Caregivers and compassion fatigue

Transcript of Interview: “Caregivers and compassion fatigue”

Mike Barnes: I think we all know that being a caregiver is tough. It’s not easy. It’s a tough job.

Kim Barnes: It can be very challenging and really just wear you out. So today we are gonna bring to you Amy Wright. She has a company, Amy Wright & Company. She is an aging and end of life educator and advocate, with a background in hospice.

So you’ve done a lot of, a lot in this, in, in this work. Talk a little bit about, we hear the term compassion fatigue, and I know we’re exhausted- … especially if you’re doing hands-on care of your loved one. But talk a little bit about what that really means.

Amy Wright: Sure. I think we all can relate to the fatigued part.

But if you, wondered if this topic was for you and did a quick Google, Google would tell you that it’s indifferent, indifference to charitable appeals on behalf of those who are suffering. that’s a little jargony for me. Right, right. I prefer a definition by a, licensed clinical social worker who started talking about this and experiencing it and researching it when he was doing some crisis counseling in an inner city emergency room.

his name’s Carl Laroe, and he sums it up as a debilitating weariness. That just sounds as heavy- Heavy … yes, and i- it’s essentially absorbing the heartache and the suffering, of the people around us, and whether we feel or we actually are responsible for- providing relief of that.

And I think it’s so relatable to, the folks in your, your group and our greater community because it’s a relatable experience. that’s, whether it’s a result of being ill-equipped or ill-prepared for the challenges that come with caregiving, or simply how long we’ve been at it with no end in sight.

Kim Barnes: and I think, don’t you think too that especially since it’s your parent or a loved one, there’s so much, there’s just so much emotion involved. Because it’s so hard to watch somebody that you care so much about having a tough time.

Amy Wright: The investment, for sure.

Kim Barnes: And how do you know if you are suffering from compassion fatigue?

Amy Wright: you’ve got really good odds if you’re a woman. I want to give you… No offense, Mike. That’s all right. I want to lay out for you, kind of some data around it. I think that it’s easier to quantify some of these things- if you’re a numbers person in particular. before and, during the pandemic, f- family caregiving responsibilities mostly fell to women.

It’s about a 60/40 split. one in 10 women said they were taking care of someone in their family prior to the pandemic, and an additional one in 10 have said they’ve got new caregiving responsibilities that’s, you know- occurred during the pandemic.

on average, a caregiver is 49 years old, providing, 20 hours of unpaid care a week.

So while it’s 60/40, in the gender split, the disparity’s a little bit greater when we’re talking about the unpaid care.

Kim Barnes: So

Amy Wright: women are providing those 20 hours, which comes out to 62%. And men are providing about 38%.

these working daughters are employed. they’re of the sandwich generation, meaning that while they’re taking care of y- potentially an older parent, they’re also taking care of children still in the home.

So they’re trying to do that, do all of their, Take care of

Kim Barnes: their

Amy Wright: parents,

Kim Barnes: everything. you’re running carpool.

Amy Wright: You’re

Kim Barnes: running

Amy Wright: carpool for your kids- Doctor mom.

Kim Barnes: and taking Mom to her doctor’s appointment.

Amy Wright: Yep, yep, while taking care of ourselves. And- Right … and I know for myself I’m the first thing that falls off of my, to-do list.

26 are pa- 26% are parents of a minor. 50% support an adult child. So if you look at the fact that we’re providing those 20 hours of unpaid care-

on top of, 50% of us providing care for a, for an adult child, we’re stretched pretty thin.

So, the framework for this is already laid.

BIPOC women particular, Black, Indigenous, people of color, they are, twice as likely as White women to have a high school education or less. And minority women typically face greater challenges accessing paid resources to caregiving. So the deck is stacked a- against us in this regard.

Kim Barnes: And what are those si- like, what are those signs that… How do we know I’m suffering from compassion fatigue?

Amy Wright: Okay, with my background in hospice, I love hospice so much because it’s holistic. Some people hear holistic and they think, like, crystals and feathers. It’s not that.

It means that we tr- whole- hospice treats a whole person.

So we’re looking at the, physical signs and symptoms of our patients, emotional, spiritual, the whole enchilada. And In that regard, we have to look at our, signs and symptoms of compassion fatigue, through that lens.

We have signs and symptoms in all, from all of those perspectives. Physically, you might be experiencing a more rapid pulse-

or, insomnia, inability to sleep. On the flip side, maybe you’re fatigued and find yourself sleeping all the time. you could become immunocompromised, a weakened immune system just from the, the feeling that you’re dragging.

memory problems. when you’re trying to remember doctor’s appointments and all the information that gets downloaded at those appointments, while also keeping the ballet schedule and who’s gotta be at practice when, and the, the big work projects and, oh my gosh, remembering to get groceries.

You can imagine why- Right … there’s so much, only so much capacity. and then weight changes. some people from the stress stop eating. They lose weight. some people gain it. I eat my feelings, so that’s relatable for me. and then GI issues. whether to call a spade, whether we’re from the stress we become constipated or the anxiety we just have diarrhea all the time.

Mike Barnes: I, I think a lot of times people don’t see it in themselves, so I think it… maybe it’s good for people to look at your loved ones, your friends, and see that, oh, my gosh, you’re taking… spending so much time taking care of your loved one-

that you’re forgetting about yourself. And the, and- And

Kim Barnes: calling that out

Mike Barnes: and the fatigue is really setting in, and you gotta help somebody in that respect.

Amy Wright: I think that culturally it’s more normative, for us to embrace toxic positivity, where, it’s that, like, good vibes only culture, and that’s why I think your group in particular is so supportive. it’s such a resource because it’s a safe place for people to say, “I am struggling.”

Or, “I got the… Mom got this new diagnosis, Dad’s advancing in his diagnosis,” and as his- disease progresses, there’s new stuff to handle, and I don’t even know the next right question to ask to be able to- to get it resolved.

Kim Barnes: one of the things that I think that oftentimes as a, as an adult daughter, helping with my mom, or sometimes I think, “Okay, am I just not doing something right,” or is it s- is there something that’s causing me to be so stressed about this?

And I think that- talk a little bit about that because I think that it’s easy for us to think that we’re not doing enough, or maybe if I just did this, it would be better, and that may or may not be the case, right?

Amy Wright: It’s so not the case, and I’m so glad you brought that up. I think, intrinsically so many of us have the instinct to do more, better, faster.

if we just- hustle, we can muscle right through it. I didn’t mean for that to rhyme, but here we are. and I think that, it- you ha- we have to enforce, reinforce for one another. It is not a, an inadequacy. it’s not a failure or a shortcoming that we’re having. I, I hear these, same feelings, kind of, universally of people in the- having this experience. The overwhelm. maybe it’s, like I was mentioning, that lack of education, where you don’t know what to do next or how to prioritize things. feeling inadequate. And maybe there is a l- a very literal inadequacy. We only have so many hours in a day. We only have so much money because even with preparing f- for caring for an adult parent, caregiving is expensive.

we only have so much energy, so much patience, and we find ourselves being snippy with our partners or our kids or, our coworkers or the person that we’re providing care for. And then we feel guilty. We feel guilty that we, for the ways that we are or are not handling all of that stress and those other feelings.

And, it’s just not the case. Caregiving is tough. Like, like you’ve said. And, It’s got some tough feelings that come with it.

Mike Barnes: And it’s not always the children. I know w- watching my mom and dad, as my dad was taking care of my mom with her Alzheimer’s 24/7, it was really wearing on him.

Talk about fatigue. We could see that in him. That’s why my sister and I were so worried, not only about her, but also about him. And trying to make both of their lives better.

Amy Wright: And especially in hospice, I saw that a lot, where a, a s- a spouse was having to make that ultimate decision, whether to elect their hospice benefits for their- for their partner, and then not understanding that hospice wasn’t 24/7, If someone becomes bedbound, it’s really hard to, expect an adult, an, older spouse, late 80s, early 90s, be responsible for all of the physical, responsibilities of- of caregiving. So totally.

Kim Barnes: I think y- especially with your dad, once your mom moved to memory care, your dad just, I mean, really kind of recovered, if you will- Oh, a little bit. About just, kind of being a little bit more back to his old self. He had more energy. Little more spring in his step. Of course, he also needed a, he also needed a pacemaker, which that, I mean, that could’ve caused some challenges too.

Oh, So there’s that. But, I think that, I- we did see that it was wearing so much on him. And there was such a huge difference just physically.

Mike Barnes: the fatigue. The fatigue, I mean, that’s just a great description, ’cause there was so much fatigue there.

Amy Wright: And I think it’s important to normalize that relief too.

I think that’s another thing that we feel guilty for, whether it’s, one, we’re struggling and we do say, “Okay, I’m going to accept some respite hours,” Somebody else to come in so I can tap out for a minute. Or, we decide ultimately I need, to pay for caregivers overnight because I’m not getting any sleep.

Or we need to make a placement change. maybe mom can’t stay in her own home anymore and, needs to go to long-term care or something. And then, or even ultimately when you’ve been caring for somebody for so long and they pass.

The feeling of I love them, I miss them, all of the things that come with grief, but also that relief.

It’s okay to feel that way, it’s okay to allow yourself to come up for air.

Kim Barnes: So it sounds like the first thing we want to do is we want to make sure that people understand that compassion fatigue is a real thing. And for, and s- it’s so important to acknowledge that in yourself and to realize that, hey, this might be what my, what’s happening or how, this is why I’m feeling this way.

And then figuring out some ways, like you just mentioned, the respite care, or do we need to bring in care- Ways to get help … ways to get help- so that you can get some relief. Because, w- we’re not going to be good caregivers if we’re not taking care of ourselves either.

Amy Wright: and one of the benefits of the series that you’re doing for our community is providing the education.

And that’s the, what my company’s about as well. But we can’t know what we don’t know. Right. There’s no way to be responsible for that. No. Right. And so without, you know- Having the conversation more pervasively, normalizing the feelings, and then connecting people with resources. there’s really no way to, get relief, to resolve-

Kim Barnes: all of this stuff that’s going on.

Mike Barnes: Well- Co- compassion fatigue is real. It is. Very real. Amy, thank you so much for all that you’ve shared with us.

Amy Wright: Thanks for having me, and thanks for everything you’re doing for our community. Thank

Mike Barnes: you.

Kim Barnes: Thank you. so good, first, the first thing to know is that it is a real thing, and there are a lot of people suffering, and it’s not just, it’s not just something that we’re not doing right.

Mike Barnes: Yes. And get help if you need it. Please get help. If any, if you have any other topics you’d like us to touch on and talk to an expert about, let us know here on Parenting Aging Parents.

*This transcript is auto-generated. Please excuse any typos or mistakes.