A Brain Injury Can Happen To Anyone

According to the Brain Injury Association of America, brain injuries occur more often than breast cancer, multiple sclerosis, spinal cord injury and AIDS, combined. And in spite of the fact that more than 2% of the U.S. population live with a disability as a result of a traumatic brain injury, public awareness of the devastating impact of brain injuries is extremely low. Brain injuries are the leading cause of death and disability world-wide. Despite these statistics, and the high percentage of brain injuries in comparison to other life-threatening illnesses, there is less funding provided. There are also fewer services available for survivors of brain injuries.

Very few people understand the problems associated with brain injuries. The majority know nothing about brain injuries until it happens to them or their loved one. When my partner sustained a traumatic brain injury, I was one of those people. At this time many brain injury survivors will feel the numerous losses associated with brain injury - many will experience the loss of some family members and often their friends. They will continue their journey through life with injuries that are invisible to a public that has little understanding or awareness of what it means to have a brain injury. It is a long, lonely walk for those people living with the effects of brain injuries.

The good news is that most traumatic brain injuries can be prevented. Educating young people on how to prevent brain injuries should be as important as teaching children the rudiments of math and English. Education should emphasize safety and how to reduce risk factors. Most traumatic brain injuries are caused by motor vehicle accidents, falls, sports injuries or violence and often by carelessness.

By adhering to the following rules, most of us could prevent brain injuries: a) don't drink and drive; b) wear seat belts; c) wear approved safety helmets when biking, snowboarding, motorcycling, etc.; d) use proper equipment when playing sports; e) make common sense choices and decisions; f) use caution.

The effects of brain injury are as follows: cognitive, physical and psychological difficulties, short-term memory loss, lack of information processing skills, poor concentration and chronic fatigue, difficulty in completing tasks, depression, mood swings, anger and irritability. The impact of these injuries is not only felt by the brain injured survivor but by his family, the health care system and the community.

Because of the lack of public awareness concerning the number of brain injuries that occur each year, little is done for the survivors. Support services are wherever the family can find them but most fall through the cracks. Because of the lack of services and awareness, a large portion of those in the prison system have been discovered to have previously incurred brain injuries. It is important that the public be made aware of the causes, impact and prevention of traumatic brain injuries.

In the United States, March is Brain Injury Awareness Month. In Canada, it is June. It is important for each of us to remember that brain injuries can happen to all of us.

The Importance of Support Groups for Survivors of Traumatic Brain Injury

For those who have survived a traumatic brain injury, there is often little treatment available after an injury and almost no counseling. For this reason the advantages of joining a support group are beneficial in many ways. And for those who are adamant that they do not want to join a group, there are internet brain injury support groups for those who are computer literate. The following is a list of the benefits of joining such an organization.

- Encouragement is given to assist members in achieving their rehabilitation goals.
- Members are encouraged not to give up when the going is tough and when things do not come easily.
- There will be assistance in helping a brain injured person acknowledge their losses and to move on with their new life.
- Members share their personal experiences which often helps others with their own problems.
- Being a member of a support group helps those with head injuries retain a continuing safety net. Many survivors have lost their homes, their jobs and their families. They do not have a healthy network of family and friends who are involved with their rehabilitation. Many are unable to return to the jobs they had pre-injury. They have nowhere to turn and often no motivation to look for help. Support groups can help them through these difficult times. Brain injuries are a lifelong disability and as such will require lifelong assistance. Support groups can fill this need.
- Members of support groups will hear stories of others' challenges and successes which may help them with motivation.
- Support groups can give assistance in helping to get resources, information, education and help.
- Attendance in a group will almost certainly ensure inclusion in social activites, offer the opportunity to become aware of recreation programs and available community services.
- Sharing experiences can bolster self-awareness and self-esteem.
- Many groups have access to a resource library.
- Help is offered in coping with difficulties associated with brain injuries and also with anger management problems.
- Most groups will have speakers in to discuss relevant problems, to give information on brain injuries and its effects as well as give assurances that they are not alone.
- Many groups offer life skills classes and help with adjusting to deficits.
- A few will offer counseling or make recommendations of where to go for counseling.
- Because all members have experienced similar difficulties, they support each other, listen, and understand the problems each person is faced with.
- Some groups meet on a drop-in basis while others meet on regular days at specified times with people who attend each meeting faithfully.

Those who have taken that step to joining a support group have also taken one of their first steps towards accepting their new life and moving forward.

Ten Steps To Helping Your Brain Injured Family Member

The role of a caregiver to someone who has suffered a traumatic brain injury is an important one. And as such, there are many ways they can give assistance. The following are some of the ways:

1. They can give assistance by helping to further the health of the brain injured survivor. This can be done in several ways.
- By beginning cognitive and memory exercises as soon after the injury as possible. This will help to increase the chances of a successful recovery.
- Reminders for taking medications;
- Ensuring that they have a healthy diet;
- Assisting them in getting to medical appointments as they are required;
- Encouraging them towards healthy choices in their lifestyle. i.e.: not smoking, drinking or using drugs. You may not be successful because you can only lead the horse to water but it is important to continue to remind them of the harm they are doing to themselves when they make unhealthy choices.

2. Help to identify any potential problems and make an effort to avoid them.
- Avoid the company of those who encourage drinking or the use of drugs.

3. Assistance in avoiding situations that can contribute to anger and frustration.
- Determine what issues trigger anger and frustration - long line-ups?
- Having to wait for an anticipated outing or event?
- The noise of young children?
- Being uncomfortable - too hot or in pain, etc.?
- Being required to do something they don't want to do?
Some things, of course, are unavoidable.

4. Assistance in helping with adjusting and adapting to deficits.
- This will be difficult if they are in denial and do not admit to having deficits.
- Help with issues relating to loss of short-term memory;
- Help with issues relating to motivation.
These issues seem to be more readily admitted.

5. Assistance with things they have difficulty doing or are unable to do.

6. Offer encouragement, support and acceptance.

7. Have a sense of humor.

8. Try to remain calm and optimistic.

9. Encourage them to try new challenges.

10. Repeat regularly any reminders as one would have to do with a child.
- This seems to be working with my partner regarding his insistence in smoking in the bedroom/ensuite - he now rarely does this having finally decided to smoke instead in his workshop most of the time. This has not been easy. I have had to say it many, many times over the past two and a half years before he finally seemed to 'get it'.
- And with regards to my partner's drinking, although I'm not sure if he does still occasionally drink when I'm not home, I haven't heard him slurring his words recently. He also has repeated words to others that I have said to him referring to his drinking. i.e.: that he can't drink like he used to be able to because he isn't able to handle it. (He still doesn't say it's because of his brain injury, only that he is unable to any longer).

Any caregiver will agree that the list does not stop there but it is a good beginning.

Brain Injuries: The Importance of Friend and Family Involvement

It is a long and lonely road for both the brain injured survivor and the caregiver without the support and involvement of family and friends. Often when those who had previously been close to the injured person think the 'worst' is over, their support ends. But as every caregiver knows, brain injuries really are forever.

If friends no longer call when their injured friend is unable to converse as they once did, go golfing, play racketball, tennis or whatever sport they did together, there is a feeling of abandonment on the part of the brain injured survivor. Those with brain injuries know things are different but they are not sure what it is. All they know is that their friends no longer call and they are alone and lonely. They have a lot of time and nothing to fill their time with. Often they will turn to substance abuse. This places a huge burden and responsibility on the caregiver. The caregiver then feels required to give 100% of their time and effort to the injured family member. This is often a difficult expectation when there are likely other members of the family that require attention also. The result of a situation such as this is that the injured family member, in the eyes of the rest of the family, is the only one that is important.

For those friends who think there is nothing they can do - they are very wrong. If their friend is no longer able to go golfing or play racketball, he/she would almost certainly enjoy being invited out to lunch, for a drive or a walk. They would then feel valued; not abandoned.

When those with injuries are no longer able to do what they once did - whether it be a job or in a social situation, they are set adrift. They are left with very little. Where do they turn? To their caregiver? The majority of people have very little knowledge of brain injuries so are unable to understand the burden the caregiver has without the support of those friends the injured person once thought he had. Most caregivers have sadly discovered that few people want to be involved.

Will the injured person turn to alcohol or drugs? Through boredom and lack of self-esteem, many of those with brain injuries will. Why not, they wonder? Their friends have abandoned them. My partner was called an 'embecile' by one of his 'friends' because he did not do a job well. This type of thing makes the role of the caregiver even more difficult while trying to bolster an already shaky self-esteem problem.

Are friends only friends when things are going well? In many cases, it would seem so.

As a caregiver, I have appreciated those who have shown understanding and compassion and have offered whatever assistance they can give. Outside of my own immediate family, (which I'm extremely fortunate to have), those people have been few. As an example, although my partner has had an alcohol abuse issue, one of his friends told me they could not tell him he couldn't drink while he was in their home. The opposite of that was while visiting my brother and sister-in-law for one week in their home, they kept the alcohol out of sight and offered him other refreshments. Their attitude, in comparison, was supportive and their understanding appreciated. My own feelings of frustration were validated. It is all any caregiver would ask for.

Brain Injuries - Anger, Frustration and Bumps In The Road

When living with someone who has sustained a traumatic brain injury, there will no doubt always be some anger, frustration, irritability and bumps in the road when things don't go as expected, as wanted or take longer than anticipated. Things happen to all of us and when they do we learn, as we mature, to accept those situations that are often beyond our control. However, when someone has experienced a brain injury, there is a self-centered way of looking at a situation. Because those who have had brain injuries are often like young children again, it is hard for them to accept the fact that things don't always happen when they want them to.

This has been the case since my partner had his motorcycle accident. He became very frustrated and irritable when it took longer than he expected to get an Assessment regarding being able to drive again; while he waited for his subsequent driver's license and, when on our first family vacation after his accident - (probably as a result of being out of his comfort zone). The most recent time was when we didn't get away in our motorhome when it was hoped we would be able to leave. He eventually in frustration, set off on his own. When someone has a brain injury, anger and frustration will often lurk just below the surface when things don't go smoothly.

I have noticed with my partner that his anger is usually fueled by frustration. It can also be the result of a loss of emotional control or any perceived lack of control. For many people there is a trigger to anger and frustration. It can be a high level of noise, long line-ups, being asked to do something they are no longer capable of doing, fatigue or anything that makes them uncomfortable.

As caregivers it is up to us to try to keep things running as smoothly as possible but because we are human, this doesn't always happen. We can assist our family member by trying to encourage them to increase their self-awareness by determining the causes of their anger; have them attempt to calm down when they feel themselves becoming frustrated; practice thinking before reacting in anger and, avoid a situation that can create frustrations.

As Mark Victor Hansen said, "Things will never be perfect. There are always challenges, obstacles and less than perfect conditions."

And a quote by Bob Greene: "Setbacks are bumps in the road; they are not the end of the road."

Brain Injuries and Lack of Empathy

The dictionary lists empathy as being able to identify with and understand another person's situation, feelings and motive. The state of being selfish, self-absorbed and self-centered indicates concern only with oneself. Lack of empathy and self enteredness are often deficits of brain injury. These deficits can cause difficulties within the family structure as well as getting along with friends.

Damage to the frontal lobe can affect feelings of not only empathy but also of lack of compassion. And in most cases there are few feelings of guilt as a result of their behavior. This deficit can alter decisions that most likely would have been handled very differently pre-injury.

My partner has shown this deficit many times - when he has been unable to comprehend my feelings of not wishing him to smoke in the bedroom/ensuite; his inability to see the hurt on the faces of small grandchildren when he has been playing with them and then suddenly becomes angry; and when I asked him if he realized that I had been upset about something he had been planning to do and he answered that he had realized it. 'And you did it anyway?' I asked. He answered that he had because he wanted to. These are only a few of the ways that lack of empathy can be shown but there are many. This lack of feeling and caring on behalf of those with brain injuries hurt family members whether it is their spouse, children or grandchildren.

Because empathy depends on seeing yourself as being similar to another person, having a brain injury precludes this ability. They are no longer the same as someone else, even someone with a brain injury since no two brain injuries are alike. Empathy also is the ability to understand another's perspective and to be able to see and appreciate that the other person's values and feelings will be different. Having empathy for others includes being interested in them but many brain injury survivors also have the deficit of being self-centered and self-absorbed so interest in others is difficult. When someone has empathy for another, it shows that they care about the other person's needs also. This is not the case when someone has the deficit of lack of empathy.

According to my research, it is felt that people can learn to have empathy if they want to make the effort. They can attempt to distinguish their feelings from someone else's; they can try to see the other person's perspective about a situation, and they can listen to what someone else is really saying. Although it can be done with effort, for those who have sustained a brain injury, it will be a much more difficult task.

Brain Injuries Are Forever - Adaptations and Adjustments

Initially I believed that as a person with brain injury improved, they would begin to learn skills to be able to adapt to and deal with any deficits they were left with. I have since discovered this is not necessarily the case. Often brain injury survivors are unable to admit to having any deficits. They are in denial. Some will remain in denial their whole lives. This makes it difficult for them to receive help of any kind. It is almost impossible to help someone when they don't think they have a problem.

My partner is in denial although he did admit that things weren't the same in his head. (He would not admit this to his therapist). Most often, however, he focused on his legs which had been broken in his accident. For those who have sustained brain injuries, it will be important to find different ways to deal with their new limitations. After reading that with patience and help, as well as using strategies and tools to compensate, most brain injury survivors can often overcome their deficits I asked my partner if he was interested in trying, with my help, to adapt. He said, 'Probably not.' His decision left me with the challenge of learning to adapt and adjust to his brain injury without his help. After thinking about his answer, I decided that adapting and adjusting was more a matter of me learning to cope and accept.

From what I have read, it is stressed that the family member living with brain injury must be resilient in order for there to be the ability to adapt and adjust to the brain injury. Other important requirements include:

- Personal Resources: a sense of humor; physical and emotional health, and a belief that one has some control over the circumstances of one's life.
- Family Resources: capabilities of the family to meet obstacles; create family continuity and stability; be organized, and have active involvement of family and friends through the rehabilitation process.
- Social Support: Support of friends and family. This is very important to both the survivor of brain injury and for the caregiver.
- Coping Patters include: take action to reduce the demands created by the brain injury; manage emotional and financial difficulties and cope to make the head injury manageable and acceptable within the family structure.

Some of the challenges associated with adapting to the brain injury are increased emotional and marital stresses and the suppression of anger on the part of the family member living with the injured person. Caregiving a patient with brain injury can present challenges relating to role changes, loss of sexual intimacy, and loss of empathy. Therefore, it is extremely important to establish coping patterns rather than just adjusting or adapting to this difficult situation.

Brain injuries are a hidden disability. In most cases, the deficits and differences in the individual are noticeable only to those who live with the affected individual. In many cases other family members and friends do not offer support because to them the brain injured survivor seems fine. This very likely is not the case and unfortunately lack of support places an additional burden on the caregiver. Those who live every day with a brain injured survivor know that brain injuries are forever.