A number of carers have contacted Carers Support with their stories and wish to remain anonymous.
Kath (not her real name) is a blogger and writes often about caring as well as other things. You can find her blog at http://kathrella.com/
I have this wonderful knack of not facing or accepting reality until there’s no other choice. When my dad had an incurable brain tumour, somehow I still held onto a lingering hope that all would turn out well in the end. That hope only died when he did, in front of me, and I was still shocked as if that shouldn’t have happened.
So it really should not have been the surprise that it was when I found out I had to become a carer. I was already a carer; I just hadn’t acknowledged that fact yet. My mother had started to struggle doing day to day tasks. It got to the point where I had to come home during my lunch break from work to make sure she’d had something to eat and drink. She was adamant that everything was alright and that she didn’t need to see a doctor.
“Our Mary had this back in ‘86” she’d say, as she dismissed my concerns.
I was still an immature kid in my late teens. I wasn’t about to argue with my mother, so I accepted her assertion all was well and continued to help out where I could. In a way, I adopted that same level of wilful ignorance I’d embraced during my dad’s final few months. I should have known better. My mum’s the stubborn type who would dismiss a broken leg so as not to cause a fuss.
One time when I came home, I found my mum sprawled out on the floor at the bottom of the stairs. She was conscious but unable to get up. This time I finally took control. Despite her protestations, she went to the hospital and the rest, as they say, was history. She had a degenerative condition. It can be managed but not cured. She would and will only get worse.
I’m not the best at dealing with the unknown. As anyone who has ever had the misfortune of going on holiday with me will attest to, I will ensure that every little detail about our trip is planned. We’ll be at the airport long before we need to be, because in a fit of rampant-paranoia, I’ll have predicted delays. I’ll have worked out everything we need to know about visiting the sights, right down to the bus times. I’m a bit of a pain like that. I like order to things, even if that order appears to others to be somewhat chaotic.
“Nobody ever tells you what you need to know about being a carer until you are one.”
This I didn’t expect. Nobody ever tells you what you need to know about being a carer until you are one. It’s bonkers when you think about it. There’s millions of us now! I don’t know what I expect, exactly, but there should be something given that many people will eventually become carers through circumstances beyond their control.
Nothing really scares me as much as something I go into blindly. I was petrified. And fear, for me, breeds anger and resentment, both towards myself and my mother.
So there’s me – an immature, often-selfish near-twenty-year-old suffering with depression with no real-life experience suddenly becoming the carer for her mother, with absolutely no idea about anything. Support? Benefits? I didn’t have a clue.
“I had no money. I had no life. I basically sat around until mum needed something, mindlessly wasting my mind away on Google.”
My early days as a carer were spent looking after mum and not really knowing what else to do with myself. My social circle started to dwindle since I was terrified of leaving mum in case she had another accident. I had no money. I had no life. I basically sat around until mum needed something, mindlessly wasting my mind away on Google. I put on weight, I stopped caring about my appearance because what was the point? I was in a pretty dark place.
It wasn’t long before I was at the doctor myself, pouring my heart out about how I couldn’t do this! I could barely look after myself. I was struggling with so much inside that I probably should not have ever been put in charge of someone else’s wellbeing.
What was really hurting me though was how much of an awful person and a failure I felt. Here’s me whining like a puppy about how stressed I am, while my mum’s been given some life-changing news herself. She brought me up, she changed my nappies, fixed up my various cuts, comforted me when I was crying, tried her best to make my life a good one. And for all that unconditional love, I reward her by sitting in a GP’s surgery with a woe-is-me tale about how I wish I would go to sleep and never wake up again because weak little me couldn’t cope with an unexpected change to my life.
Suffice to say, I was quickly given a psych-referral.
That turned out to be a blessing. My psychologist knew a little bit about the carer-malarkey, and helped me discover what support was available to me and how to access it. The rules have changed since then, and in parts for the better, but thanks to him I no longer felt quite as alone.
And he helped me with some other things too, giving me a place to vent my frustrations, express my concerns and generally just release the pressure in my mind so it didn’t suddenly go pop.
Without that release, I think I probably would have exploded in a fireball of anxiety.
Around twelve years on, I still struggle from time-to-time and I still feel like there’s so much to learn; so many things I don’t quite get. I can, however, say I’ve grown. I know now that the anxiety I experienced back then, and sometimes still do, is nothing to punish oneself for. It’s natural, it’s human. Frustration is normal. In fact, virtually all of those negative feelings are normal.
I’d be fibbing if I claimed everything was easy now. It’s still tough. I still experience feelings of loneliness, isolation, and yes, depression. My sleep pattern is all over the place as I’ve become trained to wake at the slightest noise in case mum needs something. It’s not uncommon to find me in a somewhat sleep-deprived cranky mood but even that I now manage much better than before.
Sometimes I feel like my mum deserves a better carer than me and there are times I waste hours at a time retreating to a fantasy-land in my head where things are a bit different. I still punish myself for things I have no control over, and I still get stressed over the smallest things. But I try as hard as I can to provide a quality of life for both myself and my mum.
What’s really helped me was learning and accepting that I’m not just a carer. I stopped defining myself by that role and started doing some things for me. It’s far too easy to pour everything you’ve got into caring and forget that you deserve a life too. If you never do anything for yourself, then you start to feel lost and unfulfilled. I don’t always use my free time productively but I try and treasure it nonetheless.
“I’ve become a better person, and I’m a stronger person mentally and emotionally.”
Though it’s taken some time to accept it, I can now look at my experiences of caring as positives. I’ve become a better person, and I’m a stronger person mentally and emotionally. For the biggest part of my adult life, I suppressed my sexuality. Now I’m out to my mother and my best friend is now my girlfriend too! I don’t know if I could have done that had I not been forced to become a stronger person.
I’ve also found that I can set myself goals now, and work through them. It’s all part of giving me a sense of purpose beyond caring because it makes me feel good about myself. I also believe this makes me a better carer. I always regretted not going to university, and now thanks to The Open University, I have a number of qualifications! I decided I wanted a blog, despite having no idea what to put on there, and now I have that too! Even little things like finishing video games oddly give me a sense of reward, and an escape from the day-to-day.
Currently, I’m working on writing and publishing a fantasy novel. It’s slow-going at times, but I’ll get there!
Caring was a change in circumstance that I was ill-prepared for. If you take anything from these ramblings, let it be that it’s not wrong to feel down as a carer, and it most certainly isn’t wrong to ask for support. I’m actually quite proud of my own accomplishments over the past few years, and the catalyst for all of them was when I walked into a GP’s office and said, quite tearfully, “Help me.”