Speaker: This is The Takeaway with MHP from WNYC and PRX in collaboration with GBH News in Boston.
Melissa Harris-Perry: Y'all, I am expecting 2023 to be a big year. In just three weeks my eldest child will have her 21st birthday. This summer a beloved niece is getting married, and later this year I'll celebrate The Big 5-0.
Hey, Jay, is there a sound effect for being over the hill? JK, JK. Now I'm feeling prepared for all these milestones because raising a child to adulthood, celebrating family weddings, aging as gracefully as possible. All our parts of life that are well represented in popular culture examined in media and shared openly among friends and family, but more hidden less discussed and far more isolating is the role of caregiver.
What is it like when the super competent parent you've always relied on is now relying on you, or when the beloved spouse you'd planned to grow old with gets a diagnosis that they will not grow old at all, or when the child well on their way to independence is suddenly injured and returns to dependence? For more than 43 million people in the US, these are just some of the moments that transform them into sudden caregivers, and their labor is often invisible, poorly understood, and entirely unpaid. With no national paid family or medical leave, caregivers typically shoulder the extraordinary financial costs as well.
Most caregivers are women in their '40s and '50s. They often find it necessary to leave paid employment as they care for their loved ones, and that leaves them at risk for housing insecurity and poverty. Who cares for the caregivers, and how can we prepare for the moment when we too may become sudden caregivers? I'm joined now by Karen Warner Schueler, author of TheSudden Caregiver. Karen, welcome to the Takeaway.
Karen Warner Schueler: Thank you so much, Melissa. I'm honored to be here.
Melissa: Karen, tell me a bit about how you became a sudden caregiver.
Karen: I became a sudden caregiver overnight when my late husband, Joel Kurtzman was diagnosed with Stage IV cancer and we did not see it coming. We had just been on a wonderful vacation together. Our kids were grown and launched and we were just looking forward to enjoying our lives. I got a call in the middle of the night and he had been diagnosed with Stage IV lung cancer.
Melissa Harris-Perry: Can you tell me a little bit more about your late husband, what was he like?
Karen: We used to say he was the big planet and I was the little planet. He was always thinking and creating new things. He would have an idea and just manifest it into the world.
Melissa: There is something about someone who is over-competent and then suddenly in need of care. Talk to me about how your relationship with your husband changed.
Karen: I was fortunate in that he looked at me one day and said, "I trust you completely to get me through this." What changed was actually to the positive because it just drew us closer to each other. We had this unbelievable goal of living and getting through cancer and getting to the other side of it. He just knighted me with all the caregiving responsibility and decision-making, and in the long run that made life so much easier for both of us.
Melissa: I hear in you a relentless positivity capacity, and yet I bet that it is also moments of unspeakable exhaustion and sadness.
Karen: It is both a source of depletion, and exhaustion, and relentless worry. I spend a lot of time with caregivers now and I think that one of the things that causes distress is, I don't know, I hope I'm doing the right thing. It's also a source of great positive achievement. emotion. meaning. and purpose. Many caregivers will say, "I was called upon to care for my parents in this way, and I believe that's what I was put on earth to be able to do." I've heard that so many times and I personally have felt that way.
Melissa: Did you find a way to rest?
Karen: I did finally find a way to grab the time that I needed just to be myself. I think when we talk about rest for caregivers, caregivers would define that true rest as a complete break from the caregiving role. What I found was I didn't have to save up my breaks and take one whole day or a week away which was never possible. What I found was 10 minutes a day of just being with myself with my journal. I walked the dog in the worst winters in Massachusetts-- we lived outside Boston. I found that to be truly peaceful and that true break before I came back into the house or resumed that caregiving role.
Melissa: For people who are not in this moment serving as caregivers or perhaps were caregivers to school-aged children who go away for eight hours during the day and that sort of thing. When you get that call when you get that text from a caregiver in your life who's asking for help, what are the ways to respond?
Karen Warner Schueler: I get asked a lot, "What can I do right away?" One is get organized. I was in a situation-- I'll admit, I'll confess. I am not the most organized person on the planet. That's not how my brain works. However, I do know how to borrow those traits from my friends and the people I'm close to. Create a source, one place where everything needs to go, and it just relieves that sense of fear that you might drop a ball somewhere.
The second thing is to make a list of things that you don't do well, can't do well, don't want to do well. and then look at the people in your world who you may have never asked for anything but people really do want to help when they love you and see you in this situation. Offer them something specific. I would say-- I call this in my book creating your care leading squad. These have to be people who are so on your side, in your corner. These are the people you would call at midnight if you're broken down on the highway.
Melissa: All right, we're going to take a brief pause here. When we come back we'll continue our conversation about caregiving, and I'll ask Karen about the role of public policy.
Karen: This is the bully grail of caregiving in my opinion, that there are public policies that could make it easier.
Melissa: It's the Takeaway.
You're back with the Takeaway and we're continuing our conversation with Karen Warner Schueler, author of The Sudden Caregiver. Sometimes caregiving is time to limited. Again sometimes if we're talking about caring for a very young child and that child will grow up, sometimes it goes on for a very long time, and sometimes we survive and the person we're caring for does not. What do we do with the feelings of guilt?
Karen: The guilt is something you carry with you just like the love for that person after you lose them. I would say social support and emotional support at the time that you lose someone will help you through that. Give yourself grace, you did a hard thing and not all of it is perfect because we're human. I look back on my caregiving and wish, why did I have to have an argument about what we were having for dinner that night? Because you're still in relationships with people that you've been in relationship with presumably a long time.
I don't know that there's any way to get around that. One thing I say to myself is, I think Joel would have forgiven any of those things. I think he does forgive them, and so there's no reason for me to continue to carry them.
Melissa: A lot of what we've talked about so far is either what the caregiver themselves can do to carve out time, to find a moment, to be kind to themselves, or comes immediate family, friends, community. Are there public policies that would make it easier? to be a caregiver.
Karen: I think one of the burdens that we know that caregivers carry are financial burdens. I had to work less. My husband wasn't working at all. We had savings that we drew down in order to fund some of the things that are extremely expensive. Getting someone to come to the house for a few hours a day is paid out of pocket, it's not always covered by insurance. Public funding of caregiving, providing resources that are geared toward the individual caregiving situation would be amazing, but I also think we're not going to get the answer from public policy.
One thing I would like to see and I've started seeing this happen is private enterprise coming stepping up with ways to help caregivers. One in four people are caregivers, so they could be sitting right next to you at work and you would never know. Because caregivers work in extra 24 to 31 hours a week on top of their day jobs, and they just absorb it the way we absorb childcare when we took care of our children. It's not necessarily something you go to your employer and describe and ask about. However, there could be employment policies put in place that are benefits to people who need the caregiving.
Melissa: I so appreciate you sharing your story, your insights, and your analysis with us. Karen Warner Schueler, author of <i data-stringify-type="italic">The Sudden Caregiver. Thank you for your time.
Karen: Thank you so much, Melissa. Happy New year.
New York Public Radio transcripts are created on a rush deadline, often by contractors. This text may not be in its final form and may be updated or revised in the future. Accuracy and availability may vary. The authoritative record of New York Public Radio’s programming is the audio record.