Mental Health Awareness Day and #FamiliesAfterBrain Injury
By Alyson Norman
As a family member of someone who has had a brain injury, I am obviously very passionate about supporting the needs of other family members whose lives have been touched by brain injury. In a recent Anchor Point meeting we had an important conversation about what the key message would need to be for professionals about life after brain injury for families. One of the really important points that came from that meeting linked to the idea of secondary impact.
A brain injury can happen at anytime to anyone. Trying to process the experience of having a loved one with a brain injury, whatever the cause, is traumatic in its own right. As is the process of watching and supporting them through their rehabilitation journey. But these elements are part and parcel of life — no matter how hard we try, we will never be able to stop everyone from having a head injury, a stroke, a brain tumour or another illness or infection that leads to brain injury. It would be inappropriate for us to expect health professionals or social care professionals to take that experience away. It has happened and you have to live with it, however hard that may be. But the problem for many family members is that ‘primary impact’ is further exacerbated by the secondary impacts of the brain injury that may be more easily preventable. This may include being excluded from decisions about care or care needs on discharge from hospital, despite being expected to be the sole or main caregiver for that individual. It may be being told that you aren’t entitled to benefits because you have too much in the way of savings in the bank, or being told you can’t have carers allowance or be paid from a personal budget because you are related to the individual. It might be being denied a carer’s assessment because your eligibility is not immediately obvious to social care staff. Or it might be being ignored or side-lined over the course of your loved ones life by organisations who continue to fail to take your views and needs into account. Or it might also be a total disregard for your own mental health and wellbeing.
Today is World Mental Health Day and I feel it is essential that we recognise today the primary and secondary psychological impact that living with someone with a brain injury can have on people. If you are a family member of someone with a brain injury, or a close friend, you may be experiencing post-traumatic stress symptoms from witnessing your loved one nearly die, being stuck in a coma, being unable to speak, walk or eat by themselves. You may be highly anxious about what this event means for your loved one and for the future that you had planned for yourself and them. You may be depressed because you have lost all the things in your own life that gave it meaning — your relationship with that person, perhaps relationships with wider family and friends, possibly your job, your hobbies etc. Being a family member is an isolating experience and it is not uncommon for someone to lose access to all these things after brain injury. And it doesn’t just impact those closest to the person with the brain injury — these impact on the whole family. Anger is another common that many family members experience. You may be angry because your needs are consistently and unfairly overlooked by health and social providers who expect you to do a job that nobody would be prepared to sign up to if they were given the choice. Or you may be angry about other people repeatedly telling you how lucky you are that your loved one survived. And finally, you may be grieving. Grieving not for the loss of a physical life but grieving for the loss of the person you once knew. A person who is still sat right beside you on the sofa but may be utterly unrecognisable to you in comparison to how they were before.
On this World Mental Health Day we at Anchor Point ask you to give a thought for those family members, whether you are a professional or perhaps someone who knows a family member. Compassion and understanding can go a long way to helping to reduce that secondary impact, as can giving someone the chance to speak openly about how they feel.