The loss of a loved one can be devastating, especially for children.  Elizabeth Schandelmeier, LCSW, APHSW-C,  from UPMC Family Hospice discusses the challenges children face and ways you can help.

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– This podcast is for informational and educational purposes only. It is not medical care or advice. Clinicians should rely on their own medical judgments when advising their patients. Patients in need of medical care should consult their personal care provider. The loss of a loved one can be devastating for everyone, especially children, and children can deal with their grief differently than adults. Hi, I’m Tonia Caruso. Welcome to this UPMC HealthBeat Podcast. And joining us right now is Elizabeth Schandelmeier. She’s a bereavement counselor with Family Hospice of UPMC. Thank you so much for joining us.

– Thank you so much for having me. It’s always a pleasure.

– This is such an important topic, and we’re really happy to make it a part of our series on grief because when it comes to children, things are different.

– Children are not just small adults. They are their own beings in their own developmental stage. And depending on their age, they may respond to grief in ways that can seem very confusing to those of us on the adult side of things. Children don’t have the baggage that’s sort of associated with death, and dying, and disease, and grief that we tend to accumulate as we age and go through life. So, they’re really starting with sort of a blank slate and trying to make sense of this big, huge change in their life. So, they really look to the adults around them to model, for them, what does grieving look like? How is it appropriate to express yourself? Is it OK to talk about these kinds of things? And, so, there’s just also a lot of lack of understanding. The idea of permanence can seem very big to kids, and so there’s a lot of explaining and talking that needs to happen with children to help them process helpfully.

– So, when you say they’re starting from a blank slate, does that make it all the more difficult for a parent? Because, then, does the parent need to control how they are reacting? What is normal in the situation? Because if you’re a parent, and you’ve lost your spouse, and you are sobbing out of control, and in a depression, and all of those things are understandable, are you then passing that all on to your child?

– Well, it can seem very stressful when it is explained in that sort of way. But the truth, I think, is that it is really important for children to see the reality of grief: that it is OK to cry, that it is OK to have days when you just don’t feel yourself, or when you’re irritable, or where you feel angry. It’s, of course, important for the adults around them to understand that they remain the adults. We don’t want our children taking care of us, but it is an opportunity for them to develop their own empathy and be able to offer comfort to a parent who might be crying to offer some solace and learn how to support others. The parent has to keep in mind, of course, that the child still needs structure, and stability, and to feel safe. So, again, we don’t want the child taking care of the adult, but I think it is entirely appropriate for adults to have their own grief experience in front of kids.

– And, so, what does the conversation begin to look like when it comes to talking to your child about grief and loss?

– I get this question a lot because people want to be very sensitive around children, and how they frame loss, and what happens to their person after a death. But, even this word that I just used – loss – can be very, very confusing for a child. You know, if you’re lost, how do you get found? Where did you get lost? You know, where can we go look for you? So, what I encourage parents to do, or the adults around them, is to make sure that they use really concrete language. We definitely encourage the words death, dying. The body has stopped working. This person cannot eat anymore; they cannot breathe anymore. And, just to make sure that the child understands that the body is no longer working, being able to tie that to this word: death. When we start using any kind of euphemism, we run the danger of having them be very, very confused. Or, sometimes, for example, when it comes to the things that we might say in a religious context, children can find that very confusing. Just as an example, “Oh, they’re now sitting next to God.” Well, you might hear your child then say, “Well, I want to go sit next to God.” And that can be very alarming for the adults to hear. It would be very misleading. But really it’s just the child trying to make sense of what this thing means. It could also lead to anger: Why did God take my dad now? It’s not that family should never use this language, but I would really caution and encourage families who are using language that is not concrete to make sure that they answer all of the child’s questions, and to also not be alarmed when the child starts mimicking that language and saying perhaps that they want to go there, too.

– And, so, what does it look like when it comes to funeral homes or viewings? Should a child go? If a child is fearful and doesn’t want to go, do you make them go? What does that look like?

– So, I will say that a lot of this is dependent on the family and the culture in which they live. Different people, different communities have different ways of including children or encouraging them not to participate in, whether it’s in the illness, in the actual death itself, or in the funeral. So, I think the most important thing is that the family be comfortable with the path that they take, so that they can feel relaxed about whatever it is the child’s going through or is not going through, and they feel supported by their community as well. With that said, if a family is open to it, the standard practice or what we advise is for us to include our children as much as possible. Death, dying, grief, loss – these are all a part of life, and these are all things that we need to be able to learn about and need to learn how to cope through it. And the only way to learn about that is to participate in that. I always encourage families to include children as much as possible. If it’s a funeral, maybe they could pick out one of the songs. Maybe they could draw a picture to put in the casket. Or, maybe they can have something to say during the eulogy. Whatever it is that you feel is appropriate is entirely fine, depending on, you know, your circumstances. So, having the children be present if possible, I think, is very, very healthy. I would always encourage a family to have sort of a backup plan. If the child gets there, they don’t feel comfortable, they feel angry, they feel sad, whatever it is, you know, have a designated person who could maybe take them home or take them to the park next door. So, just allow them to have whatever experience they’re having, but have a backup plan, too, in case things go differently than anticipated.

– Is it important also to do something to remember the person beyond the funeral? Can that help in the healing process?

– Absolutely. So, we would call that legacy: the person who died, maintaining their presence as much as possible in the child’s life, whether it’s planting a tree, or having made photographs together, or making a photo album. Anything that you can do to incorporate the memory of the person that they love into their life through time, through all of time. The idea is not to put this person behind them and have them forget all about it so they can get over it. The idea is to help them carry this person with them through their life, and feel their love, and feel their presence in as many milestones as possible through life. We forget sometimes that we often nurture a child’s mind and intellectual growth. We don’t always remember to nurture their emotional growth. And, so, as they’re moving through different developmental stages, you want to keep in mind that they may re-experience that loss, but in a different kind of way. So, for example, a child who’s lost their parent, you know, at 10 years old, there may be a completely different reaction as they’re graduating from high school, not just because it’s a milestone, but also because they’re a different developmental age. And, so, allowing them to sort of work through their grief, through the different stages over time is also very, very helpful for kids.

– And another aspect of this is children dealing with fear after the death of a parent, especially.

– Absolutely. So, children develop a new sense of truth after a death. We can no longer tell our kids, “Don’t worry, I’m never going to die. I’ll be with you forever,” because they now know for a fact that that isn’t true. And, so, we have to develop a different set of words to describe for our kids their own safety and their own security. These are things that almost across the board are going through kids’ minds. You know, if this can happen to mom, can’t this happen to dad, too? And, so, it’s really, really important for parents to sort of hit that one early – to, first of all, validate those feelings, but then also, to let them know that there are plans in place, that this is something that’s been thought about. For example, you might say to your child, “Hey, I go to the doctor and I take good care of my body. I take good care of my health because I want to be here for as long as possible with you. But, if something were to happen to me, this is what would happen to you. You might go to live with this person or that person, and I have made this plan. And you will have lots of love, and you will be taken care of, and you will have the resources that you need to grow into a healthy, happy adult. I think that I’m going to be here for as long as I possibly can, but if something happens, there is a plan.” And most children find that really, really helpful to hear.

– How important to maintain a routine in the household?

– As much as you can. It’s really important, and, of course, this is at a time when everything is chaotic, depending of course on who it is that died. If it’s a parent, somebody in the house, the disruption to routine is tremendous. So, I don’t ever want to say anything that would make a parent feel like they failed at supporting their child, but as much routine and structure as you can possibly accommodate, whether it’s keeping bedtime routine, sending kids back to school, if that seems appropriate to you, because it is a part of what is going to make their life seem normal again. You know, a death in a family makes everything seem so chaotic and so confusing. So, anything that you can do to provide structure and stability to their life, I think kids find a lot of safety and comfort in that. And, with that said, I also would like to encourage parents to remember to speak to their child’s school, or daycare provider, or babysitter, or nanny, or whoever it is. Any person who touches this child’s life really should have some understanding that they are going through a grieving experience. Sometimes, children’s grief experience looks like behaviors that we might consider to be acting out, and they get in trouble for that. That’s a big problem. There’s actually some amazing research coming out of Philadelphia, Tashel Bordere, who talks about suffocated grief. And that is when children are grieving and display appropriate grieving behaviors for a child of that developmental age, but their caretakers are not aware or don’t maybe have the education that they need. And, so, these kids wind up getting in a lot of trouble because it can be things like acting in ways that are a little bit more aggressive than they typically would. And when it’s grief, those emotions tend to be pretty intense. So, we want to be so sensitive to make sure that we’re not punishing children for grieving.

– And we’ve talked before: It’s not a straight line. Grief in general ebbs and flows. So, how do you know that it’s time to perhaps get professional help?

– One of the things that I recommend to families is that they seek out a child support center. So, for example, Family Hospice has one in Altoona; it’s called the Healing Patch. And, it’s a program where families go, the kids are split up into age-specific groupings, and the parents speak to each other about how to support grieving children. The children have the opportunity to be with their peers, and to not feel so alone, and to not feel so isolated. And, so, it’s not necessarily a strictly therapeutic approach. This is not like taking your child to a therapist. This is giving them the opportunity to be with other kids who are like them in that moment. And, that can be so, so helpful for kids. What I typically recommend to parents before they start thinking about whether or not their child needs, you know, professional help, is to seek out that kind of peer support for kids. Because most often, that is really what’s going to help them feel like they fit in somewhere.

– As for help available for the parent, and helping their child to grieve.

– Right. And that is, again, an important component of these centers is having other parents come together and talk about what’s going on in their own homes. Anytime that a parent has questions or concerns, certainly, you know, ask, reach out to perhaps the PCP, or your pediatrician, for resources that are local to your area. Reaching out, hopefully, to the school. Maybe the school has some information. The counselors or the social workers hopefully have some information about how to support grieving children. If there’s ever hospice involved, you know, definitely reach out to the hospice agency to find out, are there books, are there things that we can read, are there things that we can watch? And, so, there are actually tremendous amounts of support and resources out there. This is something that is so common for families, especially as we have aging populations. And, so, really doing everything that you can to also be gentle with yourself, which is something that we talk about a lot because the parent is grieving, too, whatever the relationship was. So, for example, if it’s a grandparent, and so, a parent’s parent, just keeping in mind that the relationships are different. You know, while you are grieving the loss of your mother or your father, your child is grieving the loss of a grandparent, and to a child, that might make a lot of sense. You know, kids often think anybody over about the age of 35 is old. So, you know, in a kid’s mind, well, old people, they get old and die. And that makes sense to them. And, so, their experience may be fairly smooth with moving through their grief if it seems normal in the world. Where you are just devastated because this is your parent. And, so, it can be really confusing. This is one area where adults often have questions about, what’s wrong with my child? Why don’t they feel like I feel? I know that they loved their grandparent. Why doesn’t it look the same? Well, because it’s a different relationship and their understanding of it is different. And, so, in these cases, you just really need to do what you can to find time to support yourself and move through your own experience.

– So, bottom line, what do you want to leave parents with? What should they keep in mind?

– I would say primarily, one of the things you want to remember is that this is a family experience. There have been times when I’ve been called in by parents, they want me to speak to their kids, and I certainly will. I’m happy to do that. But more often than not, what I do is speak with the parents and try to help them understand how to come together as a family to support one another, and to remind themselves that they are modeling for their kids what grief does look like. For example, I have parents saying to me, “Well, you know, I don’t want to cry in front of my child.” Well, OK, that’s all right. But, also understand that the message you’re sending to your child is that it’s not okay to cry when you’re sad or when you have intense emotion. So, just make sure that whatever it is that you’re moving through, that you are demonstrating to your child, this is how this work is done. And there can be a lot of different feelings associated with that. And it’s okay to tell your child, you know, “I feel really angry that your parent isn’t still here with us” I really thought they were going to be with us forever, and I’m angry that they’re not here right now to help you with your math homework because I’m not very good with, you know, I’m not very good at this.” And then you can help model for your child, what does it look like to work through that anger? And is it OK to be angry? Is that an appropriate emotion in grief? Of course it is. But then you can talk about, when I feel angry like that, it’s because I miss them so much, and I want them here so much, and that feels so big that I don’t know how to talk about it in a different kind of way. And then they can relate.

– And, then, at the end of the day, just recognizing that grief is normal.

– Absolutely normal. It is a part of being human. We have been grieving ever since the beginning of time, and so we have learned how to cope with that in certain ways. We don’t always have the community and support that we need, and sometimes that is something that we have to seek out. But for children, learning how to move through these really normal parts of life in a way that feels supported, and loved, and encouraged, I think, is the best gift that we can give them.

– Well, Elizabeth Schandelmeier, thank you once again for coming in and spending time with us today. We certainly do appreciate it.

– Thank you so much for having me.

– You’re welcome. I’m Tonia Caruso. Thank you for joining us. This is UPMC HealthBeat.

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