JUANA SUMMERS, HOST:
For many people who unexpectedly become caregivers to a family member, it's hard to know where to start. That was definitely the case for me and my family. While it's gratifying to be able to care for a loved one, it can also feel hard to find community or to know what resources are available to help. That was Jennifer Levin's experience when she became a caregiver for her father. She told me it was all new to her.
JENNIFER LEVIN: I had never even stepped into a nursing home before. At this point, I was 32.
SUMMERS: According to AARP, there are about 10 million millennials who are family caregivers. When Levin first came across that data from 2015, she was stunned.
LEVIN: I thought, this is 1 in 4 of us. I know more than four people.
SUMMERS: So after her father died, she founded an online community that focuses on millennials who are finding ourselves navigating this process.
LEVIN: There's no reason we should be going through this alone and trying to reinvent the wheel each time.
SUMMERS: The community that she founded is called The Caregiver Collective, and I wanted to know what the members have taught her.
LEVIN: So when, you know, you have a average idea of whom a caregiver is - a retired, maybe - probably - woman who's taking care of a even more geriatric parent - you know, they've already built their lives. Whereas when you're doing this at a younger age, you are thinking about, well, how am I going to date when I'm also responsible for somebody at home? How can I explain to somebody what I do and that there's always a priority that's going to usurp our plans? How can I have children? Can I afford it if I'm caregiving? Do I have the time? How do I afford a wedding? There are a lot of considerations that came up because of the age that we are at when we are caregiving.
And then there was also the fact that as millennials, a lot of us came of age and entered the workforce during major economic crises. And we've, you know, grown up with a gig economy that has then been compounded by COVID, compounded by unprecedented student loan debt. And you add on the costs of caregiving, whether that's financial costs or the time taken away from hourly wages, you know, that sets up an entirely different economic catastrophe.
SUMMERS: Just on a practical note, I think so many of us who are millennials are in that sort of messy space of trying to make sure that we handle it all, right? Like, if we have children, making sure that we pour into our kids and raise them well, while also making sure that an older adult, or as you know, perhaps even a spouse in our life, they require care and they have needs that are often on demand. They can't wait. Do you have any advice for people who are in that space now and trying to figure out how to make both things work - both sets of caregiving work - if you're a part of that sandwich generation, like, at the same time?
LEVIN: My advice for people who are caught in this conundrum is outsource by identifying people or a person in your life who has available resources to take some of the burden off of your plate. What is something that you'd be comfortable one time, or even regularly, passing off to somebody? Whether that's, you know, helping to babysit so that you can either, you know, take somebody to a doctor's appointment or even just go take a walk for yourself. Who can help you drop off a meal or pick up the groceries that you're unable to get because your kid is sick and you can't leave them alone with the person that you care for? I also really recommend reframing the idea of self-care. Self-care has been sold to us as bath bombs or...
SUMMERS: So you're saying not the face masks and the manicures...
LEVIN: (Laughter).
SUMMERS: ...And the pedicures?
LEVIN: Those are lovely, but no, that is not at all what I'm saying. When we talk about caregiving, stress levels are so intense that it leads to negative coping mechanisms like drug abuse, alcohol abuse, even suicide ideation. So self-care needs to be truly taking care of yourself, whether that's seeking therapy, finding a community from other caregivers who are your age, who can help mirror your experience back to you and you can also pick up tips from. These are the types of things that I really underscore when I'm talking about self-care, things that can help you build tools to push you through into the future.
SUMMERS: We talked about your role in stepping in to care for your father, and I know that - as I am - you're an only child. But a lot of people that I've talked to who are stepping into caregiving roles for parents, they're trying to figure out how to do it perhaps with a sibling who may or may not be as involved as they are. There may be differences of opinion. Talk a little bit about what you learned about people who are figuring that part of it out, and what you might say to someone who's trying to navigate that when people might not all agree what's best for their loved one.
LEVIN: I've seen this in the people that I've interviewed take two different forms. One is that there's the sibling who has gone MIA and you're dealt with the majority or all of the responsibility for care, or siblings that are present, but it's a case of too many cooks in the kitchen - differing opinions. So the advice that I got from one caregiving expert who I interviewed was when you're dealing with the notion that you are taking on more care responsibility than any of your siblings, to really remember your value and worth. Set boundaries and communicate explicitly by asking for what you need.
So this is quite more difficult than it sounds. I do hear of siblings who ask for help and don't receive it, which is why I say the communication and explicitly asking for what you need can break down some of those barriers if you explain, this is how it's impacting me by me doing it all by myself. Maybe that doesn't even break through the wall. So advice that I was given was to turn to an outside party to mediate. This can take the form of a trusted family friend who can remain impartial. It can be a social worker from the hospital. It can be an elder-care attorney. But somebody who can step in on this conversation because sometimes a sibling may hear you differently by hearing it from somebody else.
SUMMERS: I feel like for so many of us, this is a topic we don't talk about or we don't think about until we're actually in it and - but the truth is that the majority of people in this country are going to need some form of long-term care at some point in their life. So I do want to ask, Jennifer, how can a person who maybe hasn't become a caregiver yet prepare for the financial impact? Are there conversations that they can or should be having now with the people in their lives, or financial steps that they could take to be as prepared as possible, knowing that situations change and circumstances change?
LEVIN: I think financially, it's very difficult to prepare for this because you have no idea what the needs are going to be. But what I would say is that something that's incredibly important to line up in advance is all of the paperwork. And this involves bringing in an elder-care attorney - one that is licensed for your state. Because every state is different, and knowing what are the - what pieces of paperwork is it helpful for us to have in place before anything happens, in the event that something does? You know, who is financially responsible? Is it anybody? Is there a living will in place? Are there medical wishes in place and stated explicitly? Where would you want to live? How would you want to be cared for? All of those conversations before they're loaded are incredibly helpful.
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SUMMERS: We've been speaking with Jennifer Levin. She's the founder of The Caregiver Collective and she's also the author of "Generation Care: The New Culture Of Caregiving." Jennifer, thank you.
LEVIN: Thank you.
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