Well. That was interesting. I’ve just been reading a post on facebook that a friend has written about how life has changed for him since he became ill and restricted to bed two years ago. And it’s got me thinking about me and my life. It’s only been a year since I got really ill and things changed for me but, oh boy, what a change.
Sure, I’ve been disabled for years having first been diagnosed with MS way back in 1985 but, apart from becoming a wheelchair user in 1998, I have been able to live a pretty ‘normal’ life throughout. Uni, children, work, making a home, more work, more Uni, same as the rest of my peers. Then it all went pear-shaped, in the form of an infected pressure sore that got me into hospital for a while, and my life started going off in directions that I had never even considered. Suddenly, instead of going out every day, seeing my friends at local cafes and restaurants and being a ‘lady who lunches’ on a regular basis, volunteering every week at an organisation just down the road, living my life to the full, I found myself stuck in a bed in my living room 24/7 with carers coming to look after me three times every day.
I think the invasion of carers has been the hardest thing to come to terms with. That and the enforced inactivity. That’s not something I’m used to and I can’t say I like it very much. It’s so dull a lot of the time, me, my computer, the TV and a bed. I think, if it wasn’t for my computer and my broadband access I’d have gone completely nuts! But having to use carers for everything, that has been so tough. I now have people coming in three times every day to do all the things I used to be able to do for myself. They wash me, dress me, provide me with food, do my laundry, wash up and everything and I don’t think I like it very much. I don’t like losing control over what I do and when I get to do it.
Sure, having someone to do the washing and sweeping and hoovering and general housework is quite nice but fighting the words written in my care plan is not nearly so good. Agency carers don’t do anything that’s not in the care plan so, when I asked one the other day if she could wipe down my bathroom sink with some Cif cleaner and clean the toilet for me she said no because that sort of cleaning is not in my care plan. The problem appears to be the fact that I live with my two adult children so social services expects them to do all the cleaning and not my carers, even though it’s what I used to do myself before I got stuck in bed. I always thought that my carers were there to do the things I couldn’t do myself due to my disability but apparently there are imitations. Having family members living in the same household means they have to do everything, even the things that used to be my job. It doesn’t seem fair. I want to be able to go on being the Mum that I was, doing everything I did before, but I can’t and my carers won’t and I don’t like it. And the privacy thing is bad too. I really don’t enjoy having so many people seeing me naked and touching my body when they wash me and dress me. I wish could still do it myself or, at least, choose who does it but I can’t and it’s soul-destroying.
I don’t like the other restrictions I now have to live with either. I have to plan when I go out so I can sort out carers. Spontaneity has vanished from my life. No more hoping on a bus and going into town when I want to, I have to give my carers notice that I am going out and negotiate how long I get. My final visit of the day is at 6pm and that’s when they come to get me ready for sleep and put me to bed for the night. 6pm bedtime! I feel like I’m a toddler again, not a middle-aged adult. I like going out in the evening and going to see musicals or visiting folk clubs or even, friends, but I can’t do it any more without massive amounts of forward planning. Whatever I want to do, I have to make sure I’m home by 8.30pm because the care agency doesn’t provide carers who work after 9pm. I’m looking to having Direct Payments which will mean Social Services give me money to hire my own carers which will give me so much more control but that is still in the pipeline and has not become a reality as yet.
Essentially, looking back over the past year has been a bit of an eye-opener. So much has changed and I am having to get used to a very different life from the one I had before. It’s a life I never really expected to have. I suppose I might get used to it eventually but that doesn’t mean I like it. I don’t. I just want to be the me I have always been and live my life the way I would like to live it but that, I suspect, that is never going to happen again.