Podcast #124 How Do We Cope with Long Term Caregiving? – Katie Duncan, Part 1

At some point in your life, caregiving will likely come upon you, if it hasn’t already. As Rosalynn Carter noted, there are only four kinds of people in this world: “Those who have been caregivers; those who are currently caregivers; those who will be caregivers; and those who will need caregivers.” What can we put in place to help folks in this role?

Katie helps us think through some key questions, including:

  • What’s the financial picture, and how does that impact possible options? Who is in our “village”?
  • What are the gaps in care?
  • How can we organize a schedule and fill in those gaps?
  • What’s the right amount of help and how do we find resources? 

Check out her website: ⁠https://www.deathcarecoach.com/⁠

Follow her on socials:

⁠https://www.facebook.com/death.care.coach⁠

⁠https://www.instagram.com/death.care.coach⁠

⁠https://www.youtube.com/channel/UCkE5aFVFxWT46nNar91cLXw⁠

Transcript Below:

Diane Hullet: Hi, I’m Diane Hullet and welcome to the Best Life Best Death podcast. Today for those of you who are seeing the video, I am in my pantry because I have construction outside my window that’s making lots of noise. So I decided to just come in the quietest room in my house and have a few beans and tomato sauce in the background.

I’m here today with Katie Duncan. Katie Duncan is the death care coach and we met over Instagram and she does these incredible reels, short information about end of life. And I thought we would have a great conversation. So welcome Katie. Thank you. Thanks Diane for having me. We decided to do a two part and today is part one on caregiving.

And Katie, you know, tell us a little about yourself. How did you get into this work? 

Kate Duncan: Yeah. So so I am a nurse practitioner and an end of life coach. And how did I get to be an end of life coach, which I really started, got into just a couple of years ago. I feel like it’s a little better to kind of describe like how I got here and why end of life, if that’s okay.

Absolutely. Perfect. So I started out my nursing career in the ICU. And when I was in the ICU, I felt like I saw death in this way that felt very mechanical, like it didn’t really feel like a human experience for me. And I just, it just wasn’t for me I didn’t, I didn’t like it. And I didn’t feel like we had very good conversations with the families in the ICU for their with their loved ones.

about what was realistic and what was really going on. And you know, it was people were dying on in these sterile environments, sterile, sterile rooms. Surrounded by bright, obnoxious lights, bright sounds you know, strangers in white coats and it just didn’t feel right. So I moved into hospice and I became a hospice nurse.

I worked there for several years and I just loved it. It was like death was just this, it just like called me to it. Death in the home. And It felt like in home hospice as a hospice nurse, it was like I was able to finally like witness and support and guide people on a more human to human level.

And it really felt like we were able to create. Just a more beautiful and meaningful end of life experience for both the dying person and their family. So eventually I decided I wanted to do more and learn more. So I went back to school, became a nurse practitioner. Primarily, I’m actually still practicing clinically.

I’ve stepped back in the past couple of years but as a geriatric nurse practitioner, so really focusing on quality of life at the end of life with my patients. But A couple of years ago, I finally took a step back from healthcare. It just felt like there were a lot of things getting in the way of me feeling like I could really connect with people in the way that I wanted to and spend the time that I wanted to with people and really help them create a better end of life experience.

And I think You know, partly, I think my big why is, was that I was seeing people kind of reach the end of their life, reach their, their dying process. And it came as kind of this big shock for a lot of people. And I think and for families. And I think that’s because. I think in society, we just kind of see death, especially in the U.

S. as this like failure. It’s this taboo, hush, hush topic. And you know, we in, in healthcare and medical care, we’re taught to fix and cure. And we’re not really taught to help support people at the end of life or what dying looks like. And, and I really feel like people deserve a better end of life experience.

They deserve. A good death, whatever that means for them. So that’s my big why to really help people create a more meaningful end of life experience. And so I provide as an end of life coach holistic and nonmedical support for people with a serious or terminal diagnosis and their families. And I’m also excitingly starting to train other practitioners to do just that too, just to reach people on a wider scale.

Diane Hullet: So powerful. I think this thing about both patients and their families being shocked is, is such a, like, that is such an what’s the word? Like, it’s such the rub, you know, that, that we should, you would like to think we would know in the case of something that takes some time, obviously there’s sudden deaths, there are heart attacks and car accidents and terrible.

Those sudden deaths are so tragic and feel so difficult for the people remaining. But Most deaths is my understanding are slower. They are more chronic. And so there is time for some embracing of that knowing. And there’s so much that gets in the way of us doing so, right? I think cultural expectation to kind of fight and be stoic and keep a stiff upper lip.

That kind of thing. And then doctors sort of looking for ways to maybe not quite have that conversation, not all doctors, but many aren’t trained in what to do at the end of life. So I think this is really, really powerful to say, if we have conversation upstream, if we kind of look at our mortality, then when someone begins to get frail, we’re not shocked when there’s an actual death.

Kate Duncan: Yeah, yeah, you know, it’s what my grandfather died in 2019 and, and it kind of like hit our family in a way that I was seeing before, but, you know, really felt at that point in time, just with it being, you know, a direct family member and it’s, there’s just so little guidance. I mean, hospice is amazing.

I mean, they just do amazing work and, and it’s yeah. It’s so necessary and it’s you know, I think it’s a huge support system for families, but there’s also just, you know, this, this lack of support at the same time, like there are definitely gaps. And I think, I think most people in hospice would probably agree that, you know, we just can’t be there 24 seven people in hospice can’t be there and dying is a 24 hour experience.

Diane Hullet: Right, right. Well, let’s, let’s dive into kind of caregiving because I think the caregiver experience is so big and you’ve written two books. You’ve written a book called The Dying Process and you’ve written a book called Dear Caregiver, It’s Your Life Too. When, when you’ve written these books, what are you hoping that people will take away?

Kate Duncan: For The Dying Process great question. I think really it was me really wanting to give families two big things. One, reassurance. That what they’re seeing is normal, that the dyeing process is this natural, organic, innate. Process that our bodies go through, just like, just like the birthing process and whether we interfere or not, this process would happen.

And so these are things that are expected and normal and also to empower them by kind of giving them ideas and tools for what are the things that they can control. What are the things they can you know, take advantage of and be able to use to create a more meaningful end of life experience.

Diane Hullet: Beautiful. And then the 

Kate Duncan: caregiver book and for dear caregiver. So I wrote that book actually after I had experienced a burnout myself. And, you know, I, I think it was really two big things that I can think of here. One, it is acknowledging that. Caregivers are valued. They are incredibly valuable. I think undervalued really, but they are incredibly valuable in what you do and provide and to you’re also deserving of a good, full, complete life as well.

And acknowledging that taking on a caregiving role. is stressful and can be overwhelming and can be a full time job. And so what are the tools that we can give you to, to help you find a little bit more meaning and get back to your, yourself, like find your identity again and not burn out. 

Diane Hullet: Yeah, so difficult.

And you and I were talking earlier, you know, there’s really sort of two pieces of caregiving that are different. And let’s kind of divide those out here. So in part one of this conversation, we want to talk about chronic caregiving. And in part two, we’re going to talk about caregiving for someone who’s dying really near death.

So, you know, in chronic caregiving, or maybe there’s other terms for it, but like caregiving that goes on a long time, give us some examples of how. You know how a person gets in a situation where they need chronic caregiving. Well, 

Kate Duncan: you know, I think I could name a bunch but the one of the biggest ones that comes to mind is that they have a loved one with with a dementia, one of the one of the many dementias.

And that’s a long. disease process. That’s a, that’s a long progression. Usually the average life expectancy is somewhere between eight and 12 years and sometimes it can be up to 20 years. And with that person needing more and more care and eventually full time care and supervision. So that’s, you know, one of the, I think most prominent ways that I can think of that.

A person would come into the caregiving role and it being really just this, this chronic longterm 

Diane Hullet: role. Yeah. And then there’s also sort of a stroke, right? Yeah. There’s also just aging. There’s also a terminal cancer diagnosis. 

Kate Duncan: Sometimes I think of terminal cancer, you know, towards the maybe like end of life.

But yeah, I mean, it can be, it can be long. It can be years. Yeah. Absolutely. Absolutely. 

Diane Hullet: When these kind of long term caregiving roles or long term caregiving causes, what are the challenges that caregivers space? 

Kate Duncan: Oh boy. Big question. I think the ones that come to mind are. One, isolation. Um, you know, when you are kind of, when you’re taking on this 24, you know, hour role it can be really isolating.

You know, it’s like you caregiving for someone all the time, not being able to go out or do the things that you, you know, once enjoyed your hobbies, your interests, your job, other things. So I think isolation is a big one. I Would say generally speaking, overwhelm and stress. You know, it’s I think going into the caregiver role, no matter kind of how you get there, it’s a, it’s a shift in the way that you’re living.

And if you’ve never cared for someone, especially if they’re older you know, and they’ve, they have this, this illness now that, that needs your help, you’re not trained for this. No one’s trained you to be a caregiver. No one’s trained you to change, you know, an adult person’s, Undergarments or bathe them or move them from the bed to the chair or whatever else they need, you know, done.

And so you’re taking on that, like, that home health aid role that you weren’t trained for. And you’re also taking on the nursing role, giving medications watching out for side effects, you know, calling the, their providers getting them from place to place. So you’re, you’re taking on this. Multi person role as one person, and that’s really overwhelming and often 

Diane Hullet: on top of the laundry, the meal preparation, the changing diet and ability for what the person wants.

And I think there’s often an underlying, you know, huge emotional component where. I always think of the metaphor of the frog in hot water, right? You, you get in and the temperature is one thing, but then the heat’s turned up and slowly over time you realize you’re deep in it and you’re exhausted and you can’t find a way out.

I think the number of people in this role is increasing dramatically, isn’t it, across the country and expected to continue to do so. Most often women, but not always. And Often a spouse, but not always. And then I think also there’s that difference between are you the live in partner or the live in adult child or, or relative or friend?

Or are you across the country trying to do chronic caregiving? And that seems like one of the big through lines I see right now is with people living all over the country, this really becomes a challenge. 

Kate Duncan: Yeah, yeah, yeah. And being able to, like, what are, you don’t know what your, your loved one is doing day to day.

You, you know, when you’re not there all the time, if you’re from afar you don’t know how, how they might be showing up, you know, on the phone or on a visit when oftentimes people kind of perk up a little bit versus what’s really happening when you’re not there and when doors are closed. 

Diane Hullet: I think there’s some interesting new technology in these areas.

Right? Like, I’ve heard of this one called Penguin, which monitors water use. And so you can kind of tell from afar whether the person is using a normal amount of water and that actually indicates things, right? They’re getting up and using the toilet. They’re boiling water for tea. Like, there’s some kind of average amount of water.

I thought that was really interesting. And then, of course, there’s fall kind of technology that can help people know whether You know, someone is in that kind of way. Yeah, but, but the emotional challenge of being chronically far away, buried in your own regular life of work and whatever family you have, then really translates into a challenge when you’ve got, in this case, I’m thinking of elderly parents, right?

Or elderly aunt or uncle, and how do we care for them? Mm hmm. 

Kate Duncan: Yeah, you know, I, I I’m actually experiencing this a little bit with within my own family. We have my grandmother is in her. She’s gonna be 95 and a couple of months and she’s living on her own. And and trying to manage her ability to stay excuse me on her own.

And it’s, it, it, it is. It’s a challenge. How does she get from place to place when she’s not driving anymore. What are the community supports that the local community supports that, that we can kind of count on? 

Diane Hullet: Yeah. What have you found? What, what have you kind of, what has your extended family found for her?

Kate Duncan: Well, for her, we are very lucky. She’s lived in the same neighborhood. Since the thirties, I believe. And so her all of her neighbors, she she knows very well. A few of them have been there since she’s been there. And it really is this tiny little neighborhood, this tiny little street that is very community oriented.

So we have people checking in on her every day. And then we have some family that live close enough that they can get to her once a week. But we really, we really rely on those community supports that, that she has. 

Diane Hullet: Yeah. Yeah. I think this thing of building community, whether it’s neighbors or a, a faith based group or a book club that you’ve always been a part of something about that really matters for people.

Doesn’t it both in terms of isolation and in terms of kind of just adding support when needed, when family members can’t get there quickly. Yeah, and safety too. Yeah. Yeah. Safety is a whole other one. I mean, I just, you know, what what sort of pieces do you try to help people put in place for caregiving support?

Because now I’m thinking not of the person who’s the recipient, but the person who’s. The caregiver. 

Kate Duncan: Yeah, yeah. So, you know, for a lot of the, I’m thinking of one, someone I’m working with in particular right now, of course, thinking of stories, but this particular family, they are, I’m helping them remember who are their caregivers.

Yeah. There are people that they can call on. I think oftentimes as, as caregivers, it, it feels like you don’t want to ask for help. I think a lot of times like it’s hard to ask for help. It’s also hard, I think, to accept help, even when people do offer. And so For this family in particular, it’s it’s reminding them of who are those people who are willing to help and who you can say yes to.

And then, and then creating an organized schedule to help fill in the gaps of, you know, the day to day work and, and, and really, you know, advisory really. 

Diane Hullet: Yeah, it’s interesting. I can think of two examples and maybe even three examples. And these were cancer situations where the couple going through the disease process and nearing the end of life, they really called in community.

Like one family from the moment the person got the diagnosis, they had someone living in their house. Like either a sister came or a brother in law or a friend, they always had an additional adult in the house. And the difference that made for the caregiving spouse and the child and the person going through the disease process was incredible.

But it was like Two years of that. I mean, they really rallied and called forth community. And then I watched them just, you know, create a meal train and keep people updated. And ultimately, this friend turned his experience into a book because he’d written so extensively about what had happened and how they had managed this journey.

And I thought that was such an incredible thing to watch. And I’m, I’m on the outer edge of a community now where I’m watching this couple again, having just called in an enormous amount of support. And she writes and keeps everybody updated through a sub stack journal kind of thing. And people rally for food and for rides and for all this stuff.

So it’s fascinating how some people. Have probably already got some level of community going and then their story is compelling to others and people rally in a big way. And that’s those those are the exception, I think, and as you said, many people would even resist that, even if they could sort of rally those kinds of numbers of people.

And yet there’s such power in it. I often think that’s sort of what humans were meant to do is, like, live in the little small street that your grandmother’s on. Right? That’s a village. Yes, that’s kind of where humans came from. And here we are now living where we live. So how do we do this? You know, 

Kate Duncan: Yeah, yeah, you know, and, and it’s also, you know, if there’s no, you know, if you can’t pull out those community pieces, what else is there to look at?

I mean, it is looking at finances. I think that’s like a big key to is where are people. Really looking at finances and then figuring out are there options to, you know, bring in caregivers and maybe find ways to pay them in different ways, whether it’s like VA support or whether it’s Medicaid, Medicare long term care insurance looking at like tax credits and, and just kind of finding different ways to, you know, pay for caregiving If you’re from afar, how can you, how can you help, you know, and bring people 

Diane Hullet: in?

Right, right. And I have two friends right now whose parents kind of keep sort of firing the caregivers. And I was telling my mom that recently my mom is 86 and she said, Oh, the firing the caregiver stage. I can’t wait to get to that stage. She’s kind of laughing. I was like, Oh mom, no, don’t do that. Don’t do that.

But there is something about. How, how do you accept that you need a little help and one article I read recently that I really liked talked about, you know, are people willing to experiment, like, would you be willing to have some help that came to the house, two afternoons a week and experiment with whether that worked or not, like, it doesn’t have to be a permanent thing because I do think we get set in our ways and it gets difficult to accept a stranger in our house, right?

Kate Duncan: Yeah. Yeah. That’s actually just like we are. I’m working with a family right now doing just that. You know, most of the family is, is far away. And so we figured out a plan to, well, let’s, let’s trial this. Let’s just, let’s use this as an experiment, a trial run. And how does this work for you? Is this too much?

Is this too little? Are we still meeting your needs? 

Diane Hullet: Yeah. What’s the right thing? What’s the right number. And again, I’ll, as you said, that depends on finances and what I sometimes think of it as. I don’t know, this might be a radical statement, but I think of it as like, what’s the extended family financial picture?

You know, is there a sibling who’s done really well, who could chip in more to help with mom and dad’s help? And, you know, if you’re listening and you’re that sibling, just step up. It’s only money. You can’t be buried with it. You might as well help, you know, get help for someone in your family who needs it.

So. Now, not every family has that option, but some families have it when they go out a layer or two. Maybe mom and dad don’t have it, but other people might 

Kate Duncan: my family actually did that for someone. One of our family members who was dying. We did that. Everybody chipped in. Yep, pulled in the caregivers.

Then we did. We also, for another family member, we did a family paid caregiver of another family member you know, who had to stop working, but needed payment, needed money, and so all the family chipped in and, and paid this person as, as our caregiver for. 

Diane Hullet: That’s, that’s really, that’s incredible because I think there is something about the, the toll that it takes to be a chronic caregiver, both in time and effort and emotional toll and all these different layers, if other family members don’t see that and appreciate it and acknowledge it and even help pay, if that’s what the situation calls for, that just seems really important to me for long term family care.

Cohesion and communication, 

Kate Duncan: you know, just came to mind just now, just another thing that I’m thinking about, like a local support network would be looking into your local area agency on aging and just seeing all of the massive resources that are available. There volunteers, people who can just come by to check on you.

No payment is needed. You know, things like free transportation. Just like other ideas. It’s really looking at all of the different ways of support locally. And it’s, we don’t, we just don’t know always that they’re there, that they exist. So it’s thinking outside the 

Diane Hullet: box a little bit. Yeah, I think that’s a really good resource the agency on aging.

Let’s talk a little about I love the phrase the seagull syndrome, right? Comes from out of town and swoops in. What’s your experience with that? What would you say? Yeah, yeah. 

Kate Duncan: Hmm. My experience is that it’s definitely It definitely happens. whEre that caregiver who’s there 24 hours a day, seven days a week, doing all the job, doing it so well, as well as, you know, as anybody.

And you know, another family member comes in and I love that name, single syndrome comes in and, and, you know, Says this is wrong. This should be done better. That’s it. Yeah. Judgment. Flops and 

Diane Hullet: flaps, I think is the metaphor. Flops and flaps. 

Kate Duncan: Yeah. Yeah. And I, I think it’s, that’s that’s a, that’s a tough one.

Every family dynamic is different. And I think for any caregiver who might be listening is knowing that you’re doing a really good job and And, and, and really knowing that you are valuable, you are valued, you are cared for, you are important and letting go of outside judgment. bEcause you’re the one who’s there, 

Diane Hullet: there’s a great article now, and I loved it.

The woman writes the article about seagull syndrome, and she says, I realized that was me. You know, her sister was doing the majority of the caregiving. And she said, she realized that, you know, it was like 95 percent great. And here she was swooping in trying to make it 97%, like, she just wanted to tweak it a little.

And in doing so was really stepping on some toes. And she said, one of the things that helped them was. To communicate more frequently. And so it wasn’t such a kind of surprise and instantaneous arrival when she arrived in person with her big energy, it was more like, well, let’s be in touch. And let’s talk about this the week before I come, like really set aside some time, so she was up to date on dad’s care, but I sort of loved the recognition.

Like, Oh, that’s actually me. Who’s coming in, trying to tweak it, you know, and being very annoying in the process. 

Kate Duncan: You know, and other, other people that I’ve, that I’ve experienced this with, when you sit down and talk to these, you know, family members who are coming from far away, I think there’s also a lot of, like, there’s that emotional sort of guilt, I think, that a lot of families hold, and, and the expression of that is just expressed in this sort of Segal syndrome way.

Yeah, 

Diane Hullet: that makes a lot of sense. Well, we’ve touched on all kinds of things. One of the things I see with this is that there are so many things happening at once, right? It’s, it’s the dynamics of a family. It’s the history of a family. It’s the individual or a couple. It’s the siblings. It’s the extended family.

It’s the friends, it’s the neighbors, like every single situation is so, so unique. And so I think it’s hard to make real generalizations. But. Yeah. If you were to generalize, what do you feel like caregivers need to prioritize for themselves? Hmm. 

Kate Duncan: I would say first and foremost, self care. And I think the initial gut feeling on self care when you are that caregiver is, I don’t have time for this.

That’s silly. You know, this is, I can’t, I don’t have, I, I don’t have the time or energy either to, to practice self care. But I think it’s, it’s focusing on like, what do I need to survive first? And I think of nourishing the body, eating, hydrating, sleeping. And moving your body in some form, whether you consider it exercise or not, even if it’s, you know, taking a 5 to 10 minute walk, you know, up and down your driveway with your loved one sitting there moving your body in some way, just taking care of, like, your core needs to survive.

And if you have those extra 5 minutes to maybe do something that brings you a little joy that really helps you reconnect with yourself and your identity. I would say. That’s one. It’s like the point, you know, when you get on a plane, put your mask on first before anyone else’s. It’s the same thing.

We’ve got to practice our own self care so that we can give to the person we’re caring for. So I would say that first and foremost. And the second thing I would say is. is find your support, whatever that is, even if it’s reaching out to a health care provider to get in touch with the social worker to get in touch with that health care team, because they have a wealth of knowledge and resources that they can also provide.

If you have nobody else, you have that. 

Diane Hullet: Oh, I think that’s really good. And also the agency on aging in your area. I think that’s a really interesting one to think about. I think one of the challenges for caregivers is time, right? If they’re, if they’re have children themselves or they’re working full time, you know, these are things, these are phone calls that need to be made during the day.

And so it’s very challenging. And I, I guess I would think of it as sometimes when I had little kids, I would think to myself, okay, I’m going to get one thing done today. And so it would be like one phone call or one trip to an errand. And that was it. And I just redefined what success and productivity were.

And I was like, if I get to that one thing, it was a great day. But what it meant is by the end of the week, I would have done five things, which is a lot better than just. Feeling so overwhelmed and like I couldn’t possibly catch up and like if they were napping, I felt like I had to do six other things to prep for dinner and do laundry and, you know, that that that make a phone call.

I think it would have been more productive to maybe lie down for 10 minutes of that 10 minute nap. It just that self care piece is so important. So I think we’re saying two things mainly self care with the things you mentioned, and then also reach out like just find ways out of isolation. And then my third one is redefine productivity.


Kate Duncan: love it. Yeah. And celebrate those really small wins, like letting go of expectations and celebrating any win you have. 

Diane Hullet: Yeah, super. Well, any other thoughts on chronic caregiving? There must be a better word. That sounds so dire, but I can’t think of another one, you know? Long term? Long term? Long term caregiving?

Yeah. Yeah. There’s a line in the Barbie movie where Ken says, you know, he says something like to Barbie. He says something like, will you be my long term or my short term long distance, not low commitment girlfriend, something like that. Right. So I think about this, like we’ve got long distance, long term chronic caregiving.

This is, this is big folks. This is big. So how to find yourself some humor in it. Some context for it, some like minded people. I’m always fascinated by people’s reluctance to join groups, but I think there’s actually a lot of really good groups over Zoom that can offer support. 

Kate Duncan: Yeah, I mean, connecting with people who are going through the same experience as you, that you can share in that experience.

Yeah, I mean, it’s priceless, 

Diane Hullet: yeah. It’s priceless. It’s almost even better than the friend who doesn’t get it, you know, or who rolls their eyes and is like, Oh yeah, I did that last year and you know, you’ll get through it like that. Isn’t actually helpful. So awesome. Well, thanks Katie. And so the real connection to this podcast, I think in particular is probably your book, Dear Caregiver.

It’s Your Life Too. Yes. Thanks so much for listening. You’ve been listening to the Best Life Best Death podcast. You can find out more about Katie’s work at deathcarecoach.com, and you can find out about the work I do at Best Life. Best death.com. Thanks again.

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.

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