Georgina Lawton | Contributing Writer | Saturday, 28 February 2015

Things You Only Know When You Care For A Sick Parent

The Debrief: We spoke to girls whose parents have MS, Cancer and HIV to see what it's really like

Almost a year ago, my integral structures of ‘normal’ were obliterated when my dad was diagnosed with a mysterious and ubiquitous form of cancer.  After complaining of back pain for months, we learned that it had originated (possibly) from the pancreas, and had spread.

No matter how many times you’ve seen similar scenes unfold on television and expressed empathy for the main character in a kind of ‘aw that’s so sad, what’s on next’ kind of way, or read the phrase ‘I never thought it would happen to me’ nothing ACTUALLY prepares you or your family for the shipwreck which is cancer. Over the past few months things have see-sawed between bearable and nightmarish. Every stray eyelash is silent wish for my Dad to be cured. And I don’t know what’s going to happen. However, I do know I wouldn’t be coping half as well were I not surrounded by friends who are going through similarly fucked-up situations. I met Emilia and Amy at school and we’ve had nine years of solid, drama-free friendship since school; shared holidays, shared beds and never shared boys. At 15 I learned that both their mothers suffer from multiple sclerosis (MS) a chronic autoimmune disease which affects movement and the nervous system. Then, at university, I met Rachel, a girl with whom I could so easily create the kind of side-splitting belly-laughter that makes onlookers both nervous and envious. Two years ago at a house party, she told me her mum had HIV.

Needless to say, my mates have a fundamental insight into what it means to care for a sick parent, and we're not alone – last year, the number of people in the UK caring for sick family members rose by 11% and it's estimated that, by 2037, there'll be 9 million people looking after those they love, unpaid. And there's a gender divide, too: last year's CarersUK census showed that women make up 73% of the people receiving Carer's Allowance for caring 35 hours or more a week. Thankfully, it's a joint effort when it comes to looking after dad, and we're by no means our parents' carers, but whether you're alone and struggling, or you've got people around you, it can a psychological minefield. Emilia, Amy and Rachel's support has helped me come to terms with what’s happening in my own life when other friends, who just don't understand, have let me down. Whenever I need to vent my feelings of insurmountable rage, frustration and upset, these girls are there. We all still live with our parents in London and we’re all familiar with the back-of-the-mind guilt that surfaces every time we plan a night out, or a holiday or a drink with friends. Granted, it’s a bond we all wish we didn’t share but one that has made us realise how important family really is.

I spoke to them about their individual struggles, and the struggles of their parents (as well as revealing some of my own), to hopefully shed some light on something that rarely gets talked about – what it's really like to look after a sick parent.

First up, is me - and the things I've learned from my dad, who has cancer

Your friends are scared of the C word

After my dad’s diagnosis I was angry at everything and everyone. That anger increased as people backed away - they were too afraid to ask how things at home were, and I was too volatile. If it’s one thing you want during a crisis it’s to feel like you’re not alone, and after several heart-to-hearts, tantrums, hugs and silences, I’ve realised that people do care but not everyone has the emotional capacity to express this. In a sad sort of way, I’ve come to expect less from certain people, but I know who I can truly rely on.

Freelancing =  blessing and a curse

Time with my Dad is precious and since graduating last year, I’ve been able to be around a lot whilst interning and freelancing. A freelancer’s life = snacks, PJ’s and a laptop which I can all do whilst keeping dad company. Being at home, I’ve had some amazing conversations with my mum and dad and talked about some things that many people will never discuss with their parents. I’ve also had some of the worst, most heart-breaking arguments due to the stress of all of us living under one roof. If I was at university or working away from home, though, I wouldn’t have any of these memories, so I wouldn’t change a thing.

You know what a commode is

I know as long as I live, I’ll never forget the image of my Dad’s bare, hairy, freckled arse coming into full view and blocking out The X-Factor as me and my mum sit down to tuck into a Chinese. ‘Sorry to put you off your food’ my Dad will chuckle as he settles himself into the mini portable toilet (commode) in the front room when he can’t make it to the upstairs bathroom. We’re so used to it now, I forget that other people don’t shit in their front rooms.

Both Emilia and Amy's mother's have MS

No, my mum’s not drunk 

Emilia and Amy’s Mum’s both have difficulty walking as a result of their condition. Emilia’s mum has a constant limp, whereas Amy’s mum has episodes where her MS will flare up and cause her a lot of pain. In both cases, my friends have recalled times where people have just flat-out asked why their mums were having difficulty walking. Tactless doesn’t even come close. Emilia said: ‘Sometimes people will ask inappropriate questions if they notice that my mum has difficulty walking. Sometimes she gets a bit wobbly and people will even ask her if she’s drunk, or make a joke.  It happens a lot!’ 

Every trip = major planning

A condition like MS requires forthright planning for moving around. Emilia said: ‘If my mum wants to go out, taxis, distance from taxi to destination, stairs, lifts, extra space, all have to be taken into account. Even a trip to the newsagent down the road is a big deal.’ Amy added: ‘When my mum’s driving, sometimes I sit next to her like a driving instructor. I have to be on standby in the car in case her leg gives way and she can't drive further.’

You know about benefits

Er yeah, the topic of benefits doesn’t just make good TV, it’s actually important to a lot of people. Amy told me: ‘Mum applied for a Blue Badge and had to undergo an assessment for it. Now she can park a lot easier in disabled spaces which is obviously important.’ Emilia agreed: ‘When mum’s MS began to worsen, she was able to work some days from home. Public transport was now out of the question and so a return taxi was paid for by a scheme from the government. More people should know about the help they can get.’

Rachel's mum has HIV

You remember not sharing cutlery as a kid

‘I remember when I was younger, before I knew, noticing that my mum would not let me drink from the same cup as her anymore, or use the same cutlery. This was totally unnecessary because you can’t contract the virus through saliva, or kissing or anything like that. But she clearly felt like she had to protect us from her.’

You know about the stigma attached to HIV

Rachel’s Mum was infected with HIV by her father, who was unfaithful. She says: ‘The worse part about knowing my mum has HIV is knowing how she got it - from my dad. He didn’t infect her on purpose, but he was unfaithful and even slept with hookers. My mum found out by accident. She was pregnant with my little sister and went for a check-up and found out she had HIV. I hate that my mum feels like she has something dirty or wrong. She hasn’t told any of her friends or co-workers because she worries they will treat her differently.’

Racism and HIV go hand-in-hand

‘Because we are African, I feel ignorant people will somehow be like "ahhh that makes sense" and view it as an African problem, because that’s the image we see of HIV on the screen. Poor African kids with flies on their mouths being given injections by white charity workers. That stereotype is hurtful, because it adds to the idea that HIV is a dirty disease when in fact it affects people all over the world and they all deserve to be treated with respect.’

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Why It's Never Been More Important To Talk About Disordered Eating

Follow Georgina On Twitter: @georginalawton

Picture: Lukasz Wierzbowski

Tags: Things You Only Know If..., Health