Having to face a loved one suffering a sudden life-changing traumatic brain injury and learning to deal with the impact this may have is an emotional journey for any person or family. Coping with the many adjustments that a severe head injury may bring to family life can be extremely stressful for primary caregivers, potentially placing them at greater risk of burnout.
“By their nature, traumatic brain injuries tend to happen very suddenly and unexpectedly. No family is ever prepared when something like this happens,” says Valley Mathebula, an occupational therapist practising at Netcare Akeso Randburg, Crescent Clinic.
Traumatic brain injuries can occur when a person receives a blow to the head or a sudden jolt, or if an object penetrates the skull, causing damage to the brain. Depending on the severity of the injury and the area of the brain impacted by the injury, mood and behavioural changes, mobility challenges, difficulty with speech, as well as various degrees of cognitive impairment, memory problems and loss of control over bodily functions are some of the possible consequences of brain injuries.
Specialised physical and cognitive rehabilitation services offered at dedicated facilities such as Netcare Rehabilitation Hospital are invaluable in helping patients who have sustained serious head injuries regain as much as possible of their functioning and improve their overall quality of life.
Changing roles can be stressful
“In very severe cases, however, some disabilities may be permanent, and the person may become either fully or partially dependent on their spouse or closest family members for their daily needs. With all the love and devotion in the world, this can be extremely challenging and emotional both for the caregiver and their loved one,” Mathebula says.
In some cases, the residual consequences of the damage caused by the person’s injury may cause mood swings, or aggressive behaviour towards their caregivers at times. “This can be frustrating and overwhelming for those caring for a survivor of a head injury however support is available to help families and individuals cope better with the situation, and in their efforts to assist the person in building their abilities where possible,” he adds.
“Adapting to new family roles after a loved one has suffered a severe head injury may also include taking on financial, household and parenting responsibilities, and often places the caregiver under immense pressure at a time when they are also grieving for the loss of the life they shared with the person before the injury,” Mathebula advises.
“Do not feel ashamed about how you are feeling. Validate your experience rather than bottling up your emotions. It can be exhausting and inexpressibly difficult for family members to come to terms with the new dynamics of the relationship, however talking honestly about your feelings, either with a professional counsellor or other people in similar circumstances in a support group, can be very helpful.”
Developing capabilities
Whether a disability is physical, cognitive, behavioural or emotional in nature, much can be achieved with multi-disciplinary therapies geared towards helping the person develop their capabilities and skills. At Netcare Akeso mental health facilities, multi-disciplinary teams of psychiatrists, psychologists and occupational therapists offer a broad range of therapies and support for the whole family as well as the loved one who has suffered a brain injury and may be struggling with the behavioural and emotional aspects.
“We aim to develop the coping skills of both the primary caregiver, other family members and the patient, optimising functioning and a sense of independence wherever possible. The multi-disciplinary team also assists caregivers to formulate coping strategies to help avoid compassion fatigue and burnout,” Mathebula says.
“Communication and listening skills can be useful, and is it very important to have patience, for example when the person you are caring for is trying to say something but has difficulty expressing themselves as a result of the injury having resulted in a speech impediment. Allow them the extra time needed or explore other ways of communicating to ensure that they feel their views are being heard and taken into account. This can help to alleviate frustration all round.”
The use of assistive devices to improve the person’s physical capabilities can help to make the household more suitable and accessible. An occupational therapist can provide advice in this regard, with devices ranging from simple and cost effective items such as specially adapted kitchen items, ‘reachers’, and laundry baskets with wheels, to more elaborate assistive devices often provided for in health cover policies, such as motorised scooters.
Time out and understanding
“Social isolation is another factor that may contribute to caregivers’ burnout, and it is vital to establish a support network that enables the primary caregiver time to pursue their own interests and spend time with friends. There may sometimes be hesitancy to leave their loved one with another trusted caregiver even for a few hours, but it is also essential to have time away from this role to replenish one’s energy,” he says.
“Get to know as much as you can about the type of brain injury your loved one has, as understanding the condition empowers you with insight into your loved one’s perspective, capabilities and behaviour. This can make caring for the person’s daily needs somewhat more predictable and manageable, and may help you in your interactions to increase their participation and cooperation, and efforts to build on their capabilities,” Mathebula advises.
