In the hospital

A brain injury has an immediate effect on the family as they battle a wide range of emotions while coming to grips with the hospital system.

The initial hospitalisation, waiting for a prognosis and even things like understanding medical terminology can all add to stress. There are many places to find support at the hospital, both for the patient and family members.

In the Intensive Care Unit (ICU), a registered nurse is always available and assigned to patients. Most hospitals should have a social worker available who can assist with information and navigating the hospital system. There is going to be a lot of information for you to understand, at a time when your ability to process information and remember things is going to be limited by the stress. Make lots of notes, and be sure to ask staff to write things down, and to provide printed material that you can keep, and look back on later.

Hospital staff (particularly the nursing staff) have seen many people go through this, so not only will they understand, they may have helpful suggestions or ideas.

It is very stressful for families when a loved one acquires a brain injury of any kind. A period of shock or disbelief is common at first. Many report a sense of unreality and being on “automatic”.

It is perfectly normal to feel a loss of control, panic, anxiety, fear, despair, distress, guilt, blame, anger, and/or absolutely nothing at all. It is also perfectly normal to feel all these things at once or swing between them. It is going to be hard for a while, so be kind to yourself. There is no ‘right’ way to react or to feel; there is nothing you ‘should’ be feeling or experiencing. Those around you are going through the same thing, but it is important to remember that how someone is acting may not be an accurate reflection of how they are feeling. If possible, forgive yourself and others for lapses in social skills or failing to live up to the standards you would normally expect.

Predicting the level of recovery after a brain injury is difficult. Doctors are usually cautious about early prognosis. Family members and other visitors have the right to ask questions, express a point of view, and receive clear and timely information. Sometimes the answer may be “we don’t know” and this may be the only honest answer available. Patience and persistence are required in the search for information.

Understanding medical terminology can be difficult, especially during times of stress. However, it is better to ask questions than not understand what is happening. If hospital staff use words you don’t understand, ask them to explain things in a simpler way.

Some hospitals hold meetings with family members where you can ask questions. Write these down and record the answers. Common examples include:

• What are your treatment goals?
• What is being done to achieve these goals?
• Do you have any idea of how much recovery can be expected?
• What ongoing effects from the brain injury are expected?
• How can the family help at this point in time?
• Should we be doing anything now to prepare for discharge?

This is a very stressful and emotional time for family members. Look after your own emotional and physical health so that you can provide support for the person with brain injury and each other in the weeks ahead. Commonly, the family feel they should be at the hospital as much as possible, but it’s recommended to go home regularly and recharge your batteries as the recovery process can be long.

• remember to eat well and get regular sleep
• organise a rotating schedule for visits by family members
• talk with others about your feelings and experiences and maybe join a support group
• reduce other sources of stress in your life
• accept support e.g. meals being cooked or help with housework
• be aware others may deal with the situation very differently to you
• maintain a sense of normality with routines and structure in your life
• learn as much as you can about brain injury
• call Synapse on 1800 673 074 to find out about available support.