4 pieces of advice for caregivers, from caregivers

"It takes a village to raise a child." That's an African proverb meaning it takes a community to provide a healthy and safe environment for a child to grow.

But what happens when you grow up? Does the village disappear? As adults we don't realize there are a myriad of situations where we need our families and communities to have our backs.

An estimated 53 million Americans are acting as unpaid caregivers to loved ones, according to the National Alliance for Caregiving and AARP's Caregiving in the U.S. 2020 report. That means 1 in 5 people you know have had their lives upended to ensure the health and safety of loved ones. This often comes at the expense of their own mental, physical and emotional health.

As a former (paid) caregiver myself, I thought it was important to talk to Jacqueline Revere of momofmymom.com, a website that chronicles the caregiving journey between Revere and her mother. I also spoke with multidisciplinary artist Trezure Empire, who has been a caregiver to her mother for two decades. We get into how they manage caregiving emotionally, mentally, and what they need the most from their village and from themselves.

Here are four pieces of advice for caregivers, from caregivers.

1. Be gentle with yourself.

Your life is changing, and you only know what you know. There is no blueprint for caregiving, so be gentle with yourself.

"Forgive yourself because when you're starting out, you will make mistakes. You will get short-tempered," Revere says. "You will build up resilience over time. And so you sitting in a corner completely having a meltdown will happen one year, but in Year four, you'll be like, oh, just another Tuesday."

It's also important to remember to take time to mourn how this changes your life personally. This might look like getting therapy or doing internal work in order to bring your best self to the situation.

"It's very easy to give in to the frustration of caregiving," Empire says. "But it's what I have to do to be the best person I could be — to really check myself, not for her but for me."

2. Assemble your team.

To process all these feelings and tasks, you need to establish a care team — for yourself as well as for the person you are caring for. Figure out how people in your life can help with things like sending money or supplies, or taking time to sit with you. Revere says delegating tasks is especially important.

"Whether it's ordering someone to come and tidy up a house, having a meal sent, [or] scheduling some time to just show up and just walk," Revere says. "Something that one of my friends would do is she would just stop by and ... say, 'Hey, let's walk.' And something so simple would just help me to clear my mind."

3. Know your rights and explore your resources.

In the midst of all of this, many caregivers still have to work a 9-to-5 job. Communicating with your employer, setting expectations and possibly finding alternative ways to work are key. It's also important to learn about your rights as a caregiver.

"Just remember that this is unpaid work, and there aren't a lot of rights for caregivers," Empire says." Like, you can't deny someone for being disabled, but you can totally deny me for my role as a caregiver to someone that's disabled."

Look into your workplace's policies and state laws to see if you qualify under the Eligible Leave for Employee Caregiving Time Act (ELECT) to use paid vacation time or sick days to care for loved ones. If not, see if unpaid leave is an option under the Federal Family and Medical Leave Act.

While you're caregiving, the village can also help by "learning about advocacy, learning movements that are happening to get family caregivers paid, [and] the movements to have more social support," says Revere.

4. Caring for yourself is just as vital.

You also need to take time for yourself and create a system for living. Empire is very clear that "you should not be trying to take care of anybody before yourself."

"Your day's got to start for you first," Empire says."Your relationship with your life has to begin first, and you have to construct a system that allows that. And if it can't be first, then it has to be last, but there has to be time that is yours."

Everyone is different but finding time for yourself and starting your day with a practice like meditation, stretching, prayer or journaling makes a difference in a balanced life.

Finally, remember you have been brought into caregiving to ensure the wellness of someone you love — and part of wellness is the joy that you and your loved one bring to each other.

Like Revere says, "I think what's most important is making moments, making value of the time that you have."

The audio portion of this episode was produced by Sylvie Douglas and edited by Meghan Keane. Marielle Segarra is our host. The digital story was edited by Danielle Nett. Our visuals editor is Beck Harlan. We'd love to hear from you. Leave us a voicemail at 202-216-9823, or email us at LifeKit@npr.org.

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