Loss and Grief. Supporting Our Children When Dementia, Disease or Death Visits a Family

Larissa Dann 23rd October 2016

In western culture death, and diseases such as dementia and cancer, seem to be hidden away, not generally discussed – because ‘it won’t happen to us’.  Inevitably, though, the unthinkable will occur.  How can we help our children cope with loss and grief, when a loved relative starts to fail in mind or body, or dies?

Our family decided to be open and honest about illness and death.  Very different from the way my mother was raised.

My mother has never attended a funeral.  Ever.  Why?  Because her mother had wanted to do all that she could to protect her children, to make them happy. They had a hard life, and my grandmother resolved to ease what burdens she could for her children. Deemed ‘too sad’ for children, funerals were avoided.

(Hmmmm.  The more things change, the more things stay the same.  My grandmother’s attitude, 80 years ago, reflects so many of our parenting practices today.  We want to help our children by protecting them from sadness, fear, or any sort of upset.  We want them to be happy.) 

The consequences of my grandmother’s attempt to protect her daughter were life-long.  When my mother’s partner, her soul mate, died before he turned 50, she and I organized his funeral.  But she could not bring herself to attend.  When her beloved father died in the same year, she avoided his funeral by preparing for the wake.  When her mother died, Mum’s absence at the moving graveside ceremony was noticed, and she was judged.  Harshly.

The only funeral my mother will ever attend is her own.

So with that background, my husband and I resolved to bring a different perspective to the children we were raising. 

I have a particular parenting style, carefully chosen, where I allow my children to ‘own their own problem’.  This means that rather than take over their discomfort (by trying to make them happy), I sit beside them emotionally.  I hope that by listening to, and reflecting their feelings of the moment, by guiding them through problem solving, they will develop resilience, empathy, and the ability to cope.  I have employed these strategies from the time they were babes-in-arms, and am fortunate that my husband supports and practices this parenting approach.

In a confluence of events some years ago, both my husband’s father and my grandmother died within a week of each other.

Our daughter, aged five, was invited to view her deceased paternal grandfather.  She crossly refused and stayed outside the viewing room, flinging herself angrily around on the chapel’s furniture.  Her father came to her, kneeling down to her level. 

‘You seem afraid of seeing Grandpa, of seeing him dead’. 

‘Yes’, she nodded, and calmed down considerably.

‘This is what he looks like’, and my husband proceeded to describe his father resting in the coffin.

‘Would you like to say goodbye to him, if I hold you on my hip?’

‘Yes’.  And they moved into the room together.

Just days later, my children found themselves carefully choosing a song to perform for the funeral of their beloved great-grandmother.  My daughter’s five-year-old voice belled out across the cemetery, while my son accompanied her on piano, his emotion tangible. Their Nan’s coffin, overflowing with flowers of affection, shone on the grave into which she would be lowered.  We marked her passing with love.

Now, years onward, my children face the death of their remaining grandparents. We know this because their grandmother has advanced dementia, and their grandfather has terminal cancer.

Their grandmother’s dementia has been with us for years.  Each stage of the disease is downward, a mini-death of who she was, another point of grief. Their grandfather’s diagnosis is more recent, and every day is an unknown.

So, already, my children feel the loss of family members.  As their grandparents’ respective diseases progress, my children lose aspects of the grandparents they loved. My daughter realises that she cannot remember her Nonni before Alzheimer’s. She does not know her voice, cannot recollect playing or laughing with her, or being loved by her.  My son sees aspects of his grandfather’s keen mind, his pun-making humour, temporarily change with each anaesthetic, each pain-killing drug.

How can I help my children, my young people,  through these times of loss?  The reality of another’s death, the pain and grief, is not something for which one can easily prepare or explain to a child or young person.  (just as you can’t prepare someone else for the realities of childbirth, or being a parent).

Some Ideas On How To Help Children and Young People Cope with Grief and Loss

From our family’s experiences, and my perspective as a parent educator, here are some steps that may help children deal with grief and loss.  (Further resources are listed at the end of this article)

Look After Ourselves

As with the oxygen mask in a plane, we need to take care of ourselves in order to be there for our children.  Acknowledge your own pain, and be kind to yourself.  Seek support from another adult, such as a partner, trusted friend, or counsellor.  Understand the process of grieving for both yourself, and your children.

Empathise With Active Listening.

Active Listening means we tentatively guess what our children are feeling, and why. We then empathically state back our understanding of their experience. When they are sad, Active Listening helps us to be there with them, to hold their emotional hand.

‘You’re feeling sad about grandma dying.  You’re really going to miss her’

Allow Our Children To Feel Emotions. Avoid ‘Roadblocks To Communication’.

Be present for your child, and use Active Listening to walk emotionally beside your child. Children may feel a myriad of new or painful emotions, such as loss, helplessness, sadness, guilt, or fear. Active Listening (where the emotion is named) helps these feelings to pass. Your child will learn that they can get through the bad times – they won’t feel awful forever. 

Empathic silence can also be helpful.

Avoid roadblocks, such as minimising what your child is feeling.  Even reassuring them may not be helpful. After all, we both know it won’t be all right – Grandma is not coming back to cuddle them tomorrow. This video beautifully shows how to sit with someone and their emotions around grief.

Understand That Their Behaviour May Change Because They Are Grieving.  Avoid Punishment.

Remember that as we grieve, our children will also grieve. They have not only lost their relative, but also (for a time) the ‘normal’ Mum or Dad they’ve known for their entire lives.

Our children may not have the words to express their grief, so may behave in a way that indicates their distress.

They may begin to act out of character.  They may become clingy, silent, angry or aggressive.  They may start wetting the bed again, or have trouble falling asleep.  They are not ‘getting at you’, and it’s important not to take their behaviour personally.  They are simply letting you know that their needs, such as certainty or security, have been threatened, and they require help to cope.

Punishing children at times like this (such as using time-out) can increase your child’s distress.  This is a time they most need your support.  They need to be connected to you, not isolated from you.

My husband recognised that our daughter’s fear of seeing a dead body, was causing her angry behaviour.  He listened, explained, and helped her deal with her fear and uncertainty.  She was able to handle this exposure to the other side of life, because of the empathic understanding of her Dad.

Be Honest – Our Children Need To Know

We might want to protect our children, by keeping them out of conversations regarding our relative’s illness or death. 

However, our children will hear the whispers, wonder about the closed doors.  If we don’t share the facts, then they may imagine things – which could be far worse than reality.  They may feel hurt and confused that they’ve been left out. 

Try sharing relevant details in age-appropriate discussion.

Use I-Messages When Talking About Your Own Feelings

When someone close to us is ill, or dies, we will grieve.  We will slosh through emotion after emotion after emotion.  Sadness, fear, devastation, anger. Unless we tell them, our children will not know what we are feeling, or why we are reacting.  They will just see our tears, feel our silence, or hear us yell at them for no apparent reason.  They won’t know the aching pain behind our actions

Remember that, by using I-Messages and Active Listening, you have the skills to repair your relationship with your child.

Let your children see that you are ‘owning’ your own feelings, and it is helping you to cope. This will model coping strategies for them.

Try telling them what is happening for you in I-Messages (again, age appropriate).  Avoid the third person (‘Mummy/Daddy is feeling . . .’).

‘I’m sorry sweetheart.  I’m just finding it difficult to concentrate right now, because I’m thinking of how much I’m missing Grandpa’.

Use the Behaviour Window and Problem Ownership Models To Separate Our Grief From Our Child’s

I find these models, developed by Thomas Gordon, incredibly useful to help me recognise my own grief, and also to see my children’s loss from their point of view.

The ‘Behaviour Window’ helps us become aware of what is happening for us, to think about feelings. Understanding what is happening for us – that we feel bereft, overwhelmed, confused  - means we are less likely to blame our children for our distress.  We take responsibility for our own reactions, and we model that to our children.

Problem Ownership’ is a powerful way of separating our own sorrow and difficulties, from the unique pain our children are suffering. What can we do with our feelings, our stress, so they do not engulf our children?  

This model gives us a template of what to say, and when.  When our children are upset, we need to listen.  When we are suffering, we need to use I-Messages.

Our Story And You

The impending death of my parents, the loss of my children’s grandparents, is now part of our lives.  Each of us feels the sadness at different times, in different ways.

If you are in a similar situation, I hope that you find some of the ideas from our story helpful.  (You may wish to seek professional help if you are concerned about your children’s wellbeing.)

© Larissa Dann. 2016.  All rights reserved

Resources

Children and Griefbeyondblue.

Children and GriefKidsmatter.

Understanding Grief and Loss- Tips for ParentsKidshelpline

Grief and LossLifeline

Grief doesn't have five stages. The Outline.

How to help a grieving friend.The animated version. Refuge in Grief

An Article on Complicated Grief.  The Atlantic.

Australian Centre for Grief and BereavementHome page.

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