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I don’t want the care. I need it.

I don’t want the care. I need it.

Last night at 9.38pm I was in bed and could hear my husband whispering downstairs to another woman. I had never met her before and she was to spend the night in our house.

I suddenly stopped to think about what an alien scenario this is to most people. To us, it was a bit unusual but nothing too out of the ordinary. She was a relief night carer for our daughter.

Our care package includes three nights of care per week, meaning we get three solid nights of sleep, safe in the knowledge that someone is handling our daughter’s seizures. When this kicked in, at the recommendation of our assessor (I was sceptical as I never thought I’d be able to trust someone else to handle her seizures), our lives changed, our health dramatically improved both mentally and physically, and the pressure eased in a way I could not have imagined.

We are going through a care review at the moment and the feelings I have around this are tough to deal with. I swing from fear (‘what if our care gets taken away?’); to guilt (‘I hate having to ask for this expensive help’ / ‘what if another family needs help and isn’t getting it?’) to frustration (‘I don’t want to have to have carers in my house!’).

That last point I think sums up the ambivalence I feel at needing support.

I was walking home from work the other night and felt like I did not want to go home. I wanted to extend the walk and take the long route. Past the river and among the trees, in the spring sunshine.

It wasn’t just because it was a nicer route, it was because I was tired, and in my home it’s chaotic and noisy and there are lots of people there. By taking the longer route I could enjoy a few extra minutes of peace.

I really like my daughter’s carers, they are some of the nicest people I have ever met. But they are not my family. Sometimes I’d love to be able to go home and shut the door and it’s just us.

Small talk is tiring and I’d been doing it all day in the office. The problem is that if it was just us and we had no carers or family to help us, I’d likely be unable to work, function and quite quickly my husband and I would struggle to cope with the 24/7 care our daughter needs. All of our family’s mental and physical health would suffer. So here we are, between that proverbial rock and a very, very hard place.

I feel gratitude for the care but ultimately I don’t want it. I just need it. When we stop to think about this, in the context of parent carers having to fight for services, it’s quite sobering. Noone is fighting for anything they simply want. It’s a fundamental need. And no one should have to fight for that. 

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
healthcare professionals.

Sharon F

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I'm Sharon, I have a daughter with epilepsy and a severe learning disability. I blog about our livewire life.

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