We just completed our three-part blog series about Traumatic Brain Injury. We gave you an introduction, told you how it is diagnosed and treated and all about recovery. Throughout, we repeatedly mention the long-term physical, behavioural and cognitive problems that an individual can experience following this type of injury and there is a lot of advice for the injured individual, but It came to our attention that there really is not enough information available for their family members, especially the ones who become the carers. That is why we have create this support guide.
An expert on traumatic brain injury once said it is “a family affair”. It affects every single member and almost every part of family life. 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 family members. A traumatic brain injury is different to other conditions in that its effects can be very sudden and families may have to adjust to enormous changes in circumstances over a very short space of time (sometimes overnight!).
Our three-part blog series highlights the fact that dealing with this type of injury is a journey, one that does not end when an individual is discharged from the hospital. Carers have to deal with a variety of stressors, for example difficulties with personality changes, anxieties surrounding how the rest of the family is coping, worries about others not understanding, financial strain (especially if a family member has to give up work) and even legal proceedings. In addition to this, they will have to deal with their own emotions to deal with. They may feel at blame, shocked, in denial, anxious, angry, frustrated and isolated. This represents only some of what many carers are dealing with and there may well be other things going on, as there are in any family.
The reason we thought that writing this blog post is important is because to be a good caregiver to someone, in this case to a family member that has experienced a traumatic brain injury, you have to look after yourself. If you feel significantly burdened with worry and feel that you cannot cope, you must contact your GP or the consultant in charge of your family members care to get some advice. If you feel like you want to take some active steps to improve your experience on this ‘journey’, here are some tips.
Looking after yourself in the hospital:
Where there is a traumatic brain injury, there is a hospital. The experience of being in hospital with a loved one can be very tough on anyone and some people can experience shock or post-traumatic stress disorder. There may be many restless nights or even starvation because of lack of appetite. With so much going on, and there being an uncertainty around the outcome, family members forget about their own needs.
It is important to cater to your own needs in order to take in the enormous amount of information that will continually be thrown at you. It is important to take regular breaks for food and rest and the best way to make sure this happens is to get help. If people offer to help out with cooking, washing, shopping, etc, then let them do so. Write down anything that strikes you about what the healthcare professionals have said, and take this opportunity to ask as many questions as possible. Also, if a question comes to you, write it down to ask later. It is also very important to remember other family members, especially if there are any younger siblings, at this stage, who may be missing school or might be having difficulties adjusting as well. Although it is understandable that you cannot give them all your attention, it is important you check in regularly and assign someone you trust to take good care of them.
Looking after yourself at home:
In our blog post about recovering from a brain injury, we discussed the steps, process and discussions that occur before sending the individual home, if they are in fact able to go home. If the decision is to send them back to their home and all the adjustments have been made to make your job of caring for them easier, you have to prepare for the changes to the way your family organises itself, and the way it does things. It is very possible that you (or another family member) may have to give up work to become a full-time carer. This is an enormous shift, and your life can change dramatically and suddenly. It is very likely that your loved one will need a much higher level of care than before their injury, possibly more than you might have initially expected, and it can take time to adjust. All other family members in the household may also have to do things very differently to help accommodate, and this may well put everyone under strain.
If you are the main carer and you feel overwhelmed, here are some very ordinary day-to-day things that may help emotional wellbeing:
- Keep up with friends and family: Maintaining relationships with the people you care about can be very tough. Caring for someone is very time-consuming, so it is important you keep time aside for this. 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.
- Keep fit and 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 support club or contact a charity: This can be very useful to get some advice, support or even meet people in the same situation as you. Here are some we recommend, but not all will be fit for your needs so look into them: Brain Injury Rehabilitation Trust (BIHRT), Brain Injury Hub, Brain and Spine Foundation, Carers UK, Headway, UKABIF.
- Activities and hobbies: You may think that it is the last thing you have time for but it could be useful to start something like this up. It can provide a much-needed break and provide the opportunity to meet new people. Anyway, 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.
Dealing with others:
You would not have thought so, but this is one of the most stressful parts of dealing with a brain injury because it is often misunderstood. This is particularly tough because you may worry that you are being judged as a poor carer by people who don’t understand the condition. For example, difficulties with attention or fatigue might be unfairly seen as naughtiness or laziness. But it is important to try and deal with this because there is a benefit to having a large support network that you can rely on.
Because it is misunderstood, it is usually up to you to pass on the knowledge you have picked up along the way to others. This can be frustrating because you get tired of repeating things but it can help prevent awkward situations and prepare others. For example, it is likely that your loved one may find it difficult to pick up on unspoken social rules around us and that might make them seem rude in conversation. It is important, however, that you try not share this information around your loved one as they may feel self-conscious or their feelings could be hurt. It might even be that they struggle to understand the effects of their injury, or find it difficult to give up on their independence, so they might not accept that they need help in some areas, and this needs to be considered.
Here are the most common questions you may be asked by others, so you should have some answers prepared:
- Can it be cured?
- How is this person going to be affected in the long run?
- Should I behave differently around them now?
- How are you? – Be honest!
- How can I help? – this is an important one. If you feel like you do not want to ask them for anything (i.e. help or something materialistic), give them advice that will help you make any encounters less stressful. You will know your loved one better than anyone else so you will know what might trigger them or what makes them feel at ease etc.
When it comes to dealing with others, ‘others’ includes close family members (e.g. siblings). It is important that you ‘deal’ with this too. If they are young, it can be very difficult to judge just how much to explain and at what time. Some siblings worry that their parents act as ‘gatekeepers’ of information, deciding what they can and can’t know. They may feel they’re not involved, or are being ‘kept out of the loop’, which may lead to resentment. Nevertheless, there are some things – particularly the physical circumstances of the brain injury – that may be distressing for young children so do not need to be shared.
It can be useful to take your cues from the individual themselves. If they’re asking about certain things, it’s clear they want to know more. Try to give them as much or as little information as they want. The evidence suggests honesty is the best policy when talking to others about illnesses. If you don’t know something, or the outcome of a particular situation isn’t clear, then in some circumstances it may be best to say so. These people are a crucial part of the family and the recovery process, and it’s important they’re not kept out of the loop.
It is very possible that the circumstances of their brain injury mean there are legal proceedings. Litigation can be a stressful process for anybody. In cases of traumatic brain injury, the proceedings may go on for some time. You may have to relay what’s happened to different professionals many times over. You may have to listen to different people talking about your loved one, and sometimes this may be in very clinical terms, which may be distressing. It is best to discuss this with your legal team so they can prepare you for what is to come and even tell you if your presence is not necessary at certain meetings.