Date published: 05 December 2022 by Katie Inglis

In aid of National Grief Awareness Week 2022, Rainbow Trust Family Support Worker Rachel, shared some of her experience supporting families facing grief and bereavement.

Can you tell me a little bit about your role as a Family Support Worker?

As a Family Support Worker, I provide practical and emotional support to families with a seriously ill child. From the initial assessment I am working with families to understand them and to build a picture of what they need to help them manage daily life. This is sometimes signposting onto other services, transport to school, appointments or activities, play for their children while they catch some well-deserved respite, helping with household jobs so they have more time to spend together as a family, or emotional support for anyone in their family that needs someone outside of their immediate network to talk to. Families will often experience grief long before the death of their child and it is our job to help them understand why this is, how to cope and to prepare them for future loss.

How has grief touched your life in this capacity?

Our work is relentless, we selflessly work to build a rapport with children quickly and we triumph in knowing they call us their friends. We seek out their favourite games, make note of their favourite colour and remember the names of all their friends. And then one day, the unthinkable becomes a reality and we have to say goodbye. It hurts and despite our relationship being in a professional capacity we may still grieve. We’re not going to say hi to our little buddy ever again. The game will sit in the boot of our car until we can face playing it again. Their favourite colour will be a constant reminder of them, and what about their friends – will their parents know what to say? We are then reminded that our role here is professional and there is a family that need our support more than ever. Can we help with siblings? Do the parents need help explaining things? Is there any practical support I can offer?

There’s no way you could do this job and it not change your life. The children we meet become integrated into our life. Our job is painful, but it is important.

How does Rainbow Trust support families who are experiencing grief?

At Rainbow Trust we are privileged to be supporting families before and after their child dies. It must not be underestimated how important this is to families experiencing the loss of a child. We are in a unique position of knowledge – we have built a rapport with their child – we know them. We are witnessing their battles, triumphs, strengths and losses – they don’t need to explain it because we see it. We know the mountains they have to climb, and our experience can help guide them and feel less alone. Family Support Workers can support with difficult conversations, help make memories and free up precious quality time. We will listen to their narrative to help them understand what has happened and encourage ways of coping with grief.

What are some of the challenges bereaved families face?

Speaking from a Family Support Worker point of view having supported families through their grief, this is what I have understood about the challenges they face:

Grief is an unwelcome visitor in a person’s life. It is chaotic and feels like fear and madness. When a family experiences the death of their child their whole life will change and they will lose much more than their child. Support networks will decrease because carers will no longer see them, their multi-disciplinary team will move on, they may lose financial support and their car. They may wonder what their identity is now – they will never be the person they used to be. How will they return to work or school? Will they be remembered as the person whose son/daughter, brother/sister died and is this what they want? Accessing appropriate services can be difficult and a postcode lottery.

Along with this they may have other children they want to protect. How do they go about this when they can’t take the pain of losing their sibling away? It is normal for parents to put walls up to protect their children but can leave everyone in the family feeling isolated and the only way to show love and support for one another is to have open and honest conversations. This is incredibly difficult for parents.

Another important challenge to mention is societal pressure for you to be ok after the death of your child. The people around you want you to be ok and because grief is invisible, it may appear to others that you are “getting on” which can feel like madness when inwardly you feel overcome with grief.

What are some of the challenges you face as a FSW supporting a bereaved family?

I wish I could take away the pain but the truth is nothing and no-one can. The whole family, parents and children alike, will experience the pain of loss and unfortunately nothing I can do or say will take that away. I have accepted that. I only wish to be present, support and tenderly care for them while they find their feet.

Do you think people make assumptions about grief, and if so, what are these assumptions and are they accurate?

I think people often think of grief as stages that we move through, ‘completing’ each stage as we go but this isn’t true.

I like to think there are stages we move through, back and forth, while we learn to understand what has happened and how to build a life around our grief.

I also think people often believe children don’t grieve, but they do. They experience loss and pain like adults but rather than sit in their grief they tend to jump in and out of it – often when they’re feeling their most safe and comfortable, so we need to provide those opportunities so they can learn to understand what has happened.

How can friends and family members best support a loved one that is grieving?

You may often find that the person grieving wants to be stuck in their grief, almost as if they owe it to their child. Be patient, be present, they need support to carry on living and they need you to acknowledge the pain they are feeling. Offer your time to allow parents the space they need to self-sooth, journal or to remember their child by looking after siblings for a while. Don’t be afraid of asking what they need and really listen to their answer. Some like food parcels, some like their house tidying or the children collecting from school. Everyone is different, so ask.

How do you think grief impacts a family’s (or your own) life on a day-to-day basis?

We experience living losses on a daily basis – a job, routine, money, an object, the changing of the seasons even. Understanding that the feelings associated with these losses are feelings of grief, helps us to understand what we might need to cope following the death of a loved one – I think it provides hope.

How can we open up the conversation about grief in a way that is supportive, healthy, and respectful of a family who have experienced bereavement?

Really listen to them following their bereavement – they will be trying to express their pain – let them know you hear them and what they’re feeling is completely normal. This is grieving and it is ok. Give examples of the small everyday living losses if it helps to demonstrate what is happening to them.

What advice would you give to someone struggling with their grief?

Accept the offers of help – this could be a number for a support group, childcare, a food parcel, practical help with daily chores

Even when you don’t want to, get outside. Once you’re back home, you’ll feel better for doing it.

Try and have hope. Acknowledge the loss and the darkness and then turn to the light with a plan and how you are going to make that happen. Hope is what helps turn life around. There are small hopes to be grateful for; like having good coffee in the morning, and then a more longer-term hope; like the fact that laughter will return to your family.