The Caregiver’s Perspective: A Heartfelt Conversation with Dr. Chrissy

In this second recording, Dr. Christina Marsack-Topolewski, a licensed social worker and associate professor at Eastern Michigan University, discusses her journey into caregiving, focusing on family caregivers of individuals with disabilities and aging populations. She highlights the emotional landscape of caregiving, the invisible work often unrecognized, and the impact on mental health. Dr. Topolewski emphasizes the importance of community, support groups, and self-care for caregivers, and addresses the challenges of balancing empathy and over-extension, the role of culture in caregiving, and the need for effective support systems. Her work aims to improve caregiver support and advocate for legislation protecting vulnerable adults.

Dr. Marsack-Topolewski is one of our most popular speakers at Make An Impact, both with the team and with our customers. She’s an Associate Professor of Social Work at Eastern Michigan University and received her Bachelor of Science in Special Education from Wayne State University, a Master’s degree in Social Work from the University of Michigan, and a PhD in Social Work with a dual title in Gerontology from Wayne State University.  With 20 years of experience supporting individuals with disabilities and their family caregivers, Dr. Marsack-Topolewski has worked as a professor, clinical therapist, teacher, consultant, and speaker, and has published over 80 research articles in scholarly journals and encyclopedias on individuals with disabilities, family caregiving, dementia, and aging. Click to listen or read the transcript below to hear Dr. Chrissy's thoughts on:

• Her own perspective as a caregiver, including touching personal anecdotes
• How to be aware of burnout and what caregivers and those who support them can do to prevent and/or recover from such burnout
• The importance of boundaries when it comes to caregiving, and how to better understand setting and maintaining those boundaries
• The emotional energy caregiving takes, as well as the great reward that is often the product of this labor of love 

Audio Transcript

Welcome to ImpactCE, your trusted partner in continuing education for health and well being professionals at impact. CE, we believe that informed clinicians create lasting change. Let's dive in.

Hi and welcome. I'm Shannon Douglas, and you're listening to a recorded conversation from CE learning systems.

In these conversations, we explore topics that matter to mental and behavioral health professionals. These recordings are part of our ongoing dialog with experts and peers. We're here to provide a space for thoughtful, grounded and sometimes challenging conversations about clinical care, education and growth, whether you're listening between clients or on a quiet afternoon, we're glad you're here.

In this episode, I'm joined by Dr Christina Marsack-Topolewski, a licensed social worker and associate professor at Eastern Michigan University With over 20 years of experience supporting individuals with disabilities and their family caregivers. Her work centers on family caregiving, developmental disabilities, aging and dementia, and she's led multiple research and service initiatives to improve caregiver support. A nationally recognized advocate, Chrissy has helped shape legislation to protect vulnerable adults, and serves on the US National Task Group for intellectual disability and dementia practices. Today, we're diving into all things caregiving, from understanding the emotional landscape to strategies and support.

So, Dr Chrissy, thanks for joining us again for another conversation.

Oh, thanks so much Shannon for having me.

So to get started, I would love to hear what first drew you to specialize in in these areas of disability, caregiving and aging within mental and behavioral health.

Yeah, it's such a great question. I think there's some my earlier experiences. So as a high school student, I did a lot of volunteering, and I was a runner. I was a cross country runner. I was a figure skater. But every day after my practice, I'd walk across the street from my high school and I'd visit a number of older adults who I just got to know and love. And I did this for a series of your a series of years, where I went every day, Christmas, Thanksgiving, Easter, all of them and visited them, and just seeing the different experiences they have in their life as they're aging. And then some of them talking about some of their loved ones. And I remember thinking, and really, you know, as I thought about some of the things that you might ask me today, thinking a lot about some of those people, on those individuals, and just really, kind of falling in love with the wisdom and the insight that our older adult populations really do have, but how they are so, you know, really marginalized and segregated in our society and kind of pushed to the sides.

And so I was really, really curious and interested in working with that population because of some of these earlier experiences. And one of the individuals that I continue to think of this day, who I visited, and this would have been over, gosh, over 20 years ago, but he was here, living in Michigan from Florida, and had come up, I imagine there's snow birds, like many of our older adult population, who has the privilege to live in the warmer climates, then come back to Michigan in the summers.

But he was here, and his wife had very advanced Alzheimer's disease, and he was living in the assisted living portion of this retirement community, if you will. And his wife was in one of the dementia units, and him just sharing about her and these experiences. And I became really, really fascinated with what this looks like for him through his eyes as he ages, but as his wife is simultaneously aging with cognitive decline, but simultaneously, I was doing all these things in my high school experience, one of which I was working with kids as part of my learning experience, but kids with disabilities and I was really, really interested in really, kind of perplexed by some of the ways that they were treated, sometimes not well, by peers, oftentimes general ed peers in the school system. And so I did some work to help a program, a Classroom program of kids with cognitive impairments.

And so I always said, One day, we'll do both. I didn't know how that was going to be. And I should probably also mention my mom was a special ed teacher, so I've grown up just with different experiences that were really rich to to learn about different people and learn about different people's experiences. And it was really, really great. And so I entered college, and I I felt like teaching made a lot of sense, but I also took my first social work class, where I really fell in love with social work, and I remember saying, One day, I'll do both. But I had no idea that you could work with people with disabilities and work with older adults, and how that would fit in. And so as we kind of kick the can down the road, I find myself actually kind of convinced by a friend to randomly take the GRE and apply to a PhD program. And so I did.

I was working as a special ed teacher. At the time, I was running a program for kids with moderate cognitive impairments, and I said to myself, if I went to this program, that one day, I would do both. And so it was really kind of a really huge calling for me, just to find something where I could really do kind of the work that I loved in both aging and disability. And so when I was doing that work, I focused, and it took a lot of years Shannon, but I focused on studying aging caregivers of adults with autism at that time, and which continues to be the predominance of literature and the predominance of programming, as well as funding nationally, is really devoted towards children and adolescents with Autism. And so I was really curious about autism.

I had started working more and more and more with kids with autism, because in the classroom setting where I was working while I was simultaneously doing this PhD. And so it was really, really meaningful. And through that, I was able to hear all sorts of stories from family caregivers across the country who were not only predominantly supporting, in some ways, as a caregiver, their adult children with autism, but talking about different experiences. And some of those really kind of like I held on to, and they really kind of shaped why I do the work that I do, and why I'm passionate for it. But many of them were also serving as what I would call compound caregivers, where they were caring for somebody with a lifelong disability, ie, autism, and this looks like all sorts of different ways in terms of what that support would mean, but then they would tell me their spouse had been diagnosed with cancer, and they were simultaneously caring for their spouse, or they were caring for an aging parent, or they had multiple children with autism, maybe some in adulthood, and maybe one still, you know, below the age of 18.

And so I was really, really drawn to kind of caregiving, aging and developmental disability for those reasons. And since that time, I've been able to do other work in some of those veins, looking at other things, like invisible caregiving populations, populations that we might not talk about, but who are doing a really heavy lift in caregiving here, unpaid caregiving from a familial standpoint, here in the United States, you

know, one of the things that I really love listening to you talk Is it everything is so layered, and there's so much crossover in every direction. It's it's cool to be able to hear somebody that's got their toes in so many different avenues, and be able to connect the dots there.

Yeah, thanks. And I, you know, it's funny, it's I feel so blessed by the people that have presented in my life, and the mentors I've had and the colleagues I've had and have just for these different opportunities to do work that it doesn't feel like work. You know, it's, it's, you wake up and it's, I say, it's like being a kid on the sandbox. You get to study all these different things and talk to people, sometimes here in the States and sometimes internationally. So it's been really, really, a really positive point in my life, and just a huge blessing for me.

Yeah, your passion definitely rises to the surface there. So I'm curious, what does caregiving mean to you, personally and professionally? Like, how would you define that?

Yeah, no, it's great, great question as a hard question. So when I started doing this work, I was working with kids with disabilities, adolescents with disabilities, for my Master's and PhD, I focused on aging and Gerontology as well. And so I was really interested in from this other perspective. And then I became a mom. And so my oldest daughter, she'll be five in July, and it totally reshaped the work for me.

I loved it before, and then I said to my husband, and I continue to say, this of this work is really this work is really important. We have to do more. Because I look at the different types of caregivers that we have across the United States, when we look at our unpaid caregivers, somewhere in the ballpark of 53 million individuals who are providing this work, right? And I can only begin to imagine what it looks like from kind of the glimpse of my own personal experiences and then from what people have shared. But I guess I would say personally, my own experiences as a mom have just kind of refined, even how I go about my work and in the meaning I hope I bring to it, or the passion I bring to it, or even maybe some of the empathy.

But professionally, it was always it was always important. It was always important. And I think you know, when we look at some of our caregivers, both paid and unpaid in this country, they are doing some of the most tremendous work without a lot of recognition, without pay, without recognition. And I even think about the different people I meet in my life. And so while very much So personally, I am now a caregiver and a mom of three little girls. I you know, I think about these different experiences that really shaped me. I. Probably at many of the webinars I do for your company, I talk about these different experiences as an extrovert, you know, talking to people in the grocery store line or at the park or the library, whatever places I find myself in, but I was, you know, your question makes me think of an experience I had earlier this week. I took my three daughters to the park, which is no small endeavor, shows in their shoes and is crying and needs to go to the bathroom, is hungry, but doesn't eat that food.

And we finally make it to the park, and we met one of my dear friends and her four children, and we're at the park, and as I disheveled, Shannon, totally disheveled, roll into the park, I've got my kids, and they're all, you know, everybody's everywhere, all over the place. Some of them probably have shoes, don't who knows? I see a couple and a couple there, and the father was holding his son with what appeared to be very severe, significant cerebral palsy. And they had three other children, and they were looking at me. I have a my baby, who's six months old now she has one of those, like crazy helmets. So apparently her head is a little bit misshapen in the back, flat in the back, and who knows what, she's fine otherwise, yeah, but she's got this ridiculous helmet that they convinced my husband was a great idea. Since they got these big, hot pink neon hearts all over, there's no way to miss us.

So as I'm like, rolling my baby and this mother is smiling and talking to my little daughter, Maria, and it was so sweet. And so I start talking to her, and we start talking, and they're talking about their son, and, you know, they don't know what I do for a living, and I don't know anything about them. And I comment on how beautiful their four children are. And the dad said, Yes, and he said, it's a lot of work. And I said, Yes, I can imagine. And here, as he holds his nine year old son with what appeared to be cerebral palsy, he said, This will be my forever. And like he was so grateful and so blessed, and he said those things. And then we start talking, and he, you know, asked me some questions, and then we started to get talking, and it kind of came up what I did, and he was talking about some of the services. And as you think about for me, what really shapes me, both personally and professionally, is just those kind of tender moments that you have with people, sometimes near and sometimes far. And I think of this family, and I think of what their life might look like. You know, here's a roll in, you know, rolling into the park, totally disheveled Shannon hair, everywhere, shoes.

We're looking under the seats in the car for the shoes. And I see this beautiful family who's doing, you know, the labor of love that there is no, there is no comparison to it. You know, the love that these families have for their you know, their caregiver that's or their care recipient that sometimes requires the most. So as I think of your question, I guess that's what caregiving means to me, personally and professionally. Is just in my work, hopefully being able to kind of extend something, whether that be some information for people, whether that be just an empathetic voice, whether that be advocacy through some of the work that we've done in our respective state, you know, advocating it for House bills, that's what it means to me, is just being able to, you know, really serve those around because this is, again, this is the job of 53 million unpaid caregivers. And I would say, I would guess that number is probably not even totally accurate, because, as we start to think about there's all sorts of people that are providing care that don't even realize maybe how much they're doing, because it is such an invisible labor of love.

Yeah, and it's not always sudden that it, that it comes on, I'm sure too.

Yeah, you know, it's interesting. So we we have some work here in Michigan, and it's really cool. We have a program that we replicated and refined for some of the demography here in Michigan. It's called Lori's Hands. And Lori's Hands originated out of the University of Delaware in Newark, Delaware. And we learned about Lori's Hands and we wrote some grants, and this is some of the grant work that I've you know had the privilege to lead. We had two grants, and we still have an existing program, but we're serving over 100 older adults or people with chronic illness weekly through intergenerational programming here in southeast Michigan, through this Lori's Hands program. And you know, when I think about it, we were running data and trying to pull all these stats for some of the reports that we were writing. And I said to my, my dear friend and colleague, Dr Keith Chan, who's who's out of New York. And I said, Keith, nobody is saying they're a caregiver or they have a caregiver, because I think in sometimes these moments where normative and non normative aging happens, yeah, somebody just kind of pitches it, yeah, totally. So, you know, if I saw you needed something, you know, I'm gonna do my best to make Shannon some like, very non gourmet meal, or get her mail or, you know, whatever I can do. And over time, what we see, sometimes, even in couples, is this a. Emergence of this reality that they're caregivers, and some of them may not even really totally assume that role or that title to the role that they're actually doing. And so there is something there that we're finding that is really kind of happening from this really interesting phenomenological perspective in terms of caregiving.

So that 53 million you wonder, is that really? Because I think a lot of individuals, especially in kind of partnerships and spousal relationships, you know, they do things that maybe the other can't, and some of that was just kind of how the relationship went. And then over time, when they see perhaps a decline, they step in because they sense that the other one might not be able to do that from a functioning standpoint. So, yeah, so that's, that's partly why I do this work professionally, is just, you know, I think about these millions of people across the country, and then the people that I've served directly, these very specific stories, these very specific needs and these realities that often go on kind of unheard, untold.

It's great to have the personal stories from all these different angles. And it's lovely to hear that you're you're still, you know, recognizing and getting that, having that experience out there, and just your your day to day life and how it ties back to what you do. Yeah, it's interesting.

And I think it's funny, because sometimes, when you meet with people, and you hear, you know people, everybody has a story about a loved one who was once sick, or a friend who is sick, or somebody with autism or somebody with dementia, that I think there's like almost this, sometimes, this common experience somewhere in the realm of, like, health, aging, disability and caregiving, that there's, there's kind of this common language, even amongst cultures, and, you know, people just across the world, really, because there's a common experience there,

yeah, yeah. Something unspoken, yeah. That kind of rolls me into another question, which is, what are some of the most common emotional challenges that you see caregivers face that often go unseen or unspoken?

Yeah, I think sometimes it's interesting because you use the word unseen and unspoken. A lot of our caregivers do what we would consider, I would consider invisible work, work that's not recognized. You know, when you think about the massive amounts of laundry or the coordination of schedules or transporting somebody here and there, or the work that they do sometimes throughout the night, because somebody needs, perhaps 24/7 care. So that unseen, unspoken, I think is really true and from an unspoken perspective.

Oftentimes, I think many caregivers feel that they can't always share the burden. They're feeling like it's not, there's almost, it's almost like socially unsanctioned, that there's a stigma to saying, Hey, I'm exhausted from this. Some of the things that I found, I looked at quality of life from a number of different dimensions, and caregiver burden from different dimensions, and some of the things that I found from a caregiver burden standpoint is like how time intensive things were, that it was so so hard, especially for our caregivers, who are caring for more than one loved one, and oftentimes those loved ones will have totally different needs and may even be residing in different places. And so they can get really, really hard. So time has been a real big piece. Emotionally, people will talk about different emotional ramifications that it's it's really painful for them emotionally that they're feeling developmentally incongruent. You know, if somebody felt like, Hey, I'm X years old and I'm watching my same age peers do X, Y and Z, and they're not able to do those things. You know, watching somebody as they launch their own children, but maybe they know that perhaps their adult child will lead lifelong care those kind of things. So emotionally, you see a lot of different things from you know, the effects it has on them, emotionally feeling, perhaps for some of them distressed or see different things. People will talk about all different things.

The other thing that I find really interesting, that kind of ties to what you're saying in terms of emotional is there are times when people wish for something else in terms of reality, for their own life. Sometimes that caregiving can become so time consuming, so relentless, so ubiquitous, that it becomes such a heavy part of their day that they're not able to do some of these other things. And so emotionally feeling like, hey, this isn't exactly how I saw things going, and I don't really have the support I need to do this, but I'm supposed to just trudge on, because there's no one else really equipped to do this work, or there's no one else who knows my loved one this much. And so sometimes we see things like anxiety, depression, just wishing life were a little bit different. Different but a lot of times, and this is, I think, the silver lining of caregiving, a lot of times, despite how sometimes relentless, challenging, exhausting, physically and emotionally, a lot of times that we find tremendous joys and rewards that our family caregivers are talking about. And so this was a large piece of my work, as I centered on looking at what do we know empirically? What do I know from my own national work in terms of the rewards of caregiving, and in my work, almost all of the family caregivers talked about rewards in some regard, and they could be celebrated in different ways. It was rewards from seeing their loved one make progress and how beautiful that relationship is between them. It was rewards for maybe these meaningful communities that emerged because of this caregiving journey that they were on that they may or may not have ever anticipated being there. Others talked about, you know, deep in faith, deep in spirituality, deep in connection with God. And so there's really some cool things. So it is, there's a lot of layering there where the caregiving can become so emotionally challenging, but and time intensive and financially burdensome for all sorts of different reasons.

But then that layering of the beautiful relationship and the beautiful rewards and joys, yeah, certain, certainly, two um, two extremes, two ends of the spectrum, yes, yes. And it's like, all layered in, you know, it's like life like we don't live life in like this, be cut, clean way. And so people experience life through like kind of the rewards and the joys and the trials, sometimes all at the same time.

Well, so how would you say that that impacts a person's mental health over time, a caregiver's mental health?

Yeah, I think there's a great that's a really great question. I think there's a variance. I think there's a variance, and I think a lot of this is predicated on what's their experience like, how equipped are they to do the work? How long is the duration of caregiving? What are some of the other networks they can leverage, or perhaps not leverage, in terms of paid and unpaid social support? For some, this can be really exhausting. It can deplete them in some of the work that I do in family caregiving and autism in adulthood. This is particularly hard on caregivers mental health, especially as it goes on and persists in kind of these, what we consider relentless manners, where there's behavioral symptomatology that's very high and very difficult to manage. And so there's different factors I think, that certainly impact mental health.

For some of our caregivers, they're able to adapt and do well. I developed a training for the Arc of California that went to many family caregivers out in California who have adult children with autism and other neurodevelopmental disabilities. And it was really, really interesting, because we start to kind of just sit in the space of like health and wellness for these caregivers, some of these caregivers, they have it down. This has been their life since that child has been born, and while life changes, and while both they and their care recipient age simultaneously, they've adapted, and they have all sorts of tricks and tools and strategies that they use and implement. For some as caregiving demands ebb and flow and change, and for some as their own caregiving, their own care abilities decline because of perhaps health reasons and their own bandwidth. I think that's an opportunity when sometimes the mental health implications from an adverse standpoint really start to percolate in and elevate. So I think, I think it's really a mixed bag.

One of the things that we really should as a country be mindful of is the support we're giving caregivers. Is it the right support? Is it efficacious? Is it actually helping them, and is it helping them in the needs that they need help, right? So sometimes people say, Oh, Chrissy, you have three kids. I can do X, Y and Z. And sometimes it's, you know, my mom that's gonna drop off a meal, because it's really, actually hard to cook. With my three children, I had a toddler who actually liked to crawl on the top of the stove where the burners are, Shannon. And I'm going, Yeah, that's the last time I used those burners for a long time. And we got her, she's safe, yeah, my little Sophia, she's a little, little climber. She wants to be an acrobat and a dentist when she grows up. And so you think about, you know, long term caregiving, the support that we offer to those caregivers really needs to be what they need. And sometimes what they need is not always what I think we as providers and professionals think that they need.

So what would you say, like, what role do therapy or support groups play in a caregivers life, and how can they, how can someone, yeah, it's a great question about support groups. Again. I think it varies. Some people, I'm like this open book I'd like love to talk to you all day and into tomorrow. But there are people, you know, different types of support groups and different types of information. We're gonna be helpful. From person to person. I think they can be really, really helpful.

I've seen ways that they're really helpful. I've done work and research on this with some of the family caregivers here in the United States. We look at even some of the support networks for others. I think support needs to be kind of derived in these other ways, but in terms of what's helpful. I think sometimes, when we look at certainly the informational needs, and for many, the emotional support, or even the navigational support, of even being able to navigate services pinpoint where somebody needs to even go to there are amazing virtual support groups, and there's amazing face to face groups, and I've visited both, as silly as that sounds, it's hard to visit. I've physically visited this virtual group, but I physically visit a number of support groups. And for I think a lot of the people going, they are really, really effective. And certainly for our people who are maybe aging with some decline, those can be very helpful.

In many regards. I have talked to other people who say, you know, I live this. I know what it's like. I know what every moment is like and every day is like, and it's hard that I actually don't feel supported when I go into a space and I hear somebody maybe basically helping me relive some of the challenges of my life. So I think, you know, we have to be certainly careful there and mindful there. But I've seen a lot of really great things. One of the things in terms of support groups that I've seen to be really helpful in some of the family caregivers across the United States who are what I would consider this invisible caregiving population. They're caregiving for individuals with intellectual disability, comorbid dementia. So it's a very, very specific type of caregiving. Oftentimes, what we're finding is that individuals with Down Syndrome have a really heightened propensity to experience dementia, and sometimes the really quite earlier ages.

And research is continues to be forthcoming, certainly in many regards, in that way. But one of the really cool things that I've seen is, and it was started by an individual who was caring for her son with Downs, who has who had dementia, and she realized there was like nowhere to go, like no one was talking about this specific type of caregiving. No one knew about it. Nobody. The providers, sometimes had never even heard about this. It was hard to even get diagnoses, and really, you know, astute information from a neurological standpoint. So she started this Facebook group, and only individuals who are really relevant to that group are admitted in. But it's been really cool. I had Institutional Review Board approval to study what was occurring in this group.

And so my colleague, Dr Preeti Samuel, and I looked at this, and it was really, really interesting to see the support that was being offered from family member to family member. So it wasn't a professionally provided or professionally implemented support group. It was really organically made by a family member. And so people are getting, oftentimes, help understanding some of those initial signs of cognitive regression and intellectual disabilities. They're getting informational support. They're getting emotional support. It's a tender, it's a tender, a lot of tender moments that I see in that group, because we do have people with ID and dementia that die. And so sometimes, you know, people are sharing about kind of those final, last moments of life. And so it's very, very beautiful the support that can organically be, you know, really offered in that way, in terms of other support. And then, I promise, I'll let you ask your next, next question. Shannon, but the other thing that I've seen really cool, that that I've done in some of the work that I do, I work and have worked in the public schools now in more of a consultative basis, doing what I would say is kind of the marriage between Special Education and Social Work, providing some teacher consultant services for mainly adolescents with developmental disabilities who have individualized education planning and programming.

But what I've seen is at times, we see students who have emerging disabilities, and it can be very, very, very painful. And I'm going to give the example of having worked with families who have children that that begin to identify, you know, different kind of symptomatology that's indicative of either prodromal schizophrenia or schizophrenia. And I just remember some of the experiences of being able to connect individuals, with you parents, with other parents on that same journey, because we're thinking it's very uncommon, right? Schizophrenia is not like such a common behavioral, you know, by diagnoses, and then to start seeing some of these precursor signs at such young ages, and that can sometimes be really supportive to families in a lot of ways, and thinking about a really specific scenario where I was able to connect a family with permission, with. Another family of the same cultural descent, because we know how culture, you know, every culture, every religion, right? There's different considerations there. And so really being able to, you know, serve as a conduit to really, hopefully open a door from for some support, from one parent to the other, and vice versa.

It sounds like what I'm getting from what you're saying is community is such a huge making sure to not not feel isolated or lonely in these situations.

Absolutely. Yeah, Community Information reducing stigma. And it's interesting, because probably in every talk that I give for make an impact, I always make a small plug to social isolation and loneliness, because it is so important, especially with the work that we do. When we look at anything that's going to promote functionality, health and wellness, community is important. And as we look at kind of our current numbers right now, based on the US Surgeon General's recent report that came out in March of 2023 we're looking at about 60% of Americans across the country are indicating, you know, that they're feeling socially isolated and lonely. And it's really, really interesting as we start to think about some of the implications for us as clinicians and providers in whatever space we are, the schools, behavioral health, substance misuse, wherever we are sitting, that sense of community is huge, and we have this, I would say, even a 60 year plus trajectory and downfall in terms of our sense of community as a country.

And there's all sorts of different reasons why that's the case, but we think about, why are we functioning the way we are? Why do we need some of these other supports? Where may some of these supports have previously been generated that they're not. There is no home or space for and so I always go back to community, because I think it's so important. And certainly community in the space of aging, community in the space of caregiving, community the space of health and wellness, all of those. Community, community, community. So I always make the plug if there's anything else we can do, even in our own little circles where we live and reside, to just promote community. People need it. People really need

it. Yeah, you know, that's really fascinating about community. What are some early warning signs of burnout or compassion fatigue that caregivers should watch out for that you would recommend?

Yeah, no, that's a great question. I think some of us actually withdrawing socially. When people start to withdraw socially, oftentimes people say, Oh, work or my family life is so exhausting, I'm gonna have to skip this plan, or I'm not gonna make plans. And that social withdrawal is one of these other things that we see when we start to think about burnout or compassion fatigue. With compassion fatigue, we actually see some depersonalization. And we can see this in ourselves as providers.

We may see this in our family caregivers, is that the demands are so high, and they see feel so high, and there's almost that occupational hazard, if you will, to that relentless, ongoing demand no end in sight that people actually withdraw. And so I think when we start to see things like withdrawing socially, or even kind of just stepping back or depersonalizing from some of the care demands that our caregivers have, or even just not even taking care of themselves, personally. So, you know, other things like not getting enough sleep, not eating. Well, oftentimes, those of us when we're busy, right, we might not be sleeping as much, we might not be exercising.

So I always go back to kind of those main things that we want to do in our life, those basics, right? For good health and wellness. We want to be connected to a community. We want to be connected to a spiritual community. If that's of importance and value in your life, we want to be drinking enough water, getting enough sleep. That sleep hygiene is really, really important, to be able to not burn out. You know, really kind of having that internal pulse of where we are, if we're feeling more agitated or more frustrated. Those can oftentimes be telltale signs of burnout, right? If we're noticing that we're not quite ourselves or the days kind of feel more exhausting, these are, these are all signs that, as I think about our family caregivers, you know one thing to be mindful of is we have more and more family caregivers across the United States who are simultaneously working, and so if that's the case, there are so many different things being thrown at them, and so many different balls that they're juggling metaphorically, that really being mindful of the signs of burnout, you know, in their familial context, but also how that spills over into work and so forth,

outside of practical the practical strategies that you just recommended, what might some mind body connection practices be that you would suggest that people do to help reduce stress or trauma?

Yeah, that's huge. That's huge. I mean, you know, lots of practical strategies. I know you're asking about kind of the latter here, but practical strategies, I just want to emphasize things like. Exercise, sleep, eating healthy, drinking water, in terms of some of those, these other things that we can do to really enhance mental wellness and well being, things like mindfulness, things like connection to prayer and spirituality. I've talked with a number of family caregivers that they talk about having a morning practice, whether that be waking up and doing meditation, whether that be, you know, waking up and sitting in nature, maybe on a porch for a few minutes, or, you know, being in prayer. Those things can be really helpful when we think about different things we can do to really enhance mental well being and wellness.

Lovely, good for all of us, all around. How would you say that caregivers can balance the boundary between empathy and over extension? Seems like a difficult line to navigate.

It is difficult, and I think some of that, and what I'll say, probably for a lot of things in caregiving, is we need to revisit as care needs change, as demands ebb and flow, as our own personal bandwidth as caregivers changes. I think it's really important to kind of revisit for our caregivers. Sometimes it's even having just a few minutes to themselves, and that time maybe even being predictable and earmarked, they can really give kind of that respite and that relief, and so having this boundary between empathy and over extension, I would say a big piece of it is making sure that they're able to self care for themselves, and that they have the support to do so a lot of the family caregivers I talk about, I've talked with across the country, really wanting to have time to Go to their own doctor's appointments, to maybe going to dinner with their friends, or having a dinner party at the home, or being able to go to church practices and things like this. And sometimes this is a really heavy juggle, if your care recipient requires perhaps 24 hour care, and so really, being able to kind of lean on perhaps some other individuals in these paid and unpaid social networks can be helpful just to help with balancing that boundary between empathy and over extension.

Yeah, so is that a way that you would say that family members could help to better support caregivers who are struggling?

Yeah, absolutely. I think of this as this, like, in my mind, I envision this like big white piece of 3m paper with some fancy little marker. And we, like, almost, look at caregiving from an ecosystem. So what are the needs of that person who's in that ecosystem? What this might look like? Where might they be able to leverage some support to be able to do some of these other things. It's important that our family caregivers have time to go to the doctors themselves. They're oftentimes the one who may be supporting their loved one and going to their doctor's appointments and getting medication and maybe even administering medication and supporting some of these other health and mental health facets of life, and the socialization piece and the money management piece, but for them, certainly, you know, as we think about this caregiving ecosystem, having an opportunity to look at, sometimes on paper, sometimes in even these coordinated fashion, fashions and ways to look at like, where else can we lean in so there's maybe perhaps a Better delegation of caregiving duties, that it's not just falling on one person when I think about some of the work and that I've done and some of the things that I've seen in kind of real life, real contacts, when I even think about aging caregivers or somebody who might consider themselves as part of the sandwich generation, is sometimes what we see in families.

And part of this might be predicated on just geographic ability and reach is that one, maybe adult child is caring for an aging parent, and there might be four children in that family. And so while perhaps some of the duties would naturally kind of fall on one person and they're willing to do it, there is a large risk for burnout and exhaustion and resentment and so even thinking about, are there other things that can be delegated out? Could somebody maybe do the grocery shopping? Could somebody maybe take a drive with that person to a doctor's appointment, just to kind of delegate out in more of an equal way? Things aren't always equal, right? If we look at any family, it's not you know this for that, but you know that delegation and leaning on kind of these supports can be really helpful.

Yeah? So is that a way that you would say that professionals can help family members navigate this situation, or what other ways? Yeah, I

would definitely say so. I think from a provider or professional standpoint, there's a lot of things that we can do. Sometimes families almost need somebody along that journey to even do some of this planning work that's required when we start to think about planning for and coordinating the care needs and elements. One of the pieces I published with Dr Jillian graves, who's a good friend and colleague of mine at Eastern Michigan University, we looked at future. Planning. And what we found was is that parents, aging parents, were so busy and so perhaps overwhelmed with the current day to day, that they weren't actually able to plan for the future. And if there's a way to even look at from a provider standpoint, how do we help people in the here and now with where they are so that they are able to kind of look at the delegation of time that can be offered from maybe other family members or paid networks or paid supports or respite care, and then how do we actually be with them on that journey, as they navigate even just thinking about when care needs change, or when perhaps that primary caregiver changes because of a death or because of an illness or because of their own health declines, or because maybe they're just no longer able to for whatever reasons that might be.

And so yes, I think having providers and professionals navigate that journey is really important. Here in Michigan, we had a family support navigator program, and I'm really big on peer to peer supports when done right and when done effectively and efficaciously. And our family support navigators were geographically located throughout our state. They understood the aging services, they understood the Disability Services and Supports for caregivers, and they were able to walk with other aging caregivers, kind of along their journey as they navigated services in what I would consider these times of transition, so as our aging caregivers are navigating services for their loved one and themselves, thinking about these creative ways to actually find the services, navigate the services And then access services so that they are not always tasked with so much. So I think there's a lot of different ways that it can be done, and sometimes there's these really wonderful, formalized programs that can do so in a way that somebody actually feels very connected to somebody, and that that person actually understands that caregiving journey, even outside of the professional, well, realm.

Yeah, very, very practical and very applicable and helpful. Thank you for that. There's definitely some themes that keep emerging here that I hear you. What about culturally or generationally, and how the expectations might differ there influence how people experience and approach caregiving?

Yeah, that's such a great question. I live in a very densely popular, populated part of Michigan, and I've worked with a very diverse groups of families for a number of years, just based on kind of where I live. And it's very interesting to see even some of the recommendations could be considered very, very offensive in certain cultures. And so as we think about how culture plays in to how culture factors in, how it plays a role in caregiving, where maybe the expectation of who is to care and how that care is to be derived, it's important to kind of think about while we might think, you know, hey, this is probably what it's like in this culture, oftentimes I ask, you know, what are your hopes? What are your dreams? What are your expectations? Where do you see that coming from? We want to help fill in the gaps and provide resources and supports.

Here are some things that we might think about and recommend. And oftentimes I do this in the context of transition planning, when I'm working with parental caregivers who have adult children with disabilities or adolescent children emerging adults with disabilities, you know, thinking about, you know, what would even be an acceptable type of care? It's interesting. I published a piece with mentor and colleague, Dr Arlene Weiss, and we looked at services, and we used a medical model, and we combined it with another framework to look at services in disability and caregiving. And it was really, really interesting for me, because we think about services, are the services accessible? Are they affordable? Are they acceptable? And we think about the role that culture plays in even receiving services, individuals have to feel that that is an acceptable option. And in some communities, they would never put a loved one in perhaps a different living arrangement outside of the home, because it is not considered an acceptable arrangement. And so knowing those things, and certainly providing people with a spectrum of options, but really knowing where kind of the cultural, the cultural beliefs are and influences are, is really, really important as we we have these critical conversations and caregiving and transition.

Yeah, I can see that there being a lot of variance there.

And yeah, it's very interesting in terms of, you know, what people feel comfortable with. And it makes sense, right? Our caregivers, you know, we are consumers. We want our the supports to be things that really hold true to what we believe. And. What we value and align with with those elements as well.

If you could speak to a caregiver who's feeling completely overwhelmed right now, what would you want them to know?

You know, I think there's so many things Shannon, because I think when we start to think about the multi complexities of caregiving, but I think the main thing is, I just would want to thank them for what they're doing, and empower and encourage them to keep going and really give them, perhaps just the little nod in their head, the little information, just to really recognize it, that it is okay to get some help, to get some support, and that this is a journey that really requires a community.

Well, I'm sure those that are listening right now really appreciate that. Along those same lines, what's one piece of advice that you wish every caregiver could hear and truly take to heart?

It's a really great question. So in almost all of the PowerPoint presentations that I do for your company, I have a picture of a peony flower, and you're not familiar with Peony flowers. There's a few different meanings behind them. Some talk about flourishing, and you know, these rich experiences and prosperity. But the reason I put it there is there is some information that talks about hope. And when I think about our caregivers, and I think about the beautiful work that they're doing, I have that penny in the in my presentations to remind me of the work I'm doing and what I really am hoping to convey to anybody out there who's listening. And so I would just, you know, want to instill hope. Because I think when we think about that piece of advice that they're doing, I would want to just reassure them that what they're doing is an arduous task and arduous lift, but but some of the most beautiful work that can be done in this world. And so, you know, if I could instill hope and just to encourage them to keep going and to fill their cup when they're able to, that would, that would be the advice that I would give.

The other piece of advice for caregivers is that it can be so hard to juggle everything. As caregivers, we're oftentimes face juggling so many roles, so many hats, so many responsibilities. And, you know, as our caregivers juggle and navigate roads that they never thought that they would be on. You know, again, I go back to that self care and wellness. We are going to be able to pour into somebody else's cup when we have something in our own. So continue doing what you need to do to refresh to the extent that you can, even if it's, you know, get a drink of water, walk to the mailbox, get a couple seconds of sunshine on your face as you go through but, you know, continue caring for yourself on this journey as well.

Thank you that is. It's another lovely, powerful and uplifting message from you, and I really appreciate all of the passion and energy and commitment you have to this work and everything that you are doing and have done to to build this for other people and help them all navigate and, you know, feel, feel the hope. So, where can listeners connect with your work or learn more about what you offer?

Oh, I always love connecting from people and hearing about them and sometimes their own journeys. I am online like everyone else. I can be found on LinkedIn. I also have my email address that's readily accessible through make an impact. You can connect with me through my email and I'd love to see you on LinkedIn or hear from you via my email address. And I'd love to hear about you and what you do and kind of your journey and your work. Shannon, thank you so much for having me today. It's just such a privilege to have this opportunity.

I want to share a quote from former First Lady, Rosalynn Carter. She shares a famous quote, and it reads as follows, there are only four kinds of people in the world, those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers. I think of this a lot as we think about the universe, universality of caregiving, but also the importance of supporting our caregivers, who are near and far and sometimes in our own homes and sometimes in our backyards, and with our approximately 53 million family caregivers across the United States who are caring for all sorts of different people, sometimes children, sometimes aging parents, sometimes spouses, and sometimes many of these caring for multiple people simultaneously, you know, we think about the universality of caregiving and just how important this is, and really the need as clinicians to know who our caregivers are and know what they need and what would be really effective for their lives.

So I just want to thank you for the opportunity to be here today and for everyone, for your time, for listening, thank you, and thank you for sharing that it's Yeah, I love I love ending on. On a on a thinker, a perspective shifter like Yeah. So gray is Yeah. She, if you're not familiar with former First Lady, Rosalynn Carter, she has, she started a whole center down in the Atlanta, Georgia area, and does all sorts of the her organization does all sorts of really amazing caregiving work.

So cool. Well, thank you. Thank you again for being here and for another conversation, and all of the the information and compassion you bring and and for joining us. We're looking forward to more, and looking forward to having you speak to this more coming up at our aging Summit in September.

Thank you so much. Shannon, I look forward to the Aging Summit.

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