ADVICE FOR FAMILIES

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.

The early hours, days, weeks and months pass in a haze of stress, worry, and heartache. 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 them in early recovery.

At PAUL For Brain Recovery, we offer one to one family support sessions to help you when caring for a loved one following a brain injury. We can give you education, advice and strategies on how best to help your loved one recover in the best possible way.

Early Recovery

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. Make an appointment at our centre to discuss how we can help with that transition.

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.

Rehabilitation team

At PAUL For Brain Recovery, we have dedicated Brain Injury Case Managers who will ensure your loved ones are getting access to the required services for their current needs to be met.

A community therapy team may be needed and could consist of the following;

  1. 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 difficultly performing a task.
  2. A speech therapist – helps with communication and language disorders.
  3. A neuropsychologist – helps patients relearn cognitive functions and developcompensation skills to cope with memory, thinking, and emotional needs.
  4. A physiotherapist helps patients with mobility issues to assist in rebuilding andmaintaining strength, balance and coordination.
  5. A Social Worker –

We will be with you every step of the way, to create a bespoke personal pathway that meets your loved ones needs. We can help to fund the professional services that will be needed and bridge the gap between inpatient services and community services.

Relationship changes

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

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 long 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

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, please come and talk to us at the PAUL For Brain Recovery Centre.

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 please be mindful that the overall goal is to promote their independence, however it is essential that they are safe in doing so.

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.

Children

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 besensitive 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. Sugar, caffeine, alcohol and cigarettes should be avoided
    • Ensure medication is taken on time
    • Provide comfort and reassurance
    • Be patient
    • Use this folder to record important milestones, low moods, improvements andsetbacks, 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 eachday, or if they have mobility problems take them out in their wheelchairIt 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. 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. If this is the case, please make an appointment to see a member of our team. Carrying around negative emotions will affect your wellbeing and needs to be talked through.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 book in at reception for a family support session.

As well as dedicated professionals, we have vast experience into the real life challenges that brain injury brings provided by a myriad of our brain injured friends who can offer support, peer mentoring, hope and inspiration.

The information provided on this page is not clinical advice and not intended to be a substitute for professional medical advice, diagnosis or treatment. Never disregard professional medical advice, or delay in seeking it, because of something you have read here. Never use information produced/provided by PAUL – For Brain Recovery in place of seeking professional medical advice.