As a child, one of the great things you look forward to do when you grow up is to be able to stay up late and go to bed when you want to. Granted, you later find out, it is not something you want to do all the time (what with work, and the later realisation when you get into your 30s that a cozy night in is far more appreciated than a boozy night out!). But you always have that choice – after all, you are an adult!
However, what I starkly realised as a disabled young adult moving into my own home a few years after graduating university, is that when you rely on the support of other people to physically get into bed on a night, this ultimate choice isn’t always possible.
Since I moved into my own home in April 2012, I’ve relied on the support of carers from an agency to help me with my personal care. I’ve attempted to go down the route of employing PAs (like many younger disabled people tend to do), but its never worked out for me – mainly due to my location (Harrogate is to a certain degree a pretty middle class area and not really close to universities where students could be ideal applicants) and the fact that overall I’m an independent person who likes to do as much for myself as possible (why should I employ someone to do things for me, when I’d get more enjoyment and fulfilment through doing it myself with the use of physical adaptions?). Therefore it was really difficult to find more than one person who’d be willing to work for short and varied amounts of time and who lived locally.
Using a care agency does have its positives. Generally I know that if someone phones in sick, they would easily be able to find someone to cover my support. However there are plenty of areas in which I feel the care agency industry can improve, and one of the big sticking points I feel is the lack of overnight support.
Currently, in the Harrogate area, all home care agencies appear to run from 7am to 10pm. If you are assessed by social care as needing regular ongoing support during the night, then there is the option of having a carer stay overnight. But if like me you don’t need support throughout the night and will only occassionally need help to go to the toilet or reposition yourself in bed if you get cramp, then you are pretty much screwed!
My bed time routine I find can be nearly as stressful as getting ready for work on a morning, or rushing to a medical appointment. I have half an hour once the carer has arrived for my call to go to the toilet, get dressed, get into bed and get comfortable. That may sound a reasonable amount of time for some of you, but if you end up having a carer supporting you who hasn’t done this call before (so you spend half the time explaining what needs doing, where everything is and how to do it), or you’ve had a bit of a bad day and you feel particularly stressed and anxious, then half an hour flies by in no time at all. I also have to make sure that I have done everything else that I can do myself (brush teeth, toilet my dog, tidy the kitchen sink) before the carer arrives, because once I’m in bed that’s it – I’m stuck in my own bed unable to get out until a carer arrives the next morning to get me up again.
The fact that I am unable to stay up after 10pm and once I’m in bed I have no way of getting help other than relying on the generosity of my family and friends, really adds to the stress I feel on a night time and in my lowest moments I even question whether I truly lead an independent adult life at all. To make matters worse, there have been times when I’ve had carers rush me or constantly remind me how much time I have left of the call. When you are extremely aware that this time is the last chance you will have to use the toilet for about 9 hours and you maybe last went to the toilet 3-4 hours ago, it is incredibly difficult to try and relax enough so you can “pee on demand”, let alone when you have a particularly bossy, uncompassionate carer reminding you of this every 5 minutes!
If I am unable to go to the toilet (often due to feeling stressed and anxious, or lack of drinking anything because I’m worried I will drink too much and need to go in the night) and desperately need it in the middle of the night, then my only options are – 1. Ring my Dad, or my Auntie (or any family member near enough to help come and help me out of bed and onto the loo); or 2. Forget all your rights to human dignity and wet yourself in an adult nappy, then go to sleep in the knowledge of this until the carers can clean you up in the morning(!).
Both of these options are terrible and I hate having to do either of them. But thanks to cuts within social care and North Yorkshire County Council removing their overnight support service a few years ago, these are the only “choices” I have. I hate having to ask my Dad to come round and help me, because he has more than likely had a tiring, working day and it ultimately affects our natural relationship as adult Father and Daughter when he still has to help me with things most other parents would have stopped doing for their children decades ago. This guilt also feeds into the stress I feel wanting to go to the toilet before bed, which again is more likely to lead to me needing to get up in the night. A horrible double edged sword.
Going to bed should be a peaceful, relaxing time – giving your body and mind a chance to wind down after a long day. Being told, implicitly or not, ‘you have to go to bed by *this time*’ not only takes away your right to choice and independence and keeps you firmly in that childlike, subordinate state; it increases stress, anxiety and may ultimately lead you to feeling like your life is pointless if you can’t be given the basic freedom of choice and dignity that the vast majority of non disabled people can easily afford.
The thought that I may never get to completely decide when I want to go to bed each night fills me with dread. Knowing my luck, things will finally change when I’m 80 – only then I’ll be too tired to stay up late and happy enough to sleep by lunchtime!