I have written this blog to give information and advice to the family/friends and loved ones of an individual who has suffered from a brain injury. I feel that it is very important not to forget that a brain injury not only impacts on the person, it has a ripple effect which affects the whole family unit including partners, family and friends.
I have personally been in this situation, when my brother suffered a severe traumatic brain injury when he was only 15 years old. I felt helpless, wondering what I should do for the best, how to help and wondering what the future would look like for him and indeed us as a family unit.
The early hours, days, weeks and months pass in a haze of stress, worry, and heartache and many family members express feelings of helplessness when their loved one is in hospital.
Please be assured that just being at their bedside, offering love, comfort and support, is the best possible way to help someone in early recovery. Sometimes it doesn’t feel like it’s enough but trust me; it is!
Having measures in place ready for when your loved one is discharged from hospital, will help everyone to adapt and cope with the situation and help to relieve some of the stress. If you would like to read more information on what help is available from your Local Authority, then please click the link below.
Recovering from a brain injury relies on the brain’s plasticity—the ability for undamaged areas of the brain to take over functions of the damaged areas. It also relies on regeneration and repair of nerve cells. And most importantly, on the patient’s hard work to re-learn and compensate for lost abilities.
In the early weeks or months, a rehabilitation team may be needed to help the recovery process.
A therapy team may be needed and could consist of (but not limited to) one or all the following;
- An occupational therapist – helps patients to perform activities of daily living, such as dressing, feeding, bathing, toileting, and transferring themselves from one place to another. They also provide adaptive equipment if a patient has difficulty performing a task.
- A speech therapist – helps with communication and language disorders.
- A neuropsychologist – helps patients relearn cognitive functions and develop compensation skills to cope with memory, thinking, and emotional needs.
- A physiotherapist helps patients with mobility issues to assist in rebuilding and maintaining strength, balance and coordination.
- A Social Worker – Can help to get funding for care and support as well as home adaptations.
A Brain Injury Case Manager
A Brain Injury Case Manager skilled in organising and coordinating rehabilitation services (like the ones above), to maximise an injured person’s recovery and ensure they receive timely well-coordinated, quality care and treatment.
The case manager will assess what care and domestic help is needed. They make sure the right accommodation, adaptations, aids and equipment are in place. They also make sure vocational assistance is put in place if a person needs to adapt or change their job; or will assist in obtaining advice about what state benefits are available if they are unable to work.
What they do can make an enormous difference to their client’s life and wellbeing which eases the burden on family and friends. With the correct help and support your loved one can learn to cope with the terrible situation caused by a life changing accident. Rebuilding a life after brain injury can be challenging, but having the right rehabilitation, help and advice; gives someone the best possible chance of recovery
Following a brain injury, it is very common for the relationship to change between you and your loved one. Personality, behavioural, physical, and emotional changes, can all impact upon your relationship.
Partners may also ﬁnd that their role has changed as they care for their loved one and can feel that the role of carer is incompatible with the role of sexual partner.
Additional roles and responsibilities – such as running the household alone and a loss of parenting assistance can prove to be extremely difficult.
Potentially the ABI survivor may be unable to show empathy, love and sensitivity, and this can be particularly difﬁcult for partners to cope with. This, along with day-to-day stresses and strains can result in feelings that are sometimes difﬁcult to overcome.
Remember that as difficult as it is for you right now, brain recovery is a lengthy process and will change over time. How your partner is now, may not be how they will be in the future. If you are struggling, then please come and talk about your feelings in confidence to a member of our team.
Parents of children who suffer a brain injury, nearly always feel high levels of guilt. Please do not suffer in silence and allow yourself to be consumed with guilt. Speak out to family members, friends or a professional.
As your child moves on through the recovery process, naturally, you may feel more overprotective and anxious when they try to gain more independence. It is understandable that you feel this way, but the overall goal of rehabilitation is to maximise independence, therefore so long as your child is not in danger, allow them the freedom to move forward in their recovery.
Parents reassuming the role of carer after your grown-up son or daughter has suffered an ABI can be very difﬁcult. You may not have expected to be caring for your child full time again later in life, and it is tough accepting this monumental change.
If a parent suffers a brain injury, it may be that the parent/offspring role reverses and you may have to assume the parental role to care for your Mum or Dad full time. It may be exceedingly difficult to cope with seeing a parent at their most vulnerable. In addition, having to put your own life on hold to support their recovery, sometimes to the detriment of your own family can be tough.
It can be very confusing and distressing for children after their parent suffers a brain injury. They may experience reduced attention and a loss of affection from their parent, whilst also feeling confused by the changes and unpredictable behaviour of their parent. They may feel that they have lost their mother or father, so it is important to communicate with them through the transition and potentially seek professional support.
How you can help
It is common to worry if you are doing the right thing; feel helpless, or just not know how to help in the best way.
Here are some tips for helping your loved one to adjust at home after brain injury:
- Try to reduce stress and pressure
- Reduce the amount of audio and visual stimulation – the brain injured person may be sensitive to light and noise. Too much of this may lead to stress and confusion
- Keep visitors to a minimum
- Establish structured daily events and routines – factoring in plenty of time for rest!
- Encourage healthy eating – fresh fruit and vegetables
- Sugar, caffeine, alcohol and cigarettes should be avoided
- Ensure medication is taken on time
- Provide comfort and reassurance
- Be patient
- Use a diary to record important milestones, low moods, improvements and setbacks, plus any medication problems
- Be prepared to liaise with the hospital, GP and other relevant services
- Ensure regular breaks are taken in a quiet room away from any stimulation
- Wherever possible, encourage gentle exercise. Either a slow walk in the fresh air each day, or if they have mobility problems, just sitting outside is good.
It is also important to look after yourself and to be aware of how you might feel while caring for a loved one with a brain injury. Remember that your health and wellbeing matter too. I know that it is hard to remember that when you are all consumed by looking after someone.
It is very common to feel high levels of guilt, anxiety, hope, despair, frustration, and resentment. You might feel responsible for what has happened, even though it is NOT your fault. Carrying around negative emotions will affect your wellbeing and needs to be talked through with a professional if the burden becomes too great, visit your GP for a referral.
As a family member the important thing to remember is, that your love and care will be helping your loved one recover, even if it doesn’t feel that way at times. If things are becoming difﬁcult then please ring us for a chat and some advice, we would like to help. I understand what you are going through and always have a friendly ear ready, should the need arise.