Tuesday, January 23, 2018

'We are hungry for neat, tidy stories.' Grief 'is much more messy'

By Louise Kinross

Last year, several parents whose children had died came to Holland Bloorview staff with an idea: They wanted to hold an annual celebration of life at the hospital to recognize their children and to develop supports for bereaved families. “When you walk through the door for the first time after, there’s a sense that you don’t belong anymore,” recalled Bruno Geremia, whose son Matthew died three years ago. “We live in a culture that doesn’t want to talk about death, especially if your child is really complex or fragile.”

Since then, the group hosted its first celebration of life event in Spiral Garden and offered a workshop on coping with the death of a child with Andrea Warnick. Andrea has worked as a pediatric oncology nurse and director of Camp Erin, a bereavement camp for kids. She now works as a grief therapist in private practice with children and adults. BLOOM interviewed Andrea about what it’s like to grieve the death of a child, and how to support parents and siblings.

BLOOM: What would be helpful for our parents to understand about grief?

Andrea Warnick: I think we often simplify grief. A lot of my job is helping people understand that it can involve such a wide range of emotions, and conflicting emotions.

For example, parents may feel heartbroken and relief at the same time, particularly if they’ve been caring for a child for a long time, or if they felt the child was suffering.

We don’t talk enough about guilt. For most of the people I work with aged 10 and up, guilt is often a part of the process. They may feel guilty that they didn’t do things with the person earlier, or that they were somehow responsible for the death. If the death resulted from a car accident, the person may think: ‘If only I had called five minutes earlier, maybe they wouldn’t have been in the accident.’ Perhaps the last time they were together they had a fight.

It’s not uncommon for adults to feel guilty the first time they laugh after their child has died, or the first time they realize they haven’t thought about the child momentarily. I always want to validate that it’s completely okay to still feel gratitude and joy and 'do' sorrow at the same time.

I find children are better able to balance joy and sorrow. They could be at a sibling’s funeral and be devastated one moment, and the next they’re running around with their cousins and having the time of their life.

BLOOM: Do you do a specific type of grief therapy?

Andrea Warnick: No. I’ll often use elements of narrative therapy, but what I do wouldn’t fall under one category. As a pediatric oncology nurse I was on the front end of things as kids were dying and I got to know grief in families really well. I also came to understand there was a massive gap when it came to supporting kids who are grieving.

I like to emphasize that grieving is natural and rooted in our humanness and it’s not pathological. For the vast majority of people, grieving is healthy. Unfortunately, we live in a society that’s death-phobic, and uncomfortable with grief and intense emotions in general.

As a result, families often receive well-intended but misguided advice. For example, it’s not uncommon, a few months after a child has died, for families to feel that people are suggesting they need to ‘move on’ or ‘get over it.’ We have to throw those sayings out the window.

Grief is not about getting over your child and it’s not about forgetting your child. What we want to do is help people figure out how they can stay connected to the person that died in a healthy way.

BLOOM: How do you do that?

Andrea Warnick: By talking about the person. If you’re supporting someone whose child died, let them talk about the child. Don’t tiptoe around talking about her. What often happens is people think ‘I don’t want to bring up the child’s name, because it will make the parent sad.’ What parents tell me is that they're terrified that people will forget their child and stop talking about them.

I always encourage supporters to ask if the person wants to talk about their child. Use the child’s name. You can say ‘This is one of the memories I have’ and share a memory. If you never met the child, you could say ‘I wish I got to meet your child. Can you tell me about him?’

BLOOM: Do parents of children who had disabilities or complex medical problems ever feel that people minimize their grief?

Andrea Warnick: Families where there’s been a prolonged illness, or where a child had a condition their entire life, tend to already be dealing with society underestimating the attachment and importance of the relationship. That gets magnified in death. Often the assumption is that the parent gets their life back, and the death is minimized because it wasn’t a healthy child. I work with a lot of families who are contending with that, on top of all the other complications that come with grieving in our society.

BLOOM: What I’m hearing from you is that grief is individual and personal, and also, that there isn’t an end-point.

Andrea Warnick: We are hungry for neat, tidy stories where we can package things in a linear way. Many people who come in to see me ask ‘How can you help me get to where I need to go?’ Grief doesn’t break down into Elizabeth Kubler-Ross's five stages and an end-point. It’s far more messy than that.

Grief is a process of learning how to live with loss. For most people, the feelings won’t always be as psychologically intense as they are at the beginning. Many get to a point where they learn how to live with the heartbreak in a way that still allows them to experience joy and gratitude.

BLOOM: So it’s about learning to live with pain.

Andrea Warnick: A lot of families come to a point where their pain isn’t as acute. But it’s the missing of the child—of the life the child led and the unlived life—the time they didn’t get with their child, or what their hopes were for the child’s future. People often get the idea that they have to hold onto the pain in order to hold on to the child. A lot of my work is helping them get to a place where they can stay attached to the child, but they don’t have to hold onto the pain.

BLOOM: So pain isn’t a marker of the degree of their love. How long do families usually come to see you?

Andrea Warnick: Sometimes a family comes in just for one or two sessions. They only need validation that they’re on the right track, and that what their gut is telling them is right. I validate for them that we live in a grief-illiterate, death-phobic culture, and that grief is not about ‘getting over a child.’ Sometimes they may see me for years, or not see me for years and come back.

Grief can come and go, and grief bursts can happen for years.

BLOOM: What is a grief burst?

Andrea Warnick: It’s when you’re going about your day and something happens, and a wave of grief washes over you and it feels very intense, like you’re right up in those early days. It’s totally natural, and it happens to everybody. We just don’t talk about it enough.

A parent may be walking through their house and come across something of the child’s that she wasn’t expecting, and it’s a trigger. Or sometimes we don’t know where a grief burst comes from.

Often times families feel as though they’re grieving ‘wrong,’ or that it shouldn’t be this hard. Families need to know that grief bursts are totally natural. As time goes by and they process the death, they may get further apart, but they still come every now and then.

BLOOM: I guess the problem is that we fear grief. We're afraid it’s going to pop up, or that we're going to get consumed in it.

Andrea Warnick: Often, as adults, we’re hesitant to feel the depths of our sorrow. We’re a society that’s so busy. I often come across a dynamic where parents keep themselves very busy, or let themselves feel some pain, but hold the intense sorrow at bay. They can’t see the utility of experiencing it.

My job is to help them understand that feeling emotional pain and longing and grief is actually, in the big picture, going to serve them well. I encourage them to find the time and make space for that. Often it’s when they’re in the shower, or in the car listening to music.

Of course we all feel things to different depths and there isn’t a right degree.

I help people learn that they have the capacity to feel deep sorrow, and that they’ll still be able to get up and continue on with their day.

Teenagers may be afraid that they’ll be sucked down into a black hole. There aren’t any absolutes, and there are situations where people can get stuck. But for the vast majority of people, they can feel extreme sorrow and not get stuck in it. I help people to gain the capacity and confidence to know that they can go to these places, and be able to process death in a healthy way.

BLOOM: I know that the families who started the supports for bereaved families here want their children to be recognized and remembered in a more formal and ongoing way.

Andrea Warnick: The most important thing is that death is acknowledged. Many pediatric hospices have a memory book that everyone passes when they come in. I was recently at the Roger Neilson House in Ottawa, and there was a wall with the names of children who had died. It's called The Wall of Stars.

BLOOM: Several years ago our beloved therapeutic clown Jamie died of a brain tumour, and some inpatient parents asked that their children not be told. This created a very difficult situation for the remaining clown, Helen, who had to field questions from children.

Andrea Warnick: A lot of this is rooted in our death-phobic culture. Parents think ‘I don’t want my children to know, because then they’ll be upset.’ What they don’t realize is that it’s far scarier for a child when a beloved therapeutic clown has gone missing, and no one is saying what’s happened, but people seem upset.

In a situation like that, I would do an education seminar with the parents to reassure them about why it’s important to be honest with children and to use correct language, rather than saying ‘he passed away’ or ‘he is no longer with us.’ I would say: ‘He died from a brain tumour and it isn’t anybody’s fault, and it’s not something you can catch.’

BLOOM: Is talking to children something you addressed in your workshop here in December?

Andrea Warnick: Yes. I wanted to give parents the language to talk to their surviving kids. These children need a narrative if someone asks ‘What happened to your brother?’ They need to have a response, whether they’re comfortable saying ‘He died’ or ‘I don’t want to talk about it.’ I want to make sure the child has that language in their back pocket.

I always use the word ‘die’ with children. When we skirt around it with euphemisms, it’s confusing for kids.

BLOOM: How do you suggest parents explain what death is?

Andrea Warnick:
I encourage parents to begin with talking about the physical part. So I say: ‘Death is when the body stops working, and will never work again. And the body doesn’t feel anything anymore.’

Oftentimes, parents don’t want to explain certain things—like cremation. But it’s very important.

Quite often, parents fall into the trap of thinking ‘I’m not going to explain death physically. I’ll give them an existential explanation, like he went to heaven.’ That is very confusing for kids, who think concretely.

I encourage parents to start by explaining the physical aspects of death to children, and then introduce their beliefs once the child has demonstrated an understanding of what happened physically.

BLOOM: What if as a parent you don’t have a belief about what happens to a person, separate from the body?

Andrea Warnick: It is okay to say you don’t know! 

I often have parents tell me: ‘I’m saying she’s gone to heaven, but I don’t know if I believe in heaven.’ 

Kids as young as three, where English is a first language, tend to understand the word ‘mystery,’ so it's a great one to use in these situations. Historically, we've lived with a lot of mystery, and this is a unique time in that if you don’t know the answer to something, you just Google it. It's okay to explain to kids that there are limits to what we can understand as human beings. So in these situations, I coach parents to explain that when it comes to the part of a person that is not the body, it's okay to say: ‘We don’t know what happens, and it’s a mystery.’

A great book for kids aged four to eight years old is When Dinosaurs Die. At the back of the book, they share a lot of different belief systems. It’s good for young children to learn that people believe in different things.

Canadian Virtual Hospice just released a whole website called Kids Grief which I contributed to. It has three modules on how to talk to children and youth about death and dying, as well as webinars and other resources.

Any child in Toronto whose sibling is dying or has died can access free counselling through Dr. Jay Children’s Grief Centre. And Camp Erin, which is a weekend camp for kids, is totally free.