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As a first step to working well alongside a family after brain injury, begin by imagining.
Imagine the possible effects of a major life changing event (such as brain injury) on a family.
On each family member. Think about each family member dealing with a range of different emotions, responses and reactions, at different stages for different lengths of time.

Before we talk more about what happens after brain injury, here is a short clip that talks a bit about family after brain injury.

Understanding Possible Reactions and Responses: Family After Brain Injury

As supporters we can assist by being aware, and respectful of what individual family members may be experiencing.

What are some of the many different responses and reactions you might see?

Grief

Each change and adjustment to a family member’s role or relationship can bring new feelings of grief.

Family events (even happy ones) and traumatic news events can trigger grief and reminders of loss for instance birthdays, anniversaries, major catastrophes around the world.

Grief can go unrecognized, or put on hold, because the family are so busy managing life with brain injury.

Grieving is difficult when the level of, and time for, recovery or deterioration, is not known and might fluctuate.

Loss

‘Ambiguous Loss’ is a term given to the loss felt after brain injury. It describes the difficulty for family acknowledging the grief and loss because the person is still with the family, but is not the same person.  “It is like grieving for someone who is there but not there.”.

It can be hard to find a way to mourn when the person is still present but changed.

“With ambiguous loss there is no closure, the challenge is to learn how to live with ambiguity” (Pauline Boss)

Guilt

A family member may feel guilt because:

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• they feel responsible in some way for the accident, disability, or illness
• they do not want to be a carer
• of feelings of impatience, anger, or harsh words
• they believe they are not perfect in the new changed roles
• of comparison to other carers who manage differently
• they are no longer sexually attracted to their partner they are caring for
• of feeling they are neglecting other family members such as spouse, or children

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Blame

Blaming another person for the brain injury. “If you had locked the gun away this would not have happened.”

One person believes another could have done something to prevent the injury. “If you had taken him to hospital sooner it could have been treated”.

Blaming the person with brain injury. “If she had stopped drinking when I told her to she would not have alcohol related brain injury now.”  “If he had not been driving at that speed he would not have crashed the car.”

A family member feels they are doing more than their share, and / or another family member is not helping out as they expect

Blaming the hospital, medical staff, therapists and others involved for what is perceived as poor diagnosis, or treatment or poor information

Blaming a family member for familial or genetic causes of brain injury

Fear

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of  brain injury happening again
of brain injury happening to another family member
of not coping
of grief and loss being too much to cope with

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Shame

Feeling ashamed of a family members behaviours.

Shame at one’s own responses to the outcomes of brain injury e.g. feeling ashamed at becoming angry when a family member with brain injury asks endless repetitive questions.

Not going to family or social events because of feeling shame about the family member’s difficulty with appropriate social skills after brain injury.

Believing one is neglecting other family members, or not fulfilling role according to own expectations and feeling ashamed of not living up to own expectations.

Anger, Frustration and Resentment

Feelings of anger, frustration and resentment can come from the family and personal adjustments that are needed.

These emotions might be hidden, unspoken and build up or emerge as physical responses such as headaches.

Because there are strangers coming into family life, often into the family home. Being involved in private tasks such as bathing.

Resentment at people telling family what to do, how to manage, sometimes giving unwelcome and unwanted advice.

At the lives of others who are not living with brain injury.

Feeling Alone and Isolated

When extended family members and close friends no longer visit

When extended family members and close friends say (often not meaning to) hurtful things or advice. “You just need to get out more.” “He seems fine to us.”

Brain injury is generally poorly understood even amongst professionals this can increase feelings of being alone

Difficulty leaving a family member with brain injury to attend support groups or spend time with others.

Communicating even with family and friends who understand can be strained because of care responsibilities.

Helplessness

The brain injury was out of the family member’s control. This reinforces feelings of not being able to stop things happening, feeling out of control.

Not being able to “make it better” for the family member.

Hope

The feelings and reactions family’s experience are not always negative. For example HOPE can be an important emotion for family:

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• hope towards the next stage of recovery,
• hope of rebuilding family life,
• hope for renewing or rebuilding relationships.

Strength and Positive Changes

Identifying positive changes after brain injury – closer family relationships, more time together, improved lifestyle, changed behaviours.

Finding new strengths such as ability to care for another person, manage crises, taking over new roles.

Seeing the change as a ‘wake-up’ call and making positive life changes.

Family members may sometimes find new strengths in each other and their relationships

Recognition that both individually and as a family new abilities and new levels of commitment.

In the years I have worked with people who have a brain injury, understanding and supporting a family after brain injury, has been the area supporters have most often requested more information and training about. How to respond appropriately. What’s OK and what is not?  In a recent post I talked about the wonderful book “A Flower Between the Cracks” in this book Helen Sage describes many of these responses and reactions experienced by herself and other family members.

Simple Starting Points:

Have an understanding:

of the potential reactions and responses you might see from family after brain injury

that different family members may dealing with a range of different emotions, responses and reactions; at different stages; for different lengths of time;in different ways.

Put yourself if the shoes of each family member. Seek to understand how you can best support the whole family, while supporting the person with brain injury. More about this, often difficult balance next week.

 And finally

A short video clip to illustrate and inspire. Showing the strengths and commitment family are making in supporting their family member. While this might not be directly considered brain injury, it is inspiring both in reminding us about looking to people’s strengths, and the power of family:

 

Next week in Part 2 we will talk more about supporting families helpfully, sensitively and more successfully. Meantime I would welcome any resources you have found to assist you support a family after brain injury. Or as family members, what has been helpful for you?