Being discharged from hospital may be something you look forward to or it may not be, but the parent or carer will also have their own thoughts. For the injured person, it’s either ‘I can’t wait to go home, getting back to my own surroundings and away from hospital colours and the smell of disinfectant’ or ‘I’m scared to leave the safe routine of a hospital.’ But for parents and carers, they might have other thoughts and be more worried about what is going to happen to their loved one when they leave the hospital.
When your loved one who has had a brain injury comes home from hospital, I would say that unfortunately you are going to need to grow a thicker skin because you may well receive some insults! That is not because they want to upset you, but you know when you think something in your head about someone, something that you would never say out loud because it would upset them and possibly ruin your friendship! Everyone thinks things that they want to remain private but people with a brain injury lose that filtration system that keeps them private. If you have a spot on your nose, you’re a bit overweight or if there’s anything you might be self-conscious about, then prepare yourself because it will probably get mentioned. The reason behind it is probably not to purposely upset you, they might be trying to be funny, I know I was and although I see I was not funny then I certainly didn’t at the time! Hey, at least you’re going to get honesty!
The me that left the hospital was a different person to the one before I went in. I’ve since been told that my brain injury was quite obvious, but I was oblivious to how obvious these changes were, so be aware that they may be unaware.
As time has passed, I have been able to look backwards and see how bad I was. In fact, every year or so I can look back and see how much I have improved. I am currently obsessed with what I will look back on in a year’s time and think was so bad. Be aware that the person being discharged from hospital will be unaware of the changes that you can see in them.
Being months in a relatively enclosed, quiet, calm environment meant that I missed my old life and longed to be in a busy hectic environment with a lot of stimulation like a night club. What I thought I wanted and what I needed though were two different things and the realisation of this was really difficult to take. The first time I went into the Trafford centre, a big shopping mall near Manchester, on a fairly quiet evening (it’s always a little busy, but this was quiet by comparison), I found myself totally overwhelmed by stimulation. I didn’t realise what was happening at the time though and just put it down to me having a bad day. I would make excuses for myself and be convinced it was only temporary. Acceptance just takes time I’m afraid, it probably took me 5 years as a reference - sorry if that’s not what you want to hear!
Most of my symptoms of brain injury were subtle but there were a lot of them, and they all happened at once, my world was suddenly so confusing. It’s frightening and overwhelming and all I wanted to do was hide away. I would advise you to try to prevent this from happening. I did this for a while and put on a considerable amount of weight. The more this is allowed to happen the harder it is to get out of it – I can honestly say it was one of the saddest times of my life. I would say to stop this before it starts and encourage the person with the brain injury to do whatever exercise they feel comfortable doing, they could take a walk each day in nature or if they are a wheelchair user, then take them out. Promote a healthy lifestyle.
Unknown to me I had been protected from my fatigue, intolerance to noise and from being overwhelmed by stimulation for almost six months then I was exposed to a lot of what I’d been protected from all at once and I didn’t like it. This made me very reluctant to be put in this situation again. So I stayed inside, on my laptop where the new emerging trend of social media became my window to the outside world. I stayed inside because it felt safe, not because I wanted to. I wanted to be out socialising, being successful in life, but I found life outside the house to be overwhelming and frightening, so I just stayed inside in my head.
The road to recovery from brain injury is far from certain but I read in the early days that afterwards you heal for about three years or so. I thought after three years that I was as good as I was going to get. I can tell you from experience that the only way to stop healing is to give up and stop trying. The fitter I have been and the more I have tried and the more things I have involved myself with, the better I have been.
My advice is to encourage your loved one to try stuff, they might fail, get overwhelmed, consider giving up but tell them not to. Suggest that they write down how they feel because anything they write down now, they will love to read in years’ time. The improvements they make won’t be physical but will come from experience and how to navigate their condition. Let them be aware that while they are messing up and making mistakes, they are learning and without making those mistakes they won’t make progress. Tell them to be brave and try something new!
Brooke Trotter
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