In short
Caregiving—especially full-time caregivers for children with disabilities and for aging/sick relatives—its emotional/physical toll, limited control, burnout/compassion fatigue, and practical steps like planning conversations, directives, respite care, and dividing roles.
Guests
Amy and Margaret Ables (hosts of What Fresh Hell? Laughing in the face of motherhood). They discuss caregiving using their own experiences (e.g., Margaret’s mother’s sudden pneumonia/hospitalization; Amy’s family logistics during illness) and cite surveys and caregiver research.
Key claims
Caregiving is extremely hard because it’s “always-on,” often with limited control over outcomes. U.S. systems provide little support, so women/family members absorb the work. Caregiver stress can become burnout; compassion fatigue can occur suddenly after traumatic events. Common warning signs include sleep/weight changes, irritability, sadness, headaches, and substance misuse.
Notable examples
Hospice nurse training (“I’m a comic”); dementia role reversal and mood/personality changes; “daughter from California syndrome” during hospital decisions; using “Ken’s and can’ts” lists and pre-planning end-of-life care.
Written by AI. May contain mistakes. Listen to the episode to check what was said.
Chapters
Tap a time to open that second in VOCelebrating National Caregiving Month
0:00 to 0:22
Discussion about National Caregiving Month and the upcoming topic.
“And for a limited time, college students get the best of both worlds.”
Celebrating National Caregiving Month
0:48 to 1:26
Discussion about National Caregiving Month and the upcoming topic.
“A podcast that solves today's parenting dilemmas.”
Mailbag Insights
1:27 to 2:50
Engaging listener feedback about bar chargers and clever solutions.
“So I was talking on a recent episode about the battle for bar chargers in my house and how I can never find a bar charger.”
Understanding Caregiving
2:51 to 7:16
Exploring the definition of caregiving and its challenges.
“A caregiver is anyone who helps another person in need.”
The Burden of Caregiving
7:17 to 12:09
Discussing the emotional and logistical challenges faced by caregivers.
“The average time devoted to giving personal care to another person has tripled since 2020.”
The Burden of Caregiving
14:26 to 15:37
Discussing the emotional and logistical challenges faced by caregivers.
“Being a mom means putting other people's feelings and needs above your own pretty much 100 % of the time.”
Transition to Caregiving Challenges
15:46 to 17:08
The hosts discuss the challenges faced by caregivers in managing family dynamics and caregiving responsibilities.
“Amy, you know from talking to me on this podcast that my kids used to have daily fights about whose turn it was to scoop the cat litter.”
Statistics on Caregiving
17:08 to 20:49
Insights into the statistics and realities of caregivers, highlighting the emotional and financial burdens.
“So I thought this statistic was interesting just talking about, I mean, I'm not even going to go through all the statistics about how caregivers feel.”
Personal Experiences with Caregiving
20:49 to 23:26
The hosts share personal stories about caregiving, including emotional challenges and complex family relationships.
“If you're picking somebody up, if you're moving people from a bed to a wheelchair, I mean, this is work that is primarily invisible to us as a society.”
Societal Impact on Caregivers
23:26 to 24:23
Discussion on the societal neglect of caregivers and the need for better support systems.
“And you're like, oh, we're going to be here for a while yet.”
Show all 18 chapters
Signs of Caregiver Stress
24:23 to 28:07
Identifying signs of caregiver stress and discussing the importance of self-care.
“You're doing it for the calling, not for the 401k.”
Understanding Compassion Fatigue in Caregiving
28:07 to 30:00
Learn about compassion fatigue, its symptoms, and the emotional toll of caregiving for elderly loved ones.
“There was a dangerous thing brought on by like, it's always hard being a health care worker, but this is like a backbreaking event and it causes compassion fatigue.”
Navigating Caregiving Responsibilities and Conversations
31:06 to 39:22
Discover strategies for managing caregiving responsibilities and having difficult conversations with family about aging.
“From the What Fresh Hell podcast, at home.”
Seeking Support and Resources for Caregivers
39:25 to 42:02
Explore the importance of finding support groups and respite care resources for caregivers.
“If you could bring over dinner on Tuesday nights, that's the night that, you know, Rebecca has soccer and I really want to get there.”
Navigating Caregiver Stress and Family Dynamics
42:02 to 43:39
Learn how to manage caregiver stress and complicated family relationships during illness.
“Like really in these seasons where life goes belly up, you have to really prepare to take care of yourself.”
The Importance of Early Conversations
43:40 to 45:15
Understand the necessity of having crucial discussions about caregiving before emergencies arise.
“And I was like, yeah, that's smart advice because it gets prickly and everybody, you know, I remember my sisters and I, when my mom died or was dying, it's like, but my mom just died.”
Support and Sharing Resources
45:16 to 45:49
Discover ways to support caregivers and share helpful resources with others.
“It is harder than you should have to be dealing with.”
Support and Sharing Resources
46:02 to 46:26
Discover ways to support caregivers and share helpful resources with others.
“TheSameMonday.com helping people worldwide getting work done faster and better.”
Transcript
Automatic transcript. May contain errors.0:00Study and play. Come together on a Windows 11 PC. And for a limited time, college students get the best of both worlds. Get the Unreal College Deal. Everything you need to study and play with select Windows 11 PCs. Eligible students get a year of Microsoft 365 Premium and a year of Xbox Game Pass Ultimate with a custom color Xbox wireless controller. Learn more at windows.com slash student offer. While supplies last, ends June 30th. Terms at aka.ms slash college pc.
0:31Amy Wilson:She was like, miss me with the hospice clown. What fresh hell. Laughing in the face of motherhood. You have to have a PhD in something you didn't know anything about a week ago. With Margaret Ables. And Amy Wilson. I hope you're taking care of yourself. I'm like, yeah, when would I be doing that? A podcast that solves today's parenting dilemmas. So you don't have to. You're not necessarily getting, oh, thank you. You're the most wonderful person in the world for bringing me dinner.
1:01Hey, everybody. Welcome to What Fresh Hell? Laughing in the face of motherhood. This is Amy.
1:05Amy Wilson:And this is Margaret. And did you know that November is National Caregiving Month? Oh, a month just for us. A month just for us. We're going to be talking about caregiving, but first we're going to give care to our mailbag. Okay. All right. I'll allow that segue. Yeah, it was not my best work. Not my best work, guys. I'm sorry. Mailbag. So I was talking on a recent episode about the battle for bar chargers in my house and how I can never find a bar charger. And I said, what's a bar charger? And it's, you know, like a battery pack for your phone. It's a battery pack for your phone. Exactly. I was lamenting my constant lack of bar chargers and then the use of the phrase in my house.
1:50Amy Wilson:Is there a bar charger anywhere? To which I scream like a maniac. I don't know. Did you plug in a bar charger somewhere? Amy in our Facebook group says, Margaret, for Christmas, everyone in my house is getting a bar charger of a different color to fix this battle. You are in charge of your color. Already have them hiding in the closet. I love this. I have given my kids these for Christmas. Of course, the problem is your kid won't care that your color is blue and now they have your blue bar charger. It might slow them down. I don't want to yuck Amy's yum, but I mean, we've definitely done the Christmas of the here's your bar charger.
2:23Amy Wilson:With your name on it. went out of the way with the label maker to label it. They're all different colors. Has it solved our problem? It has not. But God bless Amy for still trying. It might help a little. Yeah, I doubt it, but it might. That's what we're here for. I mean, God bless Amy. Go with God. Vaya con Dios. This podcast is here for stuff that might help a little. I mean, that's really like the most we can offer. That's the most we can offer. Thanks for listening. Amy, let's talk about caregiving. A caregiver is anyone who helps another person in need. That person in need might be an ill spouse or partner, a child with a disability, or an aging friend or relative.
3:02Amy Wilson:It also can be caring for a child without a disability. You are a caregiver if you are caring for a child, I would say, under the age of 18. It's all day, every day. It's a good reason to get up in the morning, but it's definitely a reason for getting up in the morning. You have kids to take care of. So I think for our conversation today, we are going to take the fact that we are speaking to, I don't know, is the term regular caregivers the wrong word? Like we are already talking to caregivers of children. Like full-time caregivers. And it doesn't matter if you have another full-time job or another part-time job, you're a full-time caregiver.
3:37Amy Wilson:You're a full-time caregiver. But in addition to that, many of us are doing caregiver jobs for other people in our lives, along with our full-time jobs of taking care of children. Right. And so we've talked about this in a survey of 3 ,000 U.S. adults with children under 14. So there we're checking the box of like already doing it, right? Care.com found that just taking care of kids under 14, 90 % of parents are losing sleep. Check. Would like to talk to that other 10 % and figure out what the heck they're doing. 80 % overall and 90 % of moms are spending some time crying. 75 % feel a sense of dread and 71 % are experiencing health issues.
4:2690 % of moms are spending some time crying due to their caregiving or didn't just say like, do you cry ever? And 90 % said yes. I mean, that's a depressing statistic, but not a surprising one, I guess.
4:38Amy Wilson:I think if we can leave this conversation with anything, even though we're just beginning the conversation, I think the absolute acknowledgement that caregiving is extremely hard. It's not pat on your head like you're doing the hardest job in the world, mom, but that caregiving, you have a tremendous amount of stress and you have a small amount of control. And when you look at studies about stressful work, that is always defined as the most stressful job. They'll say like being a brain surgeon, for example, which is like, you don't have to be a brain surgeon, that it is a less stressful job than being a waitress, let's say.
5:17Amy Wilson:The stakes are not as high. Like, okay, you didn't get your burger in time. Okay, you died from your brain surgery. But the brain surgeon has total control over their environment and is responsible, not solely because there's nurses and stuff around, but a job where your efforts are in your own hands. The outcome is pretty much in your unhandled brain surgeon is too high level. There's a whole other part of that too, which is that the brain surgeon is going to do that brain surgery. And then if it goes well, goodbye, like you're done. You don't have to operate in that person again tomorrow. You might have to do another different operation next week.
5:52But caregiving is figuring out what's for dinner every night. And as you said, they're not, are they equally difficult tasks? No, but it is the alwaysness and the, as soon as the laundry's folded, you have to fold more laundry of it. That's very different from being a brain surgeon.
6:07Amy Wilson:Yes. And the outcome is very much in your control in a way that it is not with caregiving. Whether or not the person you are caring for gets better is not in your control. Whether or not your kid goes out and does something stupid, your overall control over the situation as a caregiver is fairly limited. Sometimes you have a lot of control, like bedtime in your house. I remember you telling me when your kids were little that you were pretty like, okay, bedtime, everybody's in their beds by 7.30. I am done till tomorrow. And having a sense of control over that. You do have control. There are times when you can feel out of control.
6:39All of us have situationally felt out of control. I don't think it's like every moment of caregiving is like a house on fire, but sometimes it feels that way. And even at good times, it's like, okay, and now I'm just gonna have to drag them to bed again tomorrow. Now we do it all over again. Exactly.
6:52Amy Wilson:And then on top of our day-to-day caregiving, we are part of the sandwich generation, which is you're caring for children under 18 and a parent, an elderly parent or relative. So the number of people in the adult population providing care and working outside of the household has increased from one in seven in 2020 to one in five today. The average time devoted to giving personal care to another person has tripled since 2020. I'm assuming that going from one to seven to one in five since 2020 has to do with the aging population. That's right. People are living longer, right? I mean, you're seeing this problem in U.S.
7:36Amy Wilson:prisons. You're seeing this problem in U.S. communities that people are living much longer, but people need much more care over the age of, let's say, 65. It doesn't mean everybody. I know lots of people who are 90 who don't need full-time care, but our parents are living longer and we're having kids later. And so the combination of those things mean that we are finding ourselves in these kind of super caretaker roles. Who are we caring for? So this is above and beyond caring for children in the house. 41 % of people are caring for a parent. 41 % of people in this category. Correct. 29 % are caring for a special needs child.
8:19Amy Wilson:20 % are caring for someone else. And 18 % are caring for spouse or partner. This is an interesting, I mean, the 29 % special needs child sounds really high to me, but maybe it's because it's just who are self-defining themselves as caregivers on top of their job. Like I, would I say I was a caregiver when I wasn't in a situation of taking care of a parent? I guess I probably wouldn't even though I'm taking care of my kids. So this is people who are already, no, no, no, I am like, I'm doing it. Hanging out the shingle. I am a caregiver. Okay. And then nearly a quarter of caregivers of elderly or sick adults also have young children under the age of 18.
8:53Amy Wilson:So that's the sandwich where you are taking care of both the youngs and the olds in your life. We have done that. Each of us have had that moment in our lives. Yeah. And I think that it's something if you haven't dealt with it, first of all, it can come up very fast. I think that's something that both you and I experienced where your days are sort of set. I know when my mom got ill. I had three pretty young kids under the age of 10. I think all three of my kids were. My mom had an underlying health issue that, you know, was being managed fairly well. And then, like on a Tuesday, she got pneumonia and then was in the hospital for six days and basically lost all of her strength.
9:37Amy Wilson:She was basically very functional on a Monday, Tuesday got pneumonia and was basically never well again until she died, which was maybe two or three months later. And so I went from a situation of not doing any caretaking to the house is on fire 24 hours a day. And can my husband come back from his trip because I'm going to need to spend the night over here and then try and put together some forms of care, which is you kind of think like, well, I'll call someone and they'll send someone. It's very complicated. You know, people don't show up sometimes. It's no guarantee. And suddenly you as a family person are now in this extreme medical support role for which you have no training and no ability.
10:24Amy Wilson:I remember at some point the hospice nurse who had dropped off syringes full of X, Y and Z. I was on the phone and they said, well, do you have any medical background at all? I said, ma 'am, I'm a comic. Like, I couldn't be farther from a person. And I think the upside downness that it throws your life into when you find yourself in a caregiver role is just more profound than you can state. Well said. And it is, as you said, the hardest part, I think. I mean, the logistics are very hard. My dad was in a hospital out of town that was close to neither where my parents live nor where I live for reasons, you know, for health care reasons.
11:06And I dropped everything and found a hotel room for my mom and I to be in for a week. Now, my kids were old enough that they could make themselves dinner for a little while. But the part that was so hard for me on top of the logistics was this whole like, I'm in charge of what? Like you're all of a sudden you have to have a Ph.D. in something you didn't know anything about a week ago. and manage your feelings about that in front of the person you're caring for.
11:28Amy Wilson:Absolutely. And I think we're going to talk in the next section about what that feeling means, both for like day-to-day caregiver burnout for moms, but also the emotions and stuff that come out that are supposed to be all positive. And this is a tip of the spear thing that we talk about, which is that there is very little provided care by our systems in the United States of America. And so the care comes down primarily to women who have no medical training. And the idea is that it is your honor and gift to caretake for your parents who have taken care of you. And ha ha, we have babies, so we'll have someone to take care of us when we're older.
12:13Amy Wilson:and you can feel very much that sense of obligation and what's like positive obligation. Like you want to take care of people, but and you're talking about also hotel rooms, home health care aids. These things are extremely expensive and they do tend to come a little bit out of nowhere. So you can really find yourself in a situation where suddenly you don't have the time, you don't have the money, but you're in a situation where you cannot drop the ball because either your child needs you or you have an adult or a spouse who needs you. And there is no lane in which you're ever going to say, I'm out.
12:56Amy Wilson:I'm going to walk away from this situation. But there is not a ton of resources saying, here's how to help you through this situation. There are not. Not a fan, guys. We'll be back and we'll talk more about what it means to be a caregiver. After a long day in the summer sun, my skin needs a hydration reset. That's why I love Osea's Hyaluronic Body Serum. It's super lightweight to put on, no waiting 10 minutes before you can even get dressed. And even though I'm just starting to use it, the hyaluronic acid is really helping my skin retain more moisture. Amy, agree. Osea's Hyaluronic Body Serum delivers multi-level non-stop hydration to support the skin's moisture barrier.
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14:21That's code fresh at oseamalibu.com. Being a mom means putting other people's feelings and needs above your own pretty much 100 % of the time. But our own needs and feelings matter. They need attention. That's why there's therapy, which is something anyone can benefit from no matter what their current situation is. And that is why there's Rula.
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15:45Amy Wilson:WFH. Amy, you know from talking to me on this podcast that my kids used to have daily fights about whose turn it was to scoop the cat litter. But now we have a Whisker Litter Robot, which does the scooping for you. And my house is stunningly peaceful, at least in regards to the cat box, Amy. It's amazing. The Whisker Litter Robot automatically cycles after every use and notifies you when the unit needs attention so you're not handling waste or scooping every day. Plus the Whisker app gives you real-time notifications that help track your cat's behavior and routines. Do we watch our cat videos 900 times a night from the Whisker app?
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17:08Amy Wilson:So I thought this statistic was interesting just talking about, I mean, I'm not even going to go through all the statistics about how caregivers feel. They don't feel amazing, guys. They're burnt out. they're struggling. This is from caregiver.com, Women and Caregiving Facts and Figures. This is talking about people who are caregiving for someone outside of their home other than their own children. An estimated 66 % of caregivers are female. I don't think this is a shock to anyone. The average caregiver is a 49-year-old woman who works outside the home and provides 20 hours per week of unpaid care to her mother.
17:46Amy Wilson:So does that make sense? Of all the people doing this caregiving, the average is 49, some younger, some older, who works outside the home. And on top of everything else she's doing is caregiving for a parent 20 hours a week. The parent is her mother because women live longer. Let's circle that too, that I think this whole, the idea that we will do it, the daughters, you know, the sisters, the aunts, that we will take on the work because we're women, we're better at it, we really want to do it anyway, we're so good at caregiving, that that sort of overall wash of you want to more, you have to more, has not changed at all with people working outside the home full-time.
18:28Like, it used to be like your husband works, he's too busy to take care of his mom. Right, so you've got nothing going on, you take care of grandma. Which was unfair then and wrong then. And now it's like, OK, and now you have to try to take leave from your job to do this. It gets more complicated.
18:43Amy Wilson:Yeah. And I come from a family with very decent resources and the expense of medical care is insane. I mean, I just can't overstate how expensive it gets, how quickly to provide 24 hour care. You're paying probably at minimum$40 an hour. Like it adds up. You're your feet on the ground in the morning every day. And it's a lot, a lot, a lot of money. And you're dealing generally with someone you love and you want that person to be getting the best care possible. But the resources are very, very taxing. Here's another interesting statistic. Most older people with long-term care needs, that's 65 % of people rely exclusively on family and friends to provide assistance.
19:32Amy Wilson:And this is another place where you see, like, I know people who have fallen on really hard financial times, right? Let's say a spouse dies, they didn't have life insurance. Holy cow, they're like living in the suburbs in this house and kind of living paycheck, paycheck. Spouse dies, they're now suddenly destitute. People do what? They do a GoFundMe. They try to come together. They fundraise for somebody. But taking on a three or four or five-person family's total expense is too overwhelming for almost anybody unless you're Jeff Bezos, right? Like you think to yourself like, well, we'll just hire the people when we need them, but it's much more expensive than you see coming.
20:11And so most people just get away without it. So the daughter-in-law or the sister or the aunt, like I was saying before, become not just the patch, but the care, you know, bridging the care. You are the care.
20:22Amy Wilson:You're not bridging the care. And this work probably goes without saying is very difficult. It's extremely emotional. It's extremely personal work sometimes like bathing and tending to the needs of an older person. If that person is your parents, the roles are reversed. If that person is a parent you've had conflict with during your life. I mean, this is hard work. And then it can also be very physically hard work. If you're picking somebody up, if you're moving people from a bed to a wheelchair, I mean, this is work that is primarily invisible to us as a society. Oh, yeah, I'm taking care of my mom.
21:00Amy Wilson:She's getting older. Okay. You're not thinking about the difficulty of that work is so profound. I grew up with my grandmother living with us. She had an apartment in our house. We had a big house. She lived upstairs in a separate unit, basically. And then she started getting very confused. She had Alzheimer's and she moved downstairs for a while. So my parents re-racked our whole house. I was already out of the house by then, but my grandmother lived with my parents. And just to put an extra thing on this, my grandmother didn't recognize my mother anymore and was very, very hard on her. That was constantly finding fault with her caregiving because she was, you know, the lazy person who worked here, not her daughter-in-law.
21:42And that's a sort of often unspoken and I think very hard additional part of this. You're not necessarily getting, oh, thank you. You're the most wonderful person in the world for bringing me dinner in return. You're not getting anything like that.
21:55Amy Wilson:Yeah. And part of dementia can involve mood changes, personality changes. That's right. You think about it in this kind of pink cloud of thinking of like, Like, oh, dad, I'll always take care of you because you were so great to me. You're not picturing a multi-year illness where that person is, I'm not talking about my own dad, but you might end up in a multi-year, very difficult caretaking relationship with someone who does not resemble your dad to you anymore. And I mean, this is hard work. You didn't watch Somebody Somewhere on HBO Max, did you? I mean, watch that show, everybody. It's such a good show.
Read the full transcript
22:34Jeff Hillard just won the Emmy for it very deservedly. But one of the plot points is Bridget Everett and her sister. I forget that actress's name. They're sisters who are taking care of their aging parents. And as often happens, one is becoming less physically able and one is becoming less mentally able. I feel like it's always one or the other. I was just talking to my mom about this, that people either are of completely sound mind and can't get around, or they could chop wood if they needed to and they don't know who you are. And this is somebody somewhere really shows that in the first two seasons.
23:07I have one parent going one way and one parent going the other way.
23:10Amy Wilson:Yeah. And I've definitely been with older people who did not have any capacity left to recognize people or seemingly have any joyful moments in their life. And then you sit down to dinner and they're eating like a steak, mashed potatoes, two sweet teas and pumpkin pie. And you're like, oh, we're going to be here for a while yet. you know, and it's a challenge. So statistically, we're saying about one in three adults in the United States is an informal or family caregiver for someone outside so that not for their children, for somebody else. Population is aging. These numbers keep going up and up and up.
23:46Amy Wilson:People are living longer. And to put a fine point on it, none of our systems are keeping up. We're not doing more family leave. We're not doing lower health care prices. We're not doing anything to keep up with these statistics other than being like, ladies, go help. And the people who do this work in nursing homes and rehabs and hospices, many of whom I've gotten to see in action, do amazing work. They're overworked. They're underpaid. They're underappreciated. It is not something that our society properly pays, let alone staffs. There's not enough of them. And staff shortages everywhere, right?
24:24You're doing it for the calling, not for the 401k.
24:28Amy Wilson:I'm going to talk about some signs of caregiver stress quickly because I think we get it, right? Feeling burdened or worried all the time. Tired often. Sleeping too much or not enough. Gaining or losing weight. Becoming easily irked or angry. Losing interest in activities. Feeling sad. Having frequent headaches or other pains or health problems. Misusing alcohol or drugs, including prescription medicines and missing your own medical appointments. And so I think the facile thing to say here is the thing that everybody says, put your oxygen mask on first. You can't care for other people if you don't care for yourself.
25:03Amy Wilson:And having been in this emergency caretaking situation, easier said than done, guys. Yes. Lots of people saying to me, like, I hope you're taking care of yourself. I'm like, yeah, when when would I be doing that? Like, I'm not taking care of myself. Yeah, I have thoughts about that. I think sometimes people who say, I hope you're taking care of yourself, they're saying that to get themselves off the hook, right? Like, I hope you're taking care of yourself. No, I'm not. Would you like to come over tomorrow? They don't really want to take part. They just want to absolve themselves of concern about your well-being.
25:35We just did an episode about stress versus burnout and how you can tell the difference. And basically, it is that stress turns into burnout. We all live stressful lives. something like this, you can turn into burnout. And burnout is not make sure you make time for yoga class every Tuesday night. You can't get out of it without really important support and attention from the people around you and maybe a mental health professional. You need help. And I think you can get there. And somebody telling you you need to take care of yourself is like they're throwing dirt on your coffin to be like, yeah, yeah, do better.
26:08Amy Wilson:Take care of yourself. I will say on the flip side, some of this work can be very private for people, you know? Yeah. And I think that it can be hard to access help. Like, I know that when my mother was sick, she only wanted one of her daughters there because that's who she trusted to take care of her. And she was kind of right, you know? And like, she was ill and she had been a very put together and beautiful woman and she didn't want other people coming in and she was aware of the burden like it's a tough balance it's not like oh today uncle carl's coming over it's like whoa whoa whoa the last person on earth i want to see is uncle carl you know like and it's work that is hard to share for a reason and i think we're going to talk about it in section three a little bit that setting this up and having these conversations before you're in an emergency i think is really really important But before then, Amy, let's talk about compassion fatigue.
27:09Okay.
27:09Amy Wilson:Compassion fatigue, often referred to as secondary traumatic stress, is a condition that affects caregivers who are constantly exposed to the trauma and suffering of others. This can be like a healthcare worker or it can be an individual who is. Unlike caregiver burnout, which develops gradually, compassion fatigue can occur suddenly after a particularly traumatic event. So burnout is sort of the, okay, I've been taking care of my ill uncle for three years. It's cumulative, right? And I'm so burnt out. Fatigue can be like your mom putting the plate of dinner in front of her mother-in-law. And for the 300th time, she's like, you're a terrible worker here.
27:52Amy Wilson:You kind of break a little bit. You know, you're like, I'm over it. But this is particularly traumatic. Like I heard about this with the beginning of COVID, that health care workers in New York City with, you know, refrigerator tents outside the hospital, that was compassion fatigue. There was a dangerous thing brought on by like, it's always hard being a health care worker, but this is like a backbreaking event and it causes compassion fatigue. That makes sense. That makes sense to me. And so symptoms of compassion fatigue, emotional exhaustion or numbness, difficulty maintaining empathy. This is something I feel like we don't talk about a lot.
28:27Amy Wilson:You're like, just die already, person. I'm not talking about my mother's situation, not talking about personal, but like this feeling of I cannot keep caring this much about this situation. Loss of motivation or sense of purpose, physical symptoms, headaches, gastrointestinal issues, and feelings of self-blame for not doing enough. And I think that often caretaking is, I mean, I've heard people say this, with a child, you're pouring in all these resources and you're like watching the flower bloom. You're watching it grow. You're like, oh, I fed and watered it and watch it turn into this giant tree.
29:02Amy Wilson:But caretaking for an elderly person is like, I'm pouring all these resources in and it's getting worse every day. And that that is psychologically very, very hard to deal with that feeling of like, this isn't going anywhere good. No matter how much effort I put in, this person is fundamentally dying or on the downslope. So it's like the most reasonable feeling in the world or situation to be in that you have this burnout or this compassion fatigue. Of course you end up there. But then what are you going to do about it? How are you going to get out of that? Yeah. And how are you going to not feel like I'm such a terrible person?
29:37Amy Wilson:I just yelled at my aunt with dementia because she asked me for the 75th time when dinner is. I don't feel great about the way I handled that situation, but it's also a very real feeling. So we'll talk a little bit about managing that and also how to sort of set yourself up for success in these caregiving situations. Sounds good. Introducing Taco Bell's new jalapeno citrus salsa with bright citrus, real red jalapenos, guajillo chiles. Usually you add sauce to the food, but when the sauce is this good, the food is just there to get the sauce to your mouth. That rolled quesadilla, not a rolled quesadilla anymore.
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31:05Amy Wilson:And now, time at home versus time at grandma's house. From the What Fresh Hell podcast, at home. You, sir, are in time out. you can sit there until you can behave correctly at grandma's house. Come here, you precious little prince. Why don't we have some cookies until you don't feel like biting anymore at home? Come on, upstairs. A strict bedtime makes for a happy home at grandma's house. Of course we can watch another episode. It's only, oh, quarter to midnight at home. One of our core values is a lack of dependence on material things at grandma's house. Yoo-hoo, I've got presents. I just saw a few dozen things at the cute little toy store down the street and I knew my munchkins had to have them at home.
31:59My children know they can tell me anything at grandma's house. Shh, don't tell mommy. We stopped for ice cream on the way home from the candy store. What she doesn't know won't hurt her. This has been Time at Home versus Time at Grandma's House.
32:16Amy Wilson:From the Webfresh Elle podcast.
32:22Amy Wilson:So, yes, we've all heard the fast soul, like, make sure you're taking care of yourself. Make sure, you know, you don't get too burnt out. It's like, OK, but thanks for giving me another job. You really end up with immovable pieces in these situations. Like, my five-year-old is going to wake up in the morning and need breakfast. And want mommy. And want mommy. and my mother's caretaker didn't show up. So I need to spend the night here because otherwise she could get up in the night and fall. And like, that's real. And also you're talking about aging parents. One of the problems that we haven't really mentioned is that their normal caretaker, who might be your other parent, is also old now.
33:05Amy Wilson:So you may have a parent who's always looked after mom who has Parkinson's, let's say, But now dad is 86. Like he cannot physically take care of her the way that he's been used to his whole life. This can also happen with aging parents when you have a special needs sibling, right? The parents have been taking care of this person who's now in their 40s. The parents are in their 80s. They're no longer able to care for a full grown adult. So these things change and you find yourself in situations that you didn't really see coming. So I think the hardest advice and the best advice is having lots of family conversations about what this is going to look like.
33:52Amy Wilson:And these conversations are hard because we don't want to acknowledge what's actually going on. And a lot of people feel super uncomfortable having these conversations. Yeah, I think it's like you and I both being on the other side of this will come. This is coming for you to have these conversations. it's a very, very different perspective from somebody who's like, but if I just don't think about it, then my parents will stay young and capable forever, just like me. And I think, I feel like I'm strong at this and I played this role because I'm dead inside. Is that what I'm going for? I mean, I'm not.
34:24Amy Wilson:I hope you don't have compassion fatigue. I might have compassion fatigue for life. I think I was born with compassion fatigue, permanent compassion fatigue. I've found myself quite able to sit down with my mom when she was ill and say, what is your best day look like? What do you want? What is your ideal? And let's make a list of Ken's and can'ts, right? So one of her important things was I don't want strangers in the house. I don't want somebody here all day who I don't know. And I had to say pretty quickly, that unfortunately is not a possibility. I cannot be here 24 hours a day. She didn't want me.
35:01Amy Wilson:She just wanted no one. You know, I get it. I don't like if I have a handyman in the house, it ruins my whole day. Like I just like to be in my own little space by myself. Yes, yes. But we had to have pretty frank conversations about who's doing what. And one of the things that they talk a lot about in hospice is think of your role. You probably want to spend the last month of your parents' life being their daughter and not being their nurse, ideally. And you want to be able to sit and visit with them and reminisce and not be like, I'm over in the corner counting the pills or I'm giving sponge baths or whatever I'm doing.
35:41Amy Wilson:Yeah. Easier said than done, friends. You know, someone's going to do all that work. And so part of it may just be carving up your day. And this can also account for caregiving your kid, especially if you have a kid with extra needs. Some of it can be what must I do and what can someone else do? And being really honest with yourself about those things. So start now having conversations with people about what they want their end of life care to look like. It is a really hard conversation. Nobody wants to have it. But how important is it for you? A lot of people will say the most important thing is I want to just stay in my own home.
36:18Amy Wilson:I never want to go anywhere else. That's fine. If there's somebody on the other side to provide that care. But it's also fine to say, I have three kids under 10, and I don't know that it's realistic for you to stay at home when we look at the budget for what that is. So can we make a compromise where you stay at home as long as possible? But when the medical needs get too much, let's go tour three places and find someplace you would be happy. The other thing that's really important to get ahead of time is medical directives, like do not resuscitate and talk to your loved ones. I mean, I mean yourself.
36:52I mean, your partner. I mean, your parents. I mean, everybody who's, you know, over 30 should be thinking about this. Should be writing something down on this topic. Write it down and say, I'll do it too. You can use resources like Rocket Lawyer or things like that to do pretty good healthcare directives having been in this situation. And the answers might surprise you and the answers might change. Sometimes when the stuff hits the fan, all of a sudden they do want some life-prolonging directives that they said they didn't want. That's fine, but you have a clear cut thing. So you're not trying to figure that out in the moment.
37:27Everybody who takes care of your loved one will be very happy that you have that stuff in place. And so will you.
37:32Amy Wilson:And it reminds me of my kind of ultimate parenting advice that I got from my sister-in-law's mom, who's a pediatrician in the beginning, like, how do you sleep and when do you feed them and blah, blah, blah, blah. And she said, I like to use the rule 50 % baby, 50 % mom's needs. So whatever that looks like, if you need sleep, you can't be up feeding your baby, maybe get a bottle involved, like whatever you have to consider your own needs in this situation. And if you can have the conversation beforehand about, yes, we'd all love you to stay at home with only loved ones surrounding you, but brother lives in Guam and sister lives in Canada and I am the only one nearby and I have four kids.
38:13Amy Wilson:Let's talk about what that would really look like. And let's not only live in the world, because I think that people have a tendency to answer these questions and say, well, I just want to die peacefully at home surrounded by loved ones. If that was the way death worked for everyone, I'd be like, yes, I'm all in for that. But it's not. And we have to have the hard conversations about what it really looks like. When you have siblings, too, not everybody has to have the same strength, but everybody has a strength. So your loved ones, siblings, nieces and nephews, your own siblings, your own nieces and nephews, whatever.
38:46Everybody is something that they can contribute. So the brother who lives in Guam can be handling all the paperwork for selling the house or whatever. There are things you can do remotely. I'm thinking of an example of when my dad was sick, I had a sibling who couldn't be around very much. And we had to cancel a really expensive trip that my parents had planned. And of course, they make that we could do it, but you have to, you know, ring 10 bells and fill out form 4B and but only fax it to this number. And so that sibling handled that considerable paperwork burden completely remotely. Right. So I think, you know, when people say you have to be taking care of yourself, like, you know what I'm trying, but it's hard.
39:22You know what you can take on for me? Be ready. Like, know in your head when somebody's like, let me know if there's anything I can do to help. Like, yes, there is. If you could bring over dinner on Tuesday nights, that's the night that, you know, Rebecca has soccer and I really want to get there. Be ready and hand stuff out. And treat it like a job.
39:37Amy Wilson:It might be that every Sunday we have a family Zoom where we review what the week looks like, who's handling what, and then everyone who is not the closest person should be saying, I can take that. I can do that. I can call the nurse. I can make these calls. I can do this paperwork. Two things I want to talk about. Number one, finding groups that are very specific to your situation. So this is the, I am so anti-internet right now, but this is the good side of the internet, which is if you are dealing with a person with Lewy body dementia, something that nobody had heard the term, you know, 20 years ago, you will find support groups that are talking about what that diagnosis looks like, how that diagnosis tends to progress.
40:20Amy Wilson:you're going to find community of people saying, we moved my mother or spouse or whoever into care four months in. You will start to get a lot of information from people. And the good news about 2025, there are some obviously extremely rare conditions, but most conditions, you can find people who are talking about it somewhere online and find that group that can answer your questions useful. Yes. And those strangers on the internet, having been on both sides of that relationship, are extremely generous and kind. And it's really, really helpful to talk to people who get it. Yeah. We see it in our Facebook group sometimes.
40:59Amy Wilson:Like I have this rare thing and someone's like, PM me. I've dealt with it. Whatever it is, put it out there that you're looking for support because people will have more knowledge than you do. Second thing I want people to look into is respite care. Whether or not you have a special needs child, medically fragile child, an adult in your life, Google respite care. Use the social work office at any hospital or care center that a loved one is in and say, what help do you offer? Because they offer a tremendous amount of resources, but you pretty much have to ask for them. And you're not going to use all of them.
41:36Amy Wilson:My mom was not interested in having a hospice clown come and entertain her towards the end. No art supplies? No, she was like, miss me with the hospice clown. But there are tremendous amounts of resources that you may not know about. And don't be afraid to avail yourself of them and ask for them because most places will provide some form of respite care and then prioritize what your needs are. Like if it's respite care for three hours and you're like, this is the time I should really get the shopping done, go home and sleep for three hours, I beg you. Like really in these seasons where life goes belly up, you have to really prepare to take care of yourself.
42:17The next tip, if you're struggling with feelings of depression or overwhelm, don't be ashamed. Get help. Get a therapist, psychologist, social worker at the hospital. Again, if you're at the hospital or the nursing home or the hospice, they have resources. They have people who are ready to help. If you don't know where to look, ask in these groups you're talking about that you really can find on Facebook or at the church down the street. And there are people who are willing to help. And you can talk to somebody who specializes in the particular stress and trauma of caregiving and who can be very, very helpful very quickly.
42:50Amy Wilson:You can find people who mediate sibling relationships during a hospice day. I mean, there are people to help with this stuff. And families are already complicated. And in my experience, when sudden illness comes, those complications, they don't turn the volume down on them, is what I'm going to say. Like, I'm really not talking about my own personal situation, but I know for many people, if you have a sibling who you always find too bossy and another sibling who you always find doesn't do enough, when caretaking time comes, those people are not going to get less that way. They're going to get more that way.
43:27Amy Wilson:And so you may need help navigating the relationships. You know, you may need if you have an interest in maintaining a relationship with siblings through this time, someone once gave me the phenomenal advice. Anything that happens between siblings six months before or six months after a parent dies is wiped from the record. That's very good advice. And I was like, yeah, that's smart advice because it gets prickly and everybody, you know, I remember my sisters and I, when my mom died or was dying, it's like, but my mom just died. It's like, no, also my mom. You feel so overwhelmed. And it's hard to remember that the other people are also doing that thing.
44:07The doctors have a word for this. They call it daughter from California syndrome, which is when I can already picture it. You know, we're moving down a path. Everybody's agreed. We're going to do this. We're going to operate. We're not going to operate. Whatever the decision is, has been made. Everybody's at peace with it. And then running down the hallway, like, stop everything. I'm here to help. And it's really just like chaos and everything's turned upside down. The hospitals have seen it before. So they will have help on how to navigate such things.
44:32Amy Wilson:I have a sister from California. I have to say she's not that way. So good for you. That's good. So we don't really have solutions. I hate to tell you, we have tactics and ways to deal with the fallout. But I'm going to leave you with the number one solution. Start having these conversations today. Don't start having them the day you're calling hospice. It's so fraught by then. It's so emergency by then. If you have parents over 70, start having these conversations right now. And also have this conversation with your spouse. What do I want this to look like? Because it gets tricky and heated later on.
45:09Amy Wilson:And just sending out so much love and support for the people doing caretaking. We know how hard it is. Yeah. It is as hard as you think. It is harder than you should have to be dealing with. We agree. We agree. We've been there. We understand. We see you. Happy National Caregiving Month or something. If you'd like to share this episode with someone you know who is dealing with caregiving and needs a little support from the What Fresh Health podcast, just share this episode. Post about it on your Facebook page. Let people know you're listening and enjoying the podcast so we can reach even more ears.
45:45Amy Wilson:We appreciate it. And with that, we'll talk to you next time. So long.
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From the publisher
Amy and Margaret honor National Caregiving Month with an honest, compassionate look at the realities of caregiving. From raising kids to caring for aging parents—or both at once—they explore the invisible labor, emotional toll, and financial strain that caregivers face every day.
They share personal stories, research-backed insights, and practical advice for managing burnout, compassion fatigue, and family dynamics. Whether you’re part of the “sandwich generation” or just beginning to navigate caregiving, this conversation offers solidarity and tools to help you find support and protect your own well-being.
Here are links to some of the resources mentioned in the episode:
Parkinson's Foundation blog: Finding Balance: 8 Tips for Avoiding Caregiver Burnout
Guardian Life blog: Standing Up and Stepping In: A Modern Look at Caregivers in the US
Mayo Clinic: Caregiver stress: Tips for taking care of yourself
Single Care blog: Caregiver’s guide to self care & avoiding caregiver burnout
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caregiving, caregiver burnout, sandwich generation, National Caregiving Month, mental load, aging parents, elder care, motherhood, self-care, compassion fatigue, invisible labor, family stress, emotional labor, parent care, What Fresh Hell podcast, mom friends, funny moms, parenting advice, parenting experts, parenting tips, mothers, families, parenting skills, parenting strategies, parenting styles, busy moms, self-help for moms, manage kid’s behavior, teenager, tween, child development, family activities, family fun, parent child relationship, decluttering, kid-friendly, invisible workload, default parent
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