Caregiver Burnout

Hello, everybody. Welcome to Health Chatter. And today's topic is caregiving, but more specifically caregiver burnout, which is really unfortunately kind of a hot topic as it relates to caregiving in general. We've got two great guests with us. Get to them in a second. I'd like to thank my, our crew, Clarence and my crew. To help us get these shows out to you, the listening audience, Maddy Levine-Wolfe, Erin Collins, and Deondra Howard are our researchers that do great background research for all of our shows. Our production managers, Matthew Campbell, who gets these shows out to you in beautiful format to you, the listening audience. Our marketing person is Sheridan Nygard, who also helps with our research as well. My co-host for the show is Clarence Jones, who has much more experience doing these podcasts than I do. He's been a great, great colleague. And I thank you for all your great wisdom regarding these shows. We also have Dr. Barry Baines with us, who's our medical advisor on the show today. Human Partnership is our sponsor. They're a community health organization, that do wonderful things out in the community, health-related. recommend you listen to them or visit with them on your website at Huemanpartnership.org. Check us out at heal And if you love our shows, truly love our shows, we love to hear your feedback. So take a moment, leave us a review on your preferred podcast platform. whatever it may be. So thanks to all. And here we go. So today, Caregiver Burnout, we've got two great guests with us. Terri Havareth, Dr. Terri Havareth is a clinical professor at the University of Minnesota. Soon, soon she's informed us that she's retiring. So to a certain extent, that's a loss, but on the other hand, congratulations, and we wish you only the best. She's internationally recognized expert in geratological nursing practice and education currently, and I'll put that in quotes, okay, currently is the associate director of the Clinical Science and Practice Corps for the Center for Healthy Aging and Innovation at the University of Minnesota. Prior to that, she was the founding director for the Family Caregiving Institute at UC. Davis out in California. So thank you for being with us. She's got a great passion for dealing with the frail and older people and family caregivers. And I can just tell this is going to be, we're going to get great words of wisdom from you. So thank you for being with us. Lisa Brown is also with us. Lisa's got her bachelor's degree in social work and a master's in social work from the University of Minnesota Duluth. for the past two decades, that's a long time actually, she has focused her career around older adults and their caregivers, working to keep people engaged in their community and trying to remain as independent as possible. And she has worked at, and Lyn Blomstedt is in St. Paul, correct? If I'm not, yeah, yeah. With the second campus up in Lionel Lakes, yep. Right, right, right. So I remember that. And she works there now. And thank you so much for both of you. I'm really looking forward to the insights that you provide us on caregiving and caregiving burnout. So, all right. This is what's really struck me. And all of us have been in the healthcare field a long, long time. And are we seeing the need for caregiving increase? Is it because, and if that's the case, what might it be from? Is it people are living longer? Is it they have more complicated diseases? What... Am I right in assuming that we're seeing more of that? And if so, why? Go ahead, Terry, take it away. All right. Well, I think it's a couple of things that are happening. One is we are living longer. Two, we're seeing the aging of the baby boomer generation, which is this huge expansion of the numbers of people, not just in the US, but across the globe that were born after World War II. And... that baby boomer generation didn't have as many children as they had siblings. And so we're seeing a huge increase in the number of older adults. I mean, for a while, 10,000 people were turning 65 every day. And so in 1950, you had a 30% chance of being a family caregiver. By 2030, you're gonna have a 3% chance, just because there's so many more older adults compared to... the younger people who are often their family caregivers. So what's your thought about this, Lisa? Do you have, I mean, you're like in the field working with these people. Have you seen this as well, that there seems to be more caregiving being provided? Yeah, I think that there is more caregiving provided. And I think... Some of that feels like it's just the desire of people to want to live in community and live at home for longer than they maybe would have in the past, in my experience. And some of the diagnoses I think are happening sooner than maybe they would have in the past. So we're getting better at diagnosing. And with that, it throws someone into that role of a caregiver sooner than they maybe would have been in the past. And because of that, I think that the the duration or the length of that caregiving actually is extended longer than it would have been, you know, a few decades ago. So. Yeah. Clarence. Well, first of all, let me thank both of you for being here. It was funny, I printed off the papers of the research that our researchers was doing, and I've never had one so thick as with this one. It was like, what? But anyway, thank you for that. I think I'm excited about this because I have been a caregiver of a caregiver. And I kind of use that term now because it was stressful for me. And I can only imagine. But doctor, I think when you mentioned 3% of us will be involved with caregiving, I think this is a topic that we have to discuss. So I just wanted to put that out there. I mean, I was like, when you say wow, I don't know if you heard me, but anyway, I know that this is a topic that we have to discuss. And so I just wanna thank both of you for being here. And I know that many of our listeners will be listening to what you have to say. I can't you stand? So let me throw this out. This is something else that kind of struck me when I was reading through some of this background. The difference between a professional caregiver And I'll just, for lack of a better title, a family caregiver. Like if all of a sudden somebody has, God forbid, you know, put in some kind of a chronic disease that they have to deal with, then all of a sudden there's almost an immediate burden that's put on some family member. So can you talk a little bit about the distinctions between professional and family caregiving? Go ahead, Lisa. Yeah. So with a professional caregiver, it's somebody who's paid to come into the home. They usually have some background training where they're equipped to do more of the hands-on care or the companion care. It's a time-limited amount of service. Usually they have a couple of hours, a few days a week that they're coming in and helping out with someone. Whereas for an informal or a family caregiver, it really can be 24-7. If it's a spouse or an adult child who's living with their parent, or even if the adult child isn't living with their parent, there's really just that constant kind of vigilance of thinking about and trying to be ahead of the curve and knowing what's coming next so that they can be prepared and really offer that care to the person that they care about all the time. And so, oftentimes I'll get calls from caregivers who have a new diagnosis and they don't even know where to turn next. And so they're thinking like, what do I even do? They're almost kind of frozen. Because I think with that diagnosis, oftentimes when they're thrown into that role of a caregiver, they're expected to be an expert right away, right? You have to understand everything about the diagnosis, what services and resources are available and how to best provide that care. So it's that really overwhelming sense for that family caregiver. Whereas that professional caregiver has that training and knows what to do when they step into that situation. You know, one of Terry, what do you think? Yeah, I was gonna say one of the things that is also happening in our healthcare system is that we're discharging patients home quicker and sicker, you know, patients who used to stay in the hospital for longer periods of time being cared for by professionals who've gone to school to learn how to, to provide that care are now getting discharged home. And we're asking family caregivers to not only take on very complex but to do so with very little training. Things that I went to nursing school to learn how to do, we asked family caregivers to do, and maybe we've given them a little bit of instruction and not given them an opportunity to practice doing that. And so they're very ill-prepared often to step into that role that is quite complicated. You know, it's interesting. You know, listeners have heard that, you know, I see knee patients after they've come out of knee surgery because I've had it done myself. And one of the things I tell the patient and also their significant other who they might or a friend or whoever might be in the room with them staying ahead of the pain. Okay, so, you know, that's one of the things I, you know, hi. And it's interesting because patients will say, you know, we've heard that, but how in the hell do you do it? And for somebody then who's gone through it, then you can give them that kind of advice. But otherwise it's kind of like they're lost. And that's just one little caregiving thing when you think about it. I mean, it's just amazing. And with all the news about overdose, A family caregivers, I think are often reluctant to treat pain adequately because they're afraid of getting their family member addicted or of something bad happening. And again, we don't give them good guidance. I think of the family caregiver as the invisible member of the healthcare team. They're absolutely essential, but we don't, as a healthcare team, we often... don't include them in the planning. And we also don't include them as a target of our interventions. That's why I think Lisa's role is so important because she's out there really working directly with family caregivers to help them in the role as it is unfolding. I think one of the challenges, I wanna talk about challenges of caregiving. Okay, because I think that that's one of the things that you were talking a little bit earlier, you were talking about the various things that they have to take on. One of the reasons I became so involved in this was I heard a story of a family that had a mother who had dementia and she was living with her daughter and she had a son, but she kept accusing her daughter of stealing her money. And she would tell her son that and the son would attack the daughter. I mean, it just got... I mean, I'm sitting here crying basically because I'm seeing this stuff that's going on with these families. I'm like, oh my goodness. And they never realized that it was dementia. It was a disease. I don't think we talk about that. In our community, when people get older, we assume they're gonna get grumpy. We just assume, you're just gonna get grumpy, okay? And so we accept that grumpiness, but we don't understand that it might be dementia. You know what I'm saying? So it's like, there's so much stuff that's not being discussed. And so I'm really glad that we're able to have this conversation. So let's talk about burnout now. I mean, we've kind of just touched on caregiving in general and there's a lot of it going on, but let's talk about professional burnout first. And then we'll talk maybe about family burnout because I have a feeling that there's some complimentary aspects. So professional burnout, I'm sure that both of you have either been, witnessed it yourself, or know people, your colleagues that have gone through it. So give us your sense of professional burnout and what's being done to identify it and help, in this case, the professional caregivers. So Lisa, why don't you go first? Sure, yeah, I've known many, I mean, I'm a social worker, so I've known many social workers and also nurses who have burnt out just because of generally the... the sense that there isn't a whole lot of funding to fund positions like mine. There are grants, there are organizations like ours that prioritize programs like ours to serve family caregivers, but overall kind of like how Terry was saying, that informal caregiver isn't always really viewed as a part of the care team or isn't prioritized in that role. One thing that to me has always been interesting is that they really are like a separate a totally separate piece of that person's care plan. And so, you know, to offer support to that family caregiver, there's fees, you know, it's not a part of the insurance program to really support those family caregivers. They're not the patients, so they don't get the same level of support in their role either. And so because of that, I think that the burden for them, when they finally do reach out to someone like me, they're usually pretty overwhelmed and stressed and riding that line of burning out, which as a practitioner is really heavy. And so to be able to have the ability for self-care as a professional is really important. And I feel fortunate where I work, there is a lot of emphasis on taking a step back and really examining whether I'm taking care of myself so that I can give back to others. But I don't know that is always a priority for. for everyone's work environment. And so, I think from a professional standpoint, unless you're taking that good time to really evaluate how you're feeling and how you're taking care of yourself, you really can't give of yourself to others. And that puts you in that position of really burning out. And so, particularly I think in the programs that I work with or the caregivers that I work with, we primarily work with folks who are providing care to someone who has dementia. And that can sometimes be anywhere from five to 10 to 20 year experience of journeying alongside that person and the infinite amount of losses that they're experiencing. And so really some of it too is providing training for those practitioners on what they need to be looking for in themselves for that burnout. So I don't know, Terry, what your experience has been, Yeah, I agree, Lisa. And I think in nursing, we see burnout when resources get more scarce and nurses are asked to do more with less. And I think the sense of burnout comes from not being able to provide the care that you would like to provide or that you think your patients need and deserve. And we saw burnout and... accelerate dramatically during the pandemic. And it has continued post pandemic to be concerning because we're seeing lots of nurses and other professionals opt out because the conditions have been very difficult. That those same conditions has made caregiving much more difficult for family members because a lot of what community supports are available dried up or became inaccessible because of the pandemic, because of sheltering at home. For those caregivers who maybe were getting help from other relatives, friends or neighbors, often they got isolated in order to protect both the caregiver and the older person from COVID. And so we've seen a really dramatic increase, I think, in caregivers who are feeling overburdened in the care that they're providing and... while some of the services are coming back online, it's not, we're not back to pre-pandemic levels. And we've also seen, because of the pandemic and the isolation, increased frailty among those older adults and their caregivers. And so it's been like the perfect storm to create conditions that really make it difficult to be a family caregiver right now. So my question to you is this, is that understand all these, I understand all of these issues. What kind of communication should we be providing to the community? I mean, we talked about the professional, but the community also needs to understand the issues that are going on. What kind of communications should we be sharing with the community about this issue? Yeah. I think- Oh, sorry, Terry. No, go ahead, Lisa. I was going to say one of the things that I think is a primary is just helping caregivers identify that they are a caregiver. So a lot of times people don't identify with that word. You know, they think, well, of course I'm going to do that. I'm his wife or I'm an adult child. So it's my role to take care of my parent, but not really identifying that they are a family caregiver now and what that means. And then also communicating that there is support available, that there are resources and programs and services that are available, not just to support the person who's receiving care, but also there are services and resources available to that person who is providing care as well. And how to plug them into those resources so that they don't feel quite so isolated or quite so overwhelmed or quite so alone, I think, are some of the big pieces that I've experienced in my. career is a big piece of how we can help start supporting and educating the community. Yeah, Terry. Yeah, Lisa, that was exactly what I was going to say as well is we need to identify caregivers, they need to see themselves that that's who they are, that's the role that they are engaging in. And I think in terms of the community, offering support is, of course, important. offering tangible support, something, you know, I will sit with your relative for two hours so you can go grocery shopping, so you can go for a walk. So offering really specific kinds of help, can I stop and pick up something from the grocery store or the drug store for you, I'm on my way. Stopping in just to check in and see how the person is doing that sort of ongoing support because caregivers are often isolated So having contact and having people who are willing to come in and actually do something can be really valuable. And particularly if it's a regularly occurring, I know every Tuesday I can go grocery shopping because my cousin's gonna come over and watch my mom. That sort of thing can really help with some of the predictability that helps ease burnout, I think for caregivers. Yeah. Barry. Yeah. So I sort of have a two part question or question and comment. So when I was as a family physician, when I was in practice, I don't, I don't remember very often when the issue where, you know, I was seeing a patient, let's say during a health maintenance exam. And I may have known about their family, but you know, it was rare that I would ask, so, you know, are you involved in caregiving for your elderly parents? And, you know, how's that going? You know, it just was not on the radar screen. And so my first, this is more of an informational plea for our listeners, is that I was always ready to be helpful if I knew. But if you don't know what you don't know, it's difficult to move that forward. And so, oftentimes waiting for the physician or nurse practitioner or the professional medical provider that you're seeing to sort of make the opening, put up the ante and make the opening bet on well, how are things going in this? I think it will be very important for people who are involved in caregiving to just put that on the table, just as part of, and to say, well, how are you doing? And just... You know, like matter of fact, even though people feel it's an obligation, oftentimes if you're a family member to do this, it does have consequences, you know, clearly down, down the road. So my first plea for people listening, like I say, I wish I knew then what I know now, but you know, let's just move ahead. But to really encourage people if they're involved in being a part of care of a parent, a cousin, a relative, a friend, whatever. to put that on the table. So that's that, okay, but now here's the question, okay, is so what's the path for a caregiver to get help? You know, moving ahead, and it might not even be because they're burned out, because obviously I always like, you know, prevention. I think everybody benefits if we could prevent that from happening. So can you share some of your wisdom and insight as to... how a caregiver can kind of be more, you know, proactive about how to deal with this. Because you already, you know, pointed out on the medical side, the quicker and sicker, so they're home. And then there's all the activities of daily living that oftentimes, you know, family caregivers get, you know, dressing, bathing, toilet, I mean, just a whole, you know, bunch of things, and they're not really prepared. And so you'd be, you're very reactive to what happens. And so is the phone call, oh, no. You know. So the prevention of it. But I have a job where I have my kids to take care of as well. So I'll kind of be quiet and listen because see what I missed. So it's really the prevention of it. How is it that professional care? I've kind of made this distinction. I don't know if it's appropriate or not. But it's professional caregiving. How is it that we can prevent burnout? And then family caregiving. How can we? prevent burnout. So Terry, why don't you address that from your perspective? Sure. Part of it in terms of resources, first of all, there aren't nearly enough. Let me just say that to begin with. But those that exist are often disease-based. So reaching out, for example, to the Alzheimer's Association, your local chapter, can be an avenue towards that. chronic lung disease, multiple sclerosis. So there are a number of organizations that specialize in the chronic conditions that often result in the need for a caregiver. That's a good point. Going there. You can reach out to your primary care provider and there's actually brand new changes to the Medicare regulations that allow physicians physician assistants, nurse practitioners, other professionals to build Medicare for offering instruction and services to family caregivers, even if those family caregivers are not Medicare beneficiaries. That happened January 1 of this year. And it's the first time ever that the Center for Medicare and Medicaid is providing reimbursement for services to non-Medicare beneficiaries. And it's an important start. It's not enough, but it's a really good start. Oftentimes there are also local organizations that you can access through your AAA, the Area Agency on Aging, that will be connected locally to what might be available in your particular zip code, for example. Lisa, I'm sure you have an inside track on Minnesota. You've got many of the ones that I was going to say. The local area agencies on aging are a great place to connect with to learn what services are available within your local area. And I think we're really fortunate in Minnesota to have a pretty tight network of providers who work together really well, even across the state. And in the state of Minnesota, we do have a group called the Care Caregiver Coalition, which are working together to really make sure that we're listening to providers from around the state, talk about where some areas of challenges might be in providing those resources to caregivers in their community, and also what's working really well for folks too, and making sure that we're connecting with caregivers. There are several caregiver providers here in the Twin Cities that are funded specifically to work with family caregivers. And so, um you know connecting with that local area agency on aging would be able to connect to any of those specific um programs but I think it's also important to talk about just the nuances of you know the differences in family caregiving too you know there are also sandwich generation caregivers who are providing care for a parent as well as maybe their children um there's grandparents who are taking care of grandchildren. And each of those kind of has that little nuance of what those needs are and what that burnout might look like and what the responsibilities are. And so it is making sure to connect to the proper caregiver provider to make sure that you're getting that care that's specific to your need and your situation. And like I said, I think we're really lucky in Minnesota that we have a lot of those providers. who can offer that kind of specialized care in making sure that caregivers are feeling supported, that they get the resources that would be helpful to them in their role. And also just to connect them with other caregivers who are going through similar situations. Sometimes that's one of the biggest pieces in making sure that a caregiver doesn't feel so alone or isolated is connecting them with other caregivers who have a shared experience so that they feel like they're developing community of care for themselves beyond what we can offer with the limited resources we do as providers. I also want to mention, excuse me, two other resources. One, AARP has developed actually quite a lot of resources for family caregivers and their website has, for example, very... Brief videos, I know because I was involved in making these videos, but how to do complex care activities, like if you have to do nebulizer treatment at home or if you're doing a complex wound care, even transferring somebody in and out of a car, in and out of bed. There are brief videos, like five minute videos that actually talk and show how you do those things. I also want to note for caregivers who are veterans or caring for a veteran. The VA has been much more proactive than our non-VA health system in developing resources for family caregivers. And I know that's true in the Twin City area as well, but through the VA, you may be eligible for additional support services if you're caring for a veteran or if you are a veteran. I would tell you- Those are all good thoughts. Let me, you know, I've got, We could do a bunch of shows on this. But one of the things that you've alluded to is cost. So I wonder, and correct me if I'm wrong, but I wonder whether or not we're seeing more family-oriented caregiving in the subsequent burnout because of the costs. Just the cost, so respond to that, I guess. Is that true, I guess? Yes, caregiving, the care of older adults, and we should probably be specific that that's what I mostly refer to, because that's what I know, knowing that families take care of people at all ages. But for older adults, the cost of their care is increasing. a lot of that is born by the family caregiver. And we see that both in direct out-of-pocket costs that caregivers pay to provide the care, to buy resources, to fix mom's house because for her to stay there, it needs some modification, but also indirectly, because it's not unusual for working caregivers, those who are caring for a family member and also holding down a job. to have negative impact on their work. We are seeing increased numbers leaving the workforce because of caregiving and also not people, the economic burden to society because productive workers are not as productive as they could be. So there are costs at many different levels for families to provide care. And it saves society money, right? When... when an older person is cared for at home, but it's not a freebie. We can't assume that it's always gonna pencil out to be the better economic option because there are impacts that ripple out through society. Yeah, Clarence. Yeah, we know that this is such a draining and emotional issue, but how do you recover from caregiving burnout. Because I think that, you know, once people hit that hit that particular barrier, just like I was talking about with the with the family before once you get that particular barrier, there's guilt, there's shame, there's all these other kinds of things that this is my mother and now I'm just like, I don't want to be bothered. You know, I mean, it's not that you don't want to be bothered, but you don't know what to do. So how do you how do you help people to recover from caregiver burnout? Yeah, some of the work that I do with caregivers is doing just that. It's connecting with them and talking with them one-on-one and helping sort through some of those feelings and those emotions and talking about different strategies to help minimize the risk for burnout moving forward. So it's talking through, you know, beyond what the resources are, how can we really build on the strengths that caregiver already has and then, help equip them to move forward. So they feel more confident and more comfortable in that role as a caregiver. So it's really building on those strengths and helping expand their toolkit of what they have so that they're not putting as much pressure on themselves to have to do it all on their own. And so, whether it's connecting them to other resources so that they can get someone into the house to help so that they're not having to do all the bathing on their own. connecting them to programs that might help them financially if they qualify for county funded programs or whatever it might be educating around that. It's also talking about the importance of them taking a break for themselves and how can they take that break. Connecting them to those resources so that they get some respite so they can still be their own person and connect with the people that are important in their life or connect spiritually through their faith community or whatever it might be that really helps them feel centered and like their own person outside of their role as a caregiver. So it's helping them look, I think, at the big picture. I always talk about a pie chart. What percentage of that pie chart do you identify as a caregiver and which part do you identify as your own self? And what would be the ideal for you? What do you want that pie chart to look like? And in order to get there, what things can we plug in to make sure that you can keep that balance in the way that you want it? And then setting up those boundaries. Moving forward, what are the things that you're okay with doing as a family caregiver? And what things aren't you okay with doing? And who can help hold you accountable? Where if you, I always use incontinence as an example. Some people will say, you know, once this person is incontinent, I'm not gonna be able to do that anymore. But slowly over time, you get one bout of incontinence and you're like, oh, that's okay. It was only one time, right? But slowly that one time becomes one time a day. And so how do we really help caregivers recognize like, this is a process where we need to really have those boundaries set for ourselves. And there's some fluidity in that, but how do we make sure if we're sliding in that direction, we stop and we take that step back and say, I need to check in with myself and see how this is going. And if it's not feeling comfortable to me. let's tap into those resources that we talked about during our meetings so that we can get things in place so it doesn't get to a point of burnout. Yeah, yeah. Barry. Yeah, so this is a question that I believe encompasses both professional caregivers and family caregivers. And it builds on Clarence question that he had for, again, how do you kind of recover from caregiver burnout? But before you... have to recover from it. Are there a handful of what I would call red flag signs that you are dealing with caregiver burnout, whether it be professional or family and they're, you know, I mean, it's somewhat different because of settings typically, but can you share your expertise on that? What are the, what are those red flags that, boy, if you're experiencing this, You are showing signs of caregiver burnout very obviously, and it's time to then, I guess, raise the- Raise the red flag. The white flag that I need help, I can't just put the spice in. Yeah, Terry. Yeah, the red flags that I've looked for and that appear in some of the research literature is when the caregiver feels like there are no more happy times. that there is no enjoyment in the care that they are providing, it's all drudgery. When the caregiver feels like they are the only one and nobody else can provide the care or nobody else is willing to provide the care, so that sense of feeling very isolated and that you're the only one can also be a red flag, any mental health indicators, increased depression, anxiety, suicidal ideation, those are of course very concerning and need to be addressed. And in the antidote, I think to some of this is finding meaning and finding enjoyment in the caregiving. And sometimes it's by taking the time to sit down and have a bowl of ice cream with your dad. And... and just stop for that moment and not be thinking about what else needs to happen. And when we can have some of those moments during the day that we realize I've just done a good thing or this is good in this moment, that can help us feel like we're doing a better job. When I was at UC Davis, I opened a clinic for family caregivers. And what was interesting to me is that many of the caregivers that I saw, they made one appointment and what they wanted to talk about is, these are the things that they were thinking and doing and was that okay? And if we can say, yes, you're doing the right thing, for a lot of caregivers, that was all they needed to know that, and I would say, it sounds like your instincts are spot on, trust them. Because... Family caregivers don't want to do any harm. And that's what they're afraid of, that I'm going to make a mistake that is going to do some harm. Other caregivers were facing really difficult ethical dilemmas. You know, a common one was, my dad's doctor says he's no longer able to live by himself. My dad says the only way he's leaving his home is feet first. Do I really have to move dad out of his home? And I think when we sit down with caregivers and talk about what are the real risks to safety and can they accept those risks on behalf of the older person's autonomy and quality of life, then we can come to solutions that feel better and don't feel like you're wrenching somebody out of their home against their will. But a lot of times the risks that we, as healthcare professionals see, are very unlikely. and or they're not preventable no matter where the person is because memory care is not a risk-free environment either. And when we actually disentangle the risks and understand that some are reasonable to accept on behalf of this older person's quality of life or their sense of autonomy, that can alleviate the caregiver that they're not endangering their family member and that they're not forcing their family member to do something that they don't wanna do. And so I think sometimes the burnout is fearing that I don't know what the right thing is to do or if you would, there's a lot of mess involved with that. Yeah, I would add a couple of red flags being physical health too, higher blood pressure, getting sick more often, so having a lowered immune system. I know from my perspective, a lot of caregivers who I talk with will say, I don't like the person that I'm becoming. I don't have the same patience level. I'm getting, I'm flying off the handle way more and I, that's not who I was. I don't like seeing that in myself. And so I think you're exactly right, Terry. What I see with a lot of caregivers is that need for validation and affirmation. that a lot of people call and they want to tell me about what they're doing, what their situation is, have somebody say, wow, you are doing so much. There is so much going on in your life right now, but I can tell that you're really doing the best that you can with the best intentions. And so that affirmation is sometimes what somebody needs just to feel like they can take a deep breath and be okay with that. And to hear, it's perfectly natural to get really frustrated with someone if they're not cooperating with you when you're providing that care. So yeah, I mean, there are red flags, but primarily what I hear from people when they come to me is I just don't like the situation I'm in and I feel like I can't do this anymore because I don't like the person that I'm becoming in this role. And how can we work through that so that they get to a point where they have that little boost of confidence and that. ability to feel like they can continue to go on in what they're doing. As far as for professionals, I think, you know, one of the things that I see as a big red flag is compassion fatigue. So getting to the point where you feel like, you know, you're dreading making that call back to that caregiver because you just don't know that you have it in you today to offer them the support that they need or you know, you start to feel just apathetic about everything. And that's translating to your home life as well as maybe your professional life. And so that to me is always a red flag when you start to hear people say like, I need a long vacation, I need a break, or I just, I'm dreading making those phone calls back. Can you do them for me today? So keeping a finger on the pulse of how your coworkers are doing and checking in with them and saying, You seem a little bit off today. I can tell that you're struggling with maybe some of the things you're hearing. How can I support you so that you can take a step back and take care of yourself? Yeah. You know, one of the things that's really struck me in this conversation or this chat is lifestyle change. The, and in many cases, it's the immediacy of the lifestyle change. somebody is diagnosed with Alzheimer's. And all of a sudden it kind of puts everybody in a kind of a tizzy on what to do, how to do it. You know, it's one thing on the patient side, it's another thing on the caregiver side, whether it be a family member or a professional. So lifestyle change is really big, I think. One thing I want to, I thought I would tell just a little sidebar story here. A very dear colleague of mine, and actually he was my doctoral advisor, came down with, and this was years ago, came down with early onset Alzheimer's. And he was a young man. And I remember distinctly going over to his to basically feed him. And she, on all the cabinets in the kitchen, they were labeled. They were labeled and some were locked. And I remember leaving the house with her and she just cried in my arms, just cried. And she said, you don't. understand and I didn't. I couldn't empathize. I could sympathize with just what I was seeing and what she was going through. The takeaway for our listening audience is be aware of that for people that you know and be around to provide support. Check in every once in a while. Hey, can I come over and help with something? Because I really do think that that's important. The other thing I thought I'd bring up and maybe you guys can respond to is long distance coordination. So, all right, so let's just say for instance, you know, a father is really sick. And one of them happens, one of the kids is here. The other one is in some other place in the United States. How do you kind of coordinate so that you decrease burden and you decrease stress. Yeah, do you face that or have you faced that, Lisa or Terri, have you seen that? Lisa, go ahead. Yeah, I mean, we experienced this in my own family. My mom was living here for her dad, she lives here in Minnesota. He was living in Arizona and some of her siblings were living in Colorado and there's five adult children, right? Right. We're all trying to coordinate who could take turns to go down and... take care of the things that he needed at the time. And yes, I think one of the things that some families do is even have a family meeting where they all get together and they have that person who's receiving the care involved if they're able to still make decisions for themselves and really hear what that person's goals are for their care and what they wanna see for the future. And then talking as a family. okay, how can we delegate this work in a way where we can meet those goals and everyone feels like they're able to accomplish what their task is? And then keeping that really open line of communication. I try to tell families that if you're going to share information with each other, try to share it with everyone at the same time in the same way so that people don't feel like they're being left out, right? Because that's how... Or you don't have to repeat the story 20 times. Yes, and that's how those... Friction develops and you get some maybe unsavory family dynamics that you wouldn't want to have. But really that clear, open communication, I think, with everyone is such a key piece of that distance caregiving. I think oftentimes the majority of the work will fall to maybe one of those family caregivers. And it's making sure if that's the case, if the tasks are falling to one person. How can those secondary caregivers then, I think somebody, maybe Clarence, it was you who was talking about caregiving for the caregiver. Sometimes I call those the secondary caregivers, right? How can we make sure that they're offering support that primary caregiver needs in providing that care to someone at a distance? And we see that particularly if there's one caregiver living in the same place as that person who's receiving the care and everyone else is at a distance. They want to make sure that they're offering the support that's tangible to that person who's here, providing that one's on here. And so it's delegating that in a way where maybe they all take turns calling and supporting. Do they have a rotation where they can come and offer that primary caregiver some respite so that they can get away and go on a vacation? But it's really keeping that open line of communication. And I usually tell that primary caregiver, keep a list. You know, even if there are people outside of the family who are willing to offer that support, a lot of times people will say to you, like, what can I do to help? Right? And you're so overwhelmed as a caregiver in the moment that you're like, I, nothing, I don't know, because it takes more time to even think of something in that moment. So keeping that list of things that are, you know, 15 minute help picking up groceries all the way down to complete. you know, raking and mowing and shoveling. So you've got a list you can pull from, from those people that are reaching out and saying, what can I do to help? You can say, oh, let me look at my list in my phone and I'll give you something that you can help me with. Flores. Okay, I wanna say something real quick. Give us some helpful data, statistics to help us with this issue. I mean, when you talked about, you know, 30% versus 3%, I mean, like, it shook me a little bit. You know, what are the kind of data do we need to know as it relates to this whole issue about family care or data or just so that people can have some kind of an idea? Just a couple of them, that's fine. Sure, so I think a very interesting statistic is that since the time the US census has been tracking nursing home that sort of environment as a possible residence, which is something like the 1920s, the number of people over the age of 65 living in nursing homes has remained consistent at 4%, which is often a shocking statistic because there continues to be this myth that in the US we somehow don't take care of our elders the way other countries or cultures do, but that's... That's simply not true. Most older adults are living at home in the community and if they need help, they're being cared for by a family member. They're receiving that help. And when I say family, I'm using that word very broadly to include friends, neighbors, relationship by affinity, partners, all of that. And I think it's a... an important statistic for us to keep in mind because it does mean that most of that care is happening in the community and is being borne by families who are doing it. Thank you, that's great. I'd like to add to that. Go ahead. The out of town sibling dynamic. Yeah. Because I think there is a pattern that I've seen frequently where As Lisa was saying, there's a primary caregiver, siblings are living out of town. And sometimes what will happen is when the out of town sibling comes, I believe it's motivated by a desire to make up for the caregiving they've not done. They offer advice to the primary caregiver about what they could be doing differently in order to make their life easier or better. And the primary caregiver rarely experiences that as helpful or supportive. It feels like you're being criticized, like you don't know what you're doing. And so I try to caution both the primary caregiver, but also the out of town siblings to have a different conversation about that and to recognize that the person who is boots on the ground needs to be given deference and support. because they're the ones who are in the trenches and do, excuse me, doing the work. And while there may be things that if I were the caregiver instead of my sibling, I would do differently. Unless I'm willing to take that care on 24 seven, I really have to take a back seat to that and offer other kinds of help. What can I do while I'm here that would be helpful to you? You know, I'm so- of all that you're doing, what would be helpful? And to ask that question rather than to offer, I think growing up there was a saying in my household, advice is to be given, not taken. But I actually think advice is to be asked for, not offered. And so, I think that offering to help is better than saying, have you thought about doing it this way? Yeah. It's easy to kind of think that way. But like you said, unless you're in the trenches, don't tell me. Lisa, you had a comment? No, I would say that I see that an awful lot too. And sometimes I think that almost ruins some family holidays where people could have time where they really just enjoy the time together and instead it turns into dread ahead of time like well what are they gonna see this time that I'm doing wrong you know and so it's yeah it's really talking through that clear communication again and saying like I don't need you to tell me what I should be doing differently I need you to ask me what I need to continue doing what I'm doing. So. You know, one thing I tell just the patients I see these orthopedic patients is, you know, oftentimes they're given a nurse triage number to call if you have a question and I tell them, just call. Don't wait until you have 10 questions because I said, the reason why is, is that when you hang up, after getting the answer for that one call, you'll feel better. So for caregivers, I recommend the same thing. Don't wait till your stressful question. This is, you know, you have 100 questions. Call any time you have a question. It's better because you'll feel better when you hang up. Last thoughts, Lisa. Yeah, I think one of the. The things that I like to talk about a lot with family caregivers is really identifying that there are a lot of feelings and emotions that go into family caregiving. And sometimes that's what actually I think starts the burnout for folks. So it's allowing yourself to have those feelings. I think of particularly, you know, when your life changes really quickly, you have a lot of... sadness and grief of the life you thought you were going to have that now you no longer have. I think of a married couple who had dreams and aspirations of traveling together after retirement or spending time up at the cabin and now with a dementia diagnosis that's just not possible. So it's really allowing yourself to have those feelings and those emotions and identify them and being able to move through them so that you're not stuck. in those emotions, because if you're stuck in those emotions, it's going to make everything harder as a caregiver. And so it's allowing yourself room and finding someone that you can talk about that with in a non-judgment, you know, a judgment-free zone to have those feelings so that you can come home and really be present in the moment. Like Terry was saying, living in the moment with somebody so you can still find those moments of joy instead of focusing. all the time on the tasks that need to be done. Terry. First of all, thank you so much for- Oh yeah, thank you. It really, I think is an important one for all of our communities to be having. And what I would say is that, echoing what Lisa said, caregiving sort of spans the gamut. It can be meaningful and rewarding and a source of joy. And also caregiving- happens in the context of conflict, historic conflict in relationships. And when there has been a difficult relationship, those caregivers often find it even more difficult, especially because I'm really glad we haven't used the term loved one at all today, but often health professionals will talk about caring for a loved one when they're not all loved. And so, that caregiving happens in all kinds of families and of every possible iteration of family. And so recognizing that the family in which the care is happening influences the care that is provided and influences the impact on both the older adult and the person providing care. And meeting the dyad where they are at with whatever that relationship history has been is a better way, I think, to support families than to try and say, well, this is the time when it should all go loving and caring because sometimes care needs to just be good enough and not out of this world fabulous. And it's better for everyone when we can recognize that. Absolutely. I think it's important, oh, I was just gonna add a little tag on the end. And to really remember that family caregivers really remember that there are resources and supports that are available specifically for them, right? That when they come and meet with those professionals, we're focusing on them. We're not focusing on the person that they're providing care for. How can we make this easier for you and build on the strengths that you have so you can have the role that you want as a caregiver and be able to do this for as long as you're comfortable doing it? Yeah. That's the key is knowing that there's resource help and hopefully support help from people that care about you as well. Clarence. And that was gonna be my comment. I wanna thank you for reminding us of the various resources that are available for you for the community. I wanna throw in one more, Volunteers of America. That's one that I work with. So thank you again, really for this very open conversation, which I have truly... Appreciate it. It's a tough subject. It really is because I see many people kind of thrust into it and it's just like, oh my God, I've got to go take care of a loved one. Excuse me, I have a job. What the heck am I gonna do here? So I mean, there's a lot of balancing that needs to be done but know this, people are successful in doing it. They might have their ups and downs, but overall a lot of people get through it. And hopefully that'll be a great takeaway for our health chatter listening audience. Thank you both to Terry and to Lisa. Don't forget Dr. Barry though. Well, of course Dr. Barry. Dr. Barry, do you have a last comment? My word here is this was outstanding. Thank you so much. This was fabulous. It's just nice chatting about it, about a subject that is important. Thank you both to Terry and to Lisa. This show will go out to you, the listening audience this week, so look out for it. We have great shows coming up. Our next show is going to be on arthritis and rheumatology, which is also, you know, all of us are getting a little stiffer as we get older. So look forward to that as well. So to you, the listening audience, keep health chatting away.