The Invisible Load of the Sandwich Generation: Caregiving Stress and Strategies

Caring for both aging parents and growing children can feel like being stuck in a sandwich — squeezed from both sides. In this episode of The Savvy Patient, cohosts Dr. Gillian Goddard and Erin Stein discuss the reality of navigating midlife while stuck in the “sandwich” phase—simultaneously caring for aging parents and raising growing children or adolescents. We explore how this dual responsibility creates intense pressure from both sides, disproportionately placing an invisible load of caregiving, stress, and labor on women. The conversation dives into the emotional and physical toll of this phase, offering validation along with practical strategies to manage responsibilities, alleviate stress, and navigate the emotional strain.

References:

Gillian mentions the podcast This is So Awkward with Dr. Cara Natterson and Vanessa Kroll Bennet, https://lessawkward.com/podcast-this-is-so-awkward-2/

We take a moment to remind you that while this is a medical discussion, it is not providing a diagnosis or treatment or any medical advice. The only way to get a diagnosis, treatment or medical advice for your particular condition is through a discussion with your doctor.

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Visit www.thesavvypatient.com/podcast for episode transcripts.

Watch full podcast episodes @TheSavvyPatient on Youtube.com.

Get your copy of The Hormone Loop by Dr. Gillian Goddard wherever books are sold.

This episode was produced and edited by Erin Stein. Music: “All We Live For (instrumental)” by Wolfclub licensed through Audiio.com. Intro and outro edited, and video created, by Ian Mayer. The Savvy Patient logo by Amanda Spielman.

TRANSCRIPT

Gillian Goddard: Hello and welcome to The Savvy Patient.

Erin Stein: Welcome! Welcome to this exciting episode about being in the sandwich.

Gillian Goddard: The sandwich.

Erin Stein: It's not a sandwich generation; it's a sandwich time of life.

Gillian Goddard: Yeah. It doesn't last forever. It just feels like it does.

Erin Stein: Yeah. It's not just the sandwich. It's like someone's sitting on the sandwich and you're in the middle.

Gillian Goddard: It's among the more stressful sandwiches.

Erin Stein: And maybe by the end of this we'll have a better name for this other than sandwich, because what we're talking about is the fact that we are now in midlife and along with all of that fun physical stuff that we talk about in so many other episodes, we are now probably potentially caring for older adults in our lives and younger people who may or may not be adults.

Gillian Goddard: Who may kind of be adults and who may think they're adults but not necessarily actually like adults. Adolescents.

Erin Stein: Correct, correct. So, this is what is called stress.

Gillian Goddard: Yeah, yes, yes.

Erin Stein: And mostly for women. Mostly women are dealing with this.

Gillian Goddard: This is one of those invisible labor topics, and women tend to carry the invisible load in all different stages of life.

Erin Stein: Mm-hmm.

Gillian Goddard: But this time is one that I think people find particularly stressful because they kind of feel like it's coming from both sides in many cases.

Erin Stein: Well, it is. It actually is coming from both sides.

Gillian Goddard: Yes. It doesn't just feel like it.

Erin Stein: In so many ways, psychologically, in your relationships, in the position you have in that relationship and it's medical, financial, it's personality clashes.

Gillian Goddard: It's all of it.

Erin Stein: Feelings of responsibility and yeah, it's everything all at once and, maybe slightly less so for children, but no one actually talks you through any of the stuff required for caregiving for the older people in your life because it is not just a simple making sure they eat some food or whatever. There's so much paperwork. Legal things to know, scheduling, who's available, who can be there, knowing how the system works, hospital, rehab, doctors, medications, the personality.

Gillian Goddard: Yes, yes. And the psychology of caring for a parent about whom you might not only have warm and fuzzy feelings for, for example.

Erin Stein: I don't think there's any scenario that's easy. 

Gillian Goddard: No.

Erin Stein: Like maybe you are super close to your parent, and you love them so much and you already have a great intimate relationship, but then you're going to be really upset if they're going through a medical emergency.

Gillian Goddard: Right. Grieving and loss.

Erin Stein: Helping them might not be the problem. Just watching them deal with it might be the problem. Or you don't have a great relationship, and you don't want to abandon them, but you also are not feeling particularly favorable toward this person.

Gillian Goddard: Yes.

Erin Stein: Or they might be super proud and independent and really not admit that they need help, and they might make it very difficult to help them.

Gillian Goddard: All of those things can be true.

Erin Stein: All these things.

Gillian Goddard: Both in dealing with older people and with younger people.

Erin Stein: That's true.

Gillian Goddard: Teenagers and young adult children, they have a lot going on.

Erin Stein: Mm-hmm. They do.

Gillian Goddard: They tend to have ambivalent feelings about things like. Separating from their family of origin. They often are doing new things and feel stressed and insecure. And I will tell you from personal experience, it doesn't always make them their best selves or the most fun to be around.

Erin Stein: I'm willing to say that about myself. Being a teenager was hard.

Gillian Goddard: Yeah. I also think you're just navigating systems that are new to you. You know, I was sitting with my almost nineteen-year-old son the other day trying to help him understand how to make a college schedule. And there's so many things about making a college schedule that are completely new. Like the fact that you don't just pick a class, you have to pick a section of the class. And it's not just the lecture that you're signing up for, you're signing up for the recitation session and the lab that goes with it. And you have to figure out how all those pieces fit together. And by the way when you go to register, actually, you may not be able to get half those classes anyway. And I think that that's one example of things that happen with kids, but there's scenarios that are equally complex and frustrating and new on the older adult end of the sandwich.

Erin Stein: Yes. And whether you are someone dealing with this or not, I think most of us will have to in some form. Although not everyone and some people might simply not.

Gillian Goddard: True, true. That's more of an option oftentimes when you come from a larger family of origin.

Erin Stein: When there are multiple children who could be helping the parents, it's usually not everyone, although it can be, but it's usually one person taking on the majority of it. And sometimes that's just because they're there, they're the closest, or they can get the parent to do what they need to do, you know, personality wise, or some other reason that does make sense, but that doesn't make it any easier for that person to do it all.

Gillian Goddard: Right, exactly. And quite frankly, when you're dealing with an older adult and a lot of siblings, it can be helpful for the doctors and other medical professionals taking care of that person to have a point person that they go to. And so, from a practical point of view, if you're one of four kids, it's hard as a medical practitioner to have the same conversation about your loved one with all four of those people individually. It does make sense to have a point person for some things, but that doesn't mean it has to be the same point person for everything.

Erin Stein: Right. And yes, there's also some stuff about who that point person is and whether they really are objective or not.

Gillian Goddard: Yeah.

Erin Stein: It tends to be the oldest child, you know, it is a stereotype, but they are the oldest. They are generally given more responsibility, even just to babysit your younger siblings. That's more responsibility than the other kids are given. So, the oldest tends to be dealing with more. I'm an only child, so for my mom, I'm all that there is. I have a wonderful stepbrother, so he and I will deal with my father and his mother together. But, you know, there's limited people available. And then when there are people who don't have children like my husband and I…

Gillian Goddard: Yes, this is something you have been dealing with.

Erin Stein: We don’t have children so we're trying to curry some favor with our niece and some cousins to be like, “hey, don't you want to take care of us when we're old?” There so there are things to think about for that too. But my husband and I are responsible for lots of people in our lives, not just parents—aunts and uncles—and you might not realize that until suddenly someone says, “hey, I realized I never had kids. Do you guys want to be my executor?” And you're like, “okay.” And sometimes it is just dealing with their estate after they pass. But in a lot of cases, it's dealing with a lot more before then. If someone has a medical condition and you’re power of attorney, there's a lot of decisions to be made. So, I don't even know where to start with this, but I guess I would start with if you know there's someone in your life that you will probably be involved in taking care of, you should get some paperwork done.

Gillian Goddard: Yes. This is true again on both ends of the sandwich.

Erin Stein: Yes.

Gillian Goddard: You need some of the same paperwork for the elderly person and for the adolescent, actually.

Erin Stein: Yes. But for adults, which might be a child or a parent, you need power of attorney. Period. End of story. Here's the other thing. A lot of couples have each other. You know, like my husband will be my power of attorney and I will be his power attorney for now. 

Gillian Goddard: Yeah, that doesn't work for forever.

Erin Stein: It does not work for forever. At some point, we will need to pick a younger person to be our power of attorney.

Gillian Goddard: Yes. Yes.

Erin Stein: No one likes to hear this, but when you get old enough, you don't want to rely on the other person because you might both be going through a medical thing at the same time or the other person might be grieving so much that they shouldn't have to deal with these things. And you can also kind of, like, stagger—you can say this person and if they're unavailable, then this person. So, you can also list multiple parties if you want to have your spouse first, if they're available, and then if not, you know, your nephew your child.

Gillian Goddard: Yep. Yep.

Erin Stein: If you think you will ever have to make decisions for someone, you need to have this piece of paper because you will need to show it repeatedly to people. Or you will not be told anything at the hospital, you will not be able to make any decisions for them at the hospital, or deal with their finances for them, access their money for them, health insurance, anything.

Gillian Goddard: Yes. So, the way it works in most states at the hospital is that if you do not have a power of attorney—or in New York State, it's called a healthcare proxy, it's a slightly different thing—if you do not have that person designated the next of kin, whoever that person is determined to be, it's typically a spouse or child, spouse is first, child is next, sibling is after that, the next of kin can make some medical decisions, but not all medical decisions. So, for example, in New York State, the next of kin cannot withdraw care in a terminal case, but someone with the healthcare proxy or power of attorney can. And that is important.

Erin Stein: My husband took care of his aunt's affairs and is taking care of his uncle's affairs and he's their nephew. It's not an obvious relation. So, when she would go into the hospital, he would need to show the power of attorney just to get them to talk to him. It is really helpful to have that piece of paper, and you really need it. He was not able to do anything without it. No one would talk to him in multiple scenarios, in multiple situations without being shown that piece of paper.

Gillian Goddard: That's a hundred percent true.

Erin Stein: And her husband… 

Gillian Goddard: …who would have been her next of kin.

Erin Stein: …who would have been her next of kin, was not in a state to do any of these things or make any of these decisions. So, it really is super, super important.

Gillian Goddard: Exactly. You need the power of attorney for your child basically the minute they turn eighteen. So, they can be a high school student living in your house, but they are eighteen years old, and that is when you need that power of attorney, when they are eighteen years old. Not when they go to college, when they are eighteen years old, whenever that happens to be. When they are seventeen and three hundred and sixty-four days, you have rights to make decisions about their care. When they are eighteen you have limited rights as their parent. Happens overnight.

Erin Stein: So weird. These arbitrary ages that we've chosen. So that's one piece of paper, right? That's really important and I would argue in some cases the most important piece of paper, just to get in the door and be able to start figuring things out. But then no one likes to do it, nobody wants to do it, but you need to force your parents to think about their estate and their planning and what they want to happen or not happen. And this has two sides. This there's the medical side, but there's also the financial side. And these are both equally important and equally complicated.

Gillian Goddard: Yes.

Erin Stein: If your parents have no paperwork, nothing, that's a problem.

Gillian Goddard: Yes. It's also really important to keep your paperwork updated, particularly if you move across state lines. If you go through your whole estate with your attorney, you should make sure if you move to another state that you update that information because different things are required in different states, and I have known people who have had huge problems accessing things like bank accounts because the legal paperwork was not updated with a move across state lines.

Erin Stein: That is interesting. 

Gillian Goddard: Yeah. It can be a whole mess.

Erin Stein: And I wonder how that would work if someone had two homes.

Gillian Goddard: Mm. Yes, power of attorney is state specific and so you actually need power of attorney in different states. This comes up with college students, too. You have to make sure you have power of attorney in your home state and in the state where they're in school. And if they then go to school like grad school or something and they're in a different state, you have to update that.

Erin Stein: Alright, so just make your kids sign fifty sheets of paper, one for each state. Ha!

Gillian Goddard: Yeah. And of course, they don't understand why because they are, of course, trying to be independent. “Why do I need this?” And explaining to them that, it's not that you can make all their decisions for them for forever. It's that, in an emergency situation where they can't make decisions themselves… but you're talking about a child, an adult type person, who actually thinks that they're going to live forever. 

Erin Stein: Yeah. We tend to think of estate planning as a rich person thing. and sure, it is much more complicated for rich people. But even if you're not rich, the basic assets that people have: a home, a car, whatever's in your home, whatever's money is in the bank. That actually can be very annoying to deal with after you die if you have no paperwork.

Gillian Goddard: Mm-hmm. Mm-hmm. That's correct.

Erin Stein: It can be so much simpler for your family if you do some basic paperwork. 

Gillian Goddard: Yes, that is correct.

Erin Stein: A will is sort of the most basic thing you can do, and depending on what you have, a trust might make a lot more sense to put things in.

Gillian Goddard: That's correct.

Erin Stein: Again, it does depend on the state you live in and how things are handled for estates, check on what needs to be put in probate or not. Some states actually have laws that if there is nothing, then everything goes to the spouse and then the children split three ways or, you know, they have some rules laid out and some don't. So, it's important to look into these details and then put at least a basic document together because also if there are multiple siblings you don't want to be fighting over stuff. You want to know if someone said, I really want this heirloom necklace to go to this person, if you don't have that written in a will or a trust somewhere, that person may never get it. People don't like to think about being dead. I get it. But for everyone else afterward, you need to leave some instructions behind.

Gillian Goddard: Yes, you're doing your loved ones a favor.

Erin Stein: It is doing them a big favor, but also, it's to make sure that what you want to happen happens.

Gillian Goddard: Yeah. Yeah.

Erin Stein: Maybe you're a person like, I'm dead, I literally don't care what happens afterward. Bless you, I think you're a rare individual. Most people have some thoughts, and those thoughts need to be put down. You don't want people fighting over stuff. You want to be clear.

Gillian Goddard: No, and people are not their best selves when they're grieving. It tends not to bring out the best in people when they're grieving. Yep.

Erin Stein: That's correct. Everyone's dealing with emotions. So, I have a parent who is picking out music for their funeral. I have no decisions to make whatsoever. I appreciate that very much. I will know exactly what they want to happen. And you don't need to have that level of planning done or specificity, but some basics. 

Gillian Goddard: I can guess which parent that is.

Erin Stein: I think you can guess, yes. This person has done some amazing estate planning and I appreciate it very, very much. Even with my husband, there's been certain types of accounts you need to have your spouse designated as…what is it called? 

Gillian Goddard: Beneficiary.

Erin Stein: It's not just a beneficiary. There's something more specific than that. I think it's POD. I think it's pay on death. Like you can list someone, automatically, they get this money. So, you don't have to do any shenanigans and paperwork and stuff. That's on an investment account specifically. So beneficiary is one thing, but I think they still have to do some legwork. But POD is very simple and straightforward and there should be no issues.

Gillian Goddard: Right. Right. And so, like bank accounts and things like that.

Erin Stein: Even someone who had all this stuff extremely organized, who could afford to have a lawyer, who had caregivers helping her with her finances, all this stuff. Still, we had to get multiple copies of death certificates. We had to file them with multiple places. The bank was a pain in the ass. Here's the other thing, your power of attorney expires once they die.

Gillian Goddard: Yes, on death. Yes.

Erin Stein: So even though we had power of attorney, we couldn't look at the bank account. Even though we still have power of attorney for the other person on the bank account. I'm telling you, banks are the worst. So, the other thing that a lot of people do is they just get their parents to put them on their bank account.

Gillian Goddard: Yeah.

Erin Stein: If you are on the bank account, then you have a lot less trouble with banks. So, paperwork, funeral planning, or at least just, do you want to be buried or do you want to be cremated? Just that decision. 

Gillian Goddard: Yeah, the basics. Yeah.

Erin Stein: Very basics. If they have a particular church or religious ceremony they want to do.

Gillian Goddard: Institution, yes.

Erin Stein: Or do they not want anything? Or they're like, no, I don't want people crying and sitting around. Everyone has different feelings and a lot of people haven't thought about it. You may be asking them to think about it for the first time, so don't expect an answer immediately when you first bring this up.

Gillian Goddard: Mm-hmm. Yeah, as is true of a lot of these things, with kids, these conversations with parents are not one and done. It's a series of conversations in many cases.

Erin Stein: Yes. Yes. And probably with parents, reluctant parents, it might be helpful to tell them some stories about some people you know who went through some horrible experiences. And so, they should not make you go through that horrible experience.

Gillian Goddard: They love you. They should not want to put you through that.

Erin Stein: They should be more organized. Yes. The other thing I wanted to say, in a lot of marriages that have been around for a long, long time and started a long, long time ago, one spouse handles the financials and the other one does not, to the point where they have no idea what Is in the bank, how much money they have, whether they own their house or not. They know nothing, they pay zero bills, they don't have any passwords for anything. And that is a really dangerous situation. If something were to happen to the person who has all of that, the other one is screwed.

Gillian Goddard: Yes. Like to the point where they can't access cash sometimes. Yeah.

Erin Stein: It's going to take a while to sort all that out. So, encourage your parents, bring that up and say, at least the both of you have to have all of these things.

Gillian Goddard: Yes. Yes.

Erin Stein: You need to make a record. And there is actually this really helpful thing that is usually called like My Death Book or something like that. And it lists all of these things. Questions about what you want, what kind of service, what kind of planning, what you want done with your body. But then it also lists all of this financial stuff. What's your password for this? What's your password for that? What are all the accounts you have? Like at least someone should know what accounts you have where. We've made it so complicated as human beings. We have so many accounts, so many logins, so many credit cards and mortgages and car payments, it's a lot of information and it's going to take a little bit of time, but it's worth putting it all down somewhere. And then you do have to update it.

Gillian Goddard: Yep, you do.

Erin Stein: As you are changing your password for the eight millionth time. But try and get your parents to do that. With some people it will take longer to get them to do it. The other thing is when they have a medical emergency—a stroke or a heart attack or a car accident or whatever—you need to know what someone wants. If they're not able to make their own decisions and they're in the hospital. And that is another not fun conversation.

Gillian Goddard: With parents or with kids.

Erin Stein: With either of these categories of people, but it's worth having the conversation. And then there is another piece of paper you can fill out. There's a DNR, there's a do not resuscitate form. 

Gillian Goddard: Yes, more appropriate for the parents than for the kids.

Erin Stein: More appropriate for the older generation. But it usually has more things on it, like do you want this kind of medical intervention, or this or that? Or you know, it's not just yes or no. There are different scenarios that you can think about and decide what you want. So, it is very helpful to at least that conversation with someone but even better to have their form and their wishes noted.

Gillian Goddard: Because in some states, even if you have that conversation, if they have not filled out the paperwork, you may be limited as to what you can do.

Erin Stein: If someone does have a DNR, you may need to make sure that if they go into the hospital with an emergency, that the hospital has it.

Gillian Goddard:  You one hundred percent have to do that.

Erin Stein: Even if they've been to this hospital before, the doctor is in this hospital, it should be in their file. It may not be.

Gillian Goddard: That's correct. And in fact, what is supposed to happen is that when someone is admitted to the hospital, they are supposed to ask if that is the case. But as you can imagine, especially in an emergency situation, that does not always happen. You can actually sign a DNR in the hospital. For example, you go into the hospital, and you were a fairly functional 75-year-old and then whatever has happened is catastrophic, you the patient can or the healthcare power of attorney can make that designation during a hospital admission. 

Erin Stein: Things to think about.

Gillian Goddard: And you can revoke it. They're not permanent. If you sign a DNR, it's not like you can't change your mind later.

Erin Stein: That's important. I think that's important to say.

Gillian Goddard: Yeah. Yep.

Erin Stein: The other thing I was going to say is if you have presumably an older person who goes in for something like a stroke, let's say, that there will be some ongoing care and recovery, right? Regardless of what the event is, it's always best to have someone at the hospital with them to find out what's really going on, to talk to different nurses and doctors…

Gillian Goddard: Who all come in at different times during the course of the day.

Erin Stein: There are also patient advocates that you can ask to speak to, but there's usually some phone tag getting that person on the phone, but trying to advocate for your loved one is best done in person if at all possible. Now, that's not always possible. So you can call on the phone. You need to make sure you are authorized to get information. So, either they need to tell them, or you have your power of attorney you send them. But I would check in regularly. At least daily.

Gillian Goddard: At least daily, if not more.

Erin Stein: Because when something like that happens, medically stuff is changing every day with their condition and what's happening, and you want to know what's happening. And then when they are making some sort of progress and they're going to be discharged, you want to know are they going to a rehab center to spend more time rehabilitating? Are they expecting them to go home? And if so, in what shape?

Gillian Goddard: Yes.

Erin Stein: Is there anyone at home? You need to ask all of these questions. They are not going to proactively say these things to you, which is counterintuitive perhaps a little bit, but you need to be not obnoxious, but like, “I need to understand what's happening, I need to make sure things are set up appropriately.”

Gillian Goddard: This is a scenario where you also want to be in touch with the hospital social worker because the social worker assigned to your loved one can help with setting things up at home or in like the rehab facility that they're going to later. The social worker is the person who can help understand what types of benefits your loved one may have as far as in home care, and other types of benefits that can come to them in appropriate scenarios. So, the social worker is your friend.

Erin Stein: And when they go to rehab. First of all, you may have opinions about whether they should go to rehab or should come home because you know who is or who is not at home to help with whatever ongoing care and rehabilitation.

Gillian Goddard: And yet, that is actually not what makes the determination about whether someone can go to rehab or not. The physical therapist is actually the person who makes the determination about whether a person is going to rehab or is going home. And it's based on very specific milestones and abilities to do very specific things that have nothing to do with what your situation is or what that person's situation is at home.

Erin Stein: Yes. The best thing that Gillian ever told me was that there is a meeting amongst the doctors and the therapists once a week and you can ask to be a part of that meeting.

Gillian Goddard: You can ask to have a family meeting anytime; you don't have to even wait. You can ask to have a family meeting at any time, and that family meeting, depending on the situation, may involve the patient or may not involve the patient, depending on whether the patient themselves is able to make some of these decisions. But the family members can be involved even if the patient can make their own medical decisions. And it can involve the social worker, the doctors, the physical therapists, all the people who have been involved in caring for your loved one so that decisions can be made around a safe discharge.

Erin Stein: Yes. And so, they are having a meeting once a week. You can ask when it is. You can ask to be included. You can ask to be on the phone if you're not there in person. Thankfully, Gillian had told me about that, so I knew to ask for that. So, we were able to get a loved one sent to a rehabilitation facility first before coming home because we were able to express that it would not be safe for them to go home in their current condition, and that was super important. So that is something very good to know, because everyone at the hospital is very busy and they come and go in shifts and there's different people doing different things all the time. Some of these things are very siloed who can do what. It is totally fine to ask questions. Ask questions. There are supposed to be patient advocates or social workers that you can speak to specifically if you have concerns like that. You know, they were actually very helpful in this situation where we're like, he can't go home yet. How do we make sure he goes somewhere first and improves his condition more before going home? So, the other thing I meant to mention as far as paperwork and knowing things, is know what your parents or loved one’s insurance is.

Gillian Goddard: In the case of many, many people, this will be Medicare with some sort of supplementary plan, but not always.

Erin Stein: But not always and there may be a discussion of getting someone on Medicaid if necessary.

Gillian Goddard: Mm-hmm. And you can have both. You can have both Medicare and Medicaid. So, you can have Medicare as your primary and then Medicaid as your secondary.

Erin Stein: Yes.

Gillian Goddard: Medicare being healthcare for people over age sixty-five and people who have disabilities. Medicare is a federal program. It's at the country level. Medicaid is for low-income people and is administered at the state level. And so, every state has their own rules and regulations regarding Medicaid and who may be eligible. But just because you have Medicare does not mean you are not also eligible for Medicaid if you are low income.

Erin Stein: Yes. However, for many people, they don't need Medicaid until they have an emergency or a catastrophic event.

Gillian Goddard: Yeah. Yeah.

Erin Stein: And then they need long term care and that will burn through their assets very quickly. And then they need to be on Medicaid. And in some cases, they need to be on Medicaid ASAP. So that is a whole other nightmare, basically. Not to be too much of a downer, but it is complicated. You have to know the rules. There are different things to do with some assets count, some assets don't, depending on the state and how you qualify. It can be quite burdensome.

Gillian Goddard: Yes.

Erin Stein: And if you are able, there are people you can hire to help you navigate that process, but of course, not everyone can afford that. So, if you think someone might be needing more assistance in the not-so-distant future look ahead and get a handle on what is required for Medicaid. The other thing is if someone does need to go into an assisted living facility, some of them take Medicaid and some don't. 

Gillian Goddard: Mm-hmm. And many of the ones that take Medicaid only have a certain number of Medicaid beds.

Erin Stein: There are some that will take either, but there are only a certain number of beds that can qualify. But there are also places that take both, and once you get in, even if you go in on Medicare and switch to Medicaid as you run down your finances, some places will guarantee you a bed there that you can stay there.

Gillian Goddard: Yes, to stay. Yep, that's exactly correct.

Erin Stein: So that is the best-case scenario in my opinion. So, all of these things are super fun to know about and deal with.

Gillian Goddard: And we've just told you all this information that you might need to know or think about in caring for loved ones. And it's a lot. It's a lot.

Erin Stein: This was a lot and we didn't even get to, if they come home and you're taking care of them at home.

Gillian Goddard: We've just said that loved ones often are the ones taking on the burden. This is typically unpaid work. You're not getting paid to track these things down. You're not getting paid to be in the hospital to advocate for your loved one. This is all unpaid and informal work. But think about this. Ninety percent of in-home care needs—we were just about to transition to this—90% of in-home care needs for adults are met by unpaid family members. That is a huge burden. A huge burden. And this often can lead to what is called caregiver stress. And you're like, well, of course there's caregiver stress, like, duh. But caregiver stress actually is a medical term or a psychological term that has some meaning. And people who are most likely to suffer from caregiver stress are women, people who are low income, people who have no choice about providing the care. It's not like they willingly have taken on the care of a loved one. It's been sort of foisted upon them. People who live with the person who they are caring for. So, if you have a parent or other older relative living in your home. People who already have, like, if you're someone who's already anxious or depressed, this can exacerbate those symptoms. And people who spend more hours providing care. So, there's actually one of the most depressing studies I have ever read in my entire life that this data comes from. It is a study from JAMA, the Journal of the American Medical Association and it was published in 2014, and it is called Caregiver Burden, a clinical review. It really just outlines how difficult this kind of care can be for the caregiver. Not for the care receiver, for the caregiver.

Erin Stein: Think how many people at a hospital replace a one-person in-home caregiver. Just think about that.

Gillian Goddard: Yeah. Yeah. A nurse, a patient care associate, a doctor, transport individuals, like the list goes on and on. Yes. PT people, OT people…

Erin Stein: Different therapists. Someone else is making the food and cleaning. This is the sandwich, right? Because maybe you really want to take care of your loved one and you are an amazing person and you want them to have loving, wonderful care at home, but it doesn't mean you don't have anything else to do anymore. You still need to pay the bills and clean the house and make all the food and you're probably making special food for your loved one and dealing with medication and maybe you have to do things for them on a certain schedule so you're not sleeping regularly because you have to interrupt your sleep and go do something for them.

Gillian Goddard: Or they're up in the middle of the night because people who are sick don't always follow a normal sleeping pattern. And, by the way, your kids probably are still around too.

Erin Stein: And then there's the kids! We're assuming someone is requiring a decent amount of care, right? Which happens to a lot of us. And even if you want nothing more than to do that for this person, it's a literally full-time twenty-four seven job. It's pretty difficult for one person in any capacity to do it.

Gillian Goddard: I would say it's pretty impossible.

Erin Stein: Even if maybe you're able to bring in a nurse into the home or a caregiver… 

Gillian Goddard: Or a home health aide.

Erin Stein: …somebody to help spell you, you're still responsible for everything. You still need to make sure you trust that person and that they're doing a good job and that your loved one is comfortable with them. There are still so many decisions, so many things to do, but you still have the rest of your life that already existed before this.

Gillian Goddard: Yeah. So, there are some evidence-based interventions that have been shown to reduce caregiver stress. And it's worth knowing what those things are, so file these away and hopefully make the most of them if you find yourself in this situation. The first is to be a functional part of the care team, meaning you are helping to make decisions about this person's care. You are voicing your opinion about whether an intervention is an intervention that is realistic to implement in this particular situation. This is things like does the person come home or do they go to rehab? Being a part of the team that is making those decisions allows you as the caregiver to have some agency over what's going on. Engaging in self-care. And I'm not talking about like taking a bubble bath. I'm saying do everything possible to get as much sleep as you need, to eat, it might not always be possible but do your best to prioritize getting your basic needs met. Attend to your own health. Go to your own doctor's appointments. Go to your own therapy appointments to make sure that you're taking care of yourself. There are some ways to use technology to take on some of the burden. These are things like alert systems, bed alert systems or fall alert systems that can make it possible to safely leave an elderly person in it even just in another room, believe it or not.

Erin Stein: Yeah.

Gillian Goddard: And there are resources to lessen caregiver burden that are covered by insurance. And these are some of the things that Erin mentioned. Respite care, home health aides, visiting nurses. These are all services that insurance often pays for or pays part of that can make your job as a caregiver easier and you should use them.

Erin Stein: Yes.

Gillian Goddard: Even if the loved one that you are caring for says they do not want anyone else caring for them. I hear this so often. Somebody's caring for their mother or for their spouse, and I recommend that they take advantage of having an aide come in for, you know, several hours a week to provide the caregiver with some time to attend to other Their needs and they will respond, well, so and so doesn't want anyone else taking care of them. And my response to that is, okay, well, then they should allow you to bring this person in because if they don't, you won't be taking care of them because you will end up in a situation where you cannot take care of them. 

Erin Stein: Yeah. I was literally going to say the response to that is, this is me taking care of you.

Gillian Goddard: Mm-hmm. Mm-hmm. Yes, absolutely.

Erin Stein: Yeah, and we don't talk about this a lot, but it's really hard on the spouse of the caregiver too, because the spouse can help to a certain extent, but can't do usually all the stuff you know, physical intimate stuff maybe that would be weird, and only one person has power of attorney, not the spouse. So, you know, when my husband was dealing with stuff with his family, how could I help? What can I research for you? What can I look up? What can I do? You know, when there were some things, he could give me to do, or even just talking things over. Am I making the right decision? Am I forgetting anything? And, you know, when I'm going through stuff, my husband will ask, what do you need? And I'm like, I need to just order a pizza for dinner. I need to just not decide what we're eating, you decide or order a pizza. And it's really hard to watch your spouse going through it, because also you have a relationship with this person you're caring for and it's, you know, it's hard for you too. It's sad and you're looking at your own future, and you want to do what's best for them and you want to know you're making the right decision, that is gut wrenching sometimes. And you need support and it doesn't mean doing all the things they're doing but supporting them doing those things. 

Gillian Goddard: Absolutely.

Erin Stein: That might mean taking on some more house cleaning duties or some more dinner making duties. These things don't always fall on gender lines, but they most often do. And that invisible labor can't continue when there's more invisible labor added.

Gillian Goddard: And you know what? I don't think this has to be limited to a spouse either. You know, we've been talking about adolescent or young adult children who maybe also be living in your home. These are capable people too. And I would argue that if you're in a situation where you've got teenage or older kids at home, and there is an increased burden, those are people who can and should be helping relieve some of that burden. And I think that the key there is to set some boundaries with your kids to make sure that the work that you are doing is not invisible to them, to make sure that they are aware of it, and to ask for everyone's help and this goes against what we say about how do you help someone, but in the case of teenagers and spouses, you may need to tell them what you need them to do for you.

Erin Stein: Yes. I also personally believe that teenagers should be encouraged to spend time with their elders, you know? If nothing else, just sit with them and ask them questions and learn about your family history, but just keep them company. You know, teenagers can do that, and I think should.

Gillian Goddard: Yes. Also don't forget they make great tech support. My kids were always charged with helping my mother-in-law figure out how to use her iPad.

Erin Stein: Yep, yep. So, let's talk about those kids because you may be dealing with everything we just talked about, and you might still be working, and you might have a kid or multiple children and or pets. We didn't even get into dealing with pets.

Gillian Goddard: Yeah, they tend to complain less than teenagers do, those pets. 

Erin Stein: I know, but that's sad for them.

Gillian Goddard: I know. Teens at home still need parenting. P.S. if you're looking for excellent resources around parenting teen and tweens and young adult kids. I can highly recommend This Is So Awkward, which is a wonderful resource. It's a podcast and a website put together by Dr. Cara Natterson and Vanessa Kroll Bennett, and they just offer a wealth of information for dealing with kids, basically from the beginning of puberty all the way through college. And that's really the group we're you know we're talking about here. I think it's okay to be open with kids and you don't want to blame them for things and you want to be very clear about that. But I think it's okay to be open with kids in this age group, especially the teens and young adults about money stressors and time stressors and ways in which practically they may need to be aware of those things and change their behavior around those things. There are big kids who still expect you as a parent to be a short order cook and a maid and these are life skills and if they haven't learned them yet, now is the time. Because they can do these things and they should be learning to do these things and they can contribute to the household. In our house actually have responsibilities, not chores, responsibilities.

Erin Stein: Mm-hmm.

Gillian Goddard: They're not chores because somebody has to do them. And everyone in the house—we have a large household; there's six people living here—and everyone needs to contribute to keep that household running smoothly. And your responsibilities are the way you contribute to our household. Our kids have been setting the table since they were six. My older teenagers are responsible for things like driving siblings places, cleaning up the kitchen after dinner, making food sometimes, doing their own…

Erin Stein: Laundry.

Gillian Goddard: Laundry. Yes, exactly. All these things are things that teens and certainly young adults are completely capable of and can help relieve some stress in these times.

Erin Stein: If you're a parent and you have not taught your children these things, I'm gonna judge you. Like, they're going to leave and go out into the world and they're going to need some basic life skills, and it is your job to teach them these skills.

Gillian Goddard: You know you can learn all of those things by watching a video on YouTube.

Erin Stein: Yes, well then tell them to watch it and do it. I understand people want to spoil them and take care of them and that's how some people show love, but you have to prepare them to go live on their own.

Gillian Goddard: Correct, correct, correct. And this is a great time to do it. I also think, and this can involve everyone in the household, finding time for device-free connection is really, really important. It's important for the kids, it's important for us as their parents, and it's important for other adults who are living in your house too. So, in our house, we have Forced Family Funtime. And I cannot take credit for this, including the very alliterative name. I got the idea from a blogger named Rebecca Fike. In their house, they have the added alliteration of their last name. So, they have Fike Forced Family Funtime. Our last name is Goddard. It doesn't work quite as well. Forced family fun time is two hours on Sunday afternoon from four to six when everyone is supposed to be off their personal devices and doing things with someone else in the family. Now, that may mean and has meant a lot in the last six weeks or so, that a group of people are all sitting together watching a World Cup match, and that counts because you're engaged in that event and watching that game with the other people. It is a bonding experience. But we also have done things like play Uno. And sometimes we all just sit in the same room and read. But you have to have that time available. And if you have an elderly person in your house, this is something that they can often be involved in too. they're probably relieved that there are no devices involved. And I think that this is this is really important. But the last thing I would say is with kids in this age range, one of the most important things you can do is pick your battles, especially if your attention is being drawn in lots of different directions, like you're helping to care for a relative. Pick your battles. Don't spend your time with your teenager talking about their, I don't know, bad hair or their ugly t-shirt. think long and hard about the hills you want to die on and the ones that you do not and save your energy.

Erin Stein: Because you're being squished from all sides.

Gillian Goddard: You're being squished. Yes. So, save your energy for things that matter and try not to get too worked up about, you know, hair that will grow back and won't always be pink. 

Erin Stein: Or dirty.

Gillian Goddard: Or dirty or dirty. T shirts that are ugly, ripped, or otherwise not what you would choose.

Erin Stein: You're just not into fashion, Gillian. They're probably very fashionable. The kids are experimenting, right? And so as long as it's not inappropriate for the setting…

Gillian Goddard: They are and they need room, yes, and not dangerous.

Erin Stein: I meant fashion specifically.

Gillian Goddard: Yes. And most fashion isn't dangerous, I suppose.

Erin Stein: Not usually, not usually. I suppose there are some extreme avant-garde examples. The bottom line is we're going through a lot in this time of life, and then we're going through extra a lot, and then extra, extra a lot. And so, I hope this episode didn't totally depress you. I have two main messages. One is no one teaches you this shit. Okay? So that doesn't sound like a message, but it is. It means talk to your friends, do some reading,

Gillian Goddard: Educate yourself and be proactive on both fronts.

Erin Stein: Educate yourself. Yes, this is where I'm from traditional publishing, but

Gillian Goddard: Ha

Erin Stein: there are some really great self-published things that people who went through this with their parents have then put together everything they figured out, and they learned into a book. And so sometimes something like that can be super helpful. I'm not the only one who has gone through this in my friend circle now that we're all getting to a certain age and our parents are getting to a certain age. And so just talking to each other. I mean, it is helpful to be able to vent to my friends, but also, I can tell them things like the family meeting that Gillian told me about. I had another friend who had to deal with the Medicaid thing, so I got some information from that. But basically, don't expect to be able to magically figure it out overnight. It's very complicated. There are laws, there's insurance policies, there's medical policies. There's just a lot going on on top of people's personalities and preferences. Really, there should be a class for all adults about this crap, but no one is teaching it.

Gillian Goddard: Yep. Yep.

Erin Stein: My second message is for everyone in all parts of the sandwich: allow other people to help you.

Gillian Goddard: Yes. The people in your house, the people outside of your house.

Erin Stein: There may be things you like doing for yourself or for your family and you don't have time to do that right now. Let someone else do that. Let someone else help.

Gillian Goddard: If the neighbors want to set up a meal train, by golly, let them come.

Erin Stein: Yes, and this is the message for your parents. At some point you're going to need to let someone help. You let the doctors help. You let the people at the hospital help. Why can't I be one of the people helping? Because the patient should be focusing on their health and getting better. They should let you help with all that other stuff that they would normally do, but they can't do right now. And that message applies to all of us, whether you're the caregiver, whether you're the patient, whether you're the child, if you're used to your mom doing something, maybe let someone else do it. And, or do it yourself.

Gillian Goddard: And or know that your mom might have some information about, say, how to put together a college schedule that you could benefit from.

Erin Stein: Maybe. Maybe.

Gillian Goddard: Goes in every direction.

Erin Stein: Yeah, Gillian was asking me if I remembered how we registered for classes and I did not. I don't remember doing it by phone.

Gillian Goddard: And yes, we did it by phone. We used a touchtone system where you dialed numbers on the phone for different classes. Can you believe that? I remember it distinctly. I can picture my phone.

Erin Stein: Because I was a nerd and I was getting two bachelor's degrees at the same time, after the first semester, I was like, I'm going to take a million more classes every semester. And so, I had a piece of paper that I know I hand wrote all the classes on and I had to take it to the dean's office and get the dean to sign it to give me permission to register for that many classes.

Gillian Goddard: I don't think I ever did that.

Erin Stein: Pretty sure I just turned in that piece of paper.

Gillian Goddard: No. I sat with my touch tone phone on Intouch dialing in all the different course numbers and section numbers.

Erin Stein: Maybe I did, but I have zero memory of that. Mm-hmm.

Gillian Goddard: Life before the internet as we know it.

Erin Stein: We had some internet, but it was not used for these types of things.

Gillian Goddard: Pine email.

Erin Stein: It was used for AOL dial-up chat rooms.

Gillian Goddard: Yeah. Yep.

Erin Stein: And not much else at the time.

Gillian Goddard: We hope that we have given you a lot of practical information and not been too overwhelming or depressing. You will get through it. You will not be in the sandwich for forever.

Erin Stein: You will. It is a lot of practical and logistical stuff, but it is emotional. And so, it is important, like Gillian said, to take care of yourself, do therapy if you need to, to make the time if you want to do yoga or meditation or running, but to give yourself space to recover emotionally now and then. It's okay to say hey instead of forced family fun time it's forced cuddle with mom time I need all of you to sit on the couch with me and watch a movie. That's fine.

Gillian Goddard: Yeah.

Erin Stein: In some ways these can be really beautiful moments you're having with your family, but they're also probably tinged with a lot of other emotions, and you want to feel like you're doing what you need to do, but also you are one human being. And you need to give yourself some permission to be human.

Gillian Goddard: And a lot of grace.

Erin Stein: A lot of grace. All the grace. I didn't come up with anything better than sandwich, but I still don't like it. It's a pressed sandwich. It's a panini.

Erin Stein: That's a good place to end.

Gillian Goddard: I think so.