The content of this post was supposed to be me interviewing my parents, asking them about the tips and advice they would give to parents who are facing the monumental challenge of raising a child with an ABI. Now here’s the thing, when we talk as a family about the consequences of the injury and how we will deal with certain after effects and strategise on ways to overcome challenges that are presented to us, we are a great team!
However, when it comes to the incident, how it occurred, when it occurred and how it has so drastically changed all of our lives, it naturally raises a lot of painful memories for all us. So the prospect of conducting some kind of interview was a positively horrifying prospect. So instead what I have done is allow them to express how they feel in their own words and getting their thoughts and experiences down on paper. This post is a combination of the their thoughts, opinions and experiences, straight from the horse’s mouth. So, allow me to introduce my parents!
The Experiences Of Sue & Lance Massey
“If you are reading this on the Headway Worcestershire website than I guess you are already caring for someone with a head injury and you will all be at different stages of that person’s recovery. You will almost certainly be caring for someone you love, probably a member of your family, and that person will almost certainly be a different person to the pre-ABI person, even if in very subtle ways. If that person is your child, then the whole business of caring becomes incredibly complicated. We would all do anything for our children but when we see them trying to cope with the changes that an ABI can bring, the need to make it all OK again takes over. Caring for someone with an ABI can be frustrating, exciting, upsetting, extremely demanding … but then you already know that, so all I’m going to try to do is throw a few things out there that I’ve thought about a lot since my son’s head injury in 2009. He was 19 when it happened as the result of an assault so I’m speaking from the perspective of being the parent of a young adult. When a person receives a head injury in his teens, suddenly the life he had envisaged, planned, dreamed about needs to be thought about in a different way, because he is now a different person, living his life in a completely different way.
The Key Information
I don’t want to be all preachy because none of us are saints and neither are the sons and daughters we’re caring for. However, some things are really important in the process of helping someone’s recovery. After the input from the NHS is over i.e. critical care, rehab, occupational/speech/physio therapy, it can (and does) feel like you’re on your own, that you’ve been put down in a foreign country with no map and you don’t speak the language. And every so often it all changes, just as you’re getting to understand it. However, here are some very important things you can do for your child, based on our experience:
- In the very early days and weeks of hospital care, when your child is lost in the fog of post-traumatic amnesia, try to be there, to be your child’s memory. Have named pictures of his family, friends and pets around so that the staff have points of reference to talk with him about. Have a list of your child’s likes and dislikes up for the same purpose. Keep a daily diary on a large sheet of paper stuck to the wall where he can see it. Record everything; meals, visitors, small steps of progress. Remember, if he seems to be distressed, upset, bewildered, stay calm – he will not remember this later, and you will need all your energy later when he’s all yours at home.
- Be with them at every appointment (medical or otherwise) to be an advocate, to be another pair of ears, to record vital information and dates and to make sure your child doesn’t end up in a pickle because he or she got the wrong end of the stick – this can have really quite serious consequences.
- Following on from that, keep your own record of appointments, deadlines, medication and repeat prescriptions (how many times have we run short of vital meds!) because even if you think your son or daughter is keeping all this information, there will be times when they forget and it can cause all sorts of difficulties.
- Always check messages taken by your child – encourage them to write everything down and keep the wherewithal by the phone. Our son gets stressed on the phone and we try to avoid him having to, for example, receive instructions or have consultations over the phone.
- Try, try, try to be patient – it’s so hard sometimes when you’re tired after work or just worn out from trying to be patient. What we say in a moment of snappiness can stay with someone for ages and hurt them deeply – I speak from experience.
- Don’t confuse laziness, inattention, lack of stickability, no “get up and go” with the extreme fatigue and effect on executive skills that can persist with head injury or mistake forgetfulness for lack of consideration – this is especially relevant when related to returning to work or education.
- Push for your child’s right to have extra time in exams, a quiet place to work and concentrate free from distractions, the need to take regular breaks.
- Depression is an all too common part of head injury recovery. Keep up the lines of communication with your child, however hard it is. Little did we realise, when our son was first injured that our biggest concern several years on would be his state of mind. Friends drop away, a social life becomes hard to maintain when you are always tired and can’t keep up with the conversation, stay out late or drink alcohol.
- Maintaining a relationship with a boy or girlfriend can require the kind of mental energy your child doesn’t have. Young men and women may find it hard to understand the changes their partners are experiencing and relationships can quickly be wrecked by what is perceived as inconsiderate or thoughtless behaviour on the part of the ABI sufferer. Try to be watchful and seek help for your child if you need it . We found talking therapy to be extremely helpful for our son, but it can be so hard to access and the need for it long term in head injury recovery doesn’t seem to be recognised.
- Educate yourself. Read all you can about head injury, find out about the support available – in our experience, where we live, this is an extremely difficult, frustrating and confusing process. We have found that a large number of agencies exist, both locally and nationally who don’t seem to share information, and you’ll find yourself going through the same administrative processes over and over again. You may well be regularly disappointed with the outcomes, but stick with it. Our son was able to take up his deferred place at uni because of the specialist equipment and help paid for by the Disabled Students Allowance. Without this it would have been impossible. There is nobody to guide you through this process or help you understand it – you have to do it yourself.
- You are SO important. It’s very glib to say you must look after yourself, take a break, do yoga, and eat well – yeah, yeah, yeah. It’s true, but so hard to actually do when you are so bogged down in the details of day-to-day caring. Making contact with other carers is a good thing to do, if you can, although where we live, courses for carers are constantly being organised and then cancelled because of low numbers. When you think about how much we as carers save the NHS in terms of missed appointments, hospital readmission etc., you would think we are worth a little money being spent on us, even if we are only a few.
What Did We Learnt
Actually I think the hardest thing is this: if you have someone you love dearly who’s life has been changed by an ABI, then your life has been changed as well. It’s easy to say “be positive”, “try to keep moving forward” and so on. The hard thing is to say to yourself, “A terrible thing has happened to my child, and therefore to ME, and I feel so sad/angry/frustrated/desperate about it.” And it’s OK to feel like that. Because no one else sees what I see, feels what I feel, knows what it’s like to be me in this situation. It’s now part of who I am. And now that I know that, I can try to move forward. Bit by bit.”
About the author
My life was changed for ever on the 30th of August 2009 when an attack on a night out left me with sever brain injuries. I was left in an induced coma after suffering fractures to the skull, bleeds on the brain, as well as severe bruising to the frontal lobes. Since the injury I have found it hard to find and keep work, to maintain relationships, and generally stay positive. I have decided to share all of my journey with you, in the hope we can bring brain injury awareness to the level it should be at. Please, follow my own WordPress blog Life After Brain Injury to keep up to date with my brain injury journey! Follow me on Twitter: @ABIBlogger
Tom Massey, ABI Blogger
Headway Worcestershire offers support to carers, through information, education, signposting, 1-2-1 help, group sessions and more. Please get in touch if someone close has suffered a brain injury. We have the resources to help you and the expertise to ensure our work is excellent. We will do everything in our power to help you.