Latest / The Deciding Factor by Edward Jones / Finding Grace in Caring for Aging Parents with Dr. Barry Jacobs
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- speaker-0: It was really difficult watching a man you grow up with who speaker-1: Yeah. speaker-0: It was incredibly strong throughout his life. Yeah. speaker-2: Yeah. speaker-0: very difficult watching him need as much care as he needed. Yeah. It was very tough feeling like I could not allow myself to go through that emotionally because I needed to take care of him at that time. Yeah. And I needed to make plans. speaker-1: For some people, it starts with a phone call. A stranger's voice tells you that your parent is in the hospital. And in an instant, the caregiving roles begin to reverse. Today, tens of millions of Americans provide unpaid care for an adult loved one, often a family member. Welcome to the Deciding Factor, where we explore life's pivotal moments and how we make good decisions when it matters most. I'm behavioral scientist Zirak Khan. On this episode, we're looking at the practical and emotional realities of becoming a caregiver. Our expert guest is clinical psychologist Dr. Barry Jacobs, who literally wrote the book on this topic. But first, I'm sitting down with Marcus Morrow. Marcus is a Navy veteran, a seasoned business strategist, and an entrepreneur. But he faced one of his biggest challenges when his grandfather, the proud, independent man who raised him, began to need Marcus's care. Marcus, thanks so much for joining me here. Marcus, let's start with your grandfather who raised you in Beckley, West Virginia. speaker-0: Yeah, his given name was Alfonso Mara, no middle name. And growing up I called him Papa. And he called me either Mark or mostly he'd just call me boy. He'd yell down and say, Hey boy, come on up here. He was born in nineteen thirty two. so he was pretty old as I was born. I think he was forty nine. So Great man. He raised me pretty much most of my life. he was a miner for a coal miner. We grew up in West Virginia and he was born in a little unincorporated town called MacAlpin. speaker-1: What was he like as a caretaker for you when you were growing up? speaker-0: Yeah, he was loving. he was kind of like growing up with somebody who didn't lose their sense of childhood at times. Yeah, he was very fun. He liked comics. That was something we both shared. I think he was well known around town 'cause he was always friendly and he sang at all the churches. Mm-hmm. So he was pretty active for most of my childhood growing up. speaker-1: And what was it like as you were, you're in high school, you're making decisions about what you're gonna do next. I remember at one point you telling me that in in Beckley, basically your height almost determined your future and it was like if you were sh short enough, you went to the mines and if you were tall enough you went to the military. speaker-0: I enlisted in the military. It was nineteen ninety nine. Nine eleven happened. I got deployed out for l more than a year and as I came home I realized he had been struggling a lot to just do some basic things in town, even just down to the point of grocery shopping. Mm-hmm. he was having difficulties remembering things and making very simple trips. So Right around that time I realized he needed more medicine and more medical care. so I kind of influenced him to make sure he was keeping up on his appointments and medical medications that he needed. speaker-1: How did you do that influencing? speaker-0: He was stubborn. Mm-hmm. He was a stubborn man. So we had a good enough relationship though. I'd come home and I was like, Hey, you need to go take that medicine. Yeah. And he was like, I don't want to take that thing. Those doctors don't know what they're talking about. And I was like, Well, if you don't take it, you're gonna be sitting around here all day not feeling good. Right. And he had a way about him being like, Fine, give me the thing. Mm-hmm. speaker-1: And at what point did you actually start to think of yourself as a caregiver? speaker-0: Yeah, I think it was about three years into the military. Okay. And I realized I needed to take my leave to go home. and at the time I was going home just trying to help keep up the house, and keep things around him that made life easier for him. So it was those years where I would come home and I'd just go straight to Lowe's and start figuring out what he needed from everything, even just light bulbs that he no longer could reach and couldn't get on a step stool to go change them. Yeah. He started having more financial problems. And I knew it was because I wasn't home. I think a lot of times living by yourself at that age, particularly in a remote area, he really struggled with getting caught up in scams. He was making choices that felt odd to me. And as I asked him, he was kind of vague about what the details were. So he was like, I don't know. But the guy came to the door and he said that this is going to work and it's going to be better for my home. And he showed me on paper. And that started with a car first. And it was something like a 14% APR. And I was kind of like, Granddad, you need to sell this car and get into a better deal. Yeah. And he agreed. And we kind of started from that point of me needing to be more involved in his financial decisions and his budgeting. Yeah. I did my time in the military. I got out around 2007. And it was then that he really started struggling. As he declined, I started spending a lot more time there. it was tough because I was working through college. Yeah. and taking a full load. But I would say the perfect storm was probably around 2008. really us it was really kind of a time where he got into really deep financial trouble. He took out a loan against this home that was around seventy thousand dollars. When I asked where the money was going, he really couldn't tell me. Mm-hmm. It was really difficult. I really put a lot of money out of my own pocket into trying to solve a lot of his problems. but they piled up really quickly. For me, it was a lot of resentment and it it really it really took a toll on our relationship because I was at a point where I was working quite a bit, trying to go to school. And trying to find enough money to help him solve a lot of his problems. speaker-1: So maybe tell me a little bit about what that kind of final stage of his life was like. speaker-0: Yeah. I think for him, when we had to move him to hospice, I think was one of the toughest times. I really stepped up the time that I spent with him. Going into the last stages of his life, I think we both emotionally had to process what was happening. I was thinking of him dying with dignity and the least amount of pain as possible. Yeah. It was really difficult watching a man you grow up with who Yeah. It was incredibly strong throughout his life. Yeah. Very difficult watching him need as much care as he needed. Yeah. It was very tough feeling like I could not allow myself to go through that emotionally because I needed to take care of him at that time. Yeah. And I needed to make plans. Yeah. I came back to work right at the beginning or late March, because I needed to come back for a little bit. I'm alone on a work trip by myself and I get the phone call and thankfully my brother was on his way. Yeah. And we spent that time together and as I went home, I prepared for his funeral. Yeah. his funeral and preparing for that is interesting as a caretaker because you understand that this responsibility, I don't I tend to call it a burden. Yeah. But it wasn't a burden. It was a responsibility I took on. speaker-1: When you look back on the role that you played here over so many years, right? I mean, yeah. Him aging, like he he goes through so many phases of this and then you're growing up through this. I mean, it started when you were nineteen, right? what are the things that you are most kind of proud of yourself for? The way that you handled something or the decisions that you made? speaker-0: I think I'm most proud that through those years I never abandoned him. I never abandoned the relationship. I never I never gave up. I'd say I'm most proud of the fact that I cherished our relationship. When he died I left nothing unsaid. I knew he loved me. Yeah. And he knew I him. speaker-1: Joining me now to offer guidance to caregivers is Dr. Barry Jacobs, a clinical psychologist, family therapist, author, and leading expert on this topic, whose latest book is called the AARP Caregiver Answer Book. Barry, thank you for being here. speaker-2: my pleasure. Thanks for having me, Zarok. speaker-1: So Barry, you're the author of the AERP Caregiver Answer book. What was the genesis of this and what are some of the questions in here that you answer? speaker-2: so I'm the co-author with my wife, Julie Mayer. And if I left that out, I would never hear the end of it. So thank you. But the the book is nearly 150 questions and answers on all different aspects of family caregiving, everything from what what a caregiver is to self-care to dealing with families to dealing with how to communicate with doctors, how to partner with social service professionals, how to how to manage finances, how to how to find a nursing home. it it's really the idea is it's it's a it's a resource for caregivers on a on a wide range of of of questions that they're likely to encounter. speaker-1: So to kick off this conversation, Barry, I wanna get your reaction to Marcus's story. What went through your mind as you listened to that? speaker-2: many, many things jumped out. so for instance, the the suddenness of it, and and and what often comes is this this major surprise for folks that even though we know that the our grandparents, for instance, are gonna get older, we somehow live with this illusion that they're gonna they're gonna live hail and hardy until the day that they die, or that maybe we don't even imagine them them dying. And so we don't prepare. so in my life and the lives of many of the the th the clients I've worked with, it it it it's like this thunderstruck moment for them where suddenly someone that that they really care about is is is not okay. And and their life is changing very, very rapidly in ways that they they have no idea and they're dealing with all sorts of uncertainty. And so Marcus's story certainly illustrated that. and then for him it was 21 years of slow adaptation to to changing conditions and being a very good problem solver along the way, which is one of the other things I I took from from his story. He became very adept at handling lots of different responsibilities, things that he probably never imagined he would have to handle. But there was always this this this this strong foundation of love between them and and even more than love, trust, that they knew each other and they trusted one another. I I think Marcus at some point says, you know, you know, you have to understand the people you're dealing with. And I think that's that's true for all of us in life. I think it's especially true in caregiving for an older adult. How do we didn't know who they are? what what really makes them tick? What how how do you appeal to them? to e accept change, to adapt to diminishment, unfortunately. but to do it in a way with a lot of grace and to accept help graciously. Yeah. And and he did a phenomenal job of that. And I think his story really illustrates that very powerfully. speaker-1: Yeah, it jumps out to me like the this this point that you're pulling out of it's not just one problem or one task that you are performing or a problem that you're solving when we think about caregiving. It's myriad, you know? And the skills that are required are are myriad. What should people anticipate as they're moving into a caregiving role? speaker-2: What I I tell people is that this is a learning process. And so you have to give yourself grace throughout. There there's this series of stages here. People step into the role, they have to learn what the role is, they have to learn the lay of the land. they have to then adapt to to to the circumstances and develop a plan for how they're going to really be as good a caregiver as they can be and balance that with the rest of of of their life. And most of us have multiple Roles and multiple responsibilities and we have to figure out a way to balance it all. No one just drops everything else and then just becomes a caregiver twenty-four-seven. It's it's a role in conjunction with many other roles. Something like 85% of of caregivers will will tell you that caregiving is stressful and and about a forty percent of those of folks will tell you it's highly stressful. And when people are doing this over long periods of time and caregiving is not usually an endeavor we we engage in for weeks and months. It's usually months and years. And so you have long stretches of of high stress. And that that takes its toll. But and then but people get locked into this mindset of I have to get things done. Here's a list of things I need to do every day. Here's a person I'm focused on. And and unfortunately they tend to neglect some of their own needs. And then that makes them more prone to burning out. speaker-1: I want to stay with this point for just a moment because you you use this phrase that I really like of, you know, give yourself some grace. You know, you're embarking on a on a learning journey. How would you coach me on this? speaker-2: Well, what I would say to them first and foremost is because this is a learning process, you you're gonna make mistakes. What I try to do is help people understand that the that that pressure that that they're feeling is normal. Mm-hmm. Making mistakes is normal. And then the regrets and guilt that come with it, unfortunately, is also normal. but as part of this normal process, I I keep saying to them, you're gonna get better at this, you're gonna learn more, you're gonna get more adept, you're gonna get more flexible. And you're gonna mass you're gonna have a sense of mastery about this over time, but it's not gonna happen right away. It's just gonna take time. speaker-1: Let's talk about the word caregiver for a minute. Caregivers can be sons, daughters, spouses, grandchildren. I've heard you say that it's important to call yourself a caregiver, to kind of assume that as an identity. Why do you recommend that? speaker-2: When people call themselves a caregiver, when they identify themselves as such, they're much more likely to avail themselves of the available supports that exist in almost every community in America now, as well as reach out to other family members for help with caregiving. Conversely, when people don't identify themselves as caregivers, they're more likely to think that this is just a normal family role that they should do on their own. And as a consequence of that, they may not be able to sustain themselves. as well over time during caregiving without burning out. speaker-1: Yeah, I think we see this in behavioral science where, when somebody internalizes something as an identity, they're just more engaged with it. Right. and and so to your point, they they seek out, the resources that are going to be required. They are more likely to perform, the behaviors associated with this thing. And I do wonder to what extent somebody struggles to take on the kind of identity or to consider themselves a caregiver, because so many caregivers kind of stumble into the role almost, right? By necessity or something happening. And you mentioned earlier this deer in the headlights moment that strikes a lot of families or caregivers and people who, you know, aren't prepared or families who've never had a conversation about it. What are the kinds of things that people should be doing when they are healthy to be better prepared for that moment? speaker-2: all of us should be have conversations with our parents as they age, long before their parents need help. Yeah. And and those conversations should should be about how would their parents prefer to live as they get older. Yeah. There's certain things that they should sh the adult child should be talking about with them throughout that throughout as early on as possible. So one of them is to talk about housing. You know, mom and dad, as you get older Where do you prefer to live? And mom and dad will say, Well, we've been living here for 30 years already. In a in a in a in a box and I'm not leaving. but that can be completely impractical if it's a multi-story home and people can't do steps after a while. And it just doesn't make sense to to to have a big yard to take care of, etc. Another is financial status. because adult children and their parents often don't talk about the the parents. financial status. they could in in some ways they're they're more likely to talk about anything and everything, including sex, than they are to talk about about financial status. and I I was in this position with my mother and stepfather. I had no idea what their financial status was. They were living on in a nice community in Florida. I thought everything was great until it wasn't great, until they had really run out of money. Yeah. And that really caught me unawares. And then you know the third the third is really How they view, how they really view the idea of becoming more dependent over time. I mean, older adults in general, everyone is proud. Everyone wants to remain self-reliant. We live in a culture which places tremendous emphasis on v being our own person and being an in an individual. and yet over time, almost universally. we become depend more dependent on other people. What's that going to be like for them? Are they going to be able to accept that? speaker-1: I think the one thing that caregivers struggle with, and certainly this was present in Marcus's story, is that their relatives can be resistant to accepting help. Do you see this? speaker-2: it's this is very common th that an older adult doesn't want to accept help because it feels d demeaning to them. And again, this idea that there's gonna be some role reversal and the the parent is going to be treated like a child and the child's gonna now be the parent is utterly offensive to them. Mm-hmm. So I I talk with adult children about how they have to be extremely sensitive to their their their parents sense of pride and And they have to appeal to that sense of pride whenever possible and really put themselves forward, not as I'm running, I'm gonna take over your life. Don't worry, I'm I'm in charge now. Yeah. That that doesn't work, but more I wanna support you the so that you can live the very best you can as you prefer. speaker-1: Barry, we've talked about the importance of self-care as a caregiver. And when I think about caregiving, the conversations that I've had with folks who've served as caregivers, a word that comes to mind is is coping. Like how can you actually do that self-care? There's all of the logistical aspects of it, you know, you're navigating appointments and medications and l you know, physical logistical things. And then there's this huge, typically like emotional kind of burden that comes with it as well. And so, you may be feeling frustrated, you may be feeling sadness, you may be feeling overwhelmed. how do people cope with all of that? What are some of the strategies that are effective and maybe some of the things that they should avoid? speaker-2: there's more and more research to to show that even short respite, even someone taking an hour for themselves, really helps caregivers cope. when ideally caregivers have a weekend off or have a two week vacation some point during the year and having another family member come in and perhaps stay with a person they're caring for, that's great. But even that short respite can can rejuvenate them in a manner which enables them to keep going to look after our own needs, even in small ways, makes a big, big difference. And I just say finally, I I often talk with caregivers about I say to them when I talk about the F-word and they look at me like, what are we about to bring up? Yeah. And I say, what do you do for fun? Mm-hmm. And most a lot of times caregivers look at me and they say, It's been so long since I've had fun, I don't even know what I do for fun anymore. Yeah. And then I say, Well what do you what did you used to do for fun? And is there a way to incorporate some of those things back into your life? Because they're gonna be important source of of replenishment for you because whatever is fun helps us cope. speaker-1: I want to stay with this theme for just a minute of, you know, it is a scenario in which the person is at a high risk of of burnout. What are some of the signs that somebody should be watching for, whether they are a caregiver or whether they're in the support network of a caregiver, that that person may be at risk of experiencing burnout? And what should that person consider doing at that point? speaker-2: major hallmark is exhaustion, just a sense of fatigue. No matter how much sleep I get, I I I just am exhausted. I have this kind of world weariness that I I can't shake. And sometimes unfortunately the fatigue of just just working too hard at a high str highly stressful job is compounded by poor sleep. So the poor sleep becomes another component of burnout. with poor sleep and fatigue Often comes irritability, talking more sharply, having less patience than one would ordinarily have. One of the other signs, you know, kind of a numbing of feelings, like I'm not gonna allow myself to feel anything. I'm just gonna go through the motions of this because I have to get this done. And finally, you know, people just just they get to this place where they they just can't can't go on. They they just they they they get up and they have this sense of dread every day. I I cannot get through another day of doing this. I can't pull myself through another week of this, another month of this. and and they're just running on fumes. speaker-1: You talked about the importance of having a support network as a caregiver. And oftentimes that support network might include other family members. but while it's a support network, sometimes it's also another source of conflict, right? And not everybody in the family is gonna agree about everything. And so is this something that you observe and how do caregivers navigate that successfully? speaker-2: I think it's one of the biggest challenges of caregiving. It's one of the main reasons why why people who are caregivers seek psychotherapy or seek some sort of consultation because there is family conflict. I work with family th families, particularly adult sibling groups. I I I I've done a lot, I just met last week with with with three brothers who who are not I wouldn't say they're in a high degree of conflict, but they don't agree about what's going on with their dad. Yeah. And so the first thing I worked on with them is How do we develop consensus about your parents' condition? and what do what do we do to to to what sources of information do we need to help bring the three of you a little closer together so that you're more on the same page? So form a consensus becomes actually the most essential thing to do to to to help family members work together. speaker-1: You've talked about the importance of a plan and having a plan in place and you've described the contours of that. One of the specific ones that I want to dig into a little bit more is is finances. It's obviously something that's not going to cure a disease or turn back time, but it feels like it's something that kind of broadens or closes the aperture of what options you might be able to to pursue. And I'm curious the role that finances plays in this, as you've observed. speaker-2: finances equals resources, re equals flexibility, equals options. finances matters enormously. when families l lack finances, then they have to make a lot more the family members have to sacrifice a lot a lot more of their own time and energy rather than perhaps hire help or or consider a supportive living environment. so it it just it just makes caregiving more complicated and it just takes a greater toll on on the caregivers, I think. some families have the privilege of of having those those financial resources available and others don't. but those for those who do to you know they I or those who who plan ahead to to marshal those finances it I I think caregiving will go easier for them. I I mean for folks for the seven per seven percent of Americans who have long term care insurance, I I I I tip my hat to them because they I think that's very if they can afford it, it's a very prudent thing to do because it will offer them enormous supports at the time if and when th those supports are needed. Yeah. speaker-1: Well, along these lines of looking down the road and taking a longer term point of view, we've we've talked in depth about some of the challenges that a caregiver might face. And I think that's makes sense because, you know, these are the things that are top of mind for people, especially if they're thrown into that situation. But in the longer term, how do caregivers tend to reflect back on that role that they played for somebody that they cared for? Is there a positive element to this as well? speaker-2: So immediately after caregiving ends, the person you're caring for dies. there is a tremendous sense of relief. And that it's almost immediately followed by this big wave of guilt, my God, how could I feel, how could I feel relieved? It's almost as if I wished the person I was caring for to die. When in fact that's not the case. It's just that after doing really arduous work for a long time, to suddenly not have to do it. Is a relief. Yeah. To suddenly feel freer in your life is is a shock and it's a relief. And I hasten to tell now former caregivers that if you feel relieved, you don't have to feel guilty. the longer view, and this is folks, and and I w in in my work, I will work with caregivers in therapy, often for a couple of years. prior to the death of the person they're caring for. And then usually at least a year afterwards. And sometimes even I'll be in touch with them less frequently several years afterwards. And what they often say is is that caregiving was extremely hard. They it was harder than they thought it was going to be, but that they were glad that they did it and that if they could go back in a in a time machine and be be offered the same choice being caregiver, they would still make the choice to be a caregiver because it was so important to them. that they feel a sense of having accomplished something very, very important. Even if they hated it while they while doing it, this was a good thing to do. speaker-1: Barry, thank you so much for joining us. speaker-2: My pleasure. Thanks for having me, Sirac. speaker-1: Becoming a caregiver is a transition that often creeps up on you one favor at a time. As a behavioral scientist, here are three things that I would keep in mind. The first is to recognize it as a role. It's not just a series of favors. Caregiving begins gradually: a ride to an appointment, medication reminders, paying bills, and eventually what began as a few favors becomes an ongoing responsibility. The research that compares caregivers who felt that they had a choice in the role with those who felt that they had little choice finds that that perception matters. Caregivers who feel trapped generally experience greater distress. And even when becoming involved is unavoidable, you can still preserve choices within that role. So, secondly, define that job and its boundaries. You can commit to making sure that somebody receives care without committing to personally delivering every part of it. Build a care team. Not just a list of people who've offered to help. Call me if you need anything isn't specific enough to produce dependable support. Instead, assign named responsibilities. One person manages appointments, somebody else manages groceries, a neighbor is the emergency contact. Be explicit about what you can do, what you can't, and what would require additional help. A boundary doesn't mean that you don't care. It helps make that care sustainable. And finally, expect ambivalence and watch your own well-being. You may feel a mix of emotions at any given time. Love can coexist with resentment, with exhaustion, with relief, with anger. These feelings are normal responses to conflicting realities, and they're not evidence that you don't care. Remember that the caregiver's well-being is part of the care arrangement. If the arrangement is damaging the person providing the care, it's becoming unsustainable. So pay attention to sustained sleep loss, social withdrawal, or feelings of hopelessness. Those are all signals that the care system needs to change. I'm Zarak Khan. Thanks for tuning into The Deciding Factor.