Taking care of yourself and the family

Whilst your relative is in hospital it is important that you take regular rests, don’t skip meals and don’t neglect your life outside the hospital. Don’t stay at the hospital all day – it doesn’t help you or your relative. They need to balance therapy and rest, and you need time to yourself to keep the rest of your life on track. For lots of reasons it can be difficult to leave your relative so talk to the staff about managing this.

Emotional reactions

This can be an emotional time as the initial shock wears off and reality sinks in. It is normal to experience a wide range of emotions from fear and anxiety to elation when progress is made. People often feel guilty, even if they know there is nothing to blame themselves for. Reactions can be extreme, tensions high and families can fall out. Remember this is difficult for you all. If you feel you are really struggling to cope there are support services available which can help. These services are listed in the ‘Sources of support’ section.

Children

Children may have particular problems understanding and coping with the situation. They may blame themselves or express their emotions through difficult behaviour. It is important to remember that they are not trying to make life harder, but just trying to cope with the situation.

Wider network of family and friends

Everybody will be asking you for things. This can be exhausting and distressing. Try to organise one or two people to be the point of contact for other family and friends. You may want to have a message on your mobile phone that updates callers on the situation. Although people are keen to visit, too many visitors can be tiring for you and the patient. Talk to staff about managing visitors.

Legal matters

There may be legal issues to consider. If the injury is the result of an assault or criminal act the police may be involved and will provide information about criminal compensation and the progress of any court case. If another party is responsible for the injury, for example due to a road traffic accident, work accident or assault, there may be a legal case for compensation. It is very important that you receive appropriate legal advice from someone who is a specialist in brain injury claims. Headway provides information about claiming compensation and specialist solicitors.

Customer Service Team

If you are concerned about your relative’s care talk to the senior nurse on duty that day. If you still have concerns, the Customer Service Team answers questions, resolves concerns and provides information for patients, relatives and friends. They can also provide information about making a complaint, although usually a conversation with ward staff resolves concerns. Contact details for the Customer Service Team can be found in the ‘Sources of support’ section or at the hospital reception desk.

Questions to ask during recovery and early rehabilitation

This is a stage when people often have lots of questions. Many of these may be answered while talking to the nurses or sitting at the bedside – however some may not. It can be useful to arrange a meeting with the team if there are questions that you still have, such as:

• What progress is your relative making?

• Who is involved in treating them and what are their roles?

• What will happen if they can’t eat?

• What help is available if they can’t control their bowels/bladder?

• What about problems with sleep?

• Can you take them outside for a walk in the grounds?

• How can visitors help?

• How much stimulation is helpful for your relative?

• What support can the family offer?

Things to do during recovery and early rehabilitation

For your relative

• Don’t worry unduly about strange or bizarre behaviours – ask staff about this if you are particularly concerned

• Familiar faces can be helpful – keep it to one or two at a time

• They may need someone to sit with them at all times if there is a risk of harm

• If you feel your relative needs more supervision talk to the staff

• Don’t correct them too much as this can be frustrating

• You may need to repeat things for your relative several times

• Keep the environment restful – too much TV or radio can over-stimulate them

• Tell staff if the patient normally uses glasses or a hearing aid

• Tell staff if the patient has false teeth

• Ask staff if you would like to be involved with their care

• Ask the therapists what activities will fit in with therapy

• Only offer food and drink following advice from the staff

• It can be helpful to keep a record of important events, expenses and receipts, which can all be useful evidence in a compensation claim

For yourself

• Take time out for a break - being very tired makes coping more difficult

• Accept help and support from professionals and friends/family

• Don’t neglect essentials such as paying bills and looking after the home

• Establishing a regular routine, including breaks and meals, can be helpful for you and the family

• Children may be particularly upset so encourage them to share their concerns with you or another trusted adult

• Start a diary of treatment and recovery and encourage family and visitors to add to it

• Take photographs to build a record of recovery and achievements (ask staff about this if you wish to take photographs of your relative but they are unable to give consent)

• Consider returning to work, possibly part-time, in order to maintain a sense of normality and to manage financial commitments

Telling people

There are a lot of people who need to be told about the situation including:

• Your relative’s friends – keep them informed and involve them as appropriate

• Teachers at your children’s school or nurseries

• Employers – both yours and your relative’s

• Insurance firms – check your policy to see if you are covered for loss of earnings, mortgage or critical illness

• GP - it is a good idea to keep your own and your relative’s GP informed and seek their advice when necessary