Everyone has their own way of coping. This is influenced by your life experiences, your support network and your child’s illness. Some people will find comfort in sharing their feelings, hopes, wishes and concerns. Others will choose not to talk or may be afraid of being overwhelmed. Many couples struggle in their relationship during and after caring for a child with a life-limiting illness. Make an effort to communicate honestly and openly, exploring solutions together and try and be patient with one another.

 

How illness might affect your relationship

While caring for a child with a life-limiting illness, being able to share the load and feel supported by your partner will be invaluable.

Any traumatic experience can have a significant strain on a relationship. Some parents and carers have found the experience of having a child with a life-limiting illness brings them closer together, although it is also common for couples to find this experience overwhelming.


Common relationship issues

Caring for a seriously ill child can place significant strain on a relationship. By recognising and overcoming common relationship issues, couples can work towards improving their support for each other. Below are some ways parents respond to having a child with a life-limiting illness, and some hints and tips to help you understand and support your partner.

Anger

It is common for a parent of a child with a life-limiting illness to feel angry. Sometimes, this anger can become misplaced and is taken out on those closest to them.

Try to understand:

  • anger is often a reaction to the loss, or impending loss, of the child
  • people express anger with those they feel safe and secure with
  • anger is an expression of frustration and helplessness.

When feeling angry:

  • think about what you say before you say it
  • try to ‘hear past the anger’ and focus on the underlying feelings; you may be able to work towards pulling together rather than apart.



Unmet expectations

One partner may feel they are carrying the load and caring for their child without adequate support from the other. They may feel that the other ‘can’t deal’ with a seriously ill child which leads to feelings of overburdened or abandoned. An example of this could be if their partner is away from home or avoiding caring tasks. Some strategies for addressing these feelings include:

  • communicate what you need from your partner
  • try to respect each other’s differences and coping strategies
  • accept support from family and friends
  • seek professional counselling to explore issues and assist with support strategies.

Intimacy

Many couples express concern over their sexual relationship. The emotional and physical demands of caring for a seriously ill child over an extended period often impact on a couple’s desire or ability to maintain an intimate relationship. Exhaustion can greatly affect libido. Sometimes, recognising that this is a common reaction to particularly stressful situations can help.

Try to understand you will have different intimacy and sexual needs during times of stress. Discuss these differences so that you don’t interpret the actions of your partner as uncaring or rejection. Share intimate moments by simply touching, holding hands or talking about your feelings.

Emotional support

It is natural to look to your partner for comfort and emotional support:

  • try to remember that both of you are hurting and have limited energy to comfort each other
  • family, friends, pastoral carers, counsellors, or other parents can be an alternative source of support and care during this stressful time.



Further support

Relationships Australia

Relationships Australia provides of relationship support services for individuals, families and communities.
relationships.org.au • 1300 364 277

The Compassionate Friends

The Compassionate Friends is a world-wide self-help group for parents that have lost a child of any age and through any cause. They offer support and understanding.
https://tcfa.org.au/

Griefline

Griefline provides a dedicated grief helpline service providing counselling support services free of charge
griefline.org.au • 1300 845 745, 12pm – 3am

Australian Centre for Grief and Bereavement

Australian Centre for Grief and Bereavement provide information including a pamphlet – “After the Loss of a Child. A resource for parents of children in palliative care”
grief.org.au

Lifeline

Lifeline provides access to a 24 hour crisis support and suicide prevention for anyone experiencing a personal crisis
lifeline.org.au • 13 11 14