From Wife to Carer Overnight
Tamsyn Wood, mum of 4 and carer to her husband Alex, who suffered a severe traumatic brain injury during a rugby training session, describes the recovery pathway as being 'so complicated, navigating a system that you have no idea about until something like this happens to you - then, riddled with grief and trauma, you have to somehow keep it together enough to manage the fall out, with an unfriendly, unyielding system that seems to be in place only for the financially abled to benefit from.'
She hopes that by speaking out about her experience of wife to carer it may resonate with someone out there feeling just as lonely, fraught and frustrated with the care world as she is.
It’s been 8 years, 10 months and 22 days since it happened. This is the first thought in my head as I press the snooze button on my phone – not actually to snooze, but instead to allow time to place my hand on my heart and find 5 things I am grateful for, and also to take a few minutes to thank myself for doing well.
Some days I believe that I am; others, I don’t. But I do accept where I am on the ‘don’t’ days. Although it came at a cost, this habit is one that keeps me grounded, rooted in an appreciation for the beauty in my life.
We made the move to France in 2006 after I couldn’t deny Alex his dream any longer. So, with a 7-week-old and 2 toddlers, a dog, a cat, a cot and 3 suitcases (and a kettle – that would have been a deal breaker!), we set off on a 3-million-hour journey with a flatulent dog, a cat that wouldn’t stop mewing, and children demanding, ‘but I DESPEWATELY need a wee-wee this time’ toilet-stops every 8 minutes.
Approximately 1,074 cucumber sticks, 75 soft-cheese triangles, 42 baguettes, 12 cut-up apples, several soggy biscuits, an inevitable accident clean-up, and many, many brink-of-divorce, silly-o’clock conversations later, we arrived at a house in the middle of nowhere, with no heating, no hot water, in a country we didn’t speak the language of. Our paradise. Discovering I had left my suitcase with ALL my clothes back in England, we wondered if we had made a big mistake. Then I remembered something – I have a kettle! I have a kettle! And we are living the dream.
Just 48 hours after our first date, Alex proposed. I said yes! He was my fairy tale, my happily-ever-after, my soulmate, The One. We did everything together and I couldn’t imagine life without him. Our 4 kids were a force to be reckoned with – beautiful creatures with a contagious joie-de-vivre. They completed our family dream.
As a dad, Alex was invincible, present, the adventurer. He wrapped them and me up in such a vast amount of love that we all felt utterly held by him; nothing would ever happen to us with him around.
Alex had played rugby at a good level in his teens. So, aged 32, fit and training to be a personal fitness instructor, the decision to re-join rugby seemed appropriate. The night he went to his first training session, I was getting the kids ready for bed – bubbles and warm milk, soft voice to try and encourage the fact their screams are now inappropriate! Splashing then scrunched in towels, tears and tiredness, yawns, the kids giggle as they hide under their sheets as Alex came up the stairs to read stories. Warm, snuggled, smelling of innocence and softness, the kids were going to jump out at their dad to surprise him. As he pushed the door open and their muffled giggles became audible, he did the whole, “Oh no, I was going to read a story to these 4 children I was told were up here in their beds. Oh, well, never…” “BOO!” As he feigned terror, they fell about laughing, and as he settled them down and read to them – I watched from the door – my heart was full.
He cycled off that night to his first training session in over 12 years. He didn’t come home the same man. That night, I lost my husband, the children lost their dad, we all lost the person we once knew. We were brutally flung into a new existence. No guidebook, no map, no landmarks, no one to turn to. I was on my own and I was terrified.
I became a carer for my husband and a single mum overnight. I lost my soul mate and best friend. I lost the man who was supposed to always protect me, be next to me, walk alongside me. Nothing could alleviate my overwhelming, gut-wrenching sorrow and loneliness.
Alex, my husband, suffered a severe traumatic brain injury on 4th October 2011 playing rugby that evening. After ‘waking’ from a 5-month coma, the prognosis was bleak – blind, unable to speak, eat, walk or do anything for himself again. Life went from living our dream in the south of France – growing veg, chasing chickens/ducks/cats/dogs/small children out of the small French cottage we lived in – to shattered lives, dragging my and my children’s broken hearts back to England.
Suddenly becoming a carer affects every area of your life. The shock and the trauma from the accident wreaked havoc on my emotional and mental well-being – which in turn devastated my physical state. On top of this, I was trying to raise my children, protect them, comfort their loss and grief and deal with my own. The system was unyielding; I was pushed aside and had to shout louder than I believed possible, only to remain unheard by the authorities in place who were supposedly there to assist my husband. I spent so long shouting for him, battling for him, that I lost myself. I forgot myself. I soon realised that being thrown unintentionally – and without warning – into life as a personal carer meant enormous self-neglect and breaking oneself to help the person you are advocating and caring for. We are forgotten. We are unheard; we are neglected, and we are challenged for speaking up.
Although I choose to stay by my husband’s side, I did not choose to be a carer; I’d had no training, no help, and I have navigated this whole journey through sheer grit and determination. Becoming a carer overnight in such a way is unfamiliar and unfriendly territory. I have hated, resented and loved the last almost 9 years it’s now been. The main difficulty is the fact that although I love my husband, our relationship has inevitably changed irreparably. I have learnt to love him in a new way. I have been his constant and have always fought for what I have felt is best for him. I am not alone in these battles; any carer in my position faces these.
I despise the way the system seems to be in place for the financially able to recover. I know how much further on Alex would be had we been in a financial position to provide him with everything he should have the right to: regular hydrotherapy, physiotherapy, intensive rehab, as a few examples. But I cannot change that. I hope that maybe by speaking out about my experience of wife to carer it may resonate with someone out there feeling just as lonely, fraught and frustrated with the care world as I am.
I cannot say that it gets easier, but I can definitely assure you that you will become stronger. I salute all the other carers out there – whatever your story. Well done!
Are you caring for someone with a brain injury? Have you had any similar experiences to Tamsyn? Please join our community – this is an opportunity for carers to share experiences and think about how the changes in your lives may be impacting on you and on your life.
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