We were the most ordinary, happy family. Two kids at uni, one at school, my husband Alan ran his own sales business and I worked from home as a writer. But five years ago, on Boxing Day 2016, when Alan collapsed with absolutely no warning, our lives changed forever.
A terrible time when he was in a coma in intensive care was followed by a year in hospital. The diagnosis was Autoimmune Encephalitis and the resulting brain injury meant that when Alan finally came home to us, he was a completely different person.
The effect on him of course has been immense, but just as profound has been the impact on our entire family. I realised that although there were many excellent books written by survivors of brain injuries, there was almost nothing for the wives, the husbands – and the children – who almost overnight, have to become carers. So, I wrote one!
Pulling Through: Help for Families Navigating Life-Changing Illness contains advice and inspiration on everything I’ve learned. It covers financial, practical and legal issues, talking to children about illness and clarifying medical terms. But I also share the emotional aspect of living with someone with a brain injury, and how to look after your own mental health, with chapters on the power of nature, music, optimism and humour.
Here are my top tips.
Studies have shown that the families who come out of illness best are those who “struggle well” – learning from adversity together. If you can help your family to become more resilient, this will undoubtedly serve all of you well in the future and may give you a renewed appreciation for life.
Coming to terms with the fact that Alan has virtually no working memory has been much easier for me than accepting that his brain injury means he has very little insight into his own situation – or empathy for mine and our children’s.
Brain injuries often leave patients with problems with memory. So, the process of ‘learning to live with a disability’ is fraught, as most ‘learning’ requires accurate memory! Unfortunately, many people affected by encephalitis do not learn from mistakes but rather learn to repeat those mistakes and explain them away. This is hugely frustrating! For example, Alan still cannot remember that our children are grown-up now, or that he is no longer working or driving.
The cognitive fatigue from a brain injury is not like normal tiredness. Alan needs eleven hours sleep at night and two hour-long naps in the day. When he is tired his brain simply shuts down – which might mean he can’t walk any further for example or more likely that he starts talking complete nonsense!
Anyone who has friends who are medical students will know they have a, shall we say, “robust” sense of humour. It is OK to find things funny even in the darkest times. Laughing makes you feel better, and it can be a brilliant survival mechanism. Alan’s brain injury means that he often believes he is in all sorts of weird and wonderful places rather than at home! This is sometimes very disconcerting – but also hilarious!
Whatever the reason why a brain is injured, there is good scientific evidence that the same things will help or hinder its recovery. Company, rest, routine, tranquillity, positivity and fresh air are good. And loneliness, incarceration, noise, anger, unkindness and hopelessness are not.
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