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Changes as a result of brain injury

Parents say they have had no time to prepare for the many changes that occur to their lives as a result of a son or daughter’s brain injury. Often, now that their family have grown, parents are at the stage of planning for their own future. It seems that life and those plans disappear in an instant. Changes in personality and behaviour of their child can be very disconcerting for parents. Displays of childish behaviour can be embarrassing, while mood swings and having to provide guidance and feedback can be challenging.

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Possible reactions

Like all family members, parents can experience many emotions coming to terms with the fact that their adult child has a traumatic brain injury or similar brain disorder.

These could include:

  • Shock and denial at the immediacy and severity of the injury and the consequences of brain injury / changes to your child
  • Anger and frustration at the circumstances of the injury, of how it has impacted on your life and how your child’s life will change
  • Loss – changes to plans, financial losses, grieving the loss of the future parents had anticipated for themselves and their children
  • Resentment and guilt – resenting the changes, feeling that you could have “done something better”, feeling guilty for feelings of anger, resentment and frustration
  • Loneliness and isolation – many parents report the gradual withdrawal of their friends as their lives have now taken different directions with different priorities
  • Mourning/chronic sorrow – Grieving processes rarely end, as a loved one remains in your life, but often as an altered person.

It is common to mourn the personality and characteristics that have been lost while learning to relate to a different person. Mourning is never completed but can begin again with reminders of what has been lost. Some parents say that they have lost interest in things they used to enjoy.

Relationship and role changes

Depending on the severity and nature of the brain injury relationships can change in several ways.

A brain injury places strain on many relationships and marriages. Concern about a child’s relationships, practical issues of how to help, and uncertainty about how the situation will work out is common.

Tensions between parents themselves can occur. Different attitudes and expectations and different ways of coping can aggravate this.

It is possible that the injured adult may move back home and parents may become carers. If this involves basic personal care and cueing with daily living tasks, it may be like parenting a child all over again. The relationship is no longer an adult relationship and this can be especially difficult if there are challenging behaviours as well.

Having carers or lifestyle support workers coming into the home on a regular basis can place a strain on relationships as parents feel that their lives are less private.

Help with grandchildren may be needed when one parent has a brain injury and the other is committed to a significant caring role or full-time employment.

Parents often worry about how the brain injury has affected their relationships with their other children. Some parents find themselves being more over-protective of their other children. Others worry that they are neglecting their other children and feel their resources (emotional, financial, time) are stretched in this regard.

Relationships with friends and extended family may also change especially if parents feel that others do not understand the brain injury.

Many parents find that roles in the family change as a result of their adult child sustaining a brain injury:

  • Parents may have to take on a carer role with their adult son/daughter
  • Previously valued roles may change e.g. giving up work to be a carer, loss of retirement plans
  • Grandparents may become more involved in their child’s own family as a result of the brain injury and may even take on the parenting role with their grandchildren
  • Parents may need to take on a more supportive role in relation to the spouse of their son/ daughter
  • Parents may need to help educate and support other family members and friends about brain injury.

Practical consequences of a brain injury

There may be many practical consequences of the brain injury. At times a brain injury will result in challenging behaviour which requires understanding of the reasons for the behaviour and strategies to manage them. Professional assistance may be required in some cases. Parents may need to assist financially, particularly if the injured person was the primary income earner. This may result in an inability to meet previous financial commitments such as mortgage repayments, car payments, childcare or school fees. Parents may find that they need to be involved in provision of:

  • Accommodation
  • ‘Hands on’ assistance e.g. feeding, bathing
  • Transport to appointments and activities
  • Assistance with managing finances and making decisions
  • Assistance with maintaining pre-existing relationships
  • Social support and social outings.

Remember to ask other family members or services to provide assistance. Encourage the person with a brain injury to gain as much independence as possible as it is important to allow them to learn new skills and to be as independent as possible. Be guided by the professionals working with them. Remember that a traumatic brain injury does not change everything about a person and some personality traits, behaviour traits and interests will remain unchanged.

Useful Strategies for Parents

  • Become involved in the hospitalisation and rehabilitation stages
  • Learn as much as possible about the brain injury to assist developing realistic expectations
  • Realistically consider the strengths of individual family members
  • Identify areas where assistance would be beneficial and asking for help
  • Talk about concerns with other family members/friends
  • Take time to deal with the effects of the injury
  • Keep daily routines as normal as possible
  • Be open to involvement in support groups and counselling
  • Spend quality time with other family members, and develop a network of friends and activities
  • Use supports such as regular respite when needed to rest, rejuvenate, and care for yourself.

References and other information

This is fact sheet is reproduced with the permission of ABIOS (Acquired Brain Injury Outreach Service). Visit to see their full range of fact sheets. ABIOS is a specialist community based rehabilitation service to enhance the service system for people with Acquired Brain Injury (ABI) and their families.