A brain injury will often have a devastating effect on the entire family. When one member of the family changes, everyone else does too.
There are many difficult stages to pass when coming to terms with a brain injury. From the initial shock, to the ultimate acceptance that he or she will be different to how they used to be – for both the individual concerned and the entire family.
Stress and burden within the family
According to a recent study by the Brain Injury Association, ‘families of people with traumatic brain injury have consistently demonstrated high levels of overall distress including diminished social interaction, isolation, and increased levels of stress, depression, and anxiety.’
The pressure on families to look after a severely brain damaged individual may very often lead to divorce and the break-up of the entire family.
Even if the marriage survives, the social life of the children and parents will be severely curtailed. The children will often not be able to bring friends over to their home and time alone will become a rarity.
A previous fun day out becomes a struggle to get through the day. Carers find themselves having to constantly apologise to angry members of the public because their severely brain damaged son has taken a child’s chips, because he was hungry, or touched a bald man’s head, because he liked the way it felt. Going to a restaurant or a swimming pool no longer feels conformable. You find yourself trying to ignore everyone’s stares and pretend to not hear other people laugh when your husband produces strange noises.
Sleep deprivation is also very common amongst carers. The individual may have toilet issues and carers will need to take them several times during night or change their underwear, disrupting their sleep on a daily basis.
There may also be severe pressure to place a brain damaged child or adult into care, resulting in huge family arguments. Of course, often the care provision may be entirely inadequate and you are left in a constant battle with authorities to provide sufficient care.
Carers, in order to look after their brain injured relative, have to either give up their career entirely or reduce their hours. As a consequence, their salary is significantly reduced and their career prospects are weakened. Of course, if you are a single parent this will have a huge impact on the family income. The disability allowance received is small and will not cover the loss of earnings suffered as a result of the acquired injury.
Homes may have to be adapted at a considerable cost. This will include a downstairs bedroom and often a wet room will need to be installed. The house may have to be adapted to protect a brain damaged adult or child from harm.
A large car may have to be purchased as it may be that space will be required between passengers. As many individuals, with acquired brain injury, find it unbearable to sit close to other people.
As the carers grow with age there is a constant worry as to what will happen to the person when they pass away. At the same time, parents of a brain damaged child do not wish their children to be burdened with the care of their sibling.
On a financial basis a discretionary trust may be required both in life and on death of the carer to allow financial benefit to be available without the loss of benefits. A Court of Protection order and the appointment of a deputy is likely to be required.
Help and support
For support and guidance, please consider Headway's booklet Caring for someone with a brain injury. This provides extensive information for carers plus an overview of brain injury
Many of Headways Groups and Branches provides support group meetings and one-to-one support for carers. Offering a wide range of locally run groups allowing you to receive support from those who are in similar situations to you.
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For further advice on the above topics, please call us on 01483 464222 or alternatively email firstname.lastname@example.org