helpful! We know that deciding what and how much to share can be tricky, and we want to help. Do you still have questions, or examples of schools & employers that are doing a great job of supporting caregivers? Drop them in a comments or connect with us. We’d love to hear from you!
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