I’ve often thought about the idea of being cared-for as I get older. I already use a personal assistant to help me out with all sorts of things both at home and out, and also to allow me to be able to parent my own children. As bleak as it may sound, assuming no cure for CMT is found within my lifetime (fairly unlikely I would say), then I can’t see a time when I won’t need a PA. But what about the thought of my own children caring for me as they get older? This idea gives me a particularly angry and frustrated feeling right in my gut. Worse than this, for me, is the idea that people will ASSUME at some point that my children will be young carers for a part of their adolescence and possibly adult life.
Now, I need to say here, that my views on child carers are purely my own, born out of my own experience of being a disabled person and then of course a disabled mum. Many people may have their own views on whether they think being a young carer is a fair and desirable way to live, but I’d hazard a guess at the majority of the population not really having any personal experience of this. Other people’s lifestyles and choices are not my concern here.
My concern is my own children, currently aged four, and 16 months respectively. Are they going to be pressured to thinking that they have to care for me when they’re of a capable age? Will they think they’ll have to help me get dressed or put my hair up for me before they can go out and ride their bikes? At what point does me asking Amélie to pass me something that I can’t reach from the floor, become her being ‘mummy’s carer’. It fills me with dread, confusion, nerves, anxiety, a whole load of other emotions and I wish it didn’t. What is worse is that I’m beginning to feel like I’m already asking my daughter to do things for me that other kids wouldn’t need to do for their mums. For instance, the four of us went swimming recently and whilst we were crammed into a pitiful excuse for an accessible changing room (think ‘disabled toilet’, and then…just stop thinking, because that’s all it was), I asked Amélie to pull my socks off for me. She was changed already and had been swinging off the grab-rails so I thought, a bit like a delinquent terrier, she needs a job to occupy her for the next few minutes. So did that constitute the start of her career as a young carer? Does she need to go on manual-handling training?
I forget where or when exactly it happened, but I remember once dropping my phone in a supermarket or somewhere, when Amélie was about two years old. I gestured to the floor and said “can you get mummy’s phone for me please?”, and at that moment a lady walked past as the cute little toddler passed the unidentified companion in a wheelchair her mobile phone, and said “oh that’s lovely, she can be your carer when she grows up”. My first reaction was to politely smile and return the jovial laughter but inside I felt my body tense up and I wanted to scream “no f*cking way, absolutely not”. I didn’t have children to provide myself with reliable live-in carers.
Children are annoyingly selfish anyway. Not a good trait in a personal assistant.
I guess the thought of your kids having to care for you in your old age when they themselves are past middle-age, is an entirely different thing. I think it’s kind of a given that as your parents reach their final years you make the decision to help them out yourselves in order that they wouldn’t then need to reside in a care-home. People kind of expect that to happen, and it is okay. But when a person, like me, has disabilities which start much, much earlier in life, it just seems unfair and unjust for people to assume your kids won’t even reach adulthood without having been a carer for a portion of their childhood. I already get unnecessarily worried that when Adult Social Care (shudder) conducts their annual review of my care package (yuck) they’ll see my children as young and capable teenagers as an easy way out of providing a monetary solution for me to pay for my own care. My partner is my carer part of the time. My PA provides care at other times. I don’t want anyone to ever tell me that “wouldn’t it just be easier for the girls to help you?”. No it wouldn’t be easier. It wouldn’t be easier on anyone.
I want my daughters to just be my daughters. Not mummy’s carer. Not a young-carer who might feature in a charity campaign watched by thousands of people feeling sorry for their lack of freedom and childhood, not forgetting the overwhelming sense of responsibility. I don’t want those roles to be reversed. I am their Mummy and their carer. They are my babies
Until I am old and senile, in which case I will call them Deirdre and John.