EP 19 - Children in Grief

We often want to protect children from grief, but this is not always possible, or desirable. Children need to be supported to process their grief in an age appropriate way. We share some suggestions for how to best meet the needs of your child. 

Featuring Paul McCone, a counsellor at Cranford Hospice who has experience working with children and adolescents through grief and loss.

Written resources to support this podcast can be found here 

Find out more about Otago Community Hospice via our website, facebook or instagram 

Email us:  endinglifewell@otagohospice.co.nz 

Transcript

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Ep 19: Children in Grief 

Kia Ora and welcome to The Ending Life Well Podcast. This podcast series for carers focuses on advice and practical solutions for carers who have been thrown into the deep end looking after a loved family member or friend in their last days, weeks or months of life. 

Our episode today is Children in Grief.

Hi, I'm Denise van Aalst, a senior palliative care nurse and educator at Otago Community Hospice. Today, I'll be talking with Paul McCone, a counsellor at Cranford hospice. Paul’s had particular experience working with children and adolescents for over 20 years, and this is a passion and interest of his when talking about grief and loss.

Hi, Paul. 

Paul

Hi, Denise. Thanks for having me.  

Denise 

Paul, we know that children often do grieve. And they're really aware of what's going on around them when somebody is dying, or is even just really unwell. But we often want to protect children from that as well, don't we? And I just would like to talk with you about how do children process grief, and what are the things that we could be doing to support children through tough times?

Paul

Yeah, that's right. Children, like us, can only process you know, information that they've been given, or information that they're picking up from their environment. So, it's really important, I think, Denise to actually sit down with children and talk at an age-appropriate way, about what's going on, so that they're not unintentionally filling in the gaps, or googling things that perhaps they shouldn't be googling, or just mis-reading the situation. And then it's just simply about - lots of parents think, ‘there's something that I need to do’. But actually, it's just about being emotionally present. And consistently, so.

Denise 

Paul that really strikes a chord with me being emotionally present. So not needing to do anything, but being there, can you explain that a little bit more? 

Paul

I mean, it's a lot of things that come into play there. It's sort of a space when parents need to kind of get out of their logical or rational thinking, where they're not sort of, ‘oh what do I need to say, what do I need to do’, it's just about being present. Often, it's less is more. So, you're just sitting, listening, hanging out. It might be that you're joining with your child, in some activity that they really love. And you're just being really present, and just seeing what comes up for them. And when I say emotionally present, I mean like whatever emotions rise to the surface for them, it's about acknowledging and validating those. Helping them understand that given the situation, those types of emotions are actually very common, very normal. It's okay to not be okay. And the best way to do that, I think, is for the parent, to actually start opening up and sharing more of their own emotional world. 

Denise

Yeah, because we can tend to want to protect children, understandably. We want to insulate them from it, we want to protect them. But actually, if we're not honest with them, then they don't know how to be honest with us do they?

Paul

Yeah, I mean, in psychology, the old adage is role model what you want in return. So, if we're trying to protect our children from the emotional pain of grief or the anticipation of losing someone that they love, and we're not sharing our own emotions with them, we're actually role modelling to them not to share their emotions with us, which is actually the opposite of what we want. So, we need to sort of lead by example, really.

Denise

Paul, I'm going to go back, you said something earlier about children, if, if we haven't given them the information, they'll start to make stuff up, and I recall that with young children, often, they can end up inventing something that's much much worse, and it's hard to know what might be worse than the death of a parent. But if they then connect it to the fact that ‘I misbehaved last week, and now dad’s sick, so it's all my fault’, that is certainly worse than them just knowing that Dad is dying of something completely unconnected. So, it is so important that we do give them, as you said, age-appropriate information about what is going on.

Paul

Yeah, that's so common, Denise, just that whole personalisation, for children. You know, it's just so common, and they're really vulnerable for that. So, you know, if there is something that's going on, and they don't have all the information, they will quite commonly assign blame to themselves. ‘I've done something to cause this in some way’. And then that causes, a different type of harm, not to mention being really confusing. 

Denise

And often, they won't be open about that either. Because if you’re being secretive, they're going to take their cue from you, they're going to be secretive. And so they're not going to tell you that you're blaming themselves for this, for what's going on.

Paul

No, if they think, they're at blame then they're not going to voice that, because they don't want to be blamed for more things, or they don't want to get in more trouble. So yeah, they will typically just keep quiet about that. You know, you can often have children in the bedrooms, trying to process or think about lots of this type of stuff. And all of this self-assigned blame is going on, and parents often unaware. So, it's really important, I think, to actually depersonalise what's going on, and something that helps with that, is a thing called Narrative Therapy, where they talk about externalising the problem. It's often helpful for the parent who's unwell, and perhaps might have cancer, and also for the child, because, you know, rather than the child getting angry at themselves, or the parent getting angry at themselves for being unwell and causing harm on their child, it's best to be assigning the anger to the cancer, something separate from people, if that makes sense.

Denise

 Yeah, it does. And so Paul, do you think that this is, is also age relevant? Are some of these things more likely with younger children? Or can it arise at all different ages?

Paul

Typically, it's more young children that tend to personalise things. But young children, are also, you know, quite concrete in their thinking. They think in literal terms, so they don't quite understand metaphors or symbology. So, for young children, they often need facts, or they need to see scans or, they need some sort of visual prompt to help them understand what's going on. 

Denise

Now that might be quite surprising for some adults to even think of showing that degree of information to young children. But you're saying this helps them then understand just what's going on. And, and I guess that really helps depersonalise it doesn't it?

Paul

Yes, that's right. Well, it's about sort of understanding how your child takes in information. And you know, that differs at different developmental stages. So, for young children, often they need to see, as well as hear. So, showing things like scans. I've had lots of cases where that's happened. And that's been the one thing that's helped fully explain to the child, the kind of true reality of what's going on, it was the one thing that they actually needed.

Denise

I've never thought of that, but I can see how, you know, especially for something like a, where there’s a tumour growing, where you can see it. Now, that's something concrete, that you can hang it all on. 

Paul

That's right, 

Denise

And really understand.

Paul

Well, otherwise, from a child's perspective, you know who sees things through a literal lens, that often seeing their parent who's been deemed, with a life limiting condition. And to them, what they're seeing, versus the diagnosis and prognosis, don't actually line up? Because their parent actually seems to be functioning fairly well, you know, the symptoms aren't major, they're not in a wheelchair. You know it's different for cancer, like it's inside, internal. So how do you help them understand, you know, the extent of what's going on without scans? 

Denise

Yeah, talking still perhaps at the moment about younger children. is there anything else that we should be doing early on, you know, when we know someone's got a terminal diagnosis? Have you got any tips about how do we broach telling them what’s going on?

Paul

Yeah, so really good question Denise. What comes up for me when I counsel parents is, ‘if I tell them?’ And if I decide, yes, ‘then how do I tell them?’ And then the next question is, well, ‘when? When do I tell them?’ And so, when you think about parents deciding about if to tell them, you know, is that a good or a bad thing, I don't want to traumatise or scar my child for life. That's often what I get told, ‘Do they even need to know?’ And the helpful thing about that is, if you actually do decide to tell them, then it will help them start to make sense of some of the other things that are going on in their home, in their family. You know, they're seeing mum and dad have conversations, there's more emotion in the house, which they may not cognitively understand, but from a feeling level they pick up. It just helps kind of put the puzzle pieces together for them, which I think is really helpful. And it minimises that personalisation, vulnerability that can happen.

Denise

That makes sense. The Kowhai program on which this podcast series is based, was itself based on research done with family carers, thirteen years ago. And one of the images and stories that came from that was a mother talking about how to tell the children and she said, “We decided to tell them the day we found out that their father was terminal. We’d planned to hold over until the school holidays, but we thought there'd be a shift in the thinking in the house. And they would sense it. When adults have disturbing news, they rally support, the phone goes more, flowers arrive, cooking arrives, and so we thought we'd tell them straight away. It's something you've never done before as a parent. You watch your children outside, and you see their innocence as they jump on the trampoline. And you think in 10 minutes time I'm about to change their world. So, we sat them down, and it was awful. And we all cried. The pain of the children is the worst thing about this cancer for us. It's not my loss as a wife, but the children not having their father is the awful thing.”

And it struck me every time I read this, how very intuitive this mother is, that they need to do this, because yes just what you've just said, the children are going to pick up on that shift in the house, so they need to hear it from the people they trust. 

Paul

That's a great example of what we've just been talking about. You can also sense the depth of emotion and pain and fear and anxiety for that parent, you know, anticipating having that important discussion with their children. So, while it's intuitive, and in most cases, the right thing to do, this is an incredibly brave thing to do, isn't it? 

Denise

Yeah, I agree, hey, I tear up every time I read that piece, because I admire their bravery in taking that on, because we do want to insulate our children don't we, but knowing it's the right thing, doesn't make it easy. This is very hard to do, but it is the right thing to do. 

Paul

Yeah, often it is the right thing to do. Because, as you say they need to hear it from someone they love and trust. And they need to help make sense of it. And the reality is, if it's a life limiting condition, then we need to be thinking about how do we prepare them for what's coming? And, if they're missing information, and we're not bringing them into the fold, and continuing to have multiple discussions with them, how do they begin to process what's going on, and what's going to happen? It just becomes so much more difficult for them. And we think we're protecting them, when actually, more often than not, it's making things harder for them. 

Denise

We often have people sort of saying look, you know, when somebody's dying, should we let the children be there? And I'm always a very staunch advocate saying, “yes, yes, you should. And they will cry, and they will be distressed, but they do tend to take their cue from the adults around them”.  And they're often quite mercurial that they'll be, you know, they’ll ask a question, ask a tough question, and then run outside and be playing outside bouncing on that trampoline, and then come back and say, ‘is granddad dying?’, and then run off back outside again. And that's all okay. That's not them being hard. That's them processing this isn't it, at their own level?

Paul

Well, that's right, like, especially younger children, you know, they don't tend to over analyse, you know, that's for us, adults and teenagers to do. And then as we turn into adults, we get way too good at it. But, you know, for young children, they're very much in the moment, aren't they? And so, what they're seeing in front of them, they're starting to process or if parents are having a discussion with them. That's an opportunity for them to process a little bit more, but then very quickly, their focus turns to something else. And they're not thinking about what's happening in that broader context. So, they do switch. And that can seem strange for some parents.

Denise

I think if you've not experienced it before, it can seem almost hard hearted, but actually, it's really good, their bounce back, the way they can do that. 

Paul

Yes, yes. It's, I've learned to see it as like part of their protection really, part of their coping. So, it's actually a really good thing. It’s a buffer. 

Denise 

Paul, what about older children, you know, perhaps that kind of preteen that you know, nine to 12 kind of age bracket. So, they are going to be thinking things through a lot more at that age, aren't they? 

Paul 

Yes definitely. They're thinking of things a lot more through. That’s that sort of pre-pubescent sort of stage as well. So, there's often things happening or changing in their body, there's moods, and emotions, their emotional intelligence and language starts developing so there's, their whole emotional world is growing really. Their ability to articulate that world and discuss it with adults, you know, that's still developing. So, while it's going on for them, and they're feeling a lot more, and they're experiencing a lot more, their ability to communicate it, hasn't caught up with that, that comes a bit later. So, there's often still a lot of guesswork with parents, and that age group. As adults, we kind of go with each other “How are you feeling? Are you doing okay?” And so, when you ask questions like that to somebody in that age group, you're going to get more than likely quite a closed response. 

Denise

Because they probably don't know how they're feeling. 

Paul

And so again, just coming back to that, model what you want in return. So, you know, in all of these discussions, there’s opportunity to teach and coach emotional intelligence, you know, to help develop their ability to identify their emotions, to articulate their emotions, to scale their emotions, you know, is that eight out of 10 anxiety? Or is that just a one or two? And then to actually start to regulate their emotions, parents can share what coping strategies they use to cope with their emotions, or they can talk with your children about, so when you do feel sad, what helps you feel a little bit lighter or happier? Or if you do feel anxious, what helps calm that down? What have you noticed? Because often, for them, they do have coping strategies, they're just not aware of them. They're not using them consciously. They're just happening subconsciously. So, bringing their attention to them helps, helps them able to use them more consciously.

Denise

And I like what you were saying too, about, you know, role modelling. So, I guess would that be, you know, that sitting down and sort of saying, “so, you know, Jane, I know, I'm, I'm feeling really sad about what's happening at the moment. And that sometimes makes me feel a bit anxious. Are you feeling that?” Or, you know, so you're giving perhaps giving them some words, but then still trying to open it up for them to have alternatives?

Paul

Yeah, that's right. I'd even go further and say “when I feel really, really sad, I kind of feel it in my heart, you know, like, where do you feel your sadness in your body?” “And when I feel anxious, I feel like really tight across my chest, and my throat sort of closes up, and sometimes it's a little bit harder to breathe, or, or I'm clenching my jaw, or, you know, like, what do you notice in your body? How does your body tell you what it's feeling?” So that you learn to recognize the signals? 

Denise

Right. That's, that's really helpful. That’s some quite concrete steps that we can be doing when we are talking with youngsters. 

Paul

Yeah, we learn as adults vicariously, I think, just through experience, but if we are to sort of be more conscious about what, what we're teaching, as far as emotional intelligence with children, this helping them with the tools and with the language, so that they're starting to connect the dots. 

Denise

So, Paul when a family's got some bad news. You know, perhaps the children have known for some time that dad's been a bit unwell. But now there's been a shift. So, dad's now being told that it's terminal diagnosis, it is life limiting. There is perhaps only certain expected weeks or short months to live. What's the best way for parents to go about telling their children this? When is the right time for them to share that with the children?

Paul

I think that's a great question, Denise, because I've had parents, you know, really debating that question with each other, and with me, over the years I've been working in palliative care. And it's a tricky one. I mean, obviously, they know their children really, really well. They know their personalities, whether some will cope, and some may be a little bit more sensitive. Often the fear is “aren't I just traumatising them before they need to be traumatised?” But actually, what I've learned from them, and certainly what the research talks about is, if you actually bring them into the conversation in context of what's going on, ‘Yes, mum or dad has been given this diagnosis, and this is what it means’. So, Mum or Dad is now dying, then you have the opportunity, then to help them process that, to be there for them, to teach them to support them, to help them process what that means.

Denise

That's a really great perspective, that in fact, it enables you to continue to parent them. And in fact, you're able to put things in place, if you're the person who is dying, you're able to now give your kids some support, some role modelling, some education that is going to support them, when you aren't physically here any longer. But the lessons you're able to go through with them now can help them beyond that time.

Paul

Again, coming back to building resilience and emotional intelligence. So, in that process, you're not just helping them for after you die, and they're in their grieving process, you're really setting them up for life. We know life happens, and there'll be other stressful events happen in their lives, and they'll be far better equipped. So, there's a huge opportunity in telling them early, I believe. 

Denise

Yeah. That's, that's such a good point, Paul, and I thank you for sharing that. Because I think it's probably one of the biggest challenges that a parent might face. I think that's some really good guidance. And thank you for that.

Paul

I think one of the major barriers for the parent, is, if I choose to tell my child that, that I'm dying, and share that news with them, you know, there are lots of parents that are then really anxious about ‘well, they're going to be really upset. And I don't know what to do next. Like how do I support them?’ So, you know, I think that can be a fear for lots of parents as well. It's like, am I equipped for this? Do I have the skills? Do I have the knowledge? In counselling, often, it's about helping them prepare for that next stage once they do tell them. 

Denise

So, there could be real value for some parents in reaching out, especially those who are on a hospice program. You know, hospices generally have counsellors available. And that might be what they would like to talk about with a counsellor is getting some guidance and maybe even some role modelling of how to approach telling their children before they do that.

Paul 

Yeah, absolutely. Because it's, it's about having some confidence because as we talked before, about the bravery and courage that's needed to sort of step into these conversations. It’s just having some preparation, hearing some knowledge perhaps from the hospice counsellor, so that you're feeling a little bit more confident for, if your child reacts this way, you already have talked with a counsellor about how you might sort of go about supporting your child with those types of emotions. You’re just feeling a little bit more equipped. 

Denise

And I guess too parents need to remember that generally, they know their kids best. So, they need to trust themselves. Most people have been pretty good parents, until this point. So actually they need to trust themselves that they do know their kids. And we could often probably predict what way our children might react, and we could have three kids, and they could all react in very unique ways to that news, one might get very quiet, very reserved, need time to process it, someone else could be very outgoing about it. You know, they're all going to be unique, but they'll probably know what to expect.

Paul

That's right. It's absolutely trusting in your knowledge of your own child. And listening to the intuition. Your parental intuition is, for most people, incredibly strong. And so, it's not again thinking, or overthinking what do I do? How do I do it? It's actually just about being emotionally present, and listening, tuning into your own parental instincts. And following that. So often I find, with parents, the fear or anxiety about telling their children what's going on, the fear of it, and anticipation of it was actually much worse than how it actually was. Because of that very reason, you know, they knew what to say, they knew how to support their children. And their children, you know, leaned into them, and asked them questions. 

Denise

I think that point’s probably worth repeating really, Paul, isn't it? That the reality is most often less fearful and less stressful than the anticipation of it. 

Paul

It’s like that for many things in life, but certainly for this too. 

Denise

Yeah. And Paul, you've actually created some handbooks, that are age appropriate, haven't you for children, that parents and children can work through together as ways of helping them put down or, or express how they're feeling and ways of dealing with it?

Paul

Yes. After working in the hospice, and working with children, it was sort of clear to me that we could do a little bit more in this area of supporting children and kind of support in a way that helps them understand and process, helps them kind of learn about emotional intelligence and how to regulate their emotions. In essence, helps them process their grief and what's going on for them, but in an interactive sort of way. And I wanted to also give the parents, who often don't know what to say or how to say it, a bit of a guide to follow. So, in essence, the workbooks open up conversations with their child, which then enables opportunities for them both to share and learn and grow. So, the first book that I created was when someone you love is dying. And so that's when a parent has been given, or a grandparent, has been given a terminal diagnosis. And those adults decide to tell the children, and then the children are then having to process what that means to them, and how to cope with that news.

So, in that particular workbook, as well as learning about their emotions and learning about grief, there's also some legacy work built in, which means that the child has opportunity to write all their thoughts and feelings or write special messages that they want their dying parent to know. And they can hand the book over and the parent who is terminally unwell, can actually write and draw pictures back to them. So, it just enables some special kind of messages to go to and from, which may not actually come to fruition, without the workbook because often, they're just too hard, those conversations.

Denise

Paul, thank you for that. It’s been really helpful talking about grief and loss for children today, and for those younger people. I guess really it does come down to the fact that children are naturally resilient and if we support them through that resilience and trust ourselves, we will get through this together. 

Thank you listeners for joining us today. This podcast was brought to you by Otago Community Hospice, with support from Hospice New Zealand. If you found this discussion helpful, check out our other episodes of Ending Life Well, a podcast series for carers. You can also find more resources for caring for a person who's dying at otagohospice.co.nz/education

If you would like to look at the workbooks mentioned in this episode, please email Paul at paul.mconie@gmail.com  There are also further resources available for working with children regarding grief and loss at skylight.org.nz