JOHN SCHUMANN, HOST:
This is NPR's LIFE KIT. I'm John Schumann.
MICHAEL: Hi, Georgie.
UNIDENTIFIED PERSON: Close this?
MICHAEL: Yeah, close it.
SCHUMANN: We got - OK, yeah. I think he wants - here, why don't you let me lock it? Or are you not going to lock it?
MICHAEL: No, I'll lock - I - you - it's hard to lock. Leave it alone.
SCHUMANN: Oh, OK.
Every month or so, I travel to Cleveland, Ohio, to see my dad. His name is Michael, and he's 81 years old.
How's the food here?
MICHAEL: The food's excellent. Strangely enough, it's very good.
SCHUMANN: Recently, we moved my dad to an assisted living facility. He has a ground-floor apartment. There's a wide bathroom which has all these support bars. And he's got call buttons if he needs help.
And one thing I noticed about the place is the hallway from the lobby to your apartment is really long.
MICHAEL: Very long.
SCHUMANN: And I remember when we were looking at this place that you were kind of shocked when we...
SCHUMANN: You were like, whoa, that's a long way.
MICHAEL: The first time I was here - well...
MICHAEL: ...First of all, I couldn't walk nearly as well as I can now, which made it obviously less appealing and more difficult.
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SCHUMANN: This whole situation, it's still pretty new for my dad. A few months ago, he was fully independent, still driving to work at the family business, where he started in 1959. And he even played tennis a couple times a week.
MICHAEL: The last day I played was February 3.
SCHUMANN: Five months ago, my dad had a couple of falls, resulting in a bleed in his brain, something called a subdural hematoma. And part of the problem is because he was on a blood thinner for a blood clot that he'd had previously. Well, luckily, these brain surgeons were able to drain out a lot of the blood. But he was a wreck afterward. He could barely walk. And he's definitely more tired and actually had some memory issues. But he's been coming along. But, you know, I'm worried about him. And he doesn't always see it the same way.
You get tired more easily. You take naps, all this stuff you didn't do before. And you're definitely more wobbly, and you have fallen several times since.
MICHAEL: I'm definitely wobbly. I take - I was tired this morning. I did a lot of work this morning before you got here.
SCHUMANN: Well, that's good. I'm glad that you worked.
It's a new life for both of us and for the entire family. And caring for a parent, it's something many of us will have to face. Today, more than 40 million Americans care for an adult age 65 or older. And with our population getting older every single day, the caregiving load is only going to continue to grow.
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SCHUMANN: This is your NPR LIFE KIT to navigating health care. I'm John Schumann. I'm a doctor, a contributing writer for the NPR Shots blog, and I host Medical Mondays for Public Radio Tulsa.
MARA GORDON, HOST:
And I'm Mara Gordon. I'm the health and media fellow at NPR and also a doctor. This episode, we're talking caregiving. That means helping someone perform the daily activities - you know, things like eating, dressing, bathing or paying the bills.
SCHUMANN: It's emotional. It's exhausting. And it's expensive. And most of us are just totally unprepared to take it on.
GORDON: We've got six strategies to help make this process more manageable for both your loved one and for you. That's after the break.
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GORDON: John, hearing the story with you and your dad, I mean, first of all, it's clear that you have the same sense of humor, just the father-son bickering. But, man, just sounds really hard.
SCHUMANN: It is hard. You know, none of us were prepared, most of all him. I mean, he just wants to go on with life as it was before. But the thing is he's kept his sense of humor intact pretty well, and I'd say that that has really aided in his recovery. You know, caregiving is something that so many people are dealing with, and it's people of all ages. We heard from Libby Brittain, who's 30 now. But in her early 20s, she started noticing some signs of decline in her mother.
LIBBY BRITTAIN: I was in my early 20s, still living in New York. She was in San Francisco. She - you know, whenever she came home to visit, she started to get a lot more disorganized. She, you know, had a hard time kind of keeping on track during a conversation. She asked me the same questions over and over again, a lot of the classic signs of what we now know is early-onset Alzheimer's disease.
GORDON: That sounds just so hard, especially, you know, when she was so young, when she wasn't really expecting it.
SCHUMANN: Yeah, I mean, just starting her career. And the thing is, Libby had just started a demanding job at Facebook in the New York office. But she had to transfer back to California to moonlight as her mom's caretaker. And because Libby was on the younger side, she wasn't even aware that others in her workplace were going through the same thing.
BRITTAIN: I had these - what kind of felt like two lives at times that I was balancing. And I think almost all caregivers have in common that we feel pretty lonely and like we need to go it alone. But the reality is we don't, and there is help
SCHUMANN: Libby became so passionate about the idea that she left her job and founded her own consulting business, where she gives advice to people who are caregiving for their parents. And one of her messages is that, as much as possible, caregiving shouldn't be a solo journey.
GORDON: That is so true. And that brings us to our very first takeaway about caregiving. Be willing to accept help, and don't be afraid to ask for it too.
SCHUMANN: I'm sure there are lots of you out there that feel like you can shoulder the burden alone, but you don't have to. It's only going to make you and your loved one feel more isolated if you try to go it alone. And burning out won't help you support your loved one.
KATY BUTLER: The more you can spread the burden, the more that you can get friends or a government program or hired help to step in and take some of those caregiving or nursing burdens, the more that gives you the opportunity to continue to be a wife, to continue to be a daughter, to continue to be a mother, whatever it is.
GORDON: That's Katy Butler. She's a journalist, and she's the author of "The Art Of Dying Well" And "Knocking On Heaven's Door."
SCHUMANN: And she also runs a great Facebook group called Slow Medicine, where people share stories and ideas about their caregiving experiences. I joined it, and I've found it really inspiring.
BUTLER: I began this journey because my father had a major stroke at the age of 79, and I became very involved with both his caregiving and his medical decision-making. And it was 6 1/2 years until he died and a very slow, painful decline.
GORDON: Did you ever have a moment where you thought to yourself, you know, I didn't think it would be this hard?
BUTLER: Oh, I think on a weekly basis, I thought, I didn't think this could be so hard.
SCHUMANN: Caregiving can go on for years. And Katie says a good way to get people on board is to enlist them early. That's when you're going to get the most people willing and able to help.
BUTLER: Make sure you ask for little bits of help as soon as the crisis hits. Right after a crisis, friends and family rush in and say, is there anything I can do? And you're often so overwhelmed, you can't even think. But strike while the iron is hot and take advantage of it.
SCHUMANN: And that's takeaway No. 2 - make caregiving manageable by thinking in bite-size solutions. Now, many people may feel like they either need to become full-time caregivers or find a nursing home. But there's a lot of in between.
GORDON: So instead, a good place to start is to make a list of all the things you hate doing. Really think of individual tasks here.
SCHUMANN: Getting groceries, picking up medications, helping your loved one get dressed - whatever it is.
GORDON: And then think about who you can get to help with those tasks. This worked really well when Katy's father needed a lot of care. After a full day, both of her parents were just spent.
BUTLER: At night, they would both be exhausted. And my mother would put him through this insane routine of using a Waterpik to floss his teeth. And they would descend into my father's misery. I heard him whimpering, and my mother would be shouting at him. It was just too much for both of them.
GORDON: So Katy thought, OK, Mom is having a really hard time getting Dad ready for bed. So she dreamt up a solution just for bedtime.
BUTLER: We paid someone $25 an hour to do exactly that. It was miraculous.
GORDON: So it sounds like there's sort of a middle ground between a nursing home or around-the-clock care, that sort of a patchwork solution can exist.
BUTLER: Exactly. And by breaking the list down into manageable, bite-size pieces, you can often find one person to do task A and someone different to do task B.
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GORDON: So John, this is a good time to mention the elephant in the room. It's money. People hear caretaking, and they think, OK, I don't have the money for an assisted-living facility. I don't have the money for a full-time aide. And this is why we're talking about getting help for just a little chunk of time while you go for a walk, or you get a cup of coffee. It can do wonders, and it does not need to break the bank.
SCHUMANN: Absolutely, Mara. Caregiving is hugely expensive. But Katy Butler has another idea to tackle this.
BUTLER: My primo, queen of all the programs is called the PACE program. It's the program of all-inclusive care for the elderly. This is a program designed to support family caregivers so that the people they love can continue to live at home. PACE programs will have daycare programs for the elder. They'll have vans to take them to their medical appointments. They'll have nurses who visit the house. They'll have an occupational therapist to see how to make the house safe, and then they'll bring a carpenter in to put in the railings.
SCHUMANN: Side note here - you're going to have to do some research to find out if there's a PACE program in your area because, currently, they're only in 31 states. But another option is home-based primary care through the VA for eligible veterans.
GORDON: Again, just think about the specific parts of caregiving that you really, really want to outsource.
SCHUMANN: Can't get out of work to drive a loved one to appointments? Try a medical van service. Many areas have subsidized senior transportation.
GORDON: If you're having a hard time getting food over to a loved one's home, Katie says try Meals on Wheels instead.
BUTLER: Again, anything you can do to take just one bite out of this problem will help you.
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GORDON: We have talked about some of the logistical parts of caregiving - the scheduling, the tasks. But there's also a lot of - let's call it - diplomacy that's got to happen.
SCHUMANN: Ah, yes, diplomatic skill - very important in dealing with stubborn parents. With my dad, a big point of contention since his head trauma has been driving.
Tell us about driving. Like...
MICHAEL: Well, driving is...
SCHUMANN: ...What it means to you. And...
MICHAEL: It's very important to me because I still work. I, you know, work every day, and I'm able to go to and from with a fair degree of freedom in driving.
SCHUMANN: And that really scares me. You know, Mara, my family and I weren't thrilled with my dad's driving before his accident. And I just don't see it as something he's going to be able to do without really improving his walking and dexterity.
MICHAEL: The first thing the family wants to do is make sure that the keys are taken away from the elder. But that's a battle that we're about ready to start fighting, and I don't know who's going to win that one. I'm doubting that (laughter) it'll be me, but my intent is still to be able to drive to and from work. So stay tuned.
SCHUMANN: (Laughter) Yeah, stay tuned. My dad is being diplomatic here, but this is just something we go back and forth on. And it's emotional because, you know, we're thinking about his safety. He's thinking about his freedom. And, you know, he thinks that if he can't drive, life isn't going to be worth living.
GORDON: John, that just sounds like such a difficult conversation, right? Because, you know, driving is about autonomy. It's about independence. And you're talking about taking that away from your dad.
SCHUMANN: Yeah. And - you know, and I don't think he likes that a whole lot.
GORDON: Well, John, you are in luck because that is takeaway No. 3. Don't tell your loved one what to do. Ask them about what kind of quality of life they want and how you can get them there.
SCHUMANN: Katy Butler says a good way to have these tough conversations is instead of saying, you can't do this, ask them, what kind of quality of life do you want, and how can I help you get there?
BUTLER: What gives somebody pleasure? What keeps them functional?
GORDON: Katy also told us this great story about someone she knows whose older mother wasn't wearing her hearing aids. And it would cause a lot of tension. She always said she couldn't hear anyone talk, and they fought about it all the time.
BUTLER: And she actually was in a doctor's office with the mother. And the mother said, I don't have a hearing problem. The doctor's just talking too softly. And the daughter said, Mom, you are always saying that. You're always saying everybody's talking too softly. And the mother, who had dementia, reached out and slapped her daughter in the face to shut her up.
Then, later, she remembered how much her mother loved music and how her mother was not listening to music anymore. And when she reminded the mother of the love of music, and - why don't we put on your favorite record? Let's put in the hearing aids. Now you're going to really be able to hear this music again. The mother had a completely different reaction. And now she's wearing her hearing aids.
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GORDON: I love that story because it's just really focused on the mom's pleasure and what might make her happy and is sort of gentler than a strict do and don't. It's - you know, instead of saying, you must wear your hearing aids, it's focusing on something that would bring her joy.
SCHUMANN: And this is perhaps another good time to make a list, but this time with things your loved one really loves doing. So whether it's making it to a weekly bridge game or having tea with a friend, you can also find ways to help outsource these kinds of tasks too.
BUTLER: I think if you're going to put yourself in the position of taking away someone's driving, it's important that you think through first how are they going to keep doing the things that they love if they can't drive? And figure out some five-cent solutions and figure them out first before you have to take those keys away.
It might be a high school kid who comes over on Wednesdays when you want to go to your bridge game. It might be a high school kid who comes over on Fridays when you need to do your grocery shopping. But you've got to be thinking about what makes this person's life worth living, and how am I going to make sure that they can continue to do at least some of those things or find a new version of those things?
GORDON: So John, what ended up happening with your dad and the driving?
SCHUMANN: Well, he won the first battle. After talking about a drivers' rehab program, his doctor actually just cleared him to drive because he was making so much progress.
GORDON: So do you think that you're going to have to have this conversation eventually, though?
SCHUMANN: Definitely. (Laughter) He's driving really well - for now.
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SCHUMANN: So another big part of caretaking involves making medical decisions, a lot of them. And often caregivers wind up as substitute decision-makers for their loved ones.
GORDON: But not every treatment a doctor offers is going to do exactly what you think.
BUTLER: I think we're conditioned by the high-technology nature of our modern medicine to expect this because, earlier in life, we do get these whiz-bang fixes.
SCHUMANN: You know, as our loved ones get more frail, we just need to acknowledge that they're entering a different stage of care.
GORDON: Right. So if a doctor suggests that your 95-year-old grandmother needs open-heart surgery, it'll probably make her life worse, not better. But it can be really hard to know. And when you're confronted with options, a lot of them are in medical jargon. There's a lot of technology. You don't know how much they're going to help.
SCHUMANN: So how do you make those decisions when you're at the hospital and under pressure?
GORDON: That's takeaway No. 4 - a great way to stand up for your loved one's health is to focus on what makes their life enjoyable. Just ask the doctor straight up, will this treatment improve my loved one's quality of life?
SCHUMANN: Yeah, because so much of our health care system is designed to prolong life. But when we focus only on that, we sometimes fail to consider a patient's wishes. You know, when I was in training, I would just remember many patients who died tethered to ventilators in the intensive care unit rather than, you know, what I would want, which is dying peacefully at home, surrounded by family. Medicine, for all its wonderful advancements, can do patients and families a disservice.
GORDON: If your elderly grandma doesn't get open-heart surgery, her life may be shorter. But she'll be able to spend her time eating and talking and maybe taking a walk with her grandkids.
BUTLER: These small victories become so much more important than thinking you're going to go to the doctor, and they're going to give you a magic pill or a magic surgery. And this whole horrible situation is going to completely reverse itself, and you'll be back to, quote, "normal" - because you're in a new normal now.
SCHUMANN: Katy says, before you actually get into the doctor's office, think through a few other questions about the medical decision you or your loved one might be facing.
BUTLER: Before you go in, make a list. What are my fears? What are my concerns? And then you might hear the doctor out. But you want to come back to this is what I'm most afraid of, or this is what's troubling me the most.
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GORDON: All of this talk about quality of life and different treatments, it's kind of tiptoeing around something much bigger. It's about how your loved one is going to die, whether it's in a few weeks or several years. And talking about this difficult topic, it takes some bravery.
SCHUMANN: It really does. These are challenging conversations to start. And that's our fifth takeaway, takeaway No. 5 - rather than leaving your loved one out of the discussion, collaborate on these big questions.
GORDON: To get some advice about this really challenging topic, we turned to Dr. Kimberly Curseen. She's a geriatric doctor and palliative care expert at Emory University in Atlanta. Kimberly says you should have these discussions early.
KIMBERLY CURSEEN: The best thing to do is to work with your loved one and not wait until they're not able to make decisions for themselves because that's usually what we do. So discussing this earlier, bringing this up, is incredibly important. And as a caregiver, you don't want to hurt your loved one's feelings or give them the idea that you're giving up on them.
SCHUMANN: It's all about coming up with a plan early so both you and your loved one don't have to make decisions either of you are uncomfortable with.
GORDON: When you agree on the plan, it creates a roadmap that can help you stick to your big-picture values in all of the medical detail.
CURSEEN: So you might phrase it or explain it to them like this - like, look, we need to know what to do, just like we would need to know what to do if the house burned down or if the car crashed.
GORDON: Kim says that when you're talking about end-of-life care, you need to include your loved one's voice, not discount it. And that might mean asking really challenging questions, like how do you want to die?
SCHUMANN: Exactly. And it really de-escalates the intensity of that kind of conversation when your vulnerable loved one can feel in control and like they have a say. Signal that clearly. Say to them, I want your voice to be heard. I want you to have control.
CURSEEN: The only way we're going to do that is if you tell me what it is that you want. And then you got to write it down. So instead of framing it as, you know, hey, you have to tell me what your wishes are, you - what you're really asking them is for guidance, and guidance in - even though it's an emotional thing, almost in a dispassionate way. Like, this is just guidance. I just need to know. And if you want me to make all the decisions, then I need to know that too. And it's a tough conversation, but also freeing.
GORDON: Yeah. So you need to help your loved one create an advance directive if they haven't. And that's a documentation of a patient's preferences about the end of their life. It gets at questions like what they'd want doctors to do if their heart stopped beating, if they couldn't breathe on their own, whether or not they'd want to be attached to a ventilator, have a breathing tube put down their throat. And these can be really scary questions, and that's probably why only about a third of Americans have one of these.
SCHUMANN: The whole idea's intimidating to people because it sounds legal. But keep in mind, you don't need a lawyer. And it's more about the discussion than any piece of paper.
GORDON: You can easily find templates to help guide that talk online. One that I like and I recommend to my patients is called Five Wishes. And that can help the discussion go much easier.
SCHUMANN: The important thing is, talk with your loved one. Have the meaningful conversation about their wishes.
GORDON: Kimberly Curseen had a great example of this. She had a patient whose oldest son was her caregiver. And together, they made a really clear plan for the patient's wishes about the end of her life, and that included a plan to finance her care. And what I loved about this example is that, you know, they weren't afraid to confront the reality of what was coming. And by talking about it really early and planning for it really carefully, they were able to actually enjoy their time together rather than stressing about everything.
CURSEEN: They had some very frank conversations about what was important. And Mom at that time, you know, did allow him access to finances and made him very aware of what was available and what was not available. And he actually put away or - money and actually planned for the time of her caregiving. And I thought that was really novel. And you can - you know, you can see on the internet that some of these plans or these saving plans, like they have for children going to college, you know, some financial planners are offering services for, hey, let's plan for the future for the caregiver of a loved one.
SCHUMANN: Advance planning sounds overwhelming, but it's actually freeing. It allows your loved one to participate in their care, and it takes the decision-making onus off of you because you're honoring what your loved one wants. And that lets you enjoy your time together while avoiding panic mode.
GORDON: Katy Butler also taught us about some of these important issues. She suggests that getting the legal stuff out of the way lets you focus on the idea of what she calls relationship maintenance.
BUTLER: Hospice nurses often talk about five emotional tasks of the end of life. And they are thank you, I love you, please forgive me, I forgive you and goodbye. And I think the wonderful thing here is that you do not have to wait for death to be imminent to start cleaning up all your relationships this way.
A parent can accept thanks for you. A parent can accept your thanks way before you need to have any conversation about, hey, look, Dad, I want you to know you're declining, and you're going to die someday. Well, you don't always have to go into all of that rigamarole to clean up a relationship without even addressing the question of death or decline.
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GORDON: And this is our final takeaway - please take care of yourself too. Caregiver burnout is a serious issue. And if you're not being kind to yourself, you're not going to be the best and most patient caregiver that you can be.
SCHUMANN: If you have hobbies, it's crucial to maintain them because it's easy to let things go when you're caregiving. Because when it begins, it can feel like crisis mode, but it's likely to just become the new reality.
BUTLER: You need to maintain your own identity. You are more than a caregiver. You have played many roles in your life, from your work life to your life as a sister or a friend, an artist, a lover of museums, whatever it is. If you can give yourself four hours a week to take a break from caregiving - it could be that you get a friend to come over and take those four hours of babysitting - if you can afford someone to come in for four hours a week so that you get a real break, and you go out to lunch with your friends, or you go to a museum, or you take a walk in nature, that is so important. It will help your own health, and it'll also help you be better as a caregiver when you're alone with the person that you love. It'll help you maintain a functioning family for longer.
SCHUMANN: That's great advice. And, you know, Mara, it's more than just about getting breaks. Caregivers should try to find online communities of caregivers, like Katy Butler's Slow Medicine list, or support groups from organizations like the Alzheimer's Association, where you can share your experiences with other people going through similar challenges.
GORDON: Part of what is so hard about caregiving is that your relationship is changing with the person that you're caring for, especially if it's your parent. It's kind of like you and your dad with taking away the car keys, John. The roles get reversed. So Katy says that part of taking care of yourself also means continuing to honor the good parts of your relationship before your loved one started to decline. You guys can look at photo albums together, ask them to tell stories - things like that.
BUTLER: Appreciate small moments with the person that you're helping. Enjoy yourself.
SCHUMANN: And also, when you're caregiving, try to make sure to find the little bits of joy. I talked with one listener, Debbie Mefferd, who lives in Northern California. Even when her father's dementia really set in, Debbie says her father held on to a favorite daily ritual.
DEBBIE MEFFERD: As long as I can remember, he's had a cocktail of sweet and dry vermouth with a twist of lemon on the rocks for, you know, decades.
SCHUMANN: You know, and that kind of ritual led to a nice moment between them.
MEFFERD: In the afternoon, he'd sort of gesture of me over. I got a question for you. Is the drinking light lit? And I'd say, oh, it could be lit, you know. So we would sit on the - they had a beautiful porch that he enjoyed sitting on, and we would have our drinks and sit out there and have, you know, what's - resembled a conversation and a little bit of normal life. And I thought it was a very good thing.
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SCHUMANN: That's great. I love that. So cheers to all you caregivers out there.
GORDON: Yes, cheers to all of you. Remember to appreciate those small moments of joy.
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GORDON: OK, John, we covered a lot with this episode.
SCHUMANN: We certainly did. So let's recap the takeaways.
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SCHUMANN: Takeaway No. 1...
BUTLER: If you're a caregiver, accept all the help you can get. The more you can accept help, and from multiple different sources, the better you're going to do.
GORDON: Takeaway No. 2 - break down tasks into bite-size solutions.
BUTLER: Start with a list of the things you truly hate to do.
GORDON: And then find lots of targeted solutions to tackle those specific problems.
SCHUMANN: Takeaway No. 3 - practice relationship diplomacy. Don't just fight over what a loved one can't do. Find out what your loved one needs to have a good quality of life.
BUTLER: You've got to be thinking about what makes this person's life worth living, and how am I going to make sure that they can continue to do at least some of those things or find a new version of those things?
GORDON: Takeaway No. 4 - when you're faced with making a medical decision, ask the doctor, will this treatment improve my loved one's quality of life?
SCHUMANN: Takeaway No. 5 - it's not fun, but start getting all the end-of-life paperwork in order.
BUTLER: Get your legal ducks in a row. Make sure your papers are signed, that you are the authorized representative if you need to be or you have access to the bank account.
GORDON: And lastly...
BUTLER: Remember that you are more than just a caregiver. You're also that person's son or daughter. If there are ways that they can still mother or father you, even in their decline, even with their disabilities, soak them up.
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SCHUMANN: For more NPR LIFE KIT, check out our other episodes. We've got guides on everything from navigating screen time with kids to how to manage your student loan debt.
GORDON: If you like what you hear, please make sure to check out our other LIFE KIT guides at npr.org/lifekit. And while you're there, subscribe to our newsletter. Also, be sure to subscribe to LIFE KIT: All Guides so you never miss an episode. We've got guides coming out every month.
SCHUMANN: And here, as always, is a completely random tip, this time from NPR intern Maya Eaglin.
MAYA EAGLIN, BYLINE: Consider using a T-shirt to dry your curly hair. A regular towel is actually too harsh for curly hair follicles and can even cause frizziness and dryness. T-shirts or fancy microfiber towels will protect your hair from damage. Just flip your head over and gather them in the T-shirt and scrunch upwards in small sections to dry. This will transform the way your curls look.
GORDON: If you've got a good tip or you want to suggest a topic, email us at email@example.com.
SCHUMANN: I'm John Schumann.
GORDON: And I'm Mara Gordon. Thanks for listening.
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