Caring for someone who is dying takes a different approach, and family members may not always remember that or see that it is no longer time to “seek a cure.” Katie Duncan and I discuss some of the challenges that family caregivers face when someone is dying: realizing the time to “fix” is at an end; stepping into a role with little or no training; adjusting to this new role, often from a geographic distance; acknowledging and adjusting to the constantly changing needs of the loved one; and figuring out who to turn to for guidance and resources. As educator Barbara Karnes says, “Dying is not a medical event, but a community event.” Listen in to learn more.

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⁠Transcript:

Diane Hullet: Hi, I’m Diane Hullett, and you’re listening to the Best Life, Best Death podcast. Last week, I talked with Katie Duncan, the deaf care coach, and she’s back again for a second half of a conversation about caregiving. Hi, Katie. Hi, Diane. So last week, we kind of talked more about like caregiving for the long term.

Like how do you stay in it? How do you not totally burn out when you’re caregiving for someone? Either from a far or long distance and so on and that’s such a huge category and Katie’s got a book called Dear Caregiver. It’s your life too, which I think is a huge resource. Is there anything you want to add about that, Katie, or should we just jump into the next topic?

Katie Duncan: Yeah, I’ll jump in. Just, you know, talking about my book, Dear Caregiver, It’s Your Life Too, my hope is just to provide anyone who’s in the caregiving situation to have the tools to be able to be able to take care of themselves and to be able to care for themselves better so that they can care for their loved one even better.

Diane Hullet: Yeah, so important. So when we were first talking, we were really saying like there is a difference between long term caregiving and caring for someone right at the end when they are dying the last few weeks or a few days. So let’s go into that. How is caregiving for the dying different? 

Katie Duncan: Yeah, great question.

So, you know, I feel like when we were talking, it was when someone is coming into the caregiving situation when it’s going to be a long caregiving situation, there is an emotional burden, but it’s different than the emotional grief that you’re feeling when you know that the person you’re caring for is dying.

And it’s this short term, very acute caregiving situation that is really a 24, 24 hour need at some point in time, maybe not at first, but at some point in time. And I think it’s really trying to juggle Your grief or your anticipatory grief with this, with caregiving that you’ve not been trained for you know, you don’t know what dying looks like.

You don’t know what to expect. You don’t know how to care give, how to you know, change a soiled undergarment or change your loved one’s clothes or move them in bed or give medications that you’ve never given before. And it’s just, it’s, it’s It’s overwhelming in the sense that there is this over.

Lying grief that kind of covers this, this high stress caregiving situation. Do you feel 

Diane Hullet: like with the families that you work with and situations you’ve seen, you know, do you feel like most people are aware that that dying is upon them, or are more people sort of still in denial and thinking they’re healing?

Katie Duncan: That’s a good question. I think typically, at least in my experience, by the time Most people get to hospice. While there’s this kind of introduction period, I think most of the time in my experiences, families or caregivers are aware that their person is dying. Yeah, I would say there’s there’s some level of maybe it’s not quite acceptance, but it’s awareness.

Diane Hullet: Yeah, that makes sense. And what are the challenges you see caregivers face? Like what’s the most, you’ve mentioned some, because just stepping into a role that you’re not trained for, this, this seems like such a huge thing to me. 

Katie Duncan: So many of the caregivers that, that I, I work with. Say no one’s ever. I wasn’t trained to be a nurse or I wasn’t trained to, you know, white my if it’s a parent or a spouse.

I wasn’t trained to clean them or, you know, wipe them or change their undergarments. And this isn’t something that I want to be doing. And I think that’s, that’s one of the, the most challenging pieces is kind of like adjusting and adapting to that or, um, being able to honor that that’s an accept and acknowledge that that’s where they’re at and see what kind of help and support they can get to fill in that, those, those pieces of caregiving.

Diane Hullet: Right, right. And what, where do people turn for resources in that time? So, 

Katie Duncan: Oftentimes, you know, hospices will be able to provide some level of support. There is this team and it’s really a team effort with the hospice team. There’s a hospice nurse, there’s social workers, there are home health aides that can come in and help provide some of that caregiving.

There’s a spiritual counselor, a bereavement counselor, so there’s, and volunteers. So they can all kind of pitch in and I, and I think a big, you know, resource I think for families at this time are really end of life or death doulas and end of life coaches or anyone, any sort of end of life practitioner on the non medical side that can really just provide that extra layer of, of emotional support as 

Diane Hullet: well.

Yeah, you know, when I think about a dream team, it would almost be like, you know, the CNA comes twice a week for a bath, and the nurse comes once a week for checking vitals, and a doula comes three days a week to just kind of have conversations with both the dying person, if they feel like talking, and The partner, spouse, children, whoever’s around, like there, there can be this way that the whole thing is held.

And I think that not everybody realizes that. And death can be so isolating and so confusing without these supports in place. And I just, that’s what I always think about is how do people avail themselves of this support? And I I’ve said this before. I mean, I’m, I’m actually. Sort of a I want to say like a product of a family who believes in hospice because I’ve experienced eight deaths in my family, all with hospice.

Some as long as six months, some as long as a couple of weeks, all of them holding this understanding that now that hospice has come on board, do not call 9 1 1. If something happens, there were notes on the phone that would say, do not call 9 1 1, call hospice. Here’s the number so that everyone was on the same page.

And all of these situations really. And, and so there was a kind of stepping into it that we did and there was support from hospice that was there. And, you know, people like the, the CNAs who would just come for the consistency of changing sheets and bathing someone that was so important. So when I think about people and their resistance to hospice, I’m always sort of stunned by it because I don’t.

I don’t think of hospice as being brought on board when you’re dying. I think of hospice as being brought on board to support your final weeks or months. And that’s a different mindset. Would you, do you 

Katie Duncan: agree? A hundred percent. I you know, with hospice, I think we’re really just changing the focus.

From quantity of life and really focusing now on quality of life. And and what are the things, what are the goals that you have? What are the things that matter most to you? And how can we achieve, you know, the best quality of life for as long as that might be? And allow that dying person to be the captain of the ship and all of us just be the crew.

And let them, you know, tell us what to do. And guide, guide all the decisions and choices that we make based on their wants and wishes. You 

Diane Hullet: know that when you just said that metaphor, it made me think one of the best metaphors I’ve ever heard was Dying is like you’re standing at the edge of a river and you’re going to go into that River Do you want to build a boat with your family in your community and hospice build a boat of your own creation?

Step in and row yourself into the river or do you want to be sort of? Struck down by the tides and the currents of the river and pulled in and sucked down and you’ve got nothing supporting you. That’s, that’s such an apt metaphor, I think, for people to think about when they feel sort of resistant to having help.

I just think, well, don’t you want help building your boat? 

Katie Duncan: Yeah. Yeah. And, you know, in my experience too, it’s, you know, the, I think the, the change, change is always really hard, I think. for anybody. And so changing this way of health care to, to having people from a health care team now come into your home and support you.

It can feel like a lot, but then in my experience, families say, wow, this was so supportive. This was What I needed and I didn’t know I 

Diane Hullet: needed it that really nails it. This was what I needed and I didn’t know it. I remember the point that one of my family members said, I’m done going to the hospital. I’m done going to the hospital for this chronic lung infection and being admitted through the ER and that’s for the beans.

I don’t want to do that anymore. And one of us said, Is it time to call hospice? And we honestly didn’t think she was anywhere near dying. And she said, that’s exactly what I want to do. I want to call hospice. I want a doctor to come to my house and evaluate me. I want a nurse to come once a week. That’s it.

But not everybody embraces it in that way, but she really saw it as a relief from the medical system that was sucking her in and trying to do stuff to her that she no longer wanted done. 

Katie Duncan: And maybe wasn’t going to be beneficial in the 

Diane Hullet: long run, not at all, not at all. And I think she knew that, but she was willing to come to terms with that.

It’s really powerful. Isn’t it? This, this dying process and how it is both up to the person dying, but it’s so much about the family dynamic. And it’s so much about. People understanding what’s happening and, and the number one person in that additional spot is the caregiver, right? The main caregiver. What else do you think people should know about the dying process?

I mean, that’s the other book you’ve written is a book called The Dying Process. And what things are helpful for people to know at that time? 

Katie Duncan: Great question. Well, I always kind of like to compare the dying process to the birthing process because they’re both these natural ingrained processes that our bodies know exactly how to do, whether we try to interfere or not.

And I always think about birth, how it’s, you know, kind of messy and stressful and chaotic and kind of scary. But also we look at it as this like really beautiful and meaningful experience and that this is just kind of how it happens, how it’s done, how we come into this world. It’s just kind of messy.

And it’s really kind of the same on the way out that it can be kind of messy, not always pretty and stressful, but this is the body’s labor process. We labor on the way in and we labor on the way out. And our bodies do so many amazing things to protect us through all of those changes and transitions along the way, on the way in and on the way out.

So that’s, I think, one of the biggest things. But what are some, like, major, major changes that I think probably are the things that, that, that scare people the most, that they’re not aware of or not ready for? I would say One actually, I didn’t think this was going to be the first one I thought of, but pain, pain is not really a part of the dying process.

It’s more a part of the disease and the progression of that disease. And so it’s not always the case that people die in pain or, or, you know, suffer and experience pain. I’ve had plenty of people, actually, I’d say more people than not who don’t have any pain at all when they’re dying. So I think that’s one of the biggest things that.

I think most of us are probably all afraid of and I think a lot of families are afraid of is, is my loved one in pain. And that’s not always the case. I think one of the biggest changes though, that I think is really scary at the very end of life in the last hours to days is really that change in breathing.

There is this, the, the brain starts to shut down, the person goes into this deep sleep unconscious state naturally, as they’re all of these chemicals are shifting and changing in the body and, and it causes the brain to start to shut down and the breathing to start to shut down. And so, breathing can be pretty erratic.

We. We call it chainstokes respirations or chainstokes breathing, where someone breathes really, really fast and really, really big, and then they kind of slow down and then there’s this really long pause, and oftentimes with that you’ll also hear what we call terminal secretions, which you might hear or know as the death rattle, and that just for families that is so hard to see and hear at the same time.

One of the biggest pieces of education that I give families is that the dying person is, is not in pain, they’re not drowning, they’re not suffering, as the person is not able to swallow all of the secretions or saliva in their mouth, kind of just start to sit right at the very back of the throat, and it’s all you’re hearing is air passing over that little collection of saliva.

And so it’s, it’s really just the noise that is really distressing. 

Diane Hullet: So talk a little bit about what they call like the rally or, you know, somebody who kind of a few days before they die, maybe says, Oh, take me outside. I think I’d like to see the air and everybody thinks, Oh, fabulous. You know, mom’s popping out of this.

Katie Duncan: Yeah. And there’s always that, that confusion of, are they actually getting better? Like what just happened? Yeah, and and sometimes people can rally and re rally and re rally. But that end of life rally is, is really pretty common. Typically you’ll see that the person starts to really slow down.

They almost look like they are, are really near death. They’re not really awake. They’re not really alert. They’re, you know, probably not, not talking, not eating, not drinking. And all of a sudden, out of nowhere, they wake up and they ask for food. They ask for visitors. They want to go on a trip. They, you know, all sorts of things and they look all better.

And then typically right after that happens, sometimes it, you know, can last a couple of hours. Sometimes it can last a couple of days. And typically soon after that, the person will go back into that deep sleep state and die soon after that. But it’s really that. That unexplainable sort of phenomenon that happens at the end of life that we have no idea.

We have no idea why it happens. We have no idea what’s going 

Diane Hullet: on. Wow. One of my favorite stories of kind of a rally like that is the author Elizabeth Gilbert writes about it in, she performs it as a presentation for a program called The Moth. And she talks about her partner. She was sure that she was at the last moments of her life, and they’re all kind of rallied around her.

And, and the woman wakes up and she says, What are y’all doing in my bed? Hey, doesn’t Lululemon still have a sale going on this week? And they jump out of bed and they go to this Lululemon sale. And the partner is like, here I was buying like athleisure wear for some imagined future. And she’s like, what the heck is happening?

But it was just this like final kind of rally of this very powerful personality of this woman shining through. And it’s just such an amazing story. Every time I listen to Elizabeth Gilbert’s moth presentation, I laugh and cry both because it’s just such a story of her partner’s death. 

Katie Duncan: Can I share a recent story that I, an end of life rally that I experienced with the family?

There was, so I had this, this family who mom was on hospice really wasn’t doing well. And the, just recently, the family said, well, we really actually want to take her on a trip. We wanted to do one last trip with her. And she was still awake and alert enough, I think, to be able to do that. So they took her off of hospice to be able to go travel.

And. A few days later, all of a sudden, she’s found lying in bed, rattling, chainstokes breathing, modeling, you know, changes of color on her toes. Toes look blue. She looks like she is actively dying, and I think there’s no way that she’s going to live for another, you know, 24 hours. Family comes in. The day after family leaves, she wakes up.

They go on this trip a week later and she comes back and now she stopped. She stopped eating again. She’s sleeping. Mostly she’s barely awake. It’s it’s pretty amazing. And so we’re, you know, I, she hasn’t died yet, but, but that is an example of an end of life rally that I cannot explain. She was clearly showing signs of actively dying and she woke up and rallied and went on this trip that her family really wanted to take her on.

Diane Hullet: Amazing. Amazing. There’s, there’s just, there’s more going on here than just the body slowing down, right? I think it’s important to also mention when we think about caregiving for the dying, something about the simplicity of presence, right? I think people get a little, you know, we’re so living in this fast paced quote unquote productive world and the world of the living, there’s something really powerful about presence and just simply.

Being there for people without having to have the right words, without having to say anything even, and sitting with people, whether they’re asleep or awake, just being present, and that that is part of caregiving, and it’s part of the caregiving for the people who arrive from out of town, if that’s happening, and it’s part of making space for the one who’s been kind of actively doing caregiving to just have some quiet time with their loved one.

I think it’s really important. You know, we, we sometimes think that caregiving has to be action. And I think there’s also so much space for just presence. 

Katie Duncan: I love that point. Yeah, totally agree. Yeah. So much of that, of the dying process is, is witnessing is just being there to, to observe and to hold that space and to, you know, witness what our person is going through and experiencing and watching their journey and learning from their journey and supporting them, you know, in their, in their comfort and really just surrounding them with that love and that compassion.

Diane Hullet: Yeah, that’s I think a big piece of our grief process. I think that sometimes the person who, you know, isn’t able to be there and have that kind of space is the person who has a more complicated grief with coming to terms with that the death has happened. 

Katie Duncan: Yeah, you know, I am. I’m thinking about this too, just like from a caregiver standpoint of like friends or other people who want to come in and support that caregiver.

That’s another great way to, to do it is just to come and be not say or do or act that, you know, we’re in that go, go, go, no, just, just be, just be with them and acknowledge what they’re experiencing, acknowledge their grief, you know, without trying to fix or say, or, you know, you can’t fix or say just be.

Diane Hullet: Yeah, just be. And I think too about this piece where, you know, sometimes people want to call and say, what can I do? And I think reminding ourselves that the caregiver doesn’t necessarily only the very organized caregiver has a list in their mind where they’re going to rattle off what you can do. So I think it’s a time again, we’re sort of talking weeks to month to days that yeah.

just showing up with something and just simply doing it, just offering to take the dog for a walk, even offering to do that at a regular time or offering to bring dinner on a certain night and checking to make sure it’s something they can use and eat or put in the freezer. There’s just something about showing up with some consistency.

If you’re one step out. for that caregiver that that’s probably really what helps the caregiver the most. And I think for people who are listening, who are deep in caregiving, just letting them know to take a breath and accept some of that. And, you know, not to try to control every single thing and to let some of that help in, because if the roles were reversed, you would want to help that and now they’re wanting to help you.

So. 

Katie Duncan: Yeah, saying yes. Being able to receive, I think, is, is, we’ve grown up in a, I think, a culture that is, that has a hard time receiving, but it’s 

Diane Hullet: such a good thing. Yeah, say more about that. What’s your experience with that? 

Katie Duncan: Yeah, yeah, you know, it’s I’m just going to relate to a client that I have right now.

She is having a hard time saying yes to all of the people in her life that want to help her. She’s on hospice. She is living alone and she, she needs more help and she’s aware of it. And she’s just having a hard time saying yes. And she’s started saying yes. And, and you can see the difference.

It’s, I mean, the people who are helping her feel more, feel like they’re doing something. And that’s really what. Well, people who care about you want to do, they want to feel like they’re, they’re helpful. Say yes. Yeah. Receive. 

Diane Hullet: You know, the other thing that pops in my mind is the person who’s on hospice, who’s maybe mostly in bed at this point, maybe she’s not the one who even organizes it.

Like all she needs to say is yes, it’d be great to get some people in here. And then. Who’s the person who loves spreadsheets or loves email or who, you know, who can kind of organize this thing that then allows her to just sit back and know that at 11 o’clock every day, someone’s going to swing by or whatever the thing is that’s simple.

And I think making our visits sort of. Short and meaningful and, and watching someone’s fatigue level, being attuned to their fatigue level and stepping out when it’s too much and doing something else around the house that might need doing. 

Katie Duncan: Laundry, dishes. Yeah. Taking out the trash. Yeah. Simple things.

Diane Hullet: Yep. Yep. Well, this I think is really interesting that this idea that there’s, you know, long term caregiving is one set of issues and things that need to happen and towards the end with a dying person are a different set of caregiving issues. Yeah. Yeah. 

Katie Duncan: You know, I think. Biggest thing is that this is a short, acute, high needs situation and it’s also a very emotional situation as well, really preparing for a loved one or the person you’re caring for to die.

And that’s, that’s also managing your, your, your grief as well. 

Diane Hullet: You know, I don’t know if this is just a Midwestern thing or a privileged thing or what, but I have always been taught and always believed that it’s really important to show up. And I’m struck by the number of people who either don’t go back to visit the relative or friend or they don’t fly back for the funeral because they say, well, it doesn’t matter, they’re dead now.

And I, I have to disagree with that, folks. I think that there’s really something that is about. Ourselves showing up for these things that makes a difference for us and in our grief. And I know it’s not always possible. So, you know, not trying to lay a guilt trip on anyone who cannot buy the plane ticket and get there, but if you can, I, I’ve never known anybody to regret it and say, yeah, I really shouldn’t have gone and visited my aunt.

That’s too bad. I wasted that time. These are, these are meaningful connections. This is what we’re here doing that’s deeper than the productivity and the go, go, go. Yeah. 

Katie Duncan: And, you know, I think at the same time, it’s, we, we also, I agree. I don’t think I’ve ever met anybody who has been upset that they, They got on that plane or they took that trip and went to, went to see them or went to the funeral, or I don’t, I, I haven’t known a single person.

And at the same time, I always have to remember that everyone deals with grief and hard situations differently. And and that’s, yeah, I mean, I think that’s something that I just have to realize that my truth might not be their truth and 

Diane Hullet: absolutely. Yeah, absolutely. I think sometimes death is very traumatic for people.

And so then being reminded of it is very charged and intense. And that is absolutely true. And I think also as a society, we’ve built this kind of casual thing that says, you don’t have to show up. You don’t have to. Have a ritual. And I look at what happens when we do do those things and it changes the way people experience the death and experience grief.

And everybody does it differently. Yep. 

Katie Duncan: Yeah, rituals, rituals and integrating those the new way of being afterwards is it’s a process. Yeah. 

Diane Hullet: Well, I think a big part of the dying process is what’s happening for the person that’s dying and then what’s happening for the people around them. And yeah.

Yeah. What’s happening for the people around them is that their lives are going to continue. And this is where grief, I think, is just such a huge, huge piece of the caregiver journey, whether it’s chronic grief of a chronic illness or a chronic situation, and then also the grief of the immediate death.

Katie Duncan: And all the little losses that you find out later on or that you realize later on. Mm 

Diane Hullet: hmm. What are some of those? What comes to mind? 

Katie Duncan: Taking a sip of a cup of coffee and thinking, Oh, this is the mug that, you know, he used to drink from. Or going grocery shopping and thinking, Oh, I only bought this thing for, for them.

You know, it’s all of the little things that you did. Together, or you did for them, or I mean, the list goes on, the list goes on, you know, we were 

Diane Hullet: so long, right, right. I think of identity to like you, like a piece of your identity changes. Yeah, 

Katie Duncan: yeah. I, I was just talking to someone, you know, our brain, it’s like we, when we have a relationship and we have this connection with someone, our brains doesn’t see it as you and I, it sees it as a we.

And so when that person dies, it is like losing a part of us. 

Diane Hullet: Oh, that’s really beautiful. That’s an amazing way to think of it because there’s some way that we think, you know, it’s separate. Sometimes we think. I’m separate and I knew they were going to die. And I, why am I so upset by this or why am I so touched by this?

It’s because the we has changed. Yeah. 

Katie Duncan: Yeah. You did. This is, you did lose a part of yourself. We, you’re, we were, we,

Diane Hullet: wow. What other thoughts do you have for the caregiving of someone at the very end of life? Anything last words you’d want to leave with listeners? I’d 

Katie Duncan: say, I’d love for you to invite a little bit of grace. Into this process and into this journey and allow things to be as they are. There’s no perfect, um, it’s doing the best you can and, and showing up how you are, whatever that looks like.

Yeah. When a loved one is dying, it’s I think we think we have to get it right. We have to get it perfect. We have to make sure, you know, they’re cleaned right on time or we don’t miss a medications that they, you know, stay comfortable or. all of these ores but it’s okay. And you’re doing the best you can, and it doesn’t have to be perfect, and it can still be really good.

Diane Hullet: Oh, I think that’s good. I think perfection is so often the enemy. What’s the phrase? Perfection is the enemy of good enough. Like, let yourself show up and be good enough just as you are and let them be doing good enough just as they are and try to not do it in isolation when there are services available to help at this point in life.

So lean into those, receive those, whatever that help looks like. I think it’s interesting that sometimes unexpected people, maybe a friend more on the fringe or a neighbor is actually the one who can really show up and meet us and do things that need doing. 

Katie Duncan: Yeah, I see that all the time. And sometimes it’s, I think sometimes it’s because they’ve gone through it.

And when no one else knows what to do, they do because they’ve been through it. 

Diane Hullet: Yeah. So well put. So well put. Well, thanks, Katie. Katie is you know, an amazing death care coach and then also has a couple of books written. I’m sure there are more books in your future. And right now she’s working on a really exciting end of life practitioner program that when does that launch?

Katie Duncan: We are going to be launching in February of 2024. So exciting. We’re going through our beta program now. It’s going wonderful. So I’m just so excited to grow our community. 

Diane Hullet: Well, I think you just bring a wealth of both practical and more emotional support to families at this time. And so, the more people who can lean into this and learn this work, I always say, like, let’s have a doula in every home, you know?

Like, wouldn’t that be amazing if every home had somebody who knew how to be with death and support people at the end of life? This would be a different world. Oh, yeah. Oh, yeah. You can find out more about the work I do at BestLifeBestDeaf. com, and you can find out more about Katie’s work and her books at DeafCareCoach.

com. Thanks so much for listening. Thanks for being with me, Katie. Thanks, Diane.