Lisa Brown
Appearances
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
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,
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
county-funded programs or whatever it might be, educating around that.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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,
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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,
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
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,
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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?
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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,
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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,
Health Chatter
Caregiver Burnout
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
Health Chatter
Caregiver Burnout
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.
Health Chatter
Caregiver Burnout
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.