EP. 35 - Resilient Caregiving: How to Avoid Burnout and Embrace Support

Feeling the weight of caregiving? Curious about the signs of caregiver burnout and how to navigate them? Join us as we sit down with Danielle Chwalibog, a seasoned care planner and navigator at Mannor Law Group, who helps us sail through the tumultuous seas of caregiver burnout. Together, we unravel the emotional and physical toll it takes, particularly on spouses, and the necessity of separate spaces to prevent the emotional burden from creeping into your home. We delve into the dense fog of emotions caregivers often traverse - loneliness, anger, fear, and depression, highlighting the need to acknowledge and support them.

Venturing further, we pivot towards the unique challenges when caring for elderly loved ones with dementia. With Danielle’s valuable insights as our compass, we underscore the importance of understanding the disease, coupled with a healthy dose of patience and empathy. We raise the red flag on warning signs of caregiver burnout and stress the pressing need for education and support in caregiving roles. As we conclude our expedition, we touch upon the times when external care may be the lifeline necessary for the well-being of both the caregiver and the loved one. Soak in these valuable insights and guidance on managing the physical and emotional demands of caregiving. This is a conversation you won't want to miss.

Host: Attorney Bob Mannor
Guest: Danielle Chwalibog, MSW
Executive Producer: Savannah Meksto

Learn more about Mannor Law Group. 

Chapters

• 0:00 Caregiver Burnout
• 13:48 Understanding Dementia and Caregiver Burnout

Transcript

Danielle Chwalibog: 0:00

You're listening to advice from your advocates a show where we provide elder law advice to professionals who work with the elderly and their families.

Attorney Bob Mannor: 0:10

Welcome back to advice from your advocates. I'm Bob Mannor and a certified elder law attorney in Michigan, and today our guest is Danielle Chwalibog, one of the care planners and care navigators at Mannor Law Group. Welcome, Danielle.

Danielle Chwalibog: 0:25

Thank you for having me.

Attorney Bob Mannor: 0:26

What is a care planner or care navigator?

Danielle Chwalibog: 0:30

So our main role here in the office is to be our client's advocate for their loved ones for themselves. So we help families transition through the health care system and Help work behind the scenes and making sure that they're receiving the right care. Their loved ones know how to advocate and that we can advocate for them to make sure that they enjoy the rest of their lives and have good, reliable caregiving and a good, enjoyable life.

Attorney Bob Mannor: 0:56

When we're dealing with a long-term care issue, whether it's dementia or Alzheimer's or anything like that, dealing with the Medical system and the insurances and medicare and all that can be quite frustrating. Yes, just again and you are an advocate to make that a little smoother process, make it easy to and also to help them make have the family make good decisions Of all the possible options that are out there. You can help them narrow down their options and make good decisions.

Danielle Chwalibog: 1:31

Good facilities, making sure that they're on the right health plans. Home care home cares, getting coordinated, yep, absolutely making sure all of that is in place and that we've got the right coverage, we've got the right benefits and they're getting the good care.

Attorney Bob Mannor: 1:46

So today's topic is about caregiver burnout, and so it's a very important topic, and a lot of times when we think about caregiver burnout, we're often thinking about the kids or even professional caregivers. Let's start off with one of the things we just talked about, which with Coordinating home care. What about the spouse caregiver?

Danielle Chwalibog: 2:04

Yeah, so a caregiver is really a family member or even a hired professional to help care for a sick, elderly, disabled, even a child. But we've got spouses who do provide care to their loved ones and it takes a toll on them.

Danielle Chwalibog: 2:20

I'm very much it can be very hard, it can be challenging. You've got tons of emotions going into it. You know we think of back. You know in the day a few years ago that the family was always the main provider for caregiving, and a lot of that has changed now. A lot of people now have jobs. We we can't always be the ones to care for our loved ones, and so sometimes it falls on the spouse and they get frustrated, they get overwhelmed with it.

Attorney Bob Mannor: 2:48

Well, and I think honestly, what we see is Often the spouse is the primary caregiver and if they're still living at home, it's almost unavoidable. Sometimes, with both spouse are giving home and what I think the first step is acknowledging that they are a caregiver and all of the challenges and stresses that come with that, because Sometimes we just think of it as mom and dad. Yeah, and well, mom and dad have been taking care of each other for 50 years. How is this different? Well, it's much different. If one of them has dementia or Alzheimer's or stroke or other Physical needs that they're restrained and the other one, pretty much, is a 24-hour caregiver. Yeah, and that could be where, if the person needs care at 3 am, that our elderly mom or elderly dad isn't necessarily getting very good sleep, which is not very healthy or they wander Mm-hmm they get up at nighttime and they've been nights and days switched and they're wandering around and then your spouse doesn't, like you said, doesn't get the rest.

Attorney Bob Mannor: 3:45

They're stressed, their health then takes a decline and and it turns out to be not a good situation for either of them, unfortunately, and part of your role, then, is to make sure that we support not just the one that needs the care, but the caregiver to and the spouse, which sometimes we overlook the fact that they're, how much work it is for them, and Making sure that we're not just putting the full burden on them. That usually, in that situation, we're gonna want to make sure that they have some support, whether it's family or whether it's paid caregivers, whether we can get some government benefits or not, but we want to make sure that we're not putting the full burden on that Aging spouse and a lot of time, bob, the family and the spouse they just maybe want to break.

Attorney Bob Mannor: 4:24

Mm-hmm.

Danielle Chwalibog: 4:25

You know, it may just be an hour to go to the grocery store by themselves and they don't have to worry about, well, what is my loved one doing at home? Absolutely so that that having that care in the home will give them that break and that time for themselves.

Attorney Bob Mannor: 4:38

Well, we know that sometimes caregiving can be a thankless job, and sometimes other family members might not even recognize how much work and how much stress it is involved in that. What are some of the common feelings for caregivers that you've noticed, or what challenges are they facing?

Danielle Chwalibog: 4:55

Yeah, so a lot of the feelings that we hear and that I've seen loneliness not being acknowledged for the work and what they're doing for their loved one. Anger, fear, depression, sadness, isolation there's a lot of feelings, unfortunately, that can go into caregiving. Some of them are feeling great about it because they feel rewarded and they can see that the hard work that they've done in their loved one is striving. But a lot of it is a big burden on families and spouses.

Attorney Bob Mannor: 5:28

And this can even be true for paid professional caregivers, because it's really hard to. And even in our job we have to make sure that there is a certain level of separation where we can go home and not take those burdens with us, and that even you know it can be very emotional and we did a podcast about this a while back, about the importance of actually trying to maintain some level of separation from that. So if you're a professional caregiver, trying not to be too emotional in front of your people, your families, so that you're the rock and then you can go out in the car and cry.

Danielle Chwalibog: 6:05

Yeah, and it's hard.

Attorney Bob Mannor: 6:06

I mean.

Danielle Chwalibog: 6:06

I'll tell you, I worked in nursing homes prior to my job here at Manor Law and it was hard to disconnect, especially when you've made that great relationship with that patient or their loved one and the family. But you have to learn that you need to take time for yourself, and self care is very important too.

Attorney Bob Mannor: 6:24

So give us any tips that you have for the best ways to navigate some of these challenges.

Danielle Chwalibog: 6:30

So some ways are again taking time for yourselves. Don't be afraid to ask for help.

Danielle Chwalibog: 6:35

That's the biggest thing that I always hear is that I don't want to ask for help. I don't want to have to rely on anybody else to help me or to help my wife or my husband. Make sure that you know you've got a good support system and if you don't, there are people out there that will help you, provide that support and will be your support. I have worked numerously with families that their loved ones are all out of state and.

Danielle Chwalibog: 6:59

I'm the only support they have, so I'm checking in with them and making sure that they don't need anything, that they're getting the break sometimes that they need to, and again it relies back on self care taking the time for yourself to make sure that you're taking a break and that you are not feeling frustrated and taking it out on your loved one, and making sure that you're getting your shower that you need and you're feeding yourself and your health is not declining. That's one of the things that we do stress to our spouses who are caring for a loved one is that they continue to go to their doctor's appointments and not skip them.

Attorney Bob Mannor: 7:33

I mean numerous meetings that you and I have had that we've always stressed.

Danielle Chwalibog: 7:36

Make sure you're taking care of yourself too.

Attorney Bob Mannor: 7:38

Well, and we often relate the statistic that it's the caregiver spouse that dies first and whether it's a spouse or the child or whatever, there's a tremendous amount of stress and so you've got to have that I know this is a more popular term with younger people but that self care and it is so important because you got to make sure that you're getting to the doctor and getting proper nutrition and getting sleep. You know so many people one of the first things when I have a new family come in my question and they think, well, that's weird that a lawyer is asking me this, but I'll ask are you getting sleep? Because if you're a caregiver and you're not getting sleep, that you might not be around for much longer, because it's hard to stay healthy without getting proper sleep. So, getting back just briefly for the professional caregivers how do you keep that personal connection with your patients and their families without sort of taking it personally and taking it home with you in a way that might affect your own personal life and family?

Danielle Chwalibog: 8:41

Absolutely Good question. So you know when we're dealing with somebody who may have dementia or some confusion, or they are physically limited, you know you tend to take on a lot of their responsibilities and you want to make sure that you're providing the best care and you do get very close and you build that connection. And again, you may build connections even with the family members, but making sure that you're stepping back and saying, at the end of the day, I did what I could and understanding that they're still in good hands, but it's no longer your hands that they're in at that time, and making sure that you're you're disconnecting and it's hard.

Danielle Chwalibog: 9:20

I mean, I remember I used to go home and I would cry sometimes because I would feel so bad for some of my clients, realizing that they're all alone. But they're not. They've got the support, especially for professional caregivers because, you've got the support of your agency other staff members too and so you can disconnect and not feel stressed at home or worried that they're not being cared for.

Attorney Bob Mannor: 9:44

And you know that is a skill set that I highly recommend. That professional, anybody in the long term care industry or even in the health care industry as a whole, invest in Is that learning the skill set and the techniques for for compartmentalization, being able to go home and not not having the overlap of those feelings and emotions and stresses so that you're not bringing those to your own family. It is very difficult and there are certain strategies and techniques and I strongly recommend people invest in that, because it's hard to do this without having that separation or that compartmentalization.

Danielle Chwalibog: 10:26

It is, and again it goes back to at some point. Then you get burnt out, Right? And then you know, your, your burnt out self, affects the care that you're providing and then affects that loved one and then their family, and so we want to try and avoid that.

Attorney Bob Mannor: 10:40

As caregivers, roles change as people in their disease progresses or the dementia gets worse, the memory gets worse, maybe their physical limitations get worse. How can the caregiver make sure that they don't feel discouraged and disappointed? You know within their selves, because they're going to be honestly, they're going to be, they're going to have, you know less successes when the degrees of the disease progresses.

Danielle Chwalibog: 11:08

And it goes back to not being afraid to ask for help. Yeah, it really does. It goes back to talking with the doctors, talking with some professionals about different ways that your loved one's going to progress and being educated on how to handle those changes.

Danielle Chwalibog: 11:23

Here we try to offer education as far as what, certain diagnosis, as you might see, with different changes and it may come to a point where you can no longer care for that loved one in your home setting or in a different setting and just having that realization and understanding that it's okay and that you know I may not be the best person anymore to provide the care that mom or dad might need, more than what I can give them, and realizing that it's going to be okay. I am glad you brought that up.

Attorney Bob Mannor: 11:54

That's something I talk about quite a bit about. We have this sort of cultural expectation and you know, I think media and movies and television and everything we see when they address the issue of aging at all, it's either the wise elderly person who's wise and is perfectly self-sufficient and they don't need help and the family is only imposing themselves and being greedy or things like that, or we see the image of older people as being fools and you know that they have wrong thinking and things like that. Never is there a very good, or very rarely is there a very good description of what the reality of memory losses. The reality of dementia and Alzheimer's and different other types of dementias is where you know. It's not wrong thinking when you can't, you know, remember who you are or who the people around you are. It's not wrong thinking when your brain's trying to adapt to the circumstances where you don't have the context and you don't have the executive.

Attorney Bob Mannor: 13:17

I was thinking about this the other day. For you to give this example to younger people, it's if any younger people had ever engaged in some over-indulging of alcohol or other substances that affect it. It's like dementia could be considered like that. But also you can't remember the people around you. It's worse than that. So you don't have the executive, you make bad decisions. You don't have the executive decision making and you don't understand the context of who you are. It's a big surprise that somebody might lash out or say things that aren't great. That's not because they're old people that are foolish, it's because of a brain disease that is not giving them the context of what's around them.

Danielle Chwalibog: 14:03

And we have to remember they're scared, they don't know what's going on, they're not used to it, they're not familiarized with their surroundings sometimes, and we have to approach them in a way that is going to make them feel more comfortable. And so they're not scared, they're not lashing out, they're not somebody that we don't recognize anymore. And so again, it goes back to education and learning the approaches with somebody with dementia and how we can help change. Okay, mom might get mad if you wake her up from her nap at five o'clock, so let's maybe let her sleep a little bit longer. But it does go back to education.

Attorney Bob Mannor: 14:43

And I think when it comes to caregiver burnout, part of it is just living in the acceptance of this, that this is not the person that you loved as a fault.

Attorney Bob Mannor: 14:54

It's not as though that they had any intention or involvement necessarily in getting to that point, and so it can be so frustrating, I understand that. But if you can kind of accept this as just kind of that stoicism of this is is, this is what it is and not, you know, not be angry about the fact that in the reality is so many times I think family member caregivers in particular, they try to find ways that they can bring that person back, that they can. Even in that movie, the notebook, the whole thing was about every once in a while they would bring her back. So certainly that's a real, you know, that's a real thing. But the idea of focusing all your attention on that is a way for burnout, that's a way for frustration because it's going to be, if there is those times of lucidity, that they're going to be fewer and fewer. And it can be very frustrating if that's your whole goal is to try to bring back those times of lucidity. That's going to cause burnout faster.

Danielle Chwalibog: 15:58

Yeah, and you touch base on frustration. You know it's kind of going back to elderly people. Sometimes are like children. And that's what we have to remind ourselves, that they may need reminders. We may need to have to say something two, three, four times until they do what we're asking them to do or until they can understand. And we have to remember we can't get frustrated.

Attorney Bob Mannor: 16:19

And, to be clear, there's certainly lots of elderly people that are very competent and very capable.

Attorney Bob Mannor: 16:25

You know, I was talking to, I think, a 92 year old yesterday and he was running circles around me telling me about you know, some history things and I was fascinated.

Attorney Bob Mannor: 16:36

He was really an interesting conversation, I was very engaged in it and he's very competent, capable and makes good decisions and all those things. So it's not just about age, but we have to acknowledge the reality is, with age, a good percentage of the time we're going to have some slowing of that ability to process information quickly. Even if we don't have memory loss, sometimes we do need I need that to be re. You know, sometimes I'll tell you hey, danielle, can you say that over again? I got distracted for a second. Tell me that again. And so it is something as we age that we sometimes do have to ask people to repeat themselves and things like that. But you add them to the memory loss. And if there's dementia, that lack of executive functioning or executive decision making, and it can be very frustrating, especially if it's a loved one, you know someone that you grew up with or you know your spouse.

Danielle Chwalibog: 17:40

Yeah, and you're watching them, decline I mean that's ultimately, what it comes down to is you're watching them needing more help, needing more assistance, and that can take a toll on yourself and you know. Again, it goes back to making sure that you feel like you have the right support and that you know you're being provided with educational things that can help you through that and making sure you're taking the time for yourself.

Attorney Bob Mannor: 18:02

What are some of the warning signs that you've experienced here at the firm? Are there physical and emotional signs? Are there hidden signs?

Danielle Chwalibog: 18:09

There are. You know, one of the biggest things that I see in my profession is that they're starting to take things home with them and they're starting to make it more personal and they're lashing out at their own families and you may even start lashing out at the person that you're caring for. That's a big red flag and that's when you have to take a step back and say am I doing this for the right reason? You know, it's a very challenging position to be in and being a sole caregiver for somebody and you don't want to harm yourself, you don't want to harm them and unfortunately, we've seen stories where caregivers have felt so burnt out They've left their loved ones at home and something happened. They lashed out and accidentally hit them. Those are all slow, triggering facts that you should be aware of and that you should say to yourself. Okay, if I'm feeling angry, if I'm feeling this way in this tiny little moment, maybe I need to take a step back.

Attorney Bob Mannor: 19:13

So a lot of us have this in mind, that we want to make sure that our loved one stays home and gets care in their home, and one of the wisest things to be able to have that wisdom would be the understanding that it may not be possible for appropriate or best for somebody to stay home through their death, and as the caregiver, sometimes you might feel a lot of guilt even thinking that thought and again it goes back to the movies and the TV shows and all of that that there's sort of this perception that anytime that we're looking at care outside of the home and assisted living or nursing home, that we're just bad kids or bad spouse, you know and that's not the case, obviously it is almost always it's because that's the level of care that we need, that's the level of care that we have the option for.

Danielle Chwalibog: 20:12

Or family members have identified they can no longer do it.

Attorney Bob Mannor: 20:15

And that's a big part of it. You know, I think this is one of those things that if you have, if you're caring for a parent or a spouse with dementia, you might be able to do it for some period of time, but you will get to the point where you can't do it anymore. Either they will pass away sooner or you will likely get to that point where you can't do it anymore. But we tell ourselves that's never going to happen sometimes and we feel really guilty of thinking that, well, maybe we should explore other options, when in reality that's the best answer. The person sometimes needs three shifts of people caring for them. They, you know, if you have one person caring for you and otherwise you have three shifts of multiple people caring for you, it's that's a burden that one person can't face forever.

Danielle Chwalibog: 21:02

And I will tell you from personal experience. We went through this with my grandma. I was one of the caregivers for her and we all got to a point with my family where I said she's not getting the socialization she needs.

Danielle Chwalibog: 21:14

She's not getting the her daily activities that she needs. And we need to sit down and talk about option A, B and C and we ended up realizing that the best position and place for her was an assisted living. And she got socialization, she got different caregivers, she got to talk to people and it wasn't the same person and we weren't feeling overwhelmed or tired or angry toward her because she wasn't listening to us anymore.

Attorney Bob Mannor: 21:42

And that's really. We've seen that I think you have, and I have both seen this many times where someone moves into assisted living and then all of a sudden their memory seems to get better. It's that socialization. Yes, it's great that you have family that come by, or even one paid caregiver that comes by, or things like that, but that's not enough. We need physical interaction, social interaction. We need that stimulation of having somebody that comes in and plays the piano or having somebody to sit with at lunch. That's our own age or you know just any of the interactions that we're going to experience in those types of settings.

Attorney Bob Mannor: 22:19

And so often I've seen people absolutely thrive when they've made the decision not to stay home. So I'm not saying that's every case. I'm saying there's many cases and that if we're being so stubborn about keeping someone home when it's not actually best for them, when they need social interaction, when they need, maybe they're not getting proper nutrition or proper hydration or there's a danger of them wandering away or they're getting bed sores or any of these things that tells us, or there's a caregiver burnout that tells us we probably should make a change and it's the right thing to do and you shouldn't let your own guilt stand in the way of it.

Danielle Chwalibog: 23:01

And we want to empower our family members to be that support for their loved ones. We don't want. Sometimes I see an unfortunate situation where now the government has to step in and start making decisions and we don't want that.

Danielle Chwalibog: 23:14

We want to be able to empower our family members, our caregivers, to be able to make the right decisions, and we help them through that and we can guide them through that. But again it comes back to making sure that you're identifying yourself what you can handle and what you can't, and at the point that, okay, maybe mom or dad do need to go somewhere, and it takes a relief off of you a little bit.

Attorney Bob Mannor: 23:38

Very important. So Danielle? Can you give us your top tip or your top tip as far as those who are listening about this topic of caregiver burnout? Do you have any specific tips or your top tip?

Danielle Chwalibog: 23:52

Yeah. So it's funny in social work world, which is I'm a social worker by background, one of the main classes that we have to take is on self-care, and so we have to come up with okay, what type of self-care do you do and what are your main goals for yourself when you're not outside of the profession? And so coming and sitting down to yourself and thinking, okay, what do I enjoy, what do I like best? Is it that I like to go get my hair done? Or taking time for yourself to go get your nails done, getting a massage, taking a shower sometimes, I mean, I think back to when people had little kids and they were running around and they didn't get a shower.

Danielle Chwalibog: 24:29

And then you did, and that 10 minutes to yourself was the most amazing 10 minutes, and so just identifying yourself and maybe making a list of your top three things, of what would make you more relaxed and give you more peace, would be my recommendation. Having those three things always in the back of your head to say, okay, today I'm going to do this and I'm going to get it done, and it's going to be for myself.

Attorney Bob Mannor: 24:51

I met with a gentleman that was taking care of his wife and they lived on a little bit of acreage that was wooded. And when we started talking he said you know what I just really need? I need to be able to, at least a couple times a week, go out into the woods and just sit there by myself in the woods. He used to be a hunter and a lot of hunting is literally sitting by yourself in the woods, not shooting at anything, just sitting there. And I said I won't even bring my gun with me, I just want to. I just want to sit out in the woods. For, you know, a few times a week and I can't do that right now because I have to be with my wife 24 hours a day- and.

Attorney Bob Mannor: 25:31

I felt that you know that's a good example. Everybody's going to have a different experience as to what is that thing that they need to be able to recharge Absolutely. Any concluding points that you want to make on this? Any final thoughts?

Danielle Chwalibog: 25:45

Yeah, just don't feel guilty. Yes, I mean that's the. That's a big thing. Don't get frustrated, don't feel guilty. Don't be afraid to ask for help if you need it. There is support, it's out there. You may need help getting linked to those resources. We're here to help you if needed. But don't ever feel guilty for the decisions that you make. If you have to change an environment for your loved one, Very good, so well.

Attorney Bob Mannor: 26:08

Thank you, Danielle, for being with us on advice from your advocates, and if you enjoyed this podcast and you want to make sure that you get notices of a future podcast or watch or listen to some of our old podcasts, feel free to do that. At any place that you listen to podcasts, you can subscribe, or you can go to our website at mannorlawgroup. com and subscribe there. Thanks for listening.

Danielle Chwalibog: 26:37

Thanks for listening. To learn more, visit mannorlawgroup. com.