Saying Goodbye - After a Long Term Illness

The diagnosis redraws the map of a family’s life, and suddenly everyone is living in two worlds: the one they knew and the one they never asked for. We dive into anticipatory grief—the real grief that begins long before a death—unpacking how it changes routines, identities, and relationships. From the “before and after” moment to the long grind of treatments, we name the hidden costs of caregiving, the overwhelm of new medical language, and the relentless fatigue that makes even simple decisions feel heavy.

Together with Erin Nelson and Colleen Montague from Jessica’s House, we get practical about what helps. We explore the myth that more time makes you ready, and why relief, guilt, and anger can sit side by side after a long illness. You’ll hear clear, compassionate scripts for talking with kids about death and illness, ways to validate their feelings without shutting them down, and simple phrases that help them discover they did nothing wrong. We also share strategies for reframing hard rooms and images, using photos, stories, and rituals to separate the person you love from the illness that changed everything.

If medical settings now trigger fear, we offer concrete steps for preparing children—alerting providers, involving child life specialists, and using kid-friendly videos to demystify procedures. We talk about choosing quality of life, explaining treatment decisions in age-appropriate ways, and inviting your community into the messy middle without shame. Through it all, we focus on authenticity, presence, and the belief that kids are natural mourners when given empathy and permission.

If this conversation supports you, subscribe, share it with a friend who’s grieving, and leave a rating and review to help more families find these tools. Your review puts this episode in the hands of parents who need it most.

Order the book When Grief Comes Home https://a.co/d/ijaiP5L

For more information on Jessica’s House or for additional resources, please go to jessicashouse.org 

Transcript

Welcome And Episode Focus

Gary Shriver 0:00

Hello, and welcome to When Grief Comes Home, a podcast dedicated to parents living through loss while supporting their child. Let's meet the team.

Erin Nelson 0:10

I'm Erin Nelson, founding executive director at Jessica's House.

Colleen Montague 0:14

Hi, I'm Colleen Montague, program director for Jessica's House and a licensed marriage and family therapist.

Brad Quillen 0:21

Hi, I'm Brad Quillen, and I'm the host of When Grief Comes Home.

Gary Shriver 0:25

This podcast goes along with the book of the same name. The book When Grief Comes Home is a gentle guide for parents who are grieving a partner or child while helping their children through the loss of their parent or sibling. When Grief Comes Home is now available at all major book retailers. Now let's go to the team as they share grief resources and coping skills, heartfelt stories and insights to support parents as they raise children who are grieving. Together, you'll find strength as we learn to live with loss and find ways to heal.

Defining Anticipatory Grief

Brad Quillen 1:01

Hello, hello. It's Brad from Jessica's House. Today we'll be talking about saying goodbye after a long-term illness and all the emotions and feelings that go along with that. We'll also discuss the idea of walking alongside our kids in this hard season. Hey Erin and Colleen, it's good to be back with you guys again today as we talk about saying goodbye after a long-term illness. And I know we could all list a name or two of people that we've walked with an illness and then they ultimately die. It's just a part of that long-term illness piece. And we've had friends or family members and known a lot of people that have walked through that, obviously, here at Jessica's House, too, that are part of our groups. And there's a a phrase that we talk about around here called anticipatory grief. And that's kind of a big word. So we want to break that down. And Erin, would you just take a moment to kind of share with us what that big word means? You sometimes people will hear it here at Jessica's House, or maybe people have heard it in different places. But as we talk about that today, as we unpack this idea of saying goodbye after a long-term illness, we wanted to start with that idea of anticipatory grief.

Erin Nelson 2:09

Yeah, Brad, when we talk about that big word, anticipatory, we're talking about this sense of loss that people experience before a death actually occurs. And, you know, we're going to be talking about that today and just how anticipating a person's death really affects our grief process later.

Brad Quillen 2:31

And even how we share that with everyone around, too. How it affects their grief and their journey after the death has happened, right?

Erin Nelson 2:40

Definitely. You know, we start grieving a person. Sometimes we're using the word pre-grieve while they're still alive. And many of the times, all of those feelings that we are talking about in grief, like sadness and anger and anxiety, emotional exhaustion, guilt, those are all the feelings that we may experience even before someone dies, as we are with them in a long-term illness and we're watching the changes occur.

Brad Quillen 3:14

And it really starts, calling in air, like when we get that diagnosis. Like sometimes that's the first thing. There's the the lead up to it, but when we get that concrete reality of, hey, here's what's going on, here's the the definitions, here's the diagnosis, that's kind of when this all starts.

Erin Nelson 3:31

Right. I mean, that diagnosis, and that's that before and after moment for so many of the families that come to Jessica's House, they'll never forget that moment when whatever that was, that disease, they learned that this is what is wrong.

Brad Quillen 3:52

Yeah.

Erin Nelson 3:53

And this is what we're going to try to do to help. And they are all of this sudden kind of dropped into this kind of battle, right? And this race against time in some ways, and finding out what it is they need to do next.

Diagnosis As The Before-And-After Moment

Brad Quillen 4:10

Yeah. Because so many things start to change. And sometimes it's it's immediate, and sometimes it takes a little longer to for the disease to start to progress. But Colleen, what are some of those changes that people talk about in group or that we hear about in that anticipatory side of things?

Colleen Montague 4:24

You're really starting to grieve multiple losses along the course of their illness. You know, you obviously see the loss of health. You notice and have to support them in their loss of independence and activities that they can no longer do on their own or at all. Shared activities you might have may have done before together, those are changing. Even just the future plans that you had or you knew they had, and now you know they had to grieve the loss of the life that they assumed they would have for themselves, and what your role would have been in that too. And then of course, just with all of it, you're just grieving the loss of the person as you knew them to be. As their body and their abilities and their health begin to change.

Brad Quillen 5:15

It's interesting you say the the future things because I can remember so many folks and groups, but even in my own circle of life, of people saying, Well, what about Hawaii? We had it planned, or what about Europe? Or what about Christmas? Like I've had a lot of friends that have said, I just want to make Christmas, or I want to make right, and that's a reality.

Colleen Montague 5:37

Even I had a mom recently just said, We were supposed to raise our grandkids together. Yeah, yeah. You know, just to be to be grandparents together, and I'm not I'm never gonna have that now.

Erin Nelson 5:50

Yeah, you start really grieving and even pre-grieving the dreams that you had, right? All of those dreams that you hoped for, and so much of the time in our lives we're working so hard to get there, and then to have that diagnosis come in. Even though I know, Brad, like we know that we live in this every day, we work and we are around people that have had these diagnoses, and but well, you never expect it. No, you never expect it, and so when it's you, when it's your family, when it's your loved one, it's so shocking.

Brad Quillen 6:29

Yeah, I just think of you know, in church world when you hear that as a pastor, like you're the my a lot of times my first thought is you're kidding.

Erin Nelson 6:37

You know? Yeah.

The Many Losses Within Illness

Brad Quillen 6:39

Just that that protest or that that that sh I don't want to use the word shock, but just that man, it just takes the winds out of your sails.

Erin Nelson 6:47

Absolutely. I mean, you just you have these dreams, like I said, and it's when you have something that comes in and you realize that life will never ever be the same. It is so shocking, and then it's almost, you know, and I know even in our family when we've faced long-term illnesses, you're also thrown in this new world, right? We have this new vocabulary, you're learning all of these new words that you've never heard before. And you're learning about medications and treatments, and you're learning about the names of certain kinds of maybe cancers or something like that, and you're going into these medical settings when where everybody is at a different stage, right? So you may be in a medical setting where you're seeing the fragility and you think, oh, that could be me someday. Yeah, right. Even in the beginning of feeling really good, kind of early diagnosis, you realize that, well, this is like a really serious thing. And our lives are very different now. And just even in the beginning, and um, just the precautions that you have to begin taking, and you begin realizing that as you enter treatment, you don't get to even live the life you once did because you now have to think about getting sick, right? Because your immune system might be down. And so there are just so many life-altering kinds of pieces around a diagnosis.

Brad Quillen 8:34

The when you were talking, the thing that kept coming back to me was just the exhaustion.

Erin Nelson 8:38

The exhaustion.

Brad Quillen 8:39

Because you're you're living life and which is tiring at some baseline, depending on where you're at and stage and age and all the things going on. But then you throw all this in, you know, the illness it's itself, and maybe you're a spouse or caregiver or a kid or an older adult that's you know walking with uh your own child through this, that you then have to become the recorder of everything and you learn all these terms that you have no idea what some of these mean, and the medical professionals are doing the best they can to break it down to us. But it's almost like you need another person to go with you because you just lose so many things in translation and getting the person in and all those things. Like it's just exhausting.

Erin Nelson 9:16

It just comes at you so fast. Yeah. Right. And it's in your brain is just trying so hard to even process all of this new information. And so some of the families that we've served have just said, you know, I kind of felt like symptoms of trauma in some ways, even in those medical settings where I saw people and I felt really terrified of what we may face someday. And they just weren't ready for that.

Brad Quillen 9:53

Yeah.

Colleen Montague 9:54

You made a good point, Brad, about how exhausting just this whole extended grief period, really, that you're in, and not only physically, but emotionally, spiritually, you know, even with you being maybe the caregiver now to your loved one. And if it's your spouse, now you're already starting to assume some of those other just daily roles that they used to be able to help you with, but now you're the sole, you know, kind of provider in a way to your kids of the one that actually has the energy and the capability to do the lunches, do the laundry, get them to school and back and help with the homework.

Brad Quillen 10:33

So you're doing one and a half jobs in a sense, like just of of parenting and then on top of the caregiving.

Colleen Montague 10:39

Yeah.

Brad Quillen 10:40

Yeah.

Caregiver Exhaustion And Role Overload

Colleen Montague 10:40

And then if it's alongside if you're working outside the home, yeah, you've got that job too. Correct. And there's a lot of stress that can come with that, with how many days can you really miss of work before it impacts your job performance or it impacts you financially? There's already probably a lot of financial burdens piling up for your family now with all of the medical treatments.

Brad Quillen 11:04

So how do how do we let people help in that scenario? Because sometimes we're not willing to let people come alongside us. We're embarrassed of what the house looks like, or we kind of feel there's that alone piece because uh people don't, if we're honest, treat us the same way because they're nervous that they might say something wrong, or we just want them to we wish things would go back to the way it was before.

Erin Nelson 11:28

Yeah, and I think one of the pieces, and uh, we had somebody say this to us um when they had a diagnosis, and they just said, Hey, when you see me, just give me a hug and tell me that you love me and just keep talking about it. And she just wanted a lot of honesty and she didn't want people to treat her differently. And I think nobody really likes pity, right? And so just being able to be honest, and we always say at Jessica's House really matching energy, and so I think we can do that in when someone is sick as well, and being able to reflect their energy and reflect kind of what we're seeing and mirroring their words and finding out what is important to them, whatever that might be. They might be asking us to pray for something specific, and we can do that, and just finding out what's important to them right now and meeting practical needs wherever we can, just like we do after a death.

Colleen Montague 12:31

You know, and we've talked about the golden hour of grief, and I think that we can say this is true in this period as well, just in the respect of if there's any time where it's okay for your house to be a mess and for you not to have it all together, this is it. And if you welcome in the help, then you're teaching people how they can continue to support you. But if you and I I can respect it, but if you are have a hard time asking for help or accepting, you might give that impression that you got it. And you're gonna lose that opportunity because people will back away and think, okay, well, she's got it under control or he's got it under control, they don't need my help. But then down the road, you may really need that support.

Erin Nelson 13:17

Yeah, and I think as we've seen long-term illnesses, at some point you are going into that place of needing help. And as hard as that is to kind of cross over into, we're always kind of getting there to that place where eventually it's just too big. And as our listeners are grieving, you know, we're kind of talking about, you know, how does this even impact and you know, our grief process. And as we kind of go into a place of being able to welcome more support, it really does help us as the person dies and we are in more of a place to say, yeah, like we can't do this by ourselves. We really need others to come alongside us.

Letting People Help Without Shame

Brad Quillen 14:09

So, Erin and Colleen, let me ask you this this idea that we we'll talk about at the house sometimes of the myth of being prepared, that we're gonna be ready when the death happens, that we've we've got it together and we've been doing all this and grief work, but there's also a piece of it of because we've been doing so much, and we've been doing the one and a half parenting jobs and our outside job that in all reality we even had a chance to slow down and just sit and be in grief or walk through grief.

Erin Nelson 14:37

Yes. And so I think the idea of anticipatory grief is you don't really know how much grieving you've actually done, right? And sometimes, you know, you can know that the death is coming, but you can still be totally unprepared when it really does finally come. And maybe you've just been so busy surviving that you haven't really had a chance. And maybe you've been in hope mode, right? Right. It's like you just keep waiting for that next treatment and you're waiting for this next thing to happen, and you're in this place where maybe you really haven't settled into the reality and you really haven't had an opportunity to pre-grieve or to anticipate the death of that person.

Brad Quillen 15:26

Something's gonna change. We're gonna get we're gonna get a good result.

Erin Nelson 15:29

Yeah, exactly. And there's just so much caregiving that goes on and it takes so much energy um when someone is actively dying. And maybe you've watched the decline, but maybe because it's right in front of your eyes, you haven't even really noticed us noticed it as much. And so when it finally does happen, when that person dies, you may just feel completely surprised.

Colleen Montague 15:58

Yeah, I think what you're saying is that time does not equal readiness. So you can know that death is coming, even if it's a pretty rapid decline at the at the end, but you could still feel unprepared when it arrives. You know, so that and t that relationship between anticipation and adjustment isn't linear, more time doesn't automatically mean there will be less pain on the other side of it as as you grieve their physical loss.

Brad Quillen 16:26

Yeah, I was gonna say, because some of it is they're still right in front of you in some ways. Right. And then there's that actual finality of yeah, they're just sick. No, they're they're gone, they're not in your presence anymore.

The Myth Of Being Prepared

Erin Nelson 16:37

Yeah. And it's kind of hard to believe that they're not there. You know, when they were in your home and you were by their side and they needed 24-7 care and you have not slept in so long. True. And all of a sudden it's quiet and they no longer need the care, which really, when we've been talking so much about how you know, the absence of them, it's like, where does your love go? You've spent this energy of love on them to keep them alive, to make sure that they went to the bathroom, that they are warm, comfortable, that if there's anything that they need, that they're they've had something to drink, and you have taken care of all of their physical needs, you've been there for them emotionally, and all of a sudden there's this huge void. And I think that adds such complexity to the grief experience when someone has a long-term illness.

Brad Quillen 17:44

So when the busyness is over of keeping them alive and comfortable, or the job of all that work is gone, the silence comes.

Erin Nelson 17:53

Yeah, but it's the silence, I think, um, just even in those moments, and also we've heard so much of the time, even the nighttime, because the night times were getting up, getting up and taking care of them. And so when the quiet comes in.

Brad Quillen 18:13

Yeah.

Colleen Montague 18:14

Also just that fatigue of having been a caregiver, you're entering into this new stage of grief, like already exhausted. And now we know, you know, we know that grief is already exhausting on its own, but you're kind of already coming into it really depleted in a lot of ways.

Erin Nelson 18:37

Yeah. And what's really hard about that is then there are immediate expectations about the funeral service and the people that are coming and all the neighbors that are bringing food and all and just giving yourself a moment to just be with your exhaustion and to sleep. And it's very difficult in our culture to restore and regenerate some of our energy. We don't always allow ourselves the time for that.

Brad Quillen 19:14

All right. So, Erin Colleen, before we go to a break here in a few minutes, there's three things, three words that I want to ask you about before we do a break. And that is there's guilt, there's relief, but there's also helplessness that I just want to touch in before we go to break on on these three things, because it's a real part of the anticipatory grief piece. And if we can just go to that helplessness piece, like because in we're in the middle of this, there's decisions that need to be made, feeling like we're not enough to make these decisions, but we've asked all the questions that we wanted to ask, and then there's some we forgot. So we feel like uh we don't have enough information, but we still need to make the decision. So there's some there's some helplessness on both sides, the person that's sick, but also the those that are taking care of them. So, how do we walk through some of that too?

Erin Nelson 19:58

Yeah, I think that helplessness. Piece is so important because I think a lot of people feel helpless during that time. Like you said, the person most affected by the disease, it's the person, the people around them caregiving, the friends in the family that just wish they could do more, something to take the pain away, something to help them. And everyone's scrambling. I was just with somebody recently, and she was talking about a family member who was really very gravely ill with cancer. And the person wanted to talk to them about these special mushrooms that could help them heal. And you know, everybody wants to come in with some idea about have you tried this special kind of like nutrient? And you know, we just all want to help, right? We just want to all fix something. But I think the root of that is that helpless feeling that there's just nothing more we can do, and that's really tough.

Helplessness, Relief, Guilt, And Anger

Brad Quillen 21:01

Another one of those words is that relief now. There's the helplessness, but we're kind of kind of shift into there's been the death, and there's somewhat relief too for the caregiver and those that are kind of in that immediate circle of helping out.

Colleen Montague 21:15

Yeah, it's you know, now your loved one is no longer in pain and you're relieved for that for them. There might even be moments where you're a little relieved to not have the the burden of care on you. You know, maybe you're able to get a little extra rest one time, or there's just this maybe some of the support you had to give them was really hard and painful for them, and you're you're relieved you don't have to provide that anymore. But then I think what can happen is then it's quick to maybe turn into guilt, possibly, because of course you're not relieved that they're gone. You want them here, but it can just be such conflicting emotions to hold together, but they are there. Yeah, and it's okay. That's a con those are common side-by-side emotions to have when you're grieving.

Erin Nelson 22:10

Yeah, it's like you are experiencing all the love you had for that person, and you're also experiencing deep exhaustion, right? And so those are both there at the same time. And so it's just you're human and you did everything you could do, and now you're left with some really complicated and confusing feelings.

Colleen Montague 22:37

You know, Brad, I want to add to that too, just about anger and what a real emotion that can be after the person's died for a number of reasons. There can be anger at the healthcare system. Maybe you feel like they they failed your person. Maybe even, you know, the unfairness that it had to be your person that died. Why them? You know, someone young and healthy versus maybe someone of an older age who is more, you know, ready to to go. Um, but even just like anger at the at your person for leaving, you know, as irrational as that might feel, or even if maybe your person decided they were done with treatments and you weren't done with with it, you wanted them to keep trying, but maybe they were done.

Brad Quillen 23:24

Or they weren't taking care of themselves in some ways, right? Some life decisions and choices that they'd made that I'm so mad if they would have stopped, you know, or listened or and the the talking about guilt, even last night in group here for me and the parent loss group, guilt is all around the circle. And it doesn't necessarily matter the how. I think guilt is just a common denominator with everybody in grief at some point. Yeah, and there were people that had long-term illness deaths last night in my group, and then there was a car accident, and there was guilt involved in that. Well, maybe if I'd gone, I would have slowed it down, would have changed the timing. Like that's just, I think, a part of grief.

Erin Nelson 24:04

It's part of grief. Guilt is part of grief, and regret is part of grief. And we will have those regrets even in a long-term caregiving situation, wishing we could have done more. Yeah. And we were talking earlier about even a parent who had guilt about remodeling their house, and then their child got cancer, and they thought, well, maybe I shouldn't have like, maybe there were chemicals that I didn't know about, and we just explore all these pieces, and that's a survival skill. Yes. Right. We are working really hard to stay alive and keep those we love alive. And this is a reaction of just looking back on is there anything that could have changed? That helps us for the future, right? And so it's just part of what our brain does. It's just the way we are created to make sense of the world and keep everyone safe. And so that is why we drive through those parts of regret and guilt. But we always like to say around Jessica's house, we don't want to park there forever. Yeah.

Break And Resources From Jessica’s House

Brad Quillen 25:11

Erin and Colleen, thanks for these few minutes together. And as we take a break, we're gonna come back and talk about the idea of how do we walk kids through prolonged uh illness and anticipatory grief. But even if it's now the death has happened, how do we talk about some of those things that happened in that season of the anticipatory grief and look back? So we'll be back in just a moment.

Gary Shriver 25:31

Jessica's House is a children's bereavement center located in California's Central Valley since 2012. We provide free peer support for children, teens, young adults, and their families grieving a loss. The When Grief Comes Home podcast goes along with the book of the same name. The book When Grief Comes Home is a gentle guide for parents who are grieving a partner or child while helping their children through the loss of their parent or sibling. When Grief Comes Home is now available at all major book retailers. And if you need grief-related support, please visit jessicashouse.org to download our free resources and be sure to follow Jessica's House on social media. If you have any questions or topics that you'd like us to explore in a future episode, just send us an email to info at jessicashouse.org.

Brad Quillen 26:25

Hey, Erin and Colleen, when we went to break, we were talking about relief after someone has died from a long-term illness, but the reality that guilt sometimes sets in, but also those feelings and the tension we have with anger. And that's true for kids too, that are in a family that has a long-term illness that's in an effect, or someone's died from a long-term illness. And Aaron, would you kind of lead us into some of that conversation of how do we walk with kids, with our kiddos or those kids that are in our care as we're walking through long-term illness?

Erin Nelson 26:56

Yeah, you know, Brad, as we've kind of talked about long-term illness, and we're talking about, you know, after the person dies, the kids might be reflecting on things that they wish they would have done differently. They may be thinking about something they did to cause the illness or even cause them to die. You know, kids have these imaginations and they kind of need just someone to process that with, right? And it's so natural for us as parents to hear from a child who is processing something like guilt or saying something is my fault, which is very common. Um, it's a very common thought that children have. And we want to say, Oh, it's not your fault, and just jump in really quickly. But just to know that if they're bringing that to you, they're trusting you as their parent to be someone that they can talk to about some of this confusing, all these confusing feelings and thoughts that they're having. And sometimes as we process something, as you just said earlier, Brad, guilt is part of grief. And they're also experiencing that. And so as they come to you as a parent, you know, at Jessica's House, we can we talk so much about mirroring and about reflecting. And if they say, you know, I feel bad that I argued with dad when he asked me to do something, and maybe it's my fault, and I made him even more sick because I did that. And you can just say, you are feeling bad, and you think maybe there's something that you did to cause dad to be sick, and let them go deeper with some of those feelings and help them uncover that it wasn't their fault, but to do it in a way where they're kind of coming to that themselves, and they can really work it through and you can help them with those kinds of thoughts that they might have. But if you shut it down too early, sometimes they will not express it and be more likely to hold it inside and not be honest with you.

Brad Quillen 29:16

Erin, the first few times that these conversations come up, I'm gonna imagine, and I've heard this around the circles here at Jessica's House of parents not being comfortable or that unease of when these conversations come up. And some of that is because we don't know what to say sometimes. Um, we're nervous of what our kids are feeling. And there's also the reality of I just can't take on more.

unknown 29:41

Yeah.

Brad Quillen 29:42

Like holding that pain with them.

Erin Nelson 29:43

Yeah. And we're kind of talking about being honest, even, you know, in an age-appropriate way to say, hey, you know what? Sometimes I feel guilty.

Brad Quillen 29:56

Yeah.

Erin Nelson 29:56

And I wish I would have done more.

Brad Quillen 29:58

Sure.

Authentic Conversations And Hard Questions

Erin Nelson 29:58

And, you know, it sounds like we're sharing in that today, and we're able to talk about that together. And, you know, the bottom line is we wish daddy never got sick. And we wish we could have done something to help him. And it's natural to feel guilt when someone dies, and we will have these feelings, and it's part of grief. And just to be able to talk about what that sound, you know, what that's like, and that we can hold relief and guilt and anger and sadness. We can have all of those feelings at the same time. And that as the intensity of grief is there, especially right after someone dies, that that can feel really confusing and so roller coaster-y in some ways. But that that's just part of the process.

Colleen Montague 30:52

Some ideas for how you could respond to these different feelings, you know, when it comes to relief, just to normalize it for them and say it's okay to feel relieved that mom isn't hurting anymore. That doesn't mean you didn't love her. Yeah. And that you don't still wish she was here. And with guilt, you know, as you help them unpack that at the end, wrapping it up with, you know, you did nothing wrong. You know, being tired of the illness didn't mean that you wanted this. And then with anger, just making space for it and allowing it to be. Sometimes we feel angry at the person for being sick and for leaving. That's a normal feeling when something unfair happens. With all of these, you're really teaching them that loving someone means that you can feel many different things all at once. And that this is all part of grief.

Brad Quillen 31:43

And you can even feel happy, even though you were just feeling angry because maybe your favorite show came on or something happened good at school that day, that there's the all these emotions go together. And that makes grief.

Spaces, Triggers, And Reframing Memories

Erin Nelson 31:57

You know, when I think about kind of the losses that they've had along the way, as you know, all the things that they've that they've been grieving. And, you know, just to say for the families that we're serving, we have a lot of the children have, you know, the a lot of the children at Jessica's House have experienced the death of their dad. And, you know, some of the things that they talk to us about is that their dad has, you know, changes along the way. I remember a conversation that I had where I had two kids in my group, and one of them was talking about how their dad just all the changes and how he wasn't able to play with them anymore. And as the illness pro progressed, he started talking to his children about how he was going to die. And he began having these very honest conversations with them. And the other child who also had a dad with a long-term illness, said, you know, my dad never really talked to us about that. And I just came home from school one day and he was gone. And so kids have all different experiences, and you know, we never know how the person, you know, what capacity they feel at the moment of being able to talk openly about their illness and about what they'll do. And part of even not talking about the death is maybe just protection, you know, if they don't feel like they have the capacity to talk about it, protection over everyone, even just um them wanting to fight for their family, for themselves. But, you know, as children, you know, as our listeners have kids, like thinking about what was the grief process before they died and how is that affecting your child now? Did they have a good understanding of all that was happening and what was going to happen next? And if were those conversations being, you know, were there honest conversations happening that this person's really sick and this illness will cause their body to stop working at some point. And so we just never know like the impact or what it will be like for them. But it's just that it's their that child has had a lot of changes. And no matter what, whether the person was honest or not, and didn't really talk openly, whatever that might be, they still noticed what was happening and the changes. And they saw whether that was hospitalizations or more time in bed, or you know, they went from playing catch to not being able to throw a ball, whatever that might be, they noticed those changes over time.

Brad Quillen 34:58

Erin and Colleen, I'm gonna throw a word out to you that I think on the the before the death, but also after the death that plays a big role in this. Erin, you just mentioned the dad that might explain this this is what's going on and that honest relationship about this is what's happening, this is obviously gonna cause me to die. It's a terminal diagnosis. That there's just those heart-to-heart conversations. But the word that came to my mind when you were talking, Aaron, was authenticity. That we're just authentic before and the illnesses going on, but also afterwards of where we're at.

Erin Nelson 35:32

Yeah, sometimes when we're here at Jessica's House, we're opening up to kids. Um, we're saying, Hey, what questions do you have? And parents can do this, right? To say, hey, what questions do you have about what daddy was facing or what really happened to his body? And so we can also re always revisit that to say what is it that they may have questions about, whether that's you know, medical procedures or you know, like why didn't the treatment work and what was it they were taking?

Brad Quillen 36:07

Yeah, what was tried? What did you try to do?

Erin Nelson 36:09

Exactly, exactly. And was there more that could have been done and why did it not work? And some of these questions that they might have, and also honoring what that person may have wanted, and maybe they said, you know, the the treatment was making me really sick, and now I want to not, I I don't want to feel that way anymore, and I just want to have as much time with you as I can without feeling the effects of the treatment. And so there are so many different decisions that are made, and so helping your child understand a little bit more about how you process together and what the illness meant and what decisions were made medically.

Brad Quillen 36:58

Erin, as you're talking, I just I just thought to myself, people have the hard decision of choosing quality time and not being as sick, though it may be shorter, than being sick and not feeling good and not having a good relationship because I'm just so sick, but it may be being longer, and that is so tough.

Erin Nelson 37:16

Yeah, that's so tough, and there are so many very complicated decisions that are being made during those times.

Brad Quillen 37:25

And in those hard moments, kids are exposed a lot, especially if the person maybe isn't home, you know, and the reality of of people wanting to be home when all this is happening and maybe choose hospice at home and those things that then that kind of I'm gonna use the word taints, maybe a room in the house or a space in the house that that's where dad's bed was, that's where mom's bed was. You know, I don't I don't like that space anymore. I don't want to go over there, and that's that's a real thing for some kiddos.

Medical Fears And Practical Supports

Colleen Montague 37:54

Yeah, and just for you to meet them where they are with that, to just say, yeah, you saw some really hard things, like with your dad being in pain or your mom lying in that bed and the medical equipment that was around that looked it looked really scary.

Brad Quillen 38:11

Yeah.

Colleen Montague 38:11

And so, yeah, that room's hard for me too to be in now. You know, the living room, for example. It's hard for me to be in the living room too right now. Or it's it's hard for me to be in our room right now, too.

Erin Nelson 38:24

Sometimes as we are thinking about, you know, whatever the sounds were and what we saw and the breathing changes, and you can have this kind of recording in your mind um of what you saw or what you heard, any kind of medical equipment, things like that, knowing that that does dissipate over time. Yeah. And you may have kind of those images in your mind or the sound that goes over and over in your mind, that's your brain just integrating and that it will go away over time. But to know too that um some ways to help that is to create other images and other noises and things like that. So kind of going into helping your child and you remember the before by looking at photos or maybe videos of that person during healthier times, telling stories about the fun adventures you went to, really tapping into some of the fun memories and being able to separate the person from the illness. You've lived in this illness for so long. Yeah, but who was the person? Who was the person that you remembered? Who was that person you met and decided to marry? Who was that person that held your child as a newborn baby? You know, how what kind of dad were they? How what kind of mom were they? What kind sibling were they and to know that this illness caused so many changes but it never really took the essence of the person away. They were still themselves and being able to tap into them in healthier times can really help with some of those images that the children and you may have.

Colleen Montague 40:25

We know too that with what your kids have experienced, there may be some real fears about getting medical support, going to the doctor, having to be in a hospital later in life. And so we like to encourage parents that, you know, you can inform the care providers of the fear your child has and the reasons for those fears so that they can maybe be more informed in their approach when working with them. And then even if they're going to have a procedure maybe in a hospital setting, ask that hospital beforehand if there's a child life specialist who can support your child, who can explain to them what's going to be happening first. There's even some great little kid like videos on YouTube of procedures and helping kids understand what different pieces of equipment are, such as like an MRA machine and just anything you can do to help your child go into future care more informed can help with the the fears they may have.

Brad Quillen 41:40

And kind of them being the experts in their grief and given empathy and offering for permission for them to feel and express and you know be kids. And so but we just need to walk beside our kids and trust that uh they have the ability in themselves to heal.

Erin Nelson 41:56

Yeah. They do they're natural mourners. Yeah.

Brad Quillen 41:59

That they are Erin I know there's something you wanted to share with our listeners today as we wrap up this podcast. Why don't you go ahead and take a moment.

Closing, Resources, And Review Request

Erin Nelson 42:07

Just as our listeners have given us really great feedback, I just want to say if you could just take a moment to rate our podcast and also write a review, it helps get it into the hands of those who need it most. And so every time you review a podcast it goes up a little bit into ratings. And so if somebody just types in grief in a podcast search they can find this podcast and as we know that it's been so helpful for parents who are grieving we want to get it into more hands. So please rate and review.

Brad Quillen 42:44

Thanks Erin and let me remind you be sure to visit jessicashouse.org for more grief resources and if you have any other topics or questions you'd like us to cover on this podcast we welcome your email at info@jessicashouse.org. Be sure to join us for the next episode of When Grief Comes Home. Until then we wish you well.

Gary Shriver 43:04

Jessica's House is a children's bereavement center located in California's Central Valley since 2012. We provide free peer support for children, teens, young adults and their families grieving a loss. The When Grief Comes Home podcast goes along with the book of the same name. The book When Grief Comes Home is a gentle guide for parents who are grieving a partner or child while helping their children through the loss of their parent or sibling. When Grief Comes Home is now available at all major book retailers. And if you need grief related support please visit jessicashouse.org to download our free resources and be sure to follow Jessica's House on social media. If you have any questions or topics that you'd like us to explore in a future episode just send us an email to info@jessicashouse.org. Thank you for joining us and we'll see you next time for When Grief Comes Home.