Podcast: Caring for Burned-Out Caregivers

Episode Transcript

Jenn: Welcome to Mindful Things.

The Mindful Things podcast is brought to you by the Deconstructing Stigma team at McLean Hospital. You can help us change attitudes about mental health by visiting deconstructingstigma.org. Now on to the show.

Jeff: Welcome and thanks for joining us. My name is Jeff Bell, and on behalf of McLean Hospital, I’d like to say we very much appreciate your interest in our educational webinar series.

We’ve titled today’s session, Caring for Burned Out Caregivers, and our goal is to explore how we can best take care of ourselves while taking care of loved ones as well.

It’s a balancing act to be sure, and while caregiving can be extremely rewarding, it can also seem overwhelming at times and can lead to physical, emotional, and mental exhaustion.

So just what is caregiver burnout? How do we know when it’s happening and what can be done to address it? Our guest today is someone who can shed some light on all of this and much more on the caregiving front.

Marie Clouqueur is a licensed independent clinical social worker and geriatric case manager at McLean Hospital in the Division of Geriatric Psychiatry. She has extensive experience working with caregivers. Marie, thanks so much for joining us.

Marie: Thanks so much, Jeff. Pleasure to be here.

Jeff: Well, I have so many questions for you and I want to tap into that expertise of yours, but I want to start with a working definition. For purposes of our conversation today, who and what is a caregiver?

Marie: So, a caregiver is someone who meets the needs of someone else. Usually, we think of that as a person, depending on their person receiving the needs, receiving the care has illness, injury, or disability.

And so, in the US we are thinking about millions, that would be about, well, in 2020 census, or the last time it was measured, we came up with numbers of around 53 million caregivers.

And the latest number I saw now or in 2023 is more like 63 million caregivers, although I didn’t see a good citation on that, so I don’t want to quote that directly.

Jeff: That’s a big number. And I imagine that with the aging of our population in general, that trend line is continuing to grow.

Marie: Absolutely. So, you know, from 2015, the number was about 43 and a half million, and then 2020, 53. And now for a 60, 63, 65 million. We just keep growing a lot, quickly.

Jeff: Is there such a thing as a typical caregiver? How would you sort of give us a profile of what that person might look like and where they might fit in demographically?

Marie: Sure, yeah. So, the majority of caregivers are women, about 75%, somewhere around there. And they typically are the median and the average age are around 50 years old, give or take.

Some caregivers are even in their young adulthood, but, and 83% of those caregivers are caring for someone over the, an older adult.

So most people are caring for someone, an, someone who’s aged, aged, but sometimes it’s a younger person as well, or sometimes they care for two generations at once.

Jeff: When we talk about caregiving, the scope of adversities is quite wide. Do you want to talk a little bit about what that landscape looks like?

Marie: Sure. So, you know, when we talk about caregivers and these numbers about how many caregivers do we have in the US, we’re talking about people receiving care who again, illness, disability, or injury.

So we’re not necessarily talking about parents as caregivers, although parents can be caregivers, but we’re not talking about just everyone, every parent as a caregiver in these numbers, I, there’s certainly overlap.

I don’t have the numbers of like how it breaks down, but in terms of what people are doing for caregiving, they are taking care of what we call ADLs, activities of daily living and instrumental activities of daily living, which would include things like, the typical ADLs are kind of can relate to your body.

So bathing, dressing, eating. And the instrumental IADLs are kind of one step removed. So shopping, cooking, house cleaning, transportation. And all of those things are, you could do that either living with the person or from more from a distance.

And these caregiving, you know, when we run the numbers of how many hours people are caring for someone, there’s quite a significant percentage of people who are living, if they’re living out of the home compared to the person they’re caring for, upwards of 20, mid 20 hours a week.

Now, when that care gets, when someone’s living with the person who’s receiving the care, those numbers go up pretty close to a full-time job, up in the high thirties, numbers of hours per week. And of course that’s a huge range. There are people who are not caring nearly as much as that.

And then there are some people, for instance, who are caring for someone living with dementia, which is one of my specialties that I see a lot of, they would say 40 hours a week and they would laugh, because they’re up, you know, almost all the time, almost 24/7 job. And so that’s kind of the range of where we go and some of the median.

Jeff: So Marie, we’re going to drill down and talk about all kinds of stressors for caregivers. But I want to start by accentuating the positive here. There are a lot of rewards when it comes to caregiving. Let’s talk about some of those.

Marie: Absolutely. And I think, you know, it’s a great place to start because it’s the, it is maybe the place to anchor it. When we think, talk about caregiver burnout, one of the antidotes to the burnout is to think about what the rewards are.

And so certainly when people become a caregiver, whether it’s by choice or just kind of by circumstance, the way it felt, a big part of it is, you know, we’re mostly talking about family caregivers.

Around 90% of caregivers of the stats that I mentioned are family caregivers. And only about 10% hovering around there are not by blood and maybe friends or neighbors. So a big part of people, their identity as a caregiver, comes from a sense of duty. A duty in the sense of a fidelity to a relationship, of doing right by somebody.

And the truth is that it does elicit from people what I’d say, a very like human response of gentleness, of closeness to a person, of that certainly helping role. And people feel good about helping one another.

And people feel good about, if we’re talking about someone who, caring for someone who is in a hard time in their life, certainly the aspiration to relieve some of that struggle and suffering makes us feel good.

And it gives us a great sense of accomplishment as well that we were able to do something concrete. And when it comes to family, especially where again, over 80% of caregivers are caring for the generation above them, it may be a sense of giving back in a great way.

Of a generation, probably parents who gave to us, who helped raise us, and now we give it back to them. So, this is a big part of caregiving that is not to be overlooked.

And then when we talk about then when we hold caregiver burnout, some of those negative feelings that come from burnout is from the ambivalence, “I don’t like how this is going, this is taking a lot for me. I feel kind of resentful about the way how much this is taking from me, but also, I really care.”

If it were just something that were hard and you didn’t want to do, you would, could let it go the way you might let go of a job, which is hard enough to do, but it’s just a job, you know, and there, you know, is ambivalence mixed in there.

But when you’re tied to family and to fidelity and integrity and doing right by someone, these rewards of caregiving really create some of the ambivalence we feel about even admitting that someone might have caregiver burnout, “How could I be tired of caring for my mother who raised me?”

And so, I think as we, you know, go on through this conversation, part of addressing caregiver burnout is to root ourselves back in, “What was I aspiring for when I took on this role of caregiving? What actually really gives my life meaning?”

And makes me say like, yes, I want to do this. How do we continue to tap into that, identify those things and tap into it such that it kind of changes our mindset?

To say in some cases, “This is really hard, and I do have to find some ways to change how this is going, but there’s nothing else I’d rather do,” you know, “This is the worthy, this is something worth fighting for, worth changing my life, worth growing for.”

Jeff: I think you’re tapping into that whole notion of values-based motivation and the tapping the power of purpose and service. I mean that really is a big part of this particular job field.

Marie: Absolutely, yeah. And if we didn’t have that, we would be in trouble. I mean, the other part of the numbers of caregivers is that when people try to calculate out the worth of all the care that’s being given by families who are largely unpaid, that the calculation is 470 billion, with a B, billion dollars of care is given by these millions of caregivers annually.

And you know that something around between 53 and 65 million caregivers of family caregivers is compared to the 4.5 million professional caregivers. So we just, this is a big scope of how our society runs, how our economy runs. And beyond the statistics of economy. It’s, we want to be cared for by the people that we love, and we like to care for the people whom we love.

So, it’s in everyone’s best interest and we, you know, the care often can be better, more comfortable. So, it behooves us as a humanity, as a society, to figure out how we can do caregiving better.

Jeff: Yeah. I’m so glad you brought up the family dynamic because this is not your typical nine to five job, and we talk about burnout on any kind of a job assignment, but when you’re talking about the family, there are a whole set of dynamics that come into play and we’re going to talk about those.

Let’s segue into some of the stressors that are put on family caregivers. Do you want to walk us through those?

Marie: Sure. So one of the stressors is that when we’re caring for somebody, it’s sometimes we’re also dealing with an evolving sense of the diagnosis or the illness. It may also be progressive.

And so, one of the stresses of family caregiver is that you’re both caring for your loved one while also trying to navigate the medical system, which we know is complicated. And the entities don’t always talk to one another. And so, a caregiver may be interfacing with many different people.

They’re also essentially managing someone’s care. They’re also looking for more resources of where can they get answers or if there’s a need that they are trying to fulfill, but they don’t know, you know, “Where can my loved one get care?” And then maybe they say, “Okay, I need home care. Which home care is the best?”

And so they’re become taking on this whole skill that requires a lot of organization, again, navigating the resources, collecting information, holding it all together. While again, if we’re talking about a middle aged person, they are likely very often working.

They may have, if they’re caring for someone of the older generation, they may also have a family of their own that they’re taking care of. So it’s an extra ball in the air, but that ball almost like has many other orbits of other balls that they’re trying to juggle.

So that alone can be dizzying. Then we have, it’s not just care of the day-to-day tasks of the, as I call them, ADLs, activities of daily living, of me helping with dressing or bathing. But there’s an emotional component to that, of very often, especially when there’s burnout, it’s not necessarily a smooth relationship between the caregiver and the care recipient.

The care recipient may be resistant to care, may not recognize that they need care or may actively say I don’t need care. There can be complicated histories too, among people of difficult ways of communicating that then you add a caregiving duty on top of that and the volume of that dysfunction, we might call it, just gets turned up very high.

When someone is living with the care recipient, there can be just a lack of autonomy or privacy both ways that the care recipient feels like the caregiver is just too much around them. And so those are, quickly pile up. I don’t know if I need to go on some of those stresses.

Jeff: It’s quite a list and it dawns on me too, Marie, that we really don’t get training so many of us, when we find ourselves in a caregiving position. We step into it and kind of have to make it up as we go in terms of the recipe to follow.

Marie: Mhm, absolutely. And speaking of not being trained, but in fact if we think, again, just by the numbers, adult children by the numbers are the main caregivers. You’ve actually been trained to be a son or daughter to your parent.

And now you need to step into your role of being in some ways sometimes the authority or the manager of your parents. So, there can be a lot of resistance from that.

And then between siblings, if you’re trying to divide, well, you as a sibling probably from the time you launched from your household, went off and had created your own career, separate families, and now you’re being asked to knit yourselves back together as kind of like coworkers. Well, that’s new.

And as with any kind of new situation, there’s a bit of jockeying for who has power, who doesn’t want anything to do with it. And some of the family dynamic roles that you may have seen as children are now playing out at the adult level with pretty high stakes. There can be a lot of disappointments, conflicts of opinions. So that, yeah, that is a lot.

Jeff: It’s a lot all the way around. Help us with another working definition here, caregiver burnout itself. What are we talking about? Is there a particular threshold? Is there a clinical definition of what burnout is? How do we know when we’re in that state?

Marie: Yeah, so, still working on a clinical definition of burnout. And so rather than go for kind of concrete definition, just a kind of a description of what it looks like and feels like, someone might say something like, I, “I feel like I can’t do this anymore.” That would be kind of a pretty clear thing.

I often hear people talk about how, they’re kind of, “I can only do this for X you know, maybe one more month.” I mean, I’ve had someone say, “I can’t do this for a single day more the way it is.”

One of the ways that I think about caregiver burnout is that the identity, caregiving is just one part of who we are as people. And what often happens in caregiver burnout is that one’s identity has become so consumed by caregiving that the rest of their identity essentially gets flattened.

We in our lives are so many things. We may be a daughter or son, a sister, a friend, we may have built a career for ourselves, may be a parent. And in many of those cases we, you know, we take, put on different hats and different parts of our personality come forth. Maybe we’re fun, creative, inquisitive, independent.

And when we see caregiver burnout, what I often see is people say, I don’t even know who I am anymore. I thought I was a fun person, I don’t have fun and I don’t think the person I’m caring for thinks I’m very fun either.

You know, it’s not.. And so one way of, without, you know, aside from a clinical definition is that you just don’t feel like you’re yourself, or you’re not your full self. There’s so much of you that is not being met.

Another sense that comes up with caregiver burnout is really a sense of incompetence and lack of confidence. That “I’m just not good at this,” or “My loved one is still struggling with this, I must be bad.”

You know, “I can’t do this anymore because it’s just not working, the symptoms aren’t getting better.” So the sense of the world is closing in that things even that you’re holding are kind of like falling out of your basket of what you can hold in your life.

And often caregiver burnout is, it’s not directly tied to, but one part of it can also feel like the care recipient, like their needs are not getting met.

Jeff: Are there particular emotions that come into play both naturally and perhaps accessibly when it comes to caregiver burnout? I’m talking about sadness, anxiety, irritation, frustration. How much of that is natural and comes with the territory and how much is something that potentially becomes problematic?

Marie: Yeah, absolutely. With caregiver burnout, we definitely see symptoms that fall under the umbrellas of depression and anxiety. So things like apathy, just feeling like I can’t, I’m not even sure what would make me happy.

You know, you talk about the, someone asks will ask, be asked, what would you like to do for enjoyment? And they say, I ju- I don’t even know. And anxiety where they’re, every decision is laden, not with just making that one decision, but if I make this decision, what will happen next and what will happen next?

This really heavy weight of what is to come, a heavy feeling of often of guilt that they’re not doing enough or that having any kind of fulfillment themselves is a betrayal to the person they’re caring for who is suffering.

And then another big, very big emotion that comes in is a sense of loss and or grief, which can be both directed at the person receiving care who for instance, in one of my specialties in dementia, this degenerative disease, that the person I’m caring for doesn’t even feel like the person that I’ve known my whole life. Spouse or parent.

And in a sense of loss and grief for one’s own life as a caregiver. Of what have I given up, what am I not able to do, what have I said no to by saying yes to being a caregiver?

And that is part of what ties back to where we started the conversation, rewards of caregiving, of saying, “I took this on thinking I’d get some rewards and all I feel, or all I feel like I’m sensing is the loss of what I’m not doing. Surely I’m meant for more than this is kind of sometimes the feeling that people get.”

So this deep sense of loss, grief, guilt. Going along with that, a sense of isolation, cut off from when’s social supports.

Jeff: Marie, when you work with caregivers generally speaking, what is the level of self-awareness? Are they able to see that they’re falling into this trap of caregiver burnout? Or does it sometimes take somebody else to point it out to them?

Marie: Yeah, I think this goes along with some of that ambivalence that I talked about, that people generally see, know that things aren’t the way they should be. They don’t feel happy. They may know that their care recipient still has needs that are unmet, or that their relationship with the person they’re caring for doesn’t feel optimal.

And so they’ll know something is off, but they won’t necessarily know how to fix it. And this is, so when I talk about addressing caregiver burnout, part of what, maybe the main thing that I try to do is to switch from mindlessness.

And I don’t mean that you’re not, you’re disregarding things, but you’re, you’re kind of in this groove that this is how it is, from mindlessness into mindfulness.

And I don’t, and mindfulness we talk often when we’re thinking about like meditation. And I’m talking about more of it in the sense of having clear in your mind what is happening, observing what’s going on, and saying, in light of this, what should I do?

And if folks are looking for that distinction of this kind of mindfulness that I’m talking about, Ellen Langer is a researcher who does a lot of work on mindfulness versus mindlessness and tasks.

It’s a lot of great study in there, because it’s different than the often the lingo we talk about for mindfulness, as I said, is kind of deep, which I also support. Deep breaths, mindfulness, kind of feeling your breath and being present in the moment. This is present in the moment with your eyes wide open, taking in the scenario around you.

And so, I lost your question in there, Jeff.

Jeff: Well, no, actually I think you’ve answered it very well and it’s a perfect place for us to move into some of the strategies for dealing with caregiver burnout. And one of those strategies is peer support.

And you’re doing some groundbreaking work there at McLean with support group approaches to dealing with caregivers. Can you give us sort of the backstory as to how all that came to be? And then I’d love to hear some of the lessons that you’ve learned from that experience.

Marie: Yeah, so the first group that we’ve, we launched in here at McLean for caregiver support was, is for people living with their spouses of people living with dementia. Originally this grew out of when COVID-19 broke out and we paused our clinical trials for people living with dementia.

You know, there’s this big clinical support that was not available for those first number, many numbers of months. And so, where they, the spouses and their loved ones who were in the research studies had regular contact with clinicians, all of a sudden that was suspended.

And so, we brought people together for support groups. And particularly with these caregivers, what we immediately sense, and this is no surprise at all, is that, you know, these caregivers had a lot in common.

And what, as we’ve grown in these, in any support group, caregivers or for people living with dementia or any other condition, is that when you come together and you say, “Oh my gosh, these people get it.”

I, you know what, you can get support from someone like a clinician like myself hopefully and say, “Okay, this person has seen this before. I can hear that it’s normal.” But when you hear it from your peers, even it, it far surpasses even a very close friend who has known you for a long time but can’t quite grasp what you’re coping with.

So, there is a sense of relief and part of one of the tragedies of caregiver burden is that it makes people feel so, so isolated. And the negative feelings, I feel, again, this ambivalence of sometimes you feel people, caregivers might say, you know, sometimes I, I almost hope that this disease just hurries up so that we can just get it over with.

And they feel, ugh, that’s so, feels so taboo to say, because they don’t really want their loved one to be in any worse shape or to pass away. But to be able to say it in a group that says, I know what you mean, is huge. And from the standpoint of isolation, there’s more and more inform- research and data to support the importance of social connection.

In some studies, and you know, we don’t have to get too far into the research, but show that social connection in terms of things like mortality, quality of life, outpaces, even some of the very well-known health determinants like smoking, alcohol use, even physical activity, level of physical activity, obesity.

Social connectedness, it is a, is a big determinant of our health and we’re just, that’s just started to come in the radar. But anyone who’s, who’s experienced the consolation of having close social networks can attest to it.

And that is one of the biggest things that I work with caregivers about is if caregiver burnout, part of the reason it happens is a flattening of one’s identity, as I would describe it. Then bringing social connectedness of mirrors of people who know us, who can see that dynamic parts of us actually then recreates our identity.

So that caregiving is one part, but we have so much more, and it can show us because of these other relationships we have, that even when our caregiving is struggling or, you know, can need some improvement, these other relationships are where we can grow in our sense of fun, our sense of creativity, and then bring that back as part of ourselves into our caregiving relationship.

And what I’ve seen in my caregiver support groups, and I’m launching some more caregiver groups imminently, is that people grow, people become better caregivers, happier, more gentle with themselves and forgiving.

They become more creative and then they share this with other people and feel great encouragement, such that they don’t need as much individual support, for instance, from me, or from another kind of counselor.

That the group holds people and fills that gap in a way that is one step towards social connection. Many caregivers, especially if they reach caregiver burnout, have really let their social connections, friends, suffer. And some of that was necessary, you know, they needed to because there was so much time that was needed.

But when we’re looking to expand social connections, some of the things that we’re looking for in a friend or in a group are things like, if you can choose, or if you are choosing to cultivate new relationships, someone that provides or has some within this friend, emotional stability, good communication skills and somewhat organized.

You know, they’re not kind of just always figuring out where they are so they can be kind of consistent. And what we can see is that a support group fits all those things. There’s emotional stability, because there’s kind of an understanding this is how we are in the group.

So, you know, everyone has their days, but there’s kind of a cohesiveness that holds people’s stability in there. Communication, often there might be a group leader or there’s again, this way of communicating, this is how we talk with one another.

And then organization is like, we meet at this time, we start at this time, we end at this time. And so, a support group for someone who doesn’t have a very strong social network can be the first step of providing those three things for you, which you need. And some people may say, “Oh, this support group, I don’t get everything.”

Well, you don’t have to get everything from this support group, but if you can get those three things, then great. And in addition, the key is that you can also get this experience of universality, that other people are going through this, so.

Jeff: This model sounds very powerful, and I know the question’s going to come up. How can I find a support group in my area? Is this a dynamic that’s being played out in support groups around the country?

Marie: Absolutely, yeah. And so there are support groups for all types of affinity groups. Certainly the Alzheimer’s Association, if we’re talking about dementia, has support groups all around the country.

There are local chapters of the Alzheimer’s Association and there are tools within the Alzheimer’s Association’s website that can kind of navigate you to that. But there are of course many other, caregivers for many other conditions.

NAMI, the National Alliance on Mental Illness also has their own support groups. Things like the Parkinson’s disease, their own, even lots of conditions, of disabilities have them as well. So, I’m a huge proponent of the support group. And that’s, those are some places to start.

Jeff: Yeah, again, it’s such a powerful way to approach some of these issues. I want to circle back to the support group model. I do want to ask you about respite care. That’s come up a lot in conversations I’ve had with people who are dealing with caregiving situations.

I’m not all that familiar with what those options are. Can you walk us through what might be available to a typical caregiver in terms of respite care?

Marie: Mhm, sure. And just for what, when we talk about respite care, there are strategies that we can, and that I’m sure we’ll get to about how to start to address caregiver burnout in terms of what can you do on your own as a caregiver.

And respite care is one tool that can help relieve some of the stress, which is that someone else comes in and or your loved one goes somewhere so that you as a caregiver are relieved for a certain amount of time from those day-to-day responsibilities.

And one reason that this is important is, one, if you have your own medical concerns or some other kind of time dependent duty that you need to take care of, that you actually have the option to be able to do that. Like having surgery, or seeing a loved one who’s maybe in a different state for a particular event, life event, then you would call in respite care.

So, respite care, and again, I specialize mostly in older adult care. This can look, take the form of having somebody usually maybe through an agency, a home care agency come in and stay with your loved one, maybe 24/7 care, or maybe just during the day handle the ADLs, like medication management, cooking, companionship.

Another model is for a person to go to live in a residential setting for a time. And that might be, for instance, at an assisted living facility or memory care.

And you can find these through, one great resource for finding these kinds of services is through, again, for older adults, through the ASAPs, aging point access, sorry, Aging Services Access Points, ASAPs, which would be here in for Belmont is Springwell, or other elder services.

So, there they can, they, every ASAP has an information and referrals line where you can get kind of a first pass at what local agencies, home care or assisted livings and things might offer.

Now I’ll say most times respite care is not covered. This becomes in a private pay endeavor, which is quite expensive. However, there are some programs that again, you’d, you get through your ASAP, your elder services local chapter that can cover some of these depending on things like income and situation.

And the reason to use respite care is partly to give yourself this space to think about these bigger pictures. To assess, to make a new plan for what is going to be different when I come back, when I’m back as the primary caregiver to having either kind of refilled my tank in some ways.

Or to have a different mindset or approach to how I care for my loved one such that I, I’m not just restarting the clock to the next feeling of being burnt out.

Jeff: Makes sense. I want to weave in some questions that are coming in from our attendees and there are a number of questions. So let me just dive in here. With COVID, everything essentially turned online.

Do you find that there is a difference in the benefit from having an online support group to a support group that actually meets in-person? It’s a great question.

Marie: Yes, so the, a benefit of having as an online support group, I’ve found it’s, for the folks who attend, it makes it so much easier to attend.

If you’re a caregiver and you’re a full-time caregiver then to go to an in-person support group means that you need to get someone else to come and, or you bring your loved one somewhere, drop them off, and then transport yourself to the group, park, go to the group, go back to your car, drive back, you know.

And for folks who can just access online, I found it to be much easier in general for all of our groups that we offer here at McLean, the attendance rate just seems to be higher. And also, we have a broader access of, you know, we can have people joining from Western Massachusetts who don’t need to come all the way to McLean, for instance, who can join.

And we’ve even had caregivers certainly in my groups who say, excuse me for a moment and get up, kind of attend to their loved one and come back to the group. Which of course would never be able to be the case in an in-person group.

So, I think in general, online provides more access for folks. Do you lose something by not being in-person kind of face-to-face? You do, but I’d say goodness, especially if we are combating burnout even in online group missing that in-person kind of physical connection that happens is I would still take online groups over in-person.

Jeff: We’ll talk more about caregiver burnout as we’re defining it here today. But I do want to extrapolate the worst of all this as well and ask you to talk about some mental health conditions that can develop for caregivers. Things like clinical depression and anxiety disorders.

What should we know and when should professional help be brought into the mix?

Marie: Well, certainly a clear threshold is if one is feeling like deep, deep despair of I’m not sure life is worth living, you know, kind of suicidal ideation or homicidal ideation, that’s a kind of far out landmark.

And then to kind of bring it back often what tell us that we need help are some of the physical signs as well. Things like changes in high blood pressure, significant weight loss or weight gain. But just the feelings of persistent sadness, tearfulness, you know, tearfulness increasing in frequency, feeling like you just don’t want to do it.

And of waking up in the morning with dread of like, I don’t want this day to come. That is enough. That kind of thing if it’s happening every day for sure, or even not quite that frequently, it starts to tell us this is, these are, these are well within the umbrella of depression.

Anxiety in terms of, sometimes the way it looks is just feeling always keyed up and losing your temper too easily. Now this is not to say that, “oh, you have anxiety,” but I bring it up as an example because it doesn’t feel good to you to, to act like that.

And when we have feelings that don’t feel good, that feel like this is not the kind of person that I want to be. I keep doing this thing that even that I don’t like, I don’t like myself, those are signs to us that things aren’t the way they should be.

And so, it is first of all in your best interest and then of course secondary for the person you’re trying to care for, that they’ll get a better side of you if you have that side to offer.

Jeff: That makes sense. And sometimes it can be really difficult to reach out for help, but what I’m hearing you say is sometimes you actually need to take that hard step and ask somebody professional to give you an assessment of whether or not you should be doing some treatment.

Marie: Yes, absolutely. And you know, what that treatment can look like, can be even very short term. Some folks, they don’t need, they’re afraid to open the box because they say, “What if I find out that I’m a bad person? What if I find out that I’m just, you know, ungrateful and selfish?” And I have yet to meet any of those people as caregivers.

Number one here at McLean I treat caregivers who have met the threshold of having a diagnosis of anxiety or depression or kind of a related symptomology.

And so, you know, just to, to kind of preview for any viewers what it might look like.

We’ll probably take you through some steps of thinking about if, you know, assuming you’re going to continue to be a caregiver because there’s a part of you that certainly wants to, does not want to give that up, but you also feel dissatisfied with how it is, what would be some things that would make you feel a little bit better?

And to kind of help you think about that, they might say, what have you done in the past in different area arenas of your life, socially, culturally maybe, intellectually? So that we have kind of a diverse idea of activities.

And we’d say, okay, well meeting with friends and then we start feeling a lot of resistance from the caregiver. Well, that’s not possible. And I would say, to that I’d say, yes. If it were easy, you would’ve already done it. So let’s assume that it’s hard and think about what are the actual steps.

One of them might be maybe you say, I don’t have any friends who I can talk to right now. I say, okay, well is there anybody you know who you’d like to be a friend? Again, with the ideal, some of the ideal characteristics, emotionally stable, slightly organized, fairly good communicator.

And we say, well, why don’t you just try to call that person once a month? That doesn’t feel like too much to ask of a person, once a month at a like a 20 minute phone call. And then all of a sudden, this thing that looked like a step this big becomes smaller and we start to grow that.

And that kind of thing or attending a talk or something, that’s called when we start to make a plan of doing, of what to do to get out of our routine, we call that behavioral activation. Other things that therapy can do is to help us identify where we have beliefs that are actually holding us back and maybe paralyzing us.

So, things like, “If I can’t do this on my own, I’ve failed as a caregiver.” That’s a pretty big, big belief that makes you, that can paralyze you, that you would never want to reach out for help because it might mean getting help means something bad about you or that you’ve given up.

The way I would change that is, you know, you know, how well do you think you’re do- how good do you feel about yourself? I don’t feel good about myself at all, or I feel pretty bad a lot of times. How well do you think your care recipients being cared for? “Well, good, but you know, there are a lot of things that just, they’re never happy or it’s not good enough.”

I say, okay, so actually getting help would say, I see what’s going on. I’m not happy, they’re not fully happy. They’re, you know, the needs that I should hold in my basket are falling out.

Wouldn’t it just be a good idea to see if someone else might be able to catch those needs or see if maybe the ones that are falling out the most important, I put those in the basket first and the needs that are less important fall out and someone else can do that. And that’s not called failure, that’s called wisdom.

Jeff: Hmm, I love that approach. Great question just came in from an attendee who’s, who asks, how can caregiver’s stress impact one’s physical wellbeing? Let’s talk about that nexus.

Marie: Yeah, sure. It absolutely affects someone’s wellbeing, physical wellbeing, it, that the symptoms of anxiety, stress, distress, depression, those bad feelings are actually the, our first wave to say that something’s not right.

But if we’re not going to, if the circumstances have been such you haven’t yet been able to address them for whatever needs, for whatever reason, then they’re going to come out in other ways. Our body takes these things in, I mean, it’s all connected.

And so, very often people, it can manifest in things like high blood pressure and there’s higher levels. This is tracked, I mean, study after study of even things like stroke or in early death as well, heart disease, diabetes, that these conditions, even if they’re preexisting, they get worse.

And so, this is, I would say this is the body’s way because we’re a holistic self, of screaming “things aren’t right, please, please address the situation.”

And I, and so part of it can be, you know, sharing some of the load with other people through our natural support systems, which again, if we don’t have people we can ask, then I say, well, we better start cultivating those relationships.

And not that next week someone’s going to be able to come and kind of sit with our loved one or take them for a walk. But if you really don’t have those, then I’d say we better start with a phone call to a friend that we do month to month, so that six months from now we actually have one option, maybe we have two.

And a year from now, in the best case scenario, we actually have cultivated a network in which you can be happier because you can spread out some of those responsibilities and likely your loved one will be happier too. One because they get a better side of you, but also they’ve had their own kind of network knit around them to hold them.

And I would say, you know, when as I talk about caregiver burnout, the opposite of what I’m talking about is, is growing as a person, growing into more of the person that you would like to be anyway. So, for instance, you know, I talk a lot about what’s the story we’re telling ourselves about this.

The story about caregiver burnout goes like this. “I was living my life and then I got these more responsibilities and my life got worse and worse and worse. I became less of the person that I wanted to be, even as I was doing the thing that I kind of feel like I should want to do.”

Well, that’s not a great story. That’s actually very tragic. What we are drawn to as humans is a very different story.

When we can say “in the face of great adversity, I saw my weaknesses and I saw my strengths. I tried to do the things that I’m already good at and the things that I wasn’t really good at, like maybe asking for help, like in times of stress, being able to self-soothe.”

“I practiced getting good at those so that by the end of my caregiving, whether that’s three months or 10 years, I became, I developed new skills because I had to. That was the adversity I had to, but I did it.”

That is a story that I think we all can live and we all aspire to. And that idea of mindfulness is that we go in with this mindset or we are able to pause for long enough to say, “How am I living this?” “Is this the way I want to live it?” And if not, “How would I do it a little bit better?”

Jeff: Mm, I love that approach as well. I want to circle back to something you touched on earlier, and that’s family dynamics. Family dynamics can complicate situations for caregivers, but I would imagine there’s also some built-in support within families. Can you talk about that?

Marie: So there can be support within families. Some, most times we have to uncover it.

Jeff: Mm.

Marie: This is another I, you know, people say when something happened, our lives changed. When this diagnosis happened, our lives changed. And I’d just like to say that for anyone listening, your job as a caregiver as a support is to help that story be a change for the better.

So, I don’t, there are some families in which people rally, they know their, they kind of know their role right away and they do that. I never see those families because I work with folks who have not been able to kind of get into that mode.

But what I can say is that when people become mindful of how they want to live, they start to call each other into that vision. So they may say, you know, we’ve done a few hospitalizations with my mother and every time, you know, this person takes on that role, this person questions all the decisions.

And we say, how can we do that a little bit better? Through delegation, through better communication, through having a mediator maybe. And what I’ve seen and what is always the goal is that with every iteration of a challenge coming up within the greater challenge of the diagnosis and the condition is that we do it a little bit better.

We become a little bit more of the brother I’d like to be, or the sister I’d like to be, that through support, the spouse who’s a part of it may be able to ask for help more.

And what, when one person starts to become a little more gentle, a little more patient, it often softens the whole family so that we end up by the end of this, this journey, as a more cohesive family rather than the story of “This disease hit and it really just sewed more resentment than from what was already brewing.”

So I, my goal for every family that comes through my doors is that they become a better family, a more functional, more communicative, more loving family through this.

Jeff: We’ve had a number of questions come in regarding resources and several of them have circled around or centered on starting a support group or joining a support group. I know you touched on this earlier.

Are there specific resources if somebody wants to start a group in their area? What would you suggest as a first step on that front?

Marie: Yeah, well I would tap into, you know, there’s caregivers for so many different conditions and first contacting some kind of hub of the local, so there are local chapters of many, many branches. If you’re thinking about older adults, then a Council on Aging might be a first place.

And then for some of the other diseases, you know, starting your own support group in today’s day and age where a lot of these things are virtual, choose the social media of your choice as well.

Posting there. I, that’s a good question. I haven’t ever had someone wanting to start their own support group, but-

Jeff: Well, I like your approach of starting by not reinventing the wheel, starting with the local advocacy organization.

Marie: Yeah, I-

Jeff: What other resources do you want to put out there, Marie, for people in terms of books that they might want to read, organizations they might want to reach out to, not necessarily just to start a support group, but for tips and advice and support on the caregiving front?

Marie: Absolutely. So, again, because my specialty is dementia, one of the books that I feel is just such a, an extension of the approach that I do is called “The Complete Family Guide to Dementia.” And this was co-authored by one of my dear colleagues, Dr. Brent Forester, and another wonderful collaborator, Tom Harrison, “The Complete Family Guide to Dementia.”

This really speaks to folks who are burnt out and how to, how to kind of walk them back and focus on the things that are most important to you. That’s a good book.

In terms of hotlines for when, especially in the moment, if you need some help, The Alzheimer’s has a national hotline, as does NAMI, the National Alliance for Mental Illness.

And there’s another one for parents called Parental Stress Line. And all of these are 24/7 hotlines. Easy to Google and find them.

And they can either be your, you want an answer for something or just kind of the gateway into getting resources for questions that you have or needs that you’re not sure you can meet on your own.

Jeff: Before we wrap things up, I want to ask you to pass along a message directly to somebody who might be struggling with caregiving right now. You’ve infused a lot of hope into your messaging overall today.

What do you want to say to that person who might be saying, this is really tough and I’m not quite sure what to do to make it all work for me?

Marie: Yeah, I would start by saying, taking a step back and saying that you matter as a person beyond what you can do as a caregiver. And you come with sets of strengths, things that you’ve done really well throughout your life, and you’ve probably cultivated those very intentionally.

And the things about caregiving that are really tough, may be things that didn’t serve you in those roles that you were in, but they would serve you now to develop those and consider them as tools in your toolbox.

That it’s not that you can’t do it, it’s that you don’t have those skills yet. This is a growth mindset, but think about what might be something that you’d like to do better. You’d like to be able to say six months from now that you’ve got it, now you’ve got it better.

And start with those things. We’re talking about little building blocks. Every day matters and every choice that you make is kind of practice for the caregiver you’d like to be.

And beyond that is, you know, stretching your identity to what other parts of you where it’s easier to access some of those strengths might you cultivate so that you feel more of a person than just a caregiver.

Jeff: What a beautiful place to wrap things up. A beautiful place to wrap things up. Marie, thank you so much for your time and your expertise today.

You’ve shared a lot of both with us and we appreciate it very much and we’re going to have to have you back on because we could do another three or four hours on this topic, I’m sure.

Marie: Thanks so much. It’s really been a pleasure and I look forward to continuing this good work of supporting caregivers.

Jeff: Very good. Well, hope to see you again soon, Marie Clouqueur. To all of you who have joined us today on the webinar, we appreciate your time, we appreciate your interest, and we hope you’ll come join us again soon. Have a great day.

Jenn: Thanks for tuning in to Mindful Things! Please subscribe to us and rate us on iTunes, Spotify, or wherever you listen to podcasts.

Don’t forget, mental health is everyone’s responsibility. If you or a loved one are in crisis, the Samaritans are available 24 hours a day at 877.870.4673. Again, that’s 877.870.4673.

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The McLean Hospital podcast Mindful Things is intended to provide general information and to help listeners learn about mental health, educational opportunities, and research initiatives. This podcast is not an attempt to practice medicine or to provide specific medical advice.

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