Emotional Stages in Recovery - Fact Sheet

The wide ranging impacts of a brain injury ensure that the individual with an injury is likely to experience many emotions. This is a rough guide on what to expect on the road to recovery.

Loss Can Be Felt By All

The person with the injury may see a lost career or lost opportunity. Life, as they know it, can change dramatically and they may report that their life or a part of themselves is lost. If their self-awareness has been affected, it may take them some time to gradually realise the extent of what they have lost. For some, this may be strongest two years after the injury, when their brain’s limited ability to heal itself may be over.

Family members and loved ones also experience loss. Because a brain injury has the capacity to alter a person’s personality, it is not uncommon to hear family members reflect that it is like losing a loved one but being unable to say Goodbye. The grief that accompanies such feelings of loss can have a serious impact upon a person’s recovery and there are no guaranteed formulae for dealing with it. People generally mourn in their own personal way following a loss and strategies to deal with grief must therefore be developed on an individual basis. However, understanding the symptoms of grief and having an awareness of potential strategies that have been effective for other people, can improve a person’s ability to cope with grief.

Symptoms of Grief

Signs of grief can include anxiety, depression, guilt, restlessness, disturbed sleep, a sense of unreality and breathlessness. Our ability to work through grief is influenced by a number of factors, which may include:

Some people respond positively to grief by converting the loss into a gain e.g. the opportunity to meet other people with similar experiences. People who fail to progress beyond the early stages of grief may run the risk of developing a psychological disorder e.g. a depressive disorder or anxiety disorder. If the person with a brain injury continues to experience prolonged and intense emotional distress beyond a reasonable time, professional advice should be sought. The difficulty will be in determining what constitutes a reasonable time because, as we have already established, grief is very personal and some will need more time than others.

Stages of grief

Many people have tried to explain what grief is; some have even identified certain stages of grief.

Probably the most well-known of these might be from Elisabeth Kübler-Ross' book, "On Death and Dying." In it, she identified five stages that a dying patient experiences when informed of their terminal prognosis.

The stages Kübler-Ross identified are:

Kübler-Ross originally applied these stages to any form of catastrophic personal loss (job, income, freedom). This also includes the death of a loved one and divorce. Kübler-Ross also stressed that these steps do not necessarily come in order, nor are they all experienced by all patients, though she stated a person will always experience at least two.

A person does not move through these five stages in order, and attempting to encourage somebody to do so may do more harm than good. Rather, each individual should be supported as they progress through their own personal journey of grief.

Denial

Often the first reaction to loss, denial acts as a buffer to protect against being overwhelmed by strong emotions such as anxiety and fear. Without a period of denial, the shock of acquiring a brain injury could prove too much for some to endure. Time is usually one of the best remedies. A good approach for working through denial involves providing a supportive environment for the person to experience difficulties and learn about their new limitations.

Anger

Anger can come in many forms but is usually focused on blaming others for the loss, or the injustice or unfairness of the situation. Sometimes anger and aggression develop as a direct result of the brain injury. In other circumstances, some may express their anger as a reaction to how their life has changed and may direct such frustration towards people who are the closest to them. The difficulty in assisting people through the anger stage is that to agree with what they are saying may reinforce their negative thoughts, while to disagree may turn their anger against the person trying to help. It is generally recommended to only agree with what is believed to be true and to offer a second truth to challenge the statements that are considered false. Another way of coping with the person’s anger is to give them some personal space without avoiding them. Encourage them to minimise stress in their life without cutting out personally meaningful activities. Avoid critical comments or pointing out how they have changed.

Bargaining

Bargaining may be an indication that the person is beginning to realise the extent of the injury. However, it also indicates that they are not yet ready to accept it. Bargaining may also be something that is done secretly, which means that it often goes unnoticed. The injured person may attempt to strike a bargain with God. They will often make a silent promise to be a better person or go to church every week for the rest of their lives, in return for a full recovery. More recognisable signs come in the form of less drastic comments such as, “I’d give anything to have my life back.” The supportive observer will continue to be patient and positive by acknowledging how the person feels and by feeding positive suggestions and encouragement about the present and near future. A helpful comment may include “I understand that your life changed dramatically as a result of the accident. What can we do to help you to cope with today and tomorrow?”

Despair

Despair is the dark before the dawn and, by far, the most difficult stage of grief and loss to deal with. As the acceptance of the effects of the injury begins to sink in, someone with acquired brain injury may develop a sense of tremendous loss. Depression and self-blame may build to create a sense of hopelessness that will be difficult to overcome. Words of encouragement may be shunned with comments like, “What’s the use?” Families and friends may feel helpless as they watch the person sink into deeper depression and it is at this stage that some friends may be lost.

Encouragement during this stage remains important but it may not be enough. Strategies for supporting the person involve focusing on positive truths. Some of these truths may include:

The added danger of the despair stage is that if it continues for too long, there is a risk of the person developing clinical depression or contemplating suicide. At any hint of this happening, professional help should be sought.

Things that could help in this stage are:

Acceptance

The acceptance stage provides a period of reconciling the loss and preparing for the future with a renewed sense of wellbeing. However, while this indicates the final stage of grief and loss, there is still a long way to go. To assume that all will be well may encourage false expectations. The individual may require guidance to understand the impact of the brain injury and to develop strategies to compensate for any problems that have developed as a result of the injury.

Signs of Personal Acceptance & Growth

Some common signs that a person has worked through grief and adjusted emotionally to what happened include the following:

Factors in Emotional Adjustment

Some people tend to handle the stress of a brain injury better than others. For example those who believe it is important to contribute to society and to people around them may look outside of themselves to see what they can do to make the world around them better. Generally these people tend to do better.

Humour tends to be an essential component to getting better. When people can make jokes about themselves; that’s a very positive sign. As one person with a brain injury said, “Sometimes laughing keeps me from crying.” Resorting to alcohol or drugs will severely hamper a person’s emotional recovery.

People who go to support groups often get a lot of positive feeling from being with others who have brain injuries. They want to openly talk about their frustrations or fatigue or forgetting things. Those people usually do better than those who keep it all inside. You should contact your local Brain Injury Association and see if there is a support group in your area.

How Family Can Help

Patience is essential as your loved one struggles to relearn lost skills, remember the simplest things and follow the proper way to behave.

When an individual with a brain injury is unable to communicate, or behaving inappropriately, it is easy to stop according them the respect due to any adult. The golden rule is to treat them the way you would desire if you had the same disability.

Families should learn as much as they can about brain injury and its consequences. This understanding can help to cope with challenging behaviours and the frustration that can emerge during the rehabilitation process.

Different people will respond to different types of encouragement to recover their abilities, so use your loved one themselves as your guide to helping them. Begin by gradually encouraging them. At each step of the way, either ask how they are doing or observe behaviour and facial expressions to determine if you need to back off. The goal is to encourage the best effort while minimising the frustration that accompanies the effort. You can acknowledge how difficult this process is and give positive feedback.

Remember that people with a brain injury spend much of their time “surrounded” by their injury. Sometimes, lighten the seriousness of the moment by saying or doing something to make the patient laugh.

If you are having trouble expressing your love for someone who has had a brain injury, try to picture times you felt the usual affection and regain that moment. Understand the difficulties your loved one faces, and don’t take it personally if faced with a seeming lack of gratitude, self centeredness, criticism or angry outbursts

References and further resources