Stan, Clarence, and Barry chat with Dr. Terri Harvath and Lisa Brown about caregiver burnout.Dr. Terri Harvath - Clinical Professor at the University of Minnesota School of Nursing - is an internationally recognized expert in gerontological nursing practice and education and is currently serving as the Associate Director of the Clinical Science & Practice Core for the Center on Healthy Aging and Innovation at the University of Minnesota. Dr. Harvath also serves on the National Advisory Committee for the CAP-CT (Caregivers As Partners in Care Teams), Advancing Caregiving Research and Evidence Network (CARE Network) Steering Committee, and the National Alliance for Caregiving. Whether in teaching, research, or clinical practice, Dr. Harvath’s passion centers on the well-being and health care of frail, older people and their family caregivers.Lisa Brown - long-time social worker - has focused her career around older adults and their caregivers, working to keep people engaged in their community, remaining as independent as possible, and living a vibrant, dignified, and enriched life. Brown currently serves as the Caregiver Services Program Coordinator for Lyngblomsten, continuing her close work with informal/family caregivers providing care for someone with memory loss.Listen along as these two share their wealth of knowledge.Join the conversation at healthchatterpodcast.comBrought to you in support of Hue-MAN, who is Creating Healthy Communities through Innovative Partnerships.More about their work can be found at http://huemanpartnership.org/
Hello, everybody. Welcome to Health Chatter. 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. We'll get to them in a second.
I'd like to thank our crew, Clarence and my crew, to help us get these shows out to you, the listening audience, Maddie Levine-Wolfe, Aaron Collins, and DeAndre Howard are our researchers that do great background research for all of our shows. Our production managers, Matthew Broderick, Campbell, who gets these shows out to you in beautiful format to you, the listening audience.
Our marketing person is Sharon Nygaard, who also helps with our research as well. My co-host for the show is Clarence Jones, who's got much more experience at doing these podcasts than I do. He's been a great, great colleague. And I thank you for all your your great wisdom as it comes to these shows. We also have Dr. Barry Baines with us, who's our medical advisor on the show today.
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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. Terry Haverath. Dr. Terry Haverath 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 gerontological nursing practice and education currently. Currently, and I'll put that in quotes. Okay, currently. Currently. is the Associate Director of the Clinical Science and Practice Core 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 at 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 Long Blonstead is in St.
Paul, correct? Yes. Yeah, yeah, yeah.
With the second campus up in Lionel Lakes.
Yep. Right, 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 health care field a long, long time. And are we seeing the need for caregiving increase?
And if that's the case, what might it be from? Is it people are living longer? Is it they have more complicated diseases? 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 U.S., 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 going to 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? 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 duration or the length of that caregiving actually is extended longer than it would have been, you know, a few decades ago. 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 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 terminology 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, wow. I don't know if you heard me, but anyway. Wow. I know that this is a topic that we have to discuss. And so I just want to thank both of you for being here.
And, you know, I know that many of our listeners will be listening to what you're saying. How could 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.
Mm-hmm.
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 kind of background training where they're equipped to do more of the hands-on care or the companion care. And, you know, it's a time-limited amount of service. You know, 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, you know, 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.
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 doctors. professionals who've gone to school to learn how to provide that care are now getting discharged home.
And we're asking family caregivers to not only take on very complex care, 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, you know, 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, on staying ahead of the pain. Okay.
So, you know, that's one of the things, you know, how, And it's interesting because patients will say, 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, family caregivers, I think, are often reluctant to treat pain adequately because they're afraid of getting their family member addicted or 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.
You know, 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. You know, and that's why I think Lisa's role is so important because we 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 want to talk about challenges of caregiving, okay? Because I think that that's one of the things that, you know, 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 the 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 going to get grumpy. you know, we just assume you're just going to get grumpy. Okay.
Yeah.
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 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, 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 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 to offer support to that family caregiver, there's fees. It's not a part of the insurance
program to really support those family caregivers. They're, they're not the patient. So they don't get the same level of support in their role either. Um, 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, um, 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 that is always a priority 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, you know, 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, you know, 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, but.
Yeah, I agree, Lisa. And I think, you know, 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. 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, 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 understanding all these issues, what kind of communication should we be providing to the community? I mean, you know, 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. 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 issues. that they are a caregiver. So a lot of times people don't identify with that word. They think, well, of course I'm gonna 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. 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. And 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 situation,
You know, I know every Tuesday I can go grocery shopping because, you know, my cousin's going to come over and watch my mom. That sort of thing can really help with some of the predictability that 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, it was not on the radar screen.
And so my first, this is more of a, 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
you know, make the opening, you know, put up the ante and make the opening bet, you know, 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 factly, 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 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, 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 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 the whole you know, a bunch of things and are not really prepared. And so you'd be, you're very reactive to what happens. And it's always the phone call. Oh no. But I have a job where I have my kids as well.
So I'll, I'll kind of be quiet and listen because, uh, um, see what, you know, what I missed.
So it's really the prevention of it. How is it that, that professional care, you know, I've kind of made this distinction. I don't know if it's appropriate or not, but this 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. Same way with 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 bill 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 Medicare 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 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, 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. Um, 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 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, they're There are also sandwich generation caregivers who are providing care for a parent as well as maybe their children. There's kinship care. So, you know, grandparents who are taking care of grandchildren.
And each of those kind of has that little nuance of, you know, what those needs are and what that burnout might look like and what the responsibilities are. And so it is making sure that 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 that community of care for themselves beyond what we can offer with the limited resources we do as providers.
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.
Those are all good thoughts. We could do a bunch of shows on this. One of the things that you've kind of 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 costs. 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, right? But for older adults, the cost of their care is increasing. And a lot of that is borne by the family caregiver. And we see that both in direct out-of-pocket costs that caregivers incur,
pay to provide the care, to buy resources, to fix mom's house because it needs 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 an older person is cared for at home. But it's not a freebie.
We can't assume that it's always going to pencil out to be the better care. economic option because there are impacts that ripple out through society. Yeah, Clarence.
Yeah, we acknowledge 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 particular barrier, just like I was talking about with the with the family before.
Once you hit 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 what I mean? And it's not that you don't want to be bothered, but you don't know what to do. So 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 that caregiver always 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, you know, whether it's connecting them to other resources so that they can, you know, 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? I always use incontinence as an example. Some people will say,
You know, once this person is incontinent, I'm not going to be able to do that anymore. But slowly over time, you get one bout of incontinence and you're like, oh, that's OK. 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, you know, 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's 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 I mean, it's somewhat different because of settings typically, but can you share your expertise on that?
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 this myself.
Mm-hmm.
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're 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 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 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 OK? 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. 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 want to do and so I think sometimes the burnout is fearing that I don't know what the right thing is to do or do it it's there's a lot of mess involved with that yeah 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 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, it's 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 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 know, 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?
You know, it's one of the things that's really struck me in this conversation or this chat is lifestyle change. 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 wanted, I thought I would tell just a little sidebar story here. A very dear colleague of mine, and actually he was my
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 house and his wife was helping 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 um just what i was seeing and what she was 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 um
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, do you face that or have you faced that Lisa or Terry? Have you seen that?
Lisa, go ahead.
Yeah. I mean, we experienced this in my own family. My mom was 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, 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 want to 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?
Or you don't have to repeat the story 20 times.
Yes, and that's how that 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 process. 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 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 care.
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 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 let me look at my list in my in my phone and I'll give you something that you can help me with.
Okay, I want to 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 other kind of data do we need to know as it relates to this whole issue about family care or data, 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 or 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 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 And I think it's 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, the out-of-town sibling dynamic. 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 home, 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. It, Unless I'm willing to take that care on 24-7, I really have to take a backseat to that and offer other kinds of help. What can I do while I'm here that would be helpful to you? That's a great point. 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. Yeah. And so, you know, I think that, you know, offering to help is better than saying, have you thought about doing it this way?
Yeah. It's easy to 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 it's, you know, 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 going to 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, I tell just the patients, I see these orthopedic patients is, you know, oftentimes they're given a nurse triage number to call and, 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 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 until your stressful question list is, you know, you have 100 questions. Call anytime 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 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 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 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.
Terry. First of all, thank you so much for this conversation. 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 I think 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.
Oh, I was just going to 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 going to be my comment. I want to thank you for reminding us of the various resources that are available for you and for the community. I want to 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 appreciated.
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 going to do here? So, I mean, there's a lot of balancing that needs to be done. But know this, that people are successful in doing it.
They might have their ups and downs, but overall, a lot of people
get through it and um and hopefully that'll be a great takeaway for our health chatter listening audience thank you both to terry and and to to lisa don't forget dr barry though and well of course dr barry dr barry do you have a last comment word here is this was outstanding and yeah thank you so much this was fabulous you know it's um
it's just nice chatting about it you know about a subject that is important so 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 as we get older so uh
Look forward to that as well. So to you, the listening audience, keep health chatting away.