Perfectly Scrambled: My journey and other information
This is a paper I wrote for a class. I thought I'd share it with all of you.
Traumatic Brain Injury Statistics and Risk Factors:
For many years, the military did not recognize mild traumatic brain injuries at all. If command could not see the wound, the general thinking was, the wound did not exist. For many soldiers, this way of thinking often disrupted their careers and home lives. Soldiers without treatment had to learn to struggle through their daily tasks with little or no help at all. A traumatic brain injury or "TBI is described as penetrating or closed. A penetrating brain injury occurs when a foreign object or bone penetrates the dural lining surrounding the brain." (Kennedy & Moore, 2010). With the wars in Iraq and Afghanistan, the military has become proactive about TBI's. Soldiers now wear helmets with devices called impact sensors that record the amount of impact the soldier feels when the helmet is involved in any type of impact. "They measure two specific actions: the energy wave generated by the "event," and the "acceleration" or jolt that follows." (Miles, 2008).
In using these devices, the military is able to track TBI's and give the soldier the proper treatment. Prior to the impact sensors, brain injuries were difficult to determine, especially in mild injuries.
TBI's are not only a problem in the military; they are a problem throughout society. Age has a lot to do with the risk factors of experiencing a TBI. Infants and toddlers are the most likely to suffer a mild TBI due to their young age. The elderly also experience a higher rate of TBI's due to age related illnesses that cause balance issues. In teenagers, motor vehicle accidents are the most common cause of TBI's. Other factors also influence who is at a higher risk for TBI's such as gender, where males are more likely to suffer a TBI than a female. A person's athletic activity can also affect the risk of TBI. Football players have a higher risk than an individual who does not participate in sports. Experiencing a mild TBI happens to most people at some point and time in their lives. This usually occurs without the individual giving the injury a second thought due to the mildness in the nature of the injury. A mild TBI is any head injury that does not include periods of lost consciousness or loss of consciousness that occurs for less than thirty minutes. Depending on the severity of the injury, these types of brain injuries usually heal within a few hours or days after occurring. (Eden, Stevens, Injury & Services, 2006).
Factors that Determine the Severity of a TBI:
The Glasgow Coma Scale is a way that medical professionals use to rate a TBI. The scale is imperfect at best because brain injuries are fickle. An injury in one person may have little or no effect on that person's life, whereas a similar brain injury in a comparable person may have long lasting effects. This scale is used to determine the severity of the brain in that particular person, but even then, sometimes it can be wrong. The criteria for using The Glasgow Coma Scale is based on the injury and the is used to determine the severity of the brain injury. "The variables typically considered in determining the initial severity of an acute TBI include decreased level of consciousness, duration of post-traumatic amnesia, skull fracture, bruises or blood clots in the brain, and neurological or neuropsychological dysfunction (Kay et al., 1993)." (Eden, Stevens, Injury & Services, 2006).
The scoring system begins at 3 and goes to 15. Anything < 8 is considered as severe, 8-12 is considered as moderate, and 13-15 is considered as mild. (Eden, Stevens, Injury & Services, 2006). By using this scale, doctors have a better idea as to how to approach treatment of a brain injury. The scale itself has problems, however, and a person with a TBI may feel the rating for his/her particular injury is low, as Jane Woods states "Current criteria define my injury as mild, the changes in my life are radical" (Eden, Stevens, Injury & Services, 2006). Sergeant Danny Hussey has similar problems with the actual rating of his brain injury. His injury is rated at a nine, or moderate TBI, yet the changes in his personality and in his life have been far more radical that the Glasgow Coma scale indicates. His wife, Sherry Hussey, often says, "He went to work one day as Danny, his body came home, but he was not the Danny we knew anymore."
TBI Sufferers and their Families:
The majority of TBI's that military personnel suffer occur while the soldier is deployed. This, however, is not the case for all TBI's that military personnel incur. Sergeant Danny Hussey reported to a "Train the Trainer Combatives" class at Ft. Sill, Oklahoma in April 2007. The same month, prior to the class, Sergeant Hussey had scored a 298 on a his Army Physical Fitness Test, he had had his eyes checked and was told he had 20/20 vision, he was being considered for promotion and in the words of his commander "I fully expect Sergeant Hussey to reach the rank of Command Sergeant Major before his retirement." April 26, 2007, Sergeant Hussey reported to his class for the final assessment of his abilities in combatives, four soldiers stood in a circle around him and were instructed to punch him while wearing boxing gloves. Sergeant Hussey was not given any protective head gear and was even instructed that he would not have access to protective wear in a real life combative situation. He was struck a minimum of 27 times in and about his face and head. He suffered eight concussions with at least one concussion being directly on top of another concussion. The medics at the class cleared him to go home that day.
The brain injury was almost immediately apparent. In the days following the incident, his wife and children noticed a significant difference in Sergeant Hussey's personality and physical capabilities. On Sunday, April 29, 2007, Sergeant Hussey collapsed in his kitchen. He was rushed to the emergency room, where the first diagnosis of a brain injury was made. For Sergeant Hussey and his family, life became perfectly scrambled. Nothing would ever be the same, and the roles of each individual were thrown into a tailspin while the family struggled to understand and redefine each role.
Traumatic Brain Injury: Personal Journeys discusses with soldiers and their families the journeys that each have undertaken after the diagnosis of a TBI. Ted Wade and his wife Sara share their journey in a video where Sara says she remembers thinking, "Please God, I'll take him whatever way, just give me more time with him." (McGrew, 2011). Many family members of wounded soldiers think this way. Sherry Hussey describes her views of her now changed husband "I married him because I love who he is. The brain injury significantly changed parts of his personality, but that sweet, loving guy is still there and I want every minute of everyday God gives me." Susan Welsh share's her journey after her husband Sergeant Major Michael Welsh was injured in Afghanistan. "I didn't expect to get someone totally different back. And that's what you have, a totally new human being." (McGrew, 2011). For each family, the journey will be different, there will be good days and bad days and many really awful days during the recovery. Many families will never know life as they once knew it again. The adjustments that are required are difficult. Adjusting to that life is difficult and each caregiver has to take control of the situation in order to help the patient make the fullest recovery possible.
One of the biggest changes and a key factor in families realizing something is wrong is anger. TBI patients become angry; a patient who normally was passive in his/her attitude about things like road rage or frustration will suddenly become aggressive and difficult to deal with. Depression is another key factor that TBI patients often experience. Sherry Hussey notes, "Before the brain injury, Danny always saw the glass as half full. After the brain injury, he just slammed the glass to the floor insisting it was worthless." Some patients will have thoughts of suicide or in some cases, even homicide is occasionally considered. Comments such as "I don't want to live" or "I hate you" become commonplace.
TBI sufferers also experience speech problems, balance deficiencies, light sensitivity, and memory deficits. With these symptoms, it is common for moderate and severe TBI suffers to have little or no recovery. Speech pathology is used to help the patient recover speech abilities. Sergeant Major Welsh began talking very slowly; sometimes he was unable to retrieve words or thoughts. Sergeant Hussey experienced severe speech problems, and at times, he couldn't carry on a conversation because his thoughts were so scattered. (McGrew, 2011) Depending on the severity of the brain injury, the side effects have a varying amount of problems. The military has set up various clinics throughout the United States to assist soldiers in their recovery. At Ft. Campbell, Kentucky, the TBI clinic offers diagnosis, treatment, psychology, and a various other activities to assist the soldier. Walter Reed hospital in Washington, D.C. offers help for the most severe TBI with extensive physical, mental, and emotional help available. There is also the Fisher House where family members reside with the families of other injured soldiers. A neurologist has to determine the severity and recommended treatment for any TBI.
The Caregiver, the Advocate, What to Expect:
Most caregivers experience a period filled with confusion and uncertainty. It is during this time that the caregiver feels lost and out of control. When Sergeant Hussey was initially diagnosed with a moderate TBI, his wife spent weeks just trying to understand what had happened and what the future would hold. Prior to his TBI, Sergeant Hussey had handled the family finances, assisted the children with extracurricular activities and homework, and he was the "man of the house". After the TBI, Sherry had to take over her husband's duties within the family. Learning how to be an advocate for a family member with a TBI can be overwhelming and confusing for the caregiver. Redefining "normal" is a process that can take weeks, months, or even years to accomplish.
For the caregiver, the first steps to becoming an advocate begin in the first moments after the caregiver meets with the doctors. The medical team will need information about the patient, such as, a medical history, an understanding of the patient and his/her personality, and in the worst case scenarios, the medical team may need to know what the patient would want in terms of long-term care. Sorting through the mountain of questions from the medical team as well as the questions the caregiver has can become an overwhelming process. Taking the process in steps is the best way to handle things; however, most caregivers who are facing a family member with a TBI have little or no previous education to understand where to begin. For those caregivers, this time may be overwhelming and even trigger depression in the caregiver.
The caregiver, who is most often a spouse, also has to face the fact that patient is no longer the same. With spouses, loss of the confidant, the best friend, intimacy, and just someone to be there in tough times is extremely difficult. When it is a child with the TBI, parents experience similar feelings, and sometimes even guilt and/or frustration. Having a loved one with a TBI is very similar to experiencing a death. There is grief, a great deal of grief, which the family members will feel during the recovery process. Dr. Kubler-Ross's five stages of death can apply to the feelings family members experience after a TBI diagnosis is made. A caregiver or other family members may experience denial, anger, bargaining, depression, and acceptance. (Kubler-Ross, 2011)
Denial occurs when the caregiver or family does not want to believe that their loved one will never be the same, or may even die. Anger that occurs as the realization of the multitude of changes begins to sink in, with children; they may act out, while adults tend to get angry at everything in their lives. Bargaining happens when the family member becomes desperate for anything normal to occur. Depression happens as the family realizes that things will never be the same and that the new "normal" is not normal. During depression, it is vital for the caregiver to seek help in understanding his/her feelings. When acceptance happens, the family has moved into a place where the new normal is normal and accepts the fact that things will never be the same again.
For military families, counseling is offered and available. For civilian families, it may be more difficult to find counseling and the counseling is expensive. In either situation, the website "Traumatic Brain Injury: The Journey Home" will help the caregiver understand their feelings along with understanding what is happening to the patient. Advice is listed and videos are documented to help the caregiver cope, communicate, and survive the rough roads ahead. (McGrew, 2011).
The Caregivers Job:
From the moment that the diagnosis is made, the caregiver has a new job, and one that is demanding. To assist the caregiver in maintaining the job, he/she should start with having notebooks, a notebook that contains personal information, military service papers, medical reports, tests, and scans, and notes on care and questions for the doctor. These notebooks will help the caregiver give the medical information when it is needed and help the caregiver feel a sense of accomplishment. When Sherry Hussey first began her journey as a caregiver, she felt the overwhelming pressure to know everything. "I had a filing case in my car. Inside the case was everything about him that anyone could possibly ask. That filing case became my lifeline to normalcy, without it, I felt lost and confused and at times, it seemed I forgot as much as I remembered." Soldiers with a TBI are required to attend every scheduled appointment, an appointment book will help the soldier remember the appointments as well as assist the caregiver in scheduling new appointments and bringing the right information to each appointment. It also helps the caregiver with keeping up with the activities that the children have and in scheduling times for the caregiver to rest. (McGrew, 2011)
Learning how to Speak Up:
The moment a caregiver realizes that their loved one has a TBI is terrifying. The caregiver may be a person who is quiet, reserved, and used to following directions rather than giving directions. Learning how to speak up is difficult for any caregiver. Doctors are intimidating and most family members do not feel educated enough to argue with the doctors suggestions. The caregiver generally is the person who knows the patient the best; therefore, it is imperative that the caregiver learns how to speak up. (McGrew, 2011)
. The first step to learning how to speak up is probably the easiest for most people. Simply telling the medical staff who you are and that you are the patient's primary caregiver allows the medical staff to understand the importance of your role to the patient. As time progresses, learning other steps such as speaking of personal experiences, showing confidence, being polite, brief, and timely, as well as factual become essential . Telling the medical team about the patient and what is working or is not working allows the medical team to adjust treatments as necessary. Whenever a caregiver is meeting with the medical team, it is important for the caregiver to remember the old saying "you always get more with honey than with vinegar". Show confidence but at the same time, be polite to the doctors. Caregivers should also ensure the message they are trying to give the medical team is brief and factual. (McGrew, 2011)
Helping the Patient with Recovery:
Every TBI is different and every TBI patient's recovery is different. There are things that can help the caregiver help the patient. Doctors will set up a series of activities to do at home after the patient is released from the hospital. These activities are designed to help the patient get back to normal as much as possible. The caregiver can start by putting up sticky notes to help the patient remember. These little notes serve as reminders for the patient about things he/she needs to remember. A note on the bedroom door reminding the patient to brush his/her teeth, a note in the bathroom to put on deodorant or that shampoo is for hair and body soap is for the body. Of course, sticky notes only work for the patients who have reading skills. For those without reading ability, pictures may be necessary instead of sticky notes.
Take a picture of everyone in the family, especially family members who are not nearby or young children. Show the patient the pictures and discuss memories and names with the patient, this allows them to reconnect information of who this face is and what is significant about that person. It can be very frustrating for the patient to meet a family member and not have any idea who that person is. When gathering with family, make sure that the patient is not crowded, is introduced to each person, and is able to get to an area where he/she can rest quietly if the situation becomes overwhelming. Explaining to family members the details of what to expect before they show up will help everyone have a better time while together.
If the patient is able to drive, purchasing a Global Positions System (GPS) is a good idea. A GPS will help the patient find his/her way home if they become lost. Putting a sticky note on the front door reminding him/her to take the GPS is also helpful. Give the patient a cell phone and program the caregiver's number into the cell phone so that if the patient becomes confused or lost, he/she can find help immediately. Know where the patient is going so that if he/she does not arrive at the desired destination, the caregiver will be able to start looking for him/her.
Communicating with the Patient:
Learning how to talk, express feelings, and how to live again is difficult for the patient. A caregiver needs to realize the importance of helping the patient communicate. Learning body signals that express what the patient is feeling aids the caregiver in knowing when to react and when everything is ok. After a TBI, the patient may not remember things or words that were mattered before. The family has to remind the patient of what is of importance. After his brain injury, Sergeant Hussey's wife would whisper words for him to say to his children. It's also important for the family members to understand that patience and understanding are vital if the patient does not say the right things or forgets an important date.
For adult TBI sufferers, it is essential to continue to treat them as an adult. Respect the fact that he/she is an adult by speaking to him/her as one would speak to any other adult. Allowing the patient to attempt simple tasks on his/her own and praising him/her when the task is done correctly, is essential for the patient during recovery. The caregiver can also use gestures such as a pat on the back, a thumbs up, or just a smile to communicate a job well done. Communicating with a family who has a TBI is difficult early in the treatment, however, as time continues; each family member will learn how to communicate with the patient. Trial and error are important steps. If the result is positive, the caregiver and family will know that it works. If the result is negative, the caregiver and family will know it does not work.
The difficulty in adjusting to life after a TBI is daunting to not only the patient, but the family also. In the case of mild TBI's the diagnosis may come as a relief to explain the significant changes in the patient. In the case of moderate and severe TBI, where the damage is immediately noticeable, the diagnosis is filled with fear and anxiety. The caregiver becomes the brain for the patient, he/she has to remember everything the patient needs to remember, organize the patients appointments, activities, and anything else the patient needs, all the while, the caregiver is still trying to take care of the caregiver. Learning how to communicate with not only the patient but also the medical team, the children, and anyone else directly involved is imperative. Keeping a positive attitude will assist the caregiver in meeting each challenge.
A Traumatic Brain Injury can change the course of a life as well as the lives of loved ones. Strength, courage and the willingness to continue forward are the best tools money cannot buy. Each TBI is different as each individual is different. A caregiver has to remember that while things have changed, there can still be a positive that occurs after a TBI. For Sherry Hussey, the positive happened after four years of tough battles, the day her husband has finally made it to his new "normal".