Every year no less than 1.5 million people in the United States sustain a traumatic brain injury (TBI), and there are currently 5.3 million Americans living with disabilities related to brain injuries. For every one of those individuals there is a spouse, mother, father, child or other loved one who takes on the role of caregiver. The job is a rewarding, yet difficult one, and the process of helping someone with a TBI through recovery can become wearisome and agonizing. This guide is meant to help families live with and care for someone with a TBI.
A brain injury is a very serious condition, as the brain is the center of our nervous system and controls our entire body. Brain injuries fall under two categories: traumatic and acquired. A TBI is the result of direct external force such as a blow to the head, car crash or fall, while an acquired brain injury is one that has occurred due to a mental condition. Traumatic brain injuries have a broad spectrum of causes, incurred disabilities and symptoms, and can range anywhere from mild to severe.
A brain injury may be a minor concussion, or trauma that can lead to life-altering pain and lapses in consciousness. A mild TBI can be classified by loss of awareness, confusion or disorientation that lasts less than 30 minutes, and may cause temporary dysfunction of brain cells. Severe TBI exists when consciousness is lost for more than 30 minutes, and memory loss lasts longer than 24 hours. Serious brain injuries can result in bruising, torn tissues, bleeding and other physical brain damage that can result in long-term complications or death.
It can be difficult to tell which category those who have been injured may end up in because symptoms can present themselves months after the trauma occurred, and recovery tends to be sporadic and unpredictable.
Immediately Following the Injury
As the loved one of someone who has incurred a TBI, the immediate aftermath can be confusing and frightening. The entire family is affected and you likely have more questions than you know what to do with. Try not to let your emotions and unfamiliarity overwhelm you. You’ll have plenty of answers as time goes on, as will all of the friends and relatives who are pressing you for news.
For now, hand your loved one over to the professionals and allow them to make a proper diagnosis before you react. Stay by the patient’s side and be there to support them, but don’t be afraid to take advantage of the offers from friends, family and neighbors who want to bring over meals, take the kids to school and feed the dog. You aren’t a superhero, nor are you expected to be – so don’t try to juggle all of your everyday tasks while simultaneously caring for your loved one and sorting through your unclear thoughts and emotions. Take this time, when the patient is stabilizing and before you need to worry about what to do during recovery, to sleep, eat well and rest up. There may be a long road ahead of you.
Dealing with Both the Physical and Emotional Changes in the Patient
Depending on the location of impact as well as the severity, various functions can be affected. Speech, movement, touch, perception, vision, balance and coordination, heart rate, hearing and memory, smell and planning and problem-solving are all located in different areas of the human brain. No two TBIs are the same. Below is a partial list of cognitive, physical and behavioral changes you may expect your loved one to go through. They can range from subtle to severe.
Problems with memory (short term and/or long term)
Altered attention span
Impaired problem-solving skills
Weakened reading and writing skills / Broken language and vocabulary
Inability to understand abstract concepts
Trouble with muscle coordination
Full or partial paralysis
Changes in sexual functioning
Impaired social skills
Self-centeredness and lack of empathy
Loss of emotional control – most commonly an increase in irritability, aggression and depression
When changes like these occur, it is not only the patient’s life that is altered – it’s yours as well. It can be especially aggravating when you have readjusted your life in order to be the patient’s support system, and don’t receive the appreciation you expect and deserve. Even the most patient and capable of caregivers can experience “burnout,” a term used to describe the mental and physical exhaustion of caring for a person with a brain injury. This usually occurs when an individual has their plate loaded with stress, a lack of positive reinforcement and too much negative energy despite their best efforts. Caregiver burnout often leads to a loss of motivation, increased aggravation, frustration and eventually negligent care.
When you begin to feel the effects of caregiver burnout, you need to take time to yourself. You’re encouraged to exercise, go for walks, socialize with friends, go to church, listen to music and do any other types of leisurely activities to take your mind off of your feelings of defeat. Accept help from others and create your own support system.
Home Preparation for the Day-to-Day
When readying for your loved one’s return from the hospital you are probably feeling excitement, relief and joy. Your home will finally be complete once again and you can enjoy the company of your recovering patient. But you should also prepare yourself for a period of adjustment. This includes changes in relationships among family members, household roles and responsibilities, as well as modifications to priorities.
Regardless of how many books and articles that you have read, and no matter in what great detail you have spoken with your loved one’s physicians, no family is ever quite prepared to understand the scope of what is yet to come.
Rehabilitation is likely on the horizon. The goal of rehabilitation is to train the individual to function as independently as their body will allow them to. You will probably be in constant communication with medical professionals such as psychiatrists, neurologists, occupational, physical, speech and language therapists, neuropsychologists, vocational rehabilitation experts, recreation therapists and clinical nurse specialists.
Prognosis and chance of recovery are often unpredictable. You will face challenges of coping with the constant uncertainty, as well as inconsistency and shifts between recovery stages. The prognosis will depend on various factors, such as the intensity of the injury and which parts of the brain were damaged.
There is an assortment of different types of programs that your family can choose from to help care for your loved one, depending on the severity of the TBI. They include acute rehabilitation, coma treatment centers, transitional living programs (non-medical residential community), long-term and supervised living programs (residential facilities), behavior management programs and day treatment programs.
When you immerse yourself in the recovery process and work with the medical team you will learn more about your loved one’s condition, as well as how to help provide the best care possible. Ask questions, voice concerns and keep a file of their recovery.
Care for the caregiver – be sure to nurture yourself. Many families face challenges that they are unable to overcome on their own. That’s why there are online resources and support groups filled with people who can relate to the obstacles you are facing. You must continue to live your life, and not only be a bystander in the patient’s life. So be kind to yourself and look after your needs.