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Families of brain injury survivors are often the unsung heroes of the injury experience. They are the individuals who insisted the doctors not give up on their loved ones. They are the individuals who spent the sleepless nights on uncomfortable hospital chairs and stressful days trying to hold a chaotic home life together. They battled the insurance companies for hospital and rehabilitation coverage. They support the survivor in countless ways during rehabilitation and then beyond the point when formal rehabilitation services conclude. However, many family members and friends fail to adequately appreciate the burden that a caregiver is under. Even some of the primary caregivers themselves may not fully recognize the difficulties they are experiencing. The stress and problems due to caregiver burden can lead to those caregivers experiencing a decline in both physical and mental health.
When a person is injured, families often get a sudden call from the hospital warning them that they must come as quickly as possible because their loved one is hurt and may die. It is important to appreciate this terrifying experience. Life is instantaneously turned upside-down. Family members run off to the hospital not knowing what to expect. Often they come to an emergency room to find their loved one hooked up by a number of tubes and hoses to a variety of machines. In the case of an accident, the loved one may well be horribly bruised and bleeding with broken limbs. Doctors likely will come over to advise the family of the terrible news and to inform them of the potential severity of the injury, often relaying death as a possible consequence. Family members are thrust into the position of caregivers required to make life-and-death decisions. They may be asked to consent in their loved one’s place for complex surgeries such as a craniotomy (in which part of the survivor’s skull is removed to counter swelling and bleeding in the brain). Even with these life-saving procedures, families are warned that their loved one may not survive. This may then leave families forced to wait on pins and needles for days on end. Their loved one may be in a coma for days, weeks or even longer. During such a period, family members may rightfully worry whether their loved one will ever wake up at all. The newly injured person may suffer setbacks such as seizures or infections such as MRSA, each of which bringing with it new risks and fears. At every step family members are forced into the role of caregivers, being updated by doctors and attempting to make the best of often unpleasant situations. In some cases, family members are the first to find their injured loved one following the brain injury or actually even had the misfortune of watching the injury as it happened. In these cases there is the added terror of having to summon an ambulance while helplessly watching as a loved one suffers. This can be not only an incredibly scary moment but also an incredibly lonely moment as the family member stands alone, staring at the clock and hoping the ambulance will arrive in time.
These injury events are often the start of the caregiver burden experience. The caregivers undergo a physically and mentally exhausting experience and though their loved one may survive, the injury event experience often leaves a permanent emotional scar. This is a traumatic event, similar in some ways to the trauma someone may experience watching a fellow soldier get shot in battle. There are feelings of fear and helplessness as little is left to do but watch as a loved one fights to survive. Caregivers may have nightmares regarding their loved one’s injury. They often go throughout the day worrying that their loved one will suffer subsequent injury and decline or even worse, die. In some cases, caregivers blame themselves for their loved one’s injuries. They may tell themselves, “If only I hadn’t let her have that last drink, she would have never been in that accident” or “If only I’d made more of an effort to ensure that he’d eaten better, he would have never had this stroke”. For some caregivers the date of the injury becomes an anniversary of a new life. For others it will forever be known as the anniversary of a death of life as they knew it, no matter how much their loved one improves.
With this in mind, it is vital for caregivers to acknowledge the enormity of the injury event and to allow themselves to work on the resultant emotional experience. Caregivers need to give themselves permission to reach out for help and support. It is important for those in the caregivers’ lives to help support these caregivers and provide a safe space for them to share their experiences (of course only up to the level with which the caregivers are comfortable). Often, rehabilitation therapists are the first to notice the caregiver burden and to offer to help caregivers with these abundant concerns. In many cases, caregivers benefit from counseling and/or psychotherapy in efforts to work through their emotional experiences. A well-defined medication regimen appropriately tailored to an individual’s needs can also aid substantially in attaining emotional balance. Some family members may benefit from meeting with clergy so as to aid in their spiritual recovery from this experience. Also, brain injury and/or stroke support groups can be very useful in managing the emotional impact of this experience.
I hope this post shed some light on the caregiver burden as it specifically relates to the initial injury event. Feel free to comment below with any questions.
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Moody Neurorehabilitation Institute (Moody Neuro) provides personalized care to treat the unique challenges of brain injury with the singular purpose of achieving the best possible outcome for patients and their families.