Early stages

Unconsciousness/coma

Often a person with a brain injury will be unconscious at this stage and they may be referred to as being in a coma.  Coma may last for any period of time from a few minutes to several weeks and it is not possible to predict how long it may continue. 

If your relative is in a coma they may look as though they are asleep, or may seem very restless and agitated.  Different people display different levels of responsiveness while in a coma and doctors may use the Glasgow Coma Scale (GCS) to assess the level of response.  The GCS assesses the level of consciousness by measuring eye, verbal and motor responses to stimulation.    

It can be very distressing to see your relative in a coma and you may feel frustrated and helpless.  In time, there may be things you can do to help, but some activities can have an unhelpful effect on recovery. Remember, communicate as much as possible with the staff team and be guided by them.

Staff may ask you to sit quietly at the bedside or ask you to wait outside while they carry out personal care or exercises.  It isn’t always appropriate for you to be involved in these early stages with personal care or exercises, as the nurses and the therapists are monitoring responses to the stimulation.  However, it may be appropriate later to ask how you can be involved.  Sometimes, just talking quietly to your relative can be enough.

Post-traumatic amnesia (PTA)

After a period of unconsciousness a person may appear confused, agitated, or distressed and be unable to remember day-to-day events properly or recognise family or friends.  They may be aggressive or hostile and may wander off, regardless of other injuries.  They may also engage in behaviour of a sexual nature which can be embarrassing. This is known as post-traumatic amnesia (PTA) and can be very distressing for families and carers.  

It may be helpful for you to understand that your relative is not in control of what they say or do while in PTA, so try not to take their behaviour personally or dwell on it too much.  The length of PTA varies and can last from a few minutes or hours to a number of weeks or even months.  The length of time spent in PTA and the length of the period of unconsciousness are regarded as indicators of the severity of injury after TBI.  This can give an indication of the level of recovery that can be expected, but all brain injuries are different so there are no definitive rules on this. 

PTA is a normal stage of recovery and passes in time.  In some cases medication may need to be given to keep them calm.  Once they have emerged from PTA, your relative is likely to have very little memory of this period.

Epileptic fits

Occasionally the person may have an epileptic fit (seizure) after a severe brain injury and staff will be watching for this so that the necessary treatment can be given.  This can again be quite frightening, but does not necessarily mean the person will continue to have fits in the future.

Questions to ask at this stage

It is likely that you will have many questions to ask about the treatment and care of your relative.  It is important to communicate as much as possible with the doctors, nurses and therapists involved in your relative’s care.  They may not necessarily know all the answers, but should be able to guide you to the right person.  It may be necessary to make an appointment to speak to consultants and senior staff members.

Consider asking some of the following questions:

  • Who is the consultant responsible for my relative?
  • Is this the appropriate ward for my relative?
  • Do they need a neurospecialist?
  • What is my relative’s current condition?
  • Are any operations needed?
  • What are the visiting arrangements?
  • Who is the lead nurse responsible for my relative?
  • What other professionals may be involved?
  • How much recovery is it realistic to expect?
  • What can family and friends do to help?
  • When will rehabilitation start?

Some things you may want to do at this stage

  • Communicate as much as possible with the medical staff.
  • Organise visiting hours with family and friends.
  • Rest, take breaks and make time for yourself to make sure you maintain your physical health.
  • Try to understand and manage your emotional reactions and seek professional support if you feel you aren’t coping.
  • Try to keep on top of things at home.
  • People are often very keen to help so do ask them to take on specific tasks. 
  • Try to be sensitive to the emotional reactions of family and friends and help each other to cope.
  • Keep a notebook or use the pages at the back of this resource and note down questions to ask as they occur to you so you don’t forget.
  • If your finances will be affected, talk things through with your bank manager in order to reschedule any bills and debts.
  • Keep both your own and your relative’s employers informed about the situation and make sure arrangements are in place for time off and statutory sick pay.  
  • Seek specialist legal advice if there is a compensation claim. Contact Headway Lincolnshire on 07546 592 526 for a list of Brain Injury Specialist Solicitors in Lincolnshire.
  • Keep receipts for car parking, travel, etc – if there is a damages claim at a later stage, you may be able to recover these costs.  Keep records of days missed at work by yourself and your relative.
  • Keep records of the injury, your relative’s treatment and the professionals involved.
  • Seek support from professionals, such as hospital staff, your GP and Headway
  • It may be useful to keep a diary which at a later stage, may help your relative to understand what happened to them. You might want to include photographs, however if your relative is not able to give consent for photographs to be taken you should discuss this with staff.
  • Having a loved one in hospital can have serious impact financially as well as emotionally. Headway UK can provide grants for up to £500 (for families with less than £1000 savings), they can provide support for:
  • Travel costs for families visiting relatives in hospital or rehabilitation.
  • Emergency Accommodation Costs.
  • Additional family costs in the immediate aftermath of brain injury.

Who can apply? Carers, family members, Headway help line staff, Headway Groups and Branches, Clinicians and other Professionals.

Contact Headway on 0808 800 2244, or visit headway.org.uk for more information.