An expert on acquired brain injury once said it is “a family affair”.1 Few families who’ve experienced acquired brain injury would disagree. It affects every single member and almost every part of family life.2, 3
The trauma of hospital, stresses of returning home, and the day-to-day strains of managing the household and finances can all place an enormous burden on parents. 4 Acquired brain injury is different to some other conditions in that its effects can be very sudden. Families may have to adjust to enormous changes in circumstances over a very short space of time. Parents may face a tough time trying to get the best services for their child, which comes with its own share of stresses and strains.5
We feel like we had to become different people, in many ways. We’re not the sort of people who’d want to push to the front of the queue, but we just had to be very demanding to get what we could for our child." Parent's experience
The strain on parents
Families’ needs may change at different stages of the ‘journey’ of ABI. They may experience one set of feelings at the hospital, and another set entirely when their child returns home. Before we explore these experiences in more detail, let’s first look at some of the areas of stress and strain that parents may have to deal with:
- Difficulties with their child’s behaviour6
- Anxieties about how siblings are coping with the changes7, 8
- Friends, neighbours and relatives not understanding9 (Read about talking to others about ABI)
- Financial strain. Perhaps a parent has given up work, or there are extra costs for transport or care10, 11
- Legal proceedings12
You find yourself looking for these little turning points all the time – it’s very difficult." Parent's experience
And on top of the practical circumstances, there may be these emotional ones:
- Feelings of loss for how their child was before their injury16
- Anxieties about the reactions of others17
- Guilt at what’s happened, guilt for resenting the changes the injury has brought about18
- Anger and frustration19
- Isolation – parents may lose time to spend with friends as their priorities change13
- Changes in roles (more on this below)20
This represents only some of what many parents are dealing with. And there may well be other things going on, as there are in any family.14
For more than a year after the accident it felt like my heart was in my mouth all the time. I think adrenaline carries you through the whole experience, but one day it was almost like it ran out ... and I just felt exhausted. "Parent's experience
It is of utmost importance that parents remember to look after themselves. This needn’t be something you have to do on your own (read about other people who can help).
It’s thought that a positive and supportive family environment can make a positive difference to a child’s progress.21, 22 If you are concerned about the way stress is affecting you or anyone in your family, you can speak to your GP.
I felt like the impact of everything meant I lost a sense of myself. I felt like I was changing through this experience as well. " Parent's experience
Let’s look in more detail at some of the aspects of parents’ experience. But as you read, bear in mind that all parents deal with things very differently.
Feelings you may experience
Parents whose children have an acquired brain injury talk about the wide range of emotions they experience. Some talk about their feelings at different ‘stages’ of the journey.
Coming to terms with any kind of difficulty can take time, and the feelings people experience are best understood as a process. Parents of children with an acquired brain injury are having to make big adjustments to their new circumstances.
Everybody’s experience is different, but we’ve tried to look at the feelings some parents experience.
Feelings of loss
The changes to a child’s behaviour and circumstances place great strain on parents.15 Some say the experience is almost like mourning, in that they grieve for the child as they were before the brain injury.16
A child may be very different, and while the family may be experiencing feelings close to mourning, it may not necessarily be easy for others to understand.
Parents may experience these feelings more keenly at particular times, perhaps the anniversary of an accident, or the date they would have started college.23
Sadly, some parents may have to cope with bereavement. You can read more about this here
Parents – understandably – find it difficult to hear that their child now has a disability. Sometimes, parents may question the diagnosis. They may challenge what the healthcare professionals have said, which may get in the way of treatment.24
Children often make speedy improvements in a short space of time, before this improvement begins to slow down, and this can make things very difficult for parents.15
But it isn’t for anyone else to say how a family should be thinking or feeling, and it isn’t for anyone to tell a parent to ‘accept’ their situation.25 Everyone must be allowed to move at their own pace.
Guilt and blame
These feelings may be particularly pronounced if a child has been involved in an accident. A parent may wonder if it was preventable, or they may blame someone for the injury. This may be the driver of a car, themselves, or even the child.26
Guilt and regret are very common and are agonising emotions for parents to experience.27 It’s natural for parents to think “if only” this had happened or that hadn’t happened.
Again, it isn’t for anyone else to say how a family should be thinking or feeling, and it isn’t for anyone else to tell a parent to ‘accept’ their situation25.
There is no single ‘cure’ or treatment for acquired brain injury, and some children may never fully return to the way they were before their injury.29 Progress may not always be rapid. And some parents may face a tough time if the speed of progress slows down over time.30, 31
These things can place a great deal of strain on parents. They may also have the uncertainty of not knowing if all of the effects of the brain injury have come to the surface.
We know that some of the effects of acquired brain injury may not make themselves known until the injured part starts to be used.32 An example of this might be a five-year-old who has an injury to their frontal lobes (which are above our eyebrows and behind our forehead). It’s the part of the brain responsible for decision-making, judgment and problem-solving. And the effects of the injury might not become clear until the child is around 12, when they start to use these skills more.33, 34 But in all this uncertainty there may also be great possibility.
Looking after yourselves at the hospital (acute setting)
Parents may have restless nights, and may not be eating too well.38 One of our parents at The Children's Trust described the experience as like “being in a bubble”.
The sights and sounds of a hospital can be very distressing. Parents may feel like they’re no longer looking after their child, and their role now is more like that of a spectator.
There’s a danger that parents may forget about their own needs, with so much going on.39 Parents also have to take in an enormous amount of new information at a difficult time.40 And even the support of family and friends may be overwhelming at times.11
Looking after yourselves at home
An acquired brain injury can change the way a family organises itself, and the way it does things. We’ve already spoken about the way parents may feel they’ve become a ‘spectator’ in hospital.
If a child is able to return home, it may well be that a parent gives up work to become a full-time carer for their child. This is an enormous shift, and a parent’s life can change dramatically and suddenly.20
A child may need a higher level of care than before their injury, and it can take time to adjust. Parents and siblings may have to do things very differently to accommodate a child with an acquired brain injury, and this may well put everyone under strain.41, 42
The transition to adulthood
Parents get ideas about what to expect from their children from many different places. The media, friends and family may all offer ideas. Sometimes, acquired brain injury can challenge these expectations, and parents may find themselves ‘off the map’ with their children.
It isn’t always easy for parents to know how much independence to allow their children. It is hardly surprising that some parents of children with acquired brain injury worry about how vulnerable their child is.
They may be worried that their child is vulnerable around other children. Parents may be making very complicated decisions about how much independence their child can safely manage.
We try to take each challenge one at a time. It can get a bit overwhelming when you look at the bigger picture." Parent's experience
Sometimes, the circumstances of an acquired brain injury mean there are legal proceedings. Litigation can be a stressful process for anybody. In cases of acquired brain injury, the proceedings may go on for some time. Parents may have to relate what’s happened to different professionals many times over.
They may have to listen to different people talking about their child, and sometimes this may be in very clinical terms, which may be distressing.
The reactions of other people
We know that acquired brain injury can sometimes be misunderstood. This might be particularly tough on parents, who may worry they’re being judged as poor parents by people who don’t understand the condition.44
Cases of acquired brain injury in children sometimes attract the attention of the media, both local and national. Read more about dealing with media attention.
Your own relationships
Relationships between partners may be placed under enormous strain when a child has an acquired brain injury.45, 46 Relationships with grandparents or immediate family may be affected. Different parents may deal with a situation differently, which can cause difficulties.47
Parents may disagree about how things such as how to punish a child appropriately, or what level of independence to give them.48
Concern for one another may lead partners to keep their feelings to themselves. It is one more reason why parents must remember to look after themselves during this difficult time.
We don’t presume to have the answers here, but it’s important for parents to try to be aware that these tensions can surface. And that it’s only human for them to do so.
We’ve tried to set out some ideas for dealing with stresses and strains below. But for more information, Contact has produced an excellent guide on relationships.
The organisation spoke with more than 2,000 parents about how caring for a disabled child affected their relationship. Read Contact a Family's relationship guide.
Contact: The Contact website offers information and support for families with disabled children across the UK. This link offers the chance to find organisations who may be able support you in your area.This may be useful as you may not have come across parents who have shared these experiences. https://contact.org.uk/advice-and-support/in-your-area/
Relate: Relate offers support and advice on relationships. Call 0300 100 1234 or visit http://www.relate.org.uk/
If you're feeling overwhelmed 49
For most of us, there are no ‘quick fixes’ for dealing with stress and anxiety. But there are some very ordinary day-to-day things that may help emotional wellbeing:
Keeping up with friends and family
Maintaining relationships with the people they care about can be very tough for parents. Parents with children in hospital talk about being in ‘crisis management’ mode, with little time to talk to other people.
Dealing with the challenges that present themselves in rehabilitation, back at home, or back at school can also be time-consuming. But most parents talk about the importance of trying to keep in touch with friends and family.
These people can provide a much-needed break and a fresh perspective. Try to involve them in what’s happening and try to accept their help where it’s offered.
After two or three weeks, I started to realise we were in a kind of bubble at the hospital... we were only talking to each other and we were only talking about what had happened." Parent's experience
Try to keep fit and eat well
Staying on good physical form can have a genuine impact on mental wellbeing. Try to get the sleep you need wherever you can, and try to eat and drink as healthily as possible. Some people find that exercise can help keep stress levels down and can contribute to a good night’s sleep.
Try to avoid alcohol or other drugs if you’re feeling low, stressed or anxious.
Join a club or sporting team
It might be useful to join some kind of social organisation if you have time. Again, this can provide a much-needed break and provide the opportunity to meet new people.
Whether it’s taking up a new hobby, joining a reading group, or making the time to do something of your own, activities can be very useful.
As awful as it sounds, I got tired with people asking how Michael was doing... you sometimes need that time for yourself rather than being defined by what’s happened to the family. Joining the local pub’s five-a-side team was really helpful." Parent's experience