The host of ‘Daughterhood the Podcast’ reflects on long-term care in the US, the role of family caregivers, and implications for their health and wealth.
Our guest on the podcast today is Rosanne Corcoran. Rosanne is the Director of Content Strategy for Daughterhood.org, which is focused on creating community and providing resources to family caregivers. Rosanne also hosts a wonderful podcast called Daughterhood, the Podcast. In addition, she facilitates support groups and meetings for caregivers and has experience as a family caregiver herself.
Daughterhood the Podcast: For Caregivers
“5 Common Misconceptions About Medicaid,” daughterhood.org blog.
“4 Tips to Make You Smarter About Your Parents’ Medicare,” daughterhood.org blog.
“3 Medicare Benefits You MUST Know About,” daughterhood.org blog.
“AARP Research Insights on Caregiving,” aarp.org, March 27, 2025.
“Caregiving Statistics: Work and Caregiving,” by Family Caregiver Alliance, caregiver.org.
“End of Life Care & Caregiver Burden With Jessica Zitter, MD, MPH,” Daughterhood the Podcast: For Caregivers, daughterhood.org, Feb. 11, 2021.
“Challenging Behaviors in Dementia and the Reasons Why With Judy Cornish, Founder of the Dawn Method,” Daughterhood the Podcast: For Caregivers, daughterhood.org, Aug. 12, 2021.
“The Final Days of Hospice and What to Expect With Barbara Karnes,” Daughterhood the Podcast: For Caregivers, daughterhood.org, Feb. 8, 2024.
“Finding Meaning in Caregiving With Dr. Allison Applebaum,” Daughterhood the Podcast: For Caregivers, daughterhood.org, March 14, 2024.
“Empathy in Caregiving With PK Beville,” Daughterhood the Podcast: For Caregivers, daughterhood.org, June 10, 2021.
“A Conversation With Leeza Gibbons,” Daughterhood the Podcast: For Caregivers, daughterhood.org, Jan. 14, 2021.
“2025 Policy Changes for Family Caregivers,” Daughterhood the Podcast: For Caregivers, daughterhood.org, Feb. 25, 2025.
National Alliance for Caregiving
“Howard Gleckman: We Pretend This Isn’t a Problem,” The Long View podcast, Morningstar.com, Jan. 16, 2024.
How to Retire: 20 Lessons for a Happy, Successful, and Wealthy Retirement, by Christine Benz
“Jean Chatzky: What Women Need to Do Differently With Their Money,” The Long View podcast, Morningstar.com, April 8, 2025.
(Please stay tuned for important disclosure information at the conclusion of this episode.)
Christine Benz: Hi and welcome to The Long View. I’m Christine Benz, director of personal finance and retirement planning for Morningstar.
Amy Arnott: And I’m Amy Arnott, portfolio strategist for Morningstar.
Benz: Our guest on the podcast today is Rosanne Corcoran. Rosanne is the Director of Content Strategy for Daughterhood.org, which is focused on creating community and providing resources to family caregivers. Rosanne also hosts a wonderful podcast called Daughterhood, the Podcast. In addition, she facilitates support groups and meetings for caregivers and has experience as a family caregiver herself.
Rosanne, welcome to The Long View.
Rosanne Corcoran: Thanks for having me.
Benz: Well, we’re excited to have you here. This is an important topic. You are the Director of Content Strategy for Daughterhood.org, and you also host a wonderful podcast called Daughterhood, the Podcast. But we’re hoping we can start by discussing the genesis of Daughterhood.org and what the organization aims to do.
Corcoran: Anne Tumlinson created Daughterhood. She’s been working in the field of aging and research and health policy for almost 30 years. And she’s very familiar with how the different systems we have in this country work and the impact they have on everybody who has to navigate them. At one point, she had a friend who was taking care of her mother, and she of course went to Anne to ask questions. And in the process of Anne giving advice and talking it through with her, she realized what an actual nightmare it is to try to go through these systems when you’re a caregiver. So she thought, well, if I can help her, I can help other people. So that was the genesis of Daughterhood.
And Anne always says, when we’re growing up, we have our childhood friends and we get married, and we have our motherhood friends. And then when you get to be an adult and you’re suddenly in this role, it’s not like people are getting their parents together to have a play date. They’re not. You don’t have that ability to say, hey, you know, what care company are you using? Or my mom’s not drinking a whole lot. How did you get her to drink? You don’t have that. So that’s where Daughterhood began in that space.
Arnott: And before we go any further, why Daughterhood specifically? And why does family caregiving so often fall to women in the family or daughters specifically?
Corcoran: Our friends at the National Alliance for Caregiving approximate that there’s 66% of caregivers in the US are females. So that’s two out of every three caregivers are women. And I think it’s that natural progression that we have. You have children, you take care of children. You’re in a relationship, you’re the nurturer. And I know these are broad strokes. I know that. We’re not downplaying the fact that men provide care. We know that men provide care. But for the most part, primarily it is women. And it’s almost expected of us. So, it’s not, hey, you’re caregiving. Let’s support you. It’s, well, of course you’re caregiving. Why wouldn’t you be caregiving? So that’s where Daughterhood comes from.
Benz: Would the resources on Daughterhood.org also be relevant to men who are involved with caregiving? And do you have male listeners to your podcast, for example?
Corcoran: Yeah, absolutely. Caregiving knows no boundaries. So whether you’re a man, you’re a woman, spouses; we have spouses that come to our groups. We have had a few men that have come to our groups. They are absolutely open to men to use our resources.
Benz: I wanted to ask about how single children and people without kids seem to often be the ones who are called into caregiving in families. Has that been your experience? And have you seen any data to support that? Anecdotally, it seems to be the case, but I’m curious what you hear and see.
Corcoran: So I’m also a Daughterhood Circle leader. So I have the privilege of speaking with family caregivers all month long. And we have seen an increase in solo caregivers, in only children. And it’s a different type of stress because they don’t have anybody to lean on. Not to say that caregivers that have siblings have that support either, but they don’t have anybody to bounce ideas off of, those types of things. And that’s why when they come to our circles, they find it so helpful because there’s actually other people they can discuss these things with. I don’t know if it’s because people didn’t have as many children as they used to have. My mother came from, she was one of 12. As we’ve gone through the ages here, people have had less and less children. So I don’t know if it’s that, but we have seen a definite increase in single carers, yes.
Benz: Relatedly, Rosanne, how about people who are not married and people who don’t have kids? Do they tend to be the ones who are shouldering a lot of the burden of caregiving within their families?
Corcoran: They are as well, yes. Yeah, because it’s just them. And we find a lot of them obviously move in with their parents to care for them. And then that creates a whole other level of issues for them because have they left their jobs to care for their parents? And then they’re living with their parents, they don’t have much of a social life, let alone other relationships. So it’s very isolating. It’s even more isolating for them.
Arnott: It sounds like you had some personal experience with providing care for your mom. Can you tell us a little bit more about how you got involved in the organization and what your background was?
Corcoran: Sure. I was caring for my mom. My mom was living independently. Right around the time she turned 80, she thought that her memory was changing, and she was still living independently. So I was supporting her while she was living independently. She lived 20 minutes from me. I would go down. I would see her daily. I would call her four or five times. She was still working actually. She was a hairdresser, and she worked until she was 83, believe it or not. So I was very involved with my mother. About seven years of providing that type of support, it was evident she couldn’t live alone, and we moved her into my house with my husband and my two young children. And one night I was on the internet looking for information, desperately looking for information, and I came upon one of Anne’s blogs. And it was so real, and it was so honest. I thought, well, this woman understands what I’m going through here. And at that time, it was 2018. I’m sorry, it was 2015. But at that time, daughterhood didn’t have a circle in my area, and I thought, boy, if I could ever have someone come in and give me some relief, I would start a Daughterhood circle in my area.
But in the meantime, I would read her blog. And I kept reading her blogs, and they validated my feelings. They made me feel less alone and really importantly, they gave me a little bit of hope, which is what I really needed because I had no idea how this was going to change. I had just spent all that time running back and forth and managing. And then having my mom in my house thinking, OK, well, this will be easier because she’s in my house. And while it was easier, it was not easier because it was a whole different set of circumstances. Our whole family dynamic changed, and while it was better because I was actually home, I still wasn’t involved. It was very hard to try to manage caring for my mom and still being involved with my family. And that’s one of the things in caregiving that makes it so difficult because you always feel like somebody’s losing out.
Benz: We want to delve into some of those challenges, Rosanne, and specifically the aspect of helping care for someone with dementia. But before we do that, I just wanted you to reflect on something that Howard Gleckman said to me. He is someone who focuses on long-term-care policy and went through his own long-term-care experience with his parents. He made the observation that when we go through a caregiving experience, we’re often kind of spent at the end and possibly traumatized a little bit. And we just want to kind of put it behind us and move on. And we don’t do anything to document our experiences or try to make things better for the ones who come behind us. Can you talk about that? Does that ring true for you?
Corcoran: So yes and no. I have seen, there’s a lot of people that when their caregiving journey ends, they’re done. They don’t want to talk about it. They don’t want to think about it. They just want to move forward with their lives. And I completely get that. But then there’s those of us that stay in the space. And my friends will say to me all the time, are you done with this? Like, aren’t you done with this? Don’t you want to …? And I’m like, no, I’m not. I’m not. And I think, honestly, I think it’s because I know how I felt, and I adored my mother. And I would have done anything and did do anything for her. And I still felt isolated and terrified and guilty that I wasn’t doing enough when I clearly was doing enough. But that’s not how you feel. And I tried to manage it all. And to think, to be able to say to another caregiver, I get it. I see you and you are doing a good job. And to be able to walk with them through their caregiving journey is an honor, quite honestly. And so I get both sides of this, and I see it in our groups, in our circles, where sometimes people, their care partner will die and then they’ll still stay on with us, either in a grief group or in an after-caregiving group.
But there are others that are like, nope, done. Don’t want the newsletter anymore. I’m not doing any of this. So I think it really just depends on how that sits with you and where you want to go with that. And I know that’s not a direct answer, but I’ve really seen both sides of that.
Benz: No, that’s helpful.
Arnott: So I wanted to follow up on the caregiving circles that you have. Can you discuss how those work and the type of topics that you discuss and how you use the circles to provide caregivers with support?
Corcoran: So all of our circles are led by volunteers who are professionals or advocates or were caregivers or are caregivers. And we have two different types: connection and topic. Our connection circles really provide the space for people to come in and just be where they are, share what they’re dealing with, ask questions if they’re struggling with something and need help or just be with other caregivers who understand. And they know they’re not going to be judged. They know nobody is going to say anything. When caregivers come in and they say things like, “I can’t stand my mother, and I don’t know how I’m going to do this.” Nobody goes, “Oh, I can’t believe you said such a thing.” No, it’s like, yeah, we get it. We get it. Or [they say], “I don’t know how I’m going to finish this out, and I don’t know where to look,”—those types of things.
It’s comfortable and it’s safe. And we have multiple connection circles through the month. We also have topic circles during the month, which are just that. There are specific topics, where whether it’s unpacking senior living, or we have self-care circles. We have the guilt and shame circle. We have our dementia topic circles where one month the topic could be dealing with, how do you deal with hallucinations and the next month it could be how do you deal with incontinence? We have a caregivers of color circle. We also have three grief circles a month because grief is the thread that runs through caregiving that no one talks about. And it doesn’t matter if it’s the beginning of your journey or the end. It’s not just when your person dies. It’s anticipatory grief. It’s the grief you feel over your relationship with your parent that’s changing. It’s the grief you feel over your life changing.
I mean, it’s everywhere. And then we also have an after-caregiving circle because no one really realized, when you’re caregiving ends, you have all of these feelings. Who am I now? What’s my purpose? What am I supposed to do now? And we added that in this year because it’s important and a lot of people think, OK, well, it’s done. You can go back to your life and it’s like, no, I can’t go back to my life. My life doesn’t look like it did when I started caregiving. It’s completely different now and I’m completely different and I have to find a way forward. And we try to help in that, and anybody can join at any time whenever they want for as many circles as you’d like. They’re always free.
Benz: That’s great. Would you say that the resources are there mainly for the unpaid family caregivers rather than people who are delivering care on a paid basis?
Corcoran: Yes, we are focused on family caregivers.
Benz: OK. I’m hoping you can discuss what falls under the umbrella of caregiving and what types of services we’re talking about people providing.
Corcoran: Sure. It depends on what your care partner, what disease or condition they have. Family caregivers run the gamut for caring for somebody with illnesses like dementia or Parkinson’s to someone with COPD or cancer. But, assisting with activities of daily living, which are basic bathing, dressing, grooming, eating, and helping with mobility, transferring, helping someone to the bathroom, providing companionship, emotional support, meal prep, grocery shopping. It runs the gamut. Managing finances, medication, doctor’s appointments, transportation to doctor’s appointments or wherever else, housework errands. There’s so much that goes into it physically and then you have the communication with doctors and the medical professionals, which then leads to making sure that your care partner adheres to the treatment plans that are in place and that they take their medication. And you manage the prescriptions, which is a job in and of itself, along with insurance.
And then the other part that’s kind of not seen is that you’re making important decisions on behalf of your care partner, which may or may not be easy for you, depending on if you had those, “what’s important to you” conversations before all of this happened. And especially with dementia, if you haven’t had those conversations and even if you did with dementia, it’s hard because you’re in full control here and you have to make the best decision with the information that you have. And even though you might know that you are, there’s always that layer of, I don’t know, is this what I should be doing? And because you can’t talk it through, it makes it even harder. And then, of course, you’re providing the emotional support and encouragement and being there to listen to your care partner. You’re in this together. And the part that gets lost a lot of the time, which is what makes it hard for caregivers, is that we’re not seen as that essential part of this dyad. And we are. Without us—aside from holding up the healthcare system—without us, our person can’t get all of this done. And that’s what we’re providing. So there’s more than just the practical that goes with all of this, which is also why it’s so exhausting. But that’s the part that kind of gets washed over.
Arnott: I haven’t been through this experience myself. But what about people who are indirect caregivers where maybe they’re not directly assisting their parents or other relatives with activities of daily living, but they’re kind of overseeing other caregivers? I would imagine that could be stressful as well.
Corcoran: Overseeing other caregivers is one of the most stressful parts of caregiving, because you’re the manager. You’re the care manager at that point. So you’re in charge. Who’s coming in? What’s happening? Are they doing the job that you hired them for? Are they getting along with the person that they’re here to take care of? All of that. Are they coming next week? What happens if they don’t come? Did they show up? Did they not show up? All of that goes into it. So yes, whether you’re, physically there or overseeing something. Yes, of course. And even if you’re dropping groceries off, yeah, you’re caregiving in my book.
Benz: So this was my role in my family. And I felt like it was something that my parents had kind of ignored in their plan, frankly, where they had the funds to cover long-term care to be provided in their home. But it was sort of like they hadn’t addressed the fact that there would be all these things needed to keep the household running while the caregivers were there delivering the care, like the groceries or like the person to meet with the roofing contractor. It just seemed like all the time there were obligations related to managing this other household. And I’m wondering if you have any thoughts for families where that is the plan to have in-home care. How can they ensure that things happen smoothly, that expectations get communicated, and so forth, to the family about what it will take to keep the caregiving happening at home?
Corcoran: Christine, that’s a heck of a question. It’s hard and you have to be very organized, and you have to know what you want. But you also have to manage your expectation with what you’re putting out there. There will be times when things don’t go according to plan and that’s OK. So you have to be flexible in the midst of all of this, but it’s hard to be flexible when you’re counting on other people to provide this care. So going into it, I’ve had many people in our circles who—and I’ve done it myself—when you have somebody coming in, the best thing to do is to provide them with a list of things. So, for instance, I made a binder.
So when I had a caregiver come in, I had a binder of all the television channels, the shows that my mother liked, the fact that you have to keep the fan on in her room because if she gets overheated, she’s going to pass out. So like those types of things. She likes her coffee like this way; the remote for the fan, it’s kind of funky sometimes. Things down to that detail so that everything is taken care of. And that falls on the caregiver. And while it’s a pain to put all of that together, once you have it, that’s your binder. So when it doesn’t matter if you have a different caregiver that comes to your house every day, you still have that same set, here you go. So you don’t have to stand at the front door and say, “so here’s the thing, mom likes this channel and she…”—you don’t have to do that. So it helps to be prepared in that way and to have a plan. But it takes a lot of energy, and it takes a lot of time from the caregiver.
Arnott: So we know that you’re not a financial specialist, but are there any best practices in terms of financially covering long-term care? Or does that really depend on the family’s individual situation and net worth?
Corcoran: Yeah, it absolutely does. I am not a financial person, but we know that long-term care is a huge issue. And I don’t think it’s possible to save enough money for long-term care. You’re looking at monthly prices that are more than anyone has paid for their monthly mortgages. And especially if you have dementia, depending on where you live, you could be paying $10,000 or $12,000 a month, conservatively. So you wind up playing that horrible math game. You know, how much do we have? How long do I think they’re going to live? And how much is this care going to cost? So the long-term-care industry, unfortunately, I’ve had people who have really benefited from their parents taking out their long-term-care coverage years ago. And then there are others who the company was acquired by somebody else and there is no money. There’s lots of resources out there that may help—veterans’ benefits, reverse mortgages. I don’t know any of the particulars, but to sit with a financial advisor would be my best advice. We know that there are some states right now—there’s 12 states—that are trying to figure out how they can provide a long-term-care benefit. I don’t know how that’s going to look in the coming years. But at least someone’s thinking about it, and they’re paying attention to it, which is a plus. But a financial advisor is the way to go. Definitely.
Benz: There’s also widespread confusion about what Medicare covers in the context of people who need long-term care. And the short answer is that it doesn’t really cover long-term care. I feel like there’s so much confusion about this.
Corcoran: No, well, because people get Medicare and Medicaid confused.
Benz: And people also get the rehab-type care confused with long-term care in my experience.
Corcoran: That’s exactly right.
Benz: I think that mixes this people up too. But maybe you can talk about those things.
Corcoran: Well, yeah, because Medicare will cover a rehab stay that happens in a skilled nursing facility after a hospital stay, after a three-day hospital stay, and they will cover it for up to 100 days. But of course, after 20 days, patients are partially responsible. Again, there’s a lot of things that go with it, but they do not cover long-term care. They cover some durable medical equipment, but not the actual care. That’s where Medicaid comes in. And unfortunately, people interchange them and they’re not interchangeable. So yes, to your question. No, they do not pay.
Arnott: Can you talk a little bit about some of the limitations of Medicaid for long-term care, and what are some of the things people need to know there?
Corcoran: So, every state has their own requirements. So you have to meet specific income, asset, and functional needs, and each state sets up their own system. So there’s a five-year lookback also that goes into this. So we’ve all heard about the people that gave away their money so they could qualify for Medicaid. I don’t know if that’s accurate, but there is a five-year lookback now. So it’s very difficult. And even that changes—some states have a longer lookback. So it’s very hard to try to skirt that. But Medicaid coverage options are also managed by each state. There are different programs that they have. There’s a PACE program for dual eligible people, meaning they have Medicare and Medicaid combined. But again, there’s certain requirements that you need to meet for that. When it comes to Medicaid planning, the best thing to do is to contact an elder-law attorney who specializes in Medicaid because there’s just too many issues and there’s too many things to try to keep up with and things change quickly. There’s also, you don’t know how many people are waiting to be in that eligibility list. There could be hundreds of thousands of people in front of you.
Benz: So in addition to the financial challenges of long-term care, my understanding is that there’s a shortage in caregivers available, especially to provide in-home care.
Corcoran: Yes.
Benz: And even if someone has the financial wherewithal to pay those caregivers out of pocket, they may have trouble finding them. Can you discuss that dimension? Why that’s happening? Why we do have that shortage?
Corcoran: There’s just such a high demand for long-term care. The demand is there. It’s hard work. It’s expensive. And a lot of these caregivers could make more money at McDonald’s than they do being paid caregivers. I mean, that’s the reality. So it’s very hard to find them. And that’s where we’re at. Covid exacerbated all of it, but we are well past that time now. It’s very hard. And then it’s hard with caregivers to, when you finally admit that you do need help to then say, OK, I’m going to have somebody come in. And then you call the agency and it could be $40 an hour with a four-hour minimum. So that’s if you brought somebody in five days a week, it’s $800 a week. And to look at that and think, wait, I can’t pay that money, even though it’s helpful to the caregiver on so many levels, they can’t. It’s almost untenable. So there’s so much that goes into that. And then the fact that there’s nobody to come in to help you, it adds to that isolation and that overwhelm the caregivers feel.
Arnott: If you are looking for a caregiver, can you talk about some of the agencies and geriatric care managers that you might be able to get in touch with to help you find someone to fill that role?
Corcoran: The Aging Life Care Managers, their website is a great resource. It’s aginglifecare.org. It’s filled with resources, and they have a locator so you can find an aging life care manager in your area. They’re great because they come in and they can give you an overview of what your parents need. They can also be the bad guy for you instead of you saying, “You know, mom, you really need bars to go up the steps.” They can come in, so you don’t have to play that role. I know there are people that use the online platforms to try to find somebody— care.com. But you always have to check and double check when you’re not using an agency. I always tell people if you live near a teaching hospital or a nursing college to check with them and see if there’s any nurses that are looking for hours for their coursework or if they’re looking for some companion-care work because sometimes they are.
And you always ask your friends and relatives because it doesn’t take you too many questions to get to somebody who’s a caregiver or knows somebody who’s a caregiver. And if they had used somebody or they used an agency that they liked, it’s really hard with the agencies because of the shortage, these workers are really—people want them so they can move from agency to agency. So it’s hard if you had somebody that you really liked and now they left that agency and went somewhere else. And it’s hard also with trusting that they’re trained in what you need them to be trained in. So it’s really been a challenge and it’s, again, it’s wearing on the family caregiver because they don’t have that break, because they can’t get the break even if they wanted it, they can’t get it.
Benz: Amy mentioned geriatric care managers. Is that the same as the aging care specialist?
Corcoran: Aging life care.
Benz: Aging life care?
Corcoran: Yes.
Benz: Same thing?
Corcoran: Yes.
Benz: OK.
Corcoran: Yes, they changed to Aging Life Care Managers.
Benz: And I am sure it varies a lot by geography, but if I’m hiring that sort of person, is there a ballpark of how much I would expect to pay for that engagement for an evaluation of my parent and recommendations about steps we should take?
Corcoran: It does depend on what area you’re in. It could be $150 an hour. It could be $250 an hour. It depends. It is money well spent. Of all the things that you can do, it is definitely money well spent.
Arnott: We also wanted to talk about some of the financial impacts that family caregivers often experience, and it sounds like a lot of people in this caregiving role might experience a career setback or even job loss.
Corcoran: Yes. There’s lots of different reports. AARP had a report, the National Caregiver Alliance about working and family caregivers, and we know that most caregivers, the quote is that they spend at least 20 hours of care a week, which is equal to a part-time job. I would argue that that number is actually probably higher, but OK. So we also know that when you’re working and providing this care with another part-time job, which would be caregiving, it affects you. It has to affect you. And we also know that people turn down promotions, they turn down travel, they move from full-time to part-time. Some people take an early retirement and some just flat out quit because they just can’t do it. They can’t keep up with it. There was also, I saw a report that said that employers are more sympathetic to family caregivers who care for children than for the ones that care for adults.
And I found that really interesting because it’s such a different perspective. And I’ve heard that from people in our circles where, nobody wants to say, “I take care of my mother at work,” because they’re going to look at you differently. They’re not going to get the assignments, or you’re not going to get on this team or that team because we can’t count on you. So that’s another thing and that’s another burden that working caregivers carry is that they can’t share what’s happening in their lives at work for fear of not being able to work. And it’s just, it’s a really hard cycle to try to navigate.
Benz: In my book, Jean Chatzky makes a strenuous argument against women leaving the workforce to care for elderly parents. She points out that it can be terribly hard to get back in if you separate from your job when you’re in your fifties or early sixties or something like that. And she makes the point that even if paying these caregivers takes almost everything that you make, it’s still probably a good trade. Do you agree with that or are there practical challenges to that that someone would face?
Corcoran: Yeah, definitely practical challenges. I understand what she’s saying because I don’t know how you leave the workforce and then try to get back into it at that point. But again, the thing that happens with caregiving is it doesn’t happen in a vacuum. It’s exhausting. And especially if you’re caring for somebody with dementia, it’s doubly exhausting if they’re up all night because sleep is not something that comes to dementia caregivers a lot. And while I understand what she’s saying and I appreciate that because we know you leave the workforce, you don’t have Social Security contributions, what are you doing for your health insurance? There are so many things that go with it. I just don’t know how you keep that schedule up because when you come home, that part-time job that you have that they consider caregiving the 20 hours, a week is not predictable. It’s not like you can come home and say, I’m going to just do this, and then I’m going to be able to do some work where I’m going to be able to relax or I’m going to be able to go to bed. You don’t know. And there’s a lot of variables that go with this. So maybe, but I don’t know if I agree with that advice.
Arnott: So how can people deal with the physical, emotional, and psychological toll that caregiving can take? We hear a lot about self-care, but it seems like maybe that might be a Band-Aid. And if you’re in the trenches with providing care 24/7 or worrying about your loved ones.
Corcoran: It’s almost like self-care is weaponized. And when I would hear somebody say, “You know, you have to take care of yourself.” Like, yeah, I know. Any ideas? I don’t have a thought here. Do you have something; is there something you’re seeing that I’m not? Because it’s almost impossible. But the reality of the situation is that you have to because you have to find a way to do something that feeds your soul. And it’s a very personal thing because I don’t know what would work for you versus what would work for me. We hear all the time: You have to get outside; you have to breathe. If meditation is your thing, great. I used to listen to audiobooks. When you go through that routine of your day as a dementia caregiver, when we got to the 7 o’clock hour and it was, in my world, it was Jeopardy and Wheel of Fortune. I couldn’t stand the sound of that wheel one more minute.
I just couldn’t do it. And I would listen to books, and I would put my AirPods in, and my hair would cover my ears. So I was sitting there, but my mother couldn’t see that I wasn’t listening to Wheel of Fortune. I couldn’t do it. And that helped me. So, that’s what I mean by its whatever works for you in those moments. I also know, it’s hard when somebody is drowning and stressed out to say, just take a breath. I can’t take a breath. My shoulders are up by my ears, and I can’t get a breath. And that’s a hard position to be in. And when you’re in that position, you can’t see anything but that. You can’t see, well, I can do this for myself. And sometimes it comes down to something as basic as look for something in your room. Can you name three things in your room to bring you into that moment? Because we dissociate from ourselves also, because it’s so much. And we don’t know how to deal with all of this and how this is going to go. And what’s tomorrow going to be like and what about next week?
We get caught in all of that. It takes a lot. And, when my mother died—it was just her four-year anniversary of when she died—it completely broke me physically, emotionally, psychologically, spiritually. It broke me. And the whole time during caregiving, I thought, well, I’ll worry about it later. My back’s killing me, my feet hurt, I don’t sleep, all of that. But it was almost like I’m going to put it on a shelf and get back to it. And I will tell you, it’s not a good move because you have to answer for that. And if you can find these ways during your caregiving to have that little bit of a respite for yourself, and it’s hard, like we just said, it’s hard trying to find caregivers, it’s hard trying to find somebody to come in. And the guilt that we all feel of having that person come in so that we can care for ourselves, we have to put that somewhere and be able to take that moment for ourselves so that we’re not so exhausted and broken when it’s over because it will end.
And you have to survive this. And not just survive, but you have to be in that position of, OK, now I can take care of myself. But you still have to find those ways during that time. In whatever way works for you that’s not detrimental to your health. Like, you don’t want to drink 14 beers at night or something, you don’t want to do that. Something that’s productive that can help you.
Benz: In one of your podcasts, you discussed that caregivers often experience a form of trauma. You already mentioned grief as an aspect of this, but can you talk about trauma?
Corcoran: Yeah, I don’t think there’s a caregiver that comes out of caregiving without some sort of trauma—without experiencing something, either through the process of whatever disease or condition your care partner has, or the end-of-life process that no one prepares you for, that you’re not prepared for, and that you come out of and second-guess yourself. So there’s so many things. I had sensors for my mom. I had a motion sensor in her room, and I had a sensor mat so that when she got out of bed, she would step on it and the alarm would go off in my room. And again, this year was the first time that I could enter a store without that bing bong that would set me off. It made my heart jump. It made my body jump. It was awful because that was my experience every night where if I fell asleep and she got up, that’s what startled me. That’s what woke me up.
The problem is we don’t have a lot of research on trauma in family caregivers. We have it in paid caregivers, but we don’t have a lot of it with family caregivers because it’s not, I don’t know if it’s not thought about. I don’t know. But it’s real. And again, in our circles, when somebody talks about it and you say it’s trauma, it’s PTSD, they’re like, oh yeah, that’s what it is. I mean, it makes perfect sense, but it’s like, what do we do now? And how do we deal with this? And again, it’s trying to get back into you. You have to calm your system down because we’ve all been so, it’s like being electrified almost. You’re in that constant state of what do I do? What do I need to do? What’s next? What’s happening? All of that. And it’s real.
Arnott: Yeah, I can imagine that people would be in a constant state of hypervigilance.
Corcoran: Yeah. Absolutely. Every day.
Arnott: If there are older adults who are planning ahead and know that they want to rely on a family caregiver, are there things that they can do to be preemptive to ensure that the child who handles most of the caregiving doesn’t face a disproportionate impact?
Corcoran: When it comes to the parents and the child, they can work together as a team to have those conversations. And they’re not easy conversations. They’re the conversations of, I want to help you live as long and as well as you can, but we have to talk about these things. And sometimes parents can be very guarded, especially with financial information. And it’s hard to broach that. And then if you have other children involved, it’s very hard. And then it becomes, who’s going to be in charge and how is that going to look? That’s the challenge here. And you have to work together as a team. And if you don’t have that, you’re left with, I don’t know where anything is. I don’t know what they want. My mother would say to me, “Oh, you know what I want.” And I’d be like, “OK, mom, thanks.”
And fortunately, I had an inkling, but I hear that story more often than not, or I’m not going to talk about this because I don’t want to talk about it. And that’s it. And they dig their heels in. So it’s a continual conversation of I want to help you, how can we make this, what can we do to plan this? What can we do to support you? And it has to be in a nonconfrontational way. And it has to kind of happen a lot. Like you can’t just say, OK, well, I tried this two months ago, and they shut me down. OK, you have to go back to the well and say, can we try this again? We really should talk about this. We really need to talk about this because I want to help you. But it’s very hard, but it can be done in a supportive environment.
Arnott: Earlier, you referenced, Rosanne, the covid period about how it was a particularly difficult time for caregivers and caregiving. You were working on the podcast at that time and on daughterhood.org. Can you discuss that experience and what you learned from working with people who are providing care during that period?
Corcoran: Yeah, that was, talk about trauma. That was a lot. So I had my mom was at my house, and I was fortunate that there was a home care doctor’s service. So I had doctors coming to my house. So she didn’t have to go to the doctor’s office. We had phlebotomists coming, you can even get an ultrasound. I was very fortunate. So they would continue to come, and they would come in their spacesuits, which was great, but everything else. And then in December, my mother actually went on hospice, and they had no services during that time. So it was really a challenge. Obviously, I didn’t have any caregivers. It was just me. And as much as I’m a really fun person, but after a few months, my mother was like, “Is there nobody else coming here?” I was like, “No, mom, it’s just us. Just you and me.”
So it was hard. And my siblings would come, and they would be on the front lawn, and she would look at them through the window and she’d say, can’t they come in? No, they can’t come in. And we pivoted from in-person circles to online circles at that time. And it really saved all of us because we were still able to see each other and say, what are you doing in here? Like, how are you making it through this? And we were horrified because we were stuck. And we were like forgotten because remember in September, October, people were going out, even by the summer, people were going out. And we were like, oh, I can’t go out.
The fear that I had of leaving my house and then coming back in to potentially bring something back to my mother, even though I was wearing a mask and running through stores to get things and come back, it was a big fear. And I thought that guilt, if I would have brought something home, I don’t know how I would have lived with myself. And, I had two kids that were in school and a husband that traveled, like there was a lot happening in my own life. And it was being mirrored to me through our circles. We were all trying to figure out how we were going to survive this. And there was a point where I didn’t think I was, quite honestly, because at that point in December, my mother started to be up all night. She would go three or four days straight without going to bed, which meant I was up for three or four days straight. And it was, I know it was because of the isolation. I know it was because of all of the different changes. But what do you do with that? And that’s where we all were at that time.
Like what do we do? And the fact that we still had a community that we could meet online and see each other was a savior. But everything else was just, it was the worst experience. I actually said to my husband at one point, if I die, just hire somebody to come in, because I don’t know what else we’re going to do here. That’s where I was during covid.
Arnott: Have you had discussions about starting the in-person caregiving circles back up now that we’re in the post-covid era? Or do you find that the online format is working pretty well?
Corcoran: Yeah, we have not because, because we realized we were able to reach more people and to be able to jump on and jump off, like especially if you’re caring for somebody in your house, to be able to speak online and then be like, oh, I’ll be right back. And you can leave and go take care of what you need to take care of and then come back. It’s been really wonderful in that regard. And we can reach everybody across the country, because it’s not just having x amount of circles in different cities. Now it’s nationwide. And it’s just easy. We meet on Zoom. Everybody knows how to use Zoom now after covid. And so no, this is where we are.
Benz: I wanted to ask about the podcast, whether you have any favorite episodes and whether you’ve heard from listeners about episodes that they really enjoyed.
Corcoran: I have. It’s funny because when I started the circles, when I started the circle in my area, after a few times of meeting, it was like, we were all talking about the same thing and wondering why we weren’t, why wasn’t anybody talking about these feelings and what went with caregiving. And that’s why I started the podcast. And I thought if I could get one out a month even with caring for my mom. And that was the genesis of it. So to think that people are actually listening to it. And I know that they are, but even when they reach out to me, and like really listen? Like, it’s still that, wow, OK, that’s really cool. And I’ve had people email me and say, “I listen to you at night, it helps me to fall asleep. It keeps me company. If I’m anxious, I’ll listen to it so that they feel like they’re not alone.” And that means, I mean, I can’t tell you what it means to me because I know that what that feeling is. And I know how important it is to have at least a touchstone to go, OK, I can do this, I can make it.
So that’s just, it’s beyond anything I could have ever thought about. But I’ve been so fortunate to talk to so many people. Dr. Jessica Zitter, I’ve had on a couple of times. She actually helped me with my mom in the later stages there of hospice before her death. I spoke with Judy Cornish about dementia behaviors, and Barbara Karnes about hospice. I mean, Barbara Karnes, how could you not love Barbara Karnes? Allison Applebaum and PK Beville. And during covid, Leeza Gibbons has Lisa’s Care Connection, and she had offered a journaling group. And I journaled the entire time my mother was with us. I journaled every single night. I wrote down how I felt, what happened that day. It was almost a way of dealing with what was happening without having to leave my house. And I’ve never looked at them, but I have every single day. So Leeza offered this journaling class, and I asked her to be on the podcast and she agreed, which to pop-culture me, 13-year-old me, watching Entertainment Tonight was beyond. So, that was great. And I’m very fortunate because we have bonus episodes with Anne. We do policy episodes.
So to have Howard Gleckman on and talk about policy every year is just a dream for me. And, it’s so interesting to speak to people because they’re so forthcoming and they want to share their expertise to help other caregivers. And I think that goes all the way back to the, do people leave after they’re done caregiving, or do they continue on? I think there are those people that just are like, yep, whatever you need. And that’s really big. I think it’s really cool when people put themselves out there like that.
Arnott: We also wanted to ask how working on the podcast has changed your own attitudes toward aging and receiving care if you should ever need it.
Corcoran: Well, I have my will done if that’s what you’re asking, and my powers of attorney are in place. So that it’s opened my eyes to these are the conversations you have to have. We might not like them. We don’t have to enjoy them, but we have to do them because I don’t want my children to be scrambling. And I also don’t know if I’d want my children take care of me. Isn’t that interesting? Because of everything that goes into it. And I say that, but I don’t know what the future will hold. I have no idea. But I will definitely, they will know what my wishes are. They will know the lines in the sand, if you will, of when it’s enough and not to have guilt and how I don’t want them to have any guilt over what they do, those types of things. It’s that undercurrent of caregiving that we’re all left with—the guilt and the overwhelm, and those feelings of, did I do enough? So I have a completely different perspective, and I tell everybody in my life and anybody that I speak to: Have these conversations. There’s plenty of ways and organizations. There’s Five Wishes. There’s, all of these things now that you can fill out that can help you, that can prompt you, that can help you think about what you want. And to say, “I want water and antibiotics is not enough.” Like you have to have these conversations with your people as uncomfortable as it is. You have to do it for them and for you.
Benz: Well, Rosanne, this has been a wonderful conversation. Thank you so much for being with us today to share your insights.
Corcoran: Oh my goodness. Thank you for having me. It’s been a true pleasure. I can’t thank you enough.
Arnott: Thanks again, Rosanne.
Benz: Thank you for joining us on The Long View. If you could please take a moment to subscribe to and rate the podcast on Apple, Spotify, or wherever you get your podcasts. You can follow me on social media @Christine_Benz on X. Or at Christine Benz on LinkedIn.
Arnott: And at Amy Arnott on LinkedIn.
Benz: George Castady is our engineer for the podcast and Kari Greczek produces the show notes each week. Finally, we’d love to get your feedback. If you have a comment or a guest idea, please email us at thelongview@morningstar.com. Until next time, thanks for joining us.
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