Category: Uncategorized

Caring has a PR problem

Sep 11th, 2023

I would say that, right? PR and comms is what I do for a living. I’m always spotting messaging and angles of varying quality in the world around me and in the news (a lot of the news is PR but that’s for another blog). There is a lot of messaging and press stories around the issues unpaid carers face so why isn’t it a bigger issue in society? Why does nobody… well…care?

I only discovered I was an unpaid carer until I started reading other carers’ stories. I now talk about my situation openly and the issues around it whenever the opportunity arises. Mentioning it and sharing my story might make others realise that they or someone they know are in a similar situation and seek help. The more I talk about it, the more I realise that non-carers really have no idea of the harsh realities of life as an unpaid carer. And why should they? This is not their lived experience, they have other things to worry about.

Keeping it real

To make communications on any topic effective, it must be relatable. There is a reason this blog is a mix of funny grandma stories and the less funny descriptions of my current situation – I want to make the content relatable to as broad a range of people as possible. I have noticed a trend that the funnier, lighter content is more appreciated by non-carers and the more depressing posts are more read by unpaid carers themselves. Why? Because each group finds something to relate to. My aim is for the non-carers to read a less funny blog after the story of my grandma getting lost in Shanghai to get them to see the reality of life for millions of unpaid carers. The ultimate aim of this blog for me would be for the reader to think about how they can help or what they would do if they ever found themselves in a similar situation.

Fair Warning

Do you have a mother? Father? Brother? Sister? Son? Daughter? Aunt? Friend?

If the answer to any of the above is ‘yes’ then I have news for you; you’re a soon-to-be unpaid carer. You’re blissfully unaware of it yet, but the time will come, either through age or illness, that you will join the ranks of millions across the UK. Think the system will help or that you can afford private care? Think again. You will likely have to give up your job to care for the ones you love. If you’re a woman, that possibility is even higher. Don’t believe me? Google it. According to research in 2021, 6 million people have given up working altogether to provide care in the UK. And by 2040, one in six workers will balance their job with caring responsibilities. And that is just one example. If those numbers don’t feel real to you, go speak to friends and colleagues, get curious, it won’t be long until you find someone with a hidden unpaid carer story.

There are only two types of people in the UK (and the world, I’d venture to say) unpaid carers and soon-to-be-unpaid-carers. My mission is to speak to the latter group to get them to help us get the government’s attention to create tangible change. For all of us.

Clear action

We need to create content that resonates outside of the unpaid carers echo chamber, we know how tough it is. How do we get others to relate to our situation enough to help us get actionable change? This is the question I’m trying to answer and I would love to hear thoughts and ideas. What would make people who aren’t yet unpaid carers, pay attention? What would make our issues relatable to them? Via what medium? Please your add thoughts and ideas in the comments section.

I’d also be grateful for tips on how to persuade a very stubborn 98 year old to wear incontinence pads more often, but that’s neither here nor there.
Interview with Katy Styles, founder of the We Care Campaign, the Jack Russell of carers organisations

Sep 7th, 2023

As I was on my Saturday morning hike last weekend, I was thinking about what more could be done to help unpaid carers. I had been following a few conversations on that topic on social media and was coming up empty on ways to move the conversation forward. So I thought I’d ask an expert. A few days later, I was on a zoom call with Katy Styles, the founder of the We Care Campaign and all-round campaigning powerhouse. I learnt so much from our discussion, here is some of it… with more to come.

– Tell me about yourself, how would you introduce yourself at a dinner party?

Born into caring, I’ve been a carer since age 5, caring for various family members. But it wasn’t until my husband left work due to MND (Motor Neurone Disease), nine years ago that I officially identified as a carer. Today, I juggle care for my husband, my mum who has had strokes, and my mother-in-law. I’m also a former geography teacher and an iced coffee addict.

– You are the founder of the We Care Campaign- can you tell us more about the organisation?

Five years ago, I founded We Care. Frustrated by the lack of attention unpaid carers received, I started a petition when the UK Government’s National Carers Strategy was brushed aside. It was clear that carers wanted to campaign but lacked guidance and energy. So, We Care was born, starting with a digital community on a laptop on my kitchen table via a Google Hangout call. No Zoom then! We have since grown to thousands of followers across the UK. Because of our size, we can be responsive and deal with tough topics other carer charities shy away from, we’re feisty; like a Jack Russell terrier.

– What are the campaign’s main objectives?

Our mission is crystal clear: amplify carers’ voices to UK decision-makers. As for me, campaigning isn’t as tough as it seems; it’s about building relationships and effective communication. I was told carers wouldn’t want to campaign but I found that is not true, they just need a bit of help and direction. My aim has always been to get more carers to do what I do, even if it is going to see their MP for the first time, that’s a huge win.

– In your experience, what are the biggest issues unpaid carers face?

Carers face pressing challenges today. The cost of living increases, impacting our finances as full-time caregivers. There’s a dire shortage of social care, breaks, and respite. Worst of all, many don’t grasp the vital role we play in society, upholding its very infrastructure.

– How do you get the government to engage with you to create actionable change?

We raise carers’ voices in front of decision-makers, online and in person. We infuse lived experiences into our submissions, putting real stories alongside cold statistics. Petitions drive debates, and we connect carers with media interviews to ensure our issues stay in the spotlight.

Our award-winning film, “The Ones Who Care,” has touched 80,000 hearts, but we need more to see it. Hospitals, carer organisations, councils, and charities use it for training, providing a glimpse into caregivers’ world.

– What is the biggest policy change you would like to see happen?

My dream? A National Carers Strategy that values us. No more postcode lotteries; a unified approach is needed, one that supports carers, addresses finances, and holds someone accountable for our issues. The Care Act needs an overhaul; too few get carers’ assessments.

– Any big events coming up for the We Care Campaign?

In October, we’re bringing carers’ issues to the Senedd (the Welsh Parliament), in a unique way—on dusters. Craftivism unites us; carers stitch their concerns and send them in. This project forms a tight-knit online community, offering companionship to many isolated carers. I can’t wait to see our messages hanging in the Senedd for MSPs (members of the Welsh Parliament) to ponder.

– What would your message be to society at large about unpaid carers?

Carers are society’s backbone, supporting the NHS and Social Care systems. We don’t need applause or empty words; we need tangible actions. The time for recognition is now.

Huge thanks to Katy for her time and wisdom, please visit the We Care Campaign’s website to find out how to support: https://wecarecampaign.org.uk/
You’ve got a friend

Sep 4th, 2023

Something heartwarming happened on Friday. As I was dealing with my overflowing work inbox, there was a knock at the door. A delivery man handed me a big package that was addressed to me. With no idea what it could be, I went into the living room to share the excitement with grandma. She loves opening up packages and has a surprisingly strong grip – no package has defeated her yet. We both tore off the tape and opened the cardboard box to find a beautiful book inside from my photographer friend with a note that said: ‘ I hope you enjoy this virtual trip around the world together!‘. Grandma declared it was wonderful and will be spending many happy hours with her special light and magnifying glass going through the stunning photographs from his many adventures.

I’m really touched by that gift, and it makes me realise how lucky I am to have supportive friends. I have friends all over the world and I feel privileged to be part of their lives.

My photographer friend is kind, very wise, a genius (he will roll his eyes when he reads that bit), and I have been living vicariously through him ever since he started travelling the world, capturing the beauty of our planet. He (sort of) accepts that I don’t have instagram and texts me unbelievable shots from far flung locations that make me want to hop on a plane and join him.

I have a friend who sometimes calls me at night – she lives in the future in Australia – to check in on me and we inevitably end up having a mini board meeting about the business she runs in Brisbane. I love it, it temporarily takes me out of my current situation and gets my brain engaged on something else than stress and work. We also laugh a lot and it is always the highlight of my week.

A friend of mine is an impeccable human being and that I love to bits. Our relationship was cemented when we worked together and during busy periods, I would call her several times a day. She is so supportive and always makes time to see me when I come to London despite her busy life. She is also a great cook and we have great foodie WhatsApp chats.

I’m in touch with my Italian friend most days, we met at university in the UK. We see each other rarely, but when we caught up in Manchester a few weeks ago, we picked up right where we left off and it was wonderful. I was relieved to find that our friendship was not diminished by our mostly virtual interactions.

Closer to home, I have made my newest friend. After seeing her many times on my hikes on the moors, her big bullmastiff dogs decided we should introduce ourselves and came to see me for slobbery cuddles which led to us chatting, and we now regularly walk together on weekends. I love her company, she is a funny, accomplished woman that I’m learning a lot from. We end our walks with a coffee and a chat in her kitchen before I have to go back to my duties and cook lunch. I always leave her house with a smile on my face and a spring in my step (particularly helpful as I have to hike back down to the village).

The friend list goes on, I don’t know what I would do or how I would cope without their support and our little rituals. I look forward to the weekly ‘TGIF’ text from a friend I have known since high school when I lived in France (and share a mutual love of brunch with), or the long ‘walk and talk’ phone conversations with my friend while we’re both hiking- her with her dog in Kent; and me in the Lancashire countryside. The long virtual conversations with former colleagues turned friends in the UK and in South Africa are a complete joy and we always chat for far too long, only hanging up when we absolutely have to.

To all my friends – thank you. I know we never see each other, and I’m always saying how tired I am. I’m not the best friend and we mostly rely on texting as our means of communication; but please know that I am so grateful that you have chosen to keep me as part of your lives despite the distance. You’re all my carers and I wouldn’t be able to cope without you. Also, please don’t be offended if I didn’t specifically shout you out, it would have been a long blog!

PS: if you’re curious, take a look at my friend’s photos here: https://theflore.com/
Missed life flight

Aug 31st, 2023

My parents have been trying to leave grandma’s house since last Friday, but their flights keep getting cancelled. Once courtesy of EasyJet’s endless incompetence, and the other due to the UK’s air traffic control system melting down over the bank holiday weekend.

As I was redoing their beds for the second time, it struck me that the feelings we experience when our flights get cancelled are a lot like those of being an unpaid carer. Except you don’t get to have a nice latte from Pret at the airport; and there is no airport; and no aeroplane; but you do miss out on your life’s destination.

If you’re still following this tortured metaphor, the frustration of not going where you wanted to is akin to the frustration unpaid carers feel everyday when they think about the lives they want to lead, but aren’t. We sadly also don’t get a refund or a free rebooking for another life. And finding information or any compensation for our work is even more difficult than raising an expenses claim with a low cost airline.

My mum was frustrated she had to miss work, and my father couldn’t have made it any clearer that he didn’t want to be stuck with his mother anymore. Join the club, mate.

There is also that groundhog day feeling when you have to stay longer than planned somewhere that is not ‘home’; my mum was obviously bored and kept asking me what she was going to do (window shopping trips to Manchester seem to have sorted that concern out). ‘Welcome to my life.’ I thought. I work too much to cope with living the same day on repeat – until something bad happens and then all bets are off.

We also don’t get to experience pre-travel excitement or the warm anticipatory feeling of going home. We are stuck with no hope of a flight out when everyone is jetting off to live a life we can only dream of. I feel bad for all the travellers stuck in places they don’t want to be in and hope they manage to get home safe and sound. For those who aren’t carers reading this, please try this thought experiment: remember a time your flight was delayed or cancelled, recall the frustration you felt at not being where you wanted to be; at the lack of information; at not being listened to; and the worry of the extra expenses incurred. Try to sit with those feelings for 5 minutes.

It’s uncomfortable right?

Now amplify those worries by 10 and imagine living with those feelings everyday; that is what it feels like to be an unpaid carer.

At any rate, I hope my parents do manage to fly out as planned this week but I won’t be turning their beds down until they’re safely in the air this time.
Eye of the Grandma

Aug 28th, 2023

‘Oooh! Careful!’ I said as I grabbed the shopping cart.

‘I didn’t see that! It wasn’t there last time.’ Said grandma, with a chuckle.

I smiled and turned back to the T-shirt I was looking at, it was pink and had ‘libre comme l’air’ (‘Free as a bird’ in English) in black letters on the front. I was thinking of buying it for the irony alone. While I was thinking if it was worth the £20, I had let go of the shopping cart, grandma had kept walking with it and bumped into the mannequin next to me. She likes to push the cart and I walk in front of it guiding where we’re going – the cart acts as a walker for grandma and I’m her eyes. Her eyesight has significantly deteriorated over the last 3 years so our little shopping cart routine is a must to ensure M&S’s mannequins and displays remain intact.

Grandma is, for all intent and purposes, as blind as a 98-year-old bat. Macular degeneration has slowly robbed her of her sight and she is understandably finding it tough to come to terms with. I often find her crying in the living room on days she has tired to go through her bank statement on her own. Her magnifying glass and receipts strewn all over the table, her head in her hands. I rush in to cheer her up and help her go through it even if I have a full inbox and I really don’t have time to help her confirm that she did in fact spend £5.50 at the co-op.

We have a semi-regular appointment at the eye clinic to monitor her declining eyesight and very rarely (it has happened twice in 3 years) we see the low vision specialist. I find these appointments particularly heartbreaking as grandma pleads with them for stronger glasses ‘so I can just read’ . The answer is always the same, we’ve done all we can and no pair of glasses will help. This is where my carer instincts kick in and push the specialist with questions on what else we could do. After 40 minutes, we came out with 2 stronger magnifying glasses and some special glasses for TV watching. Grandmas was so delighted, she forgot where she was going and nearly walked into the lift door.

The TV glasses make grandma look like an alien with massive eyes, funny for me and she says she can see what’s happening a little better- a win all round. I also ordered her a large print book from her favourite crime fiction author to see if the new extra strength magnifying glass would work. When the book arrived, grandma’s excitement was palpable. I set her up at the dining room table with a makeshift stand for the book to rest on, shone the special bright light lamp she never uses on the first page and steadied grandma’s hand to hover with the magnifying glass over the title.

‘What can you see?’ I asked, praying she could read the large print.

‘This…is…the… night…they…come…for…you!‘ She read, haltingly.

‘Excellent!‘ I said ‘Right, let’s start the first chapter.’

I turned the page and positioned grandma’s hand over the beginning of the first paragraph. After a few seconds of her eyes adjusting, she very slowly began to read the sentence. I had time to make a cup of coffee listening to her slowly read the words aloud of the first paragraph. Smiling to myself as this was the first time she had read something since 2020. She had to stop after the first page because her eyes hurt, but we both felt it was a success and that the book will last her till Christmas; giving me plenty of time to hunt for another one.
Daddy issues

Aug 24th, 2023

Family alienation when you’re an unpaid carer. Let’s talk about it.

Caring is often a lonely and isolating experience, you don’t have time to do much else and you’re exhausted all the time so you naturally withdraw into yourself and tend to isolate as a way to cope. Or maybe that’s just me.

When it comes to family relations, caring can cause a real rift. On the side of the person doing the caring, there is often frustration or resentment at other family members that could help but don’t. On the non-carer side; there is often a lack of appreciation of just how hard the job is and therefore dismissal of how the carer feels. Plus they haven’t had to give up their lives so they have other priorities to focus on. Or maybe that’s just my family.

For fairness, both my (divorced) parents live in France- ze land of ze good social care. So the distance between us and the (comparative) healthcare paradise they live in makes it difficult for them to help or truly appreciate the problem. My mother still works and would help out more if she could. My dad, not so much, he is retired and has the time, money, and ability to help. But he doesn’t. Not even a little bit. Why? Because he doesn’t care. It’s simple really; nothing about his mother’s situation benefits him, he’s not willing to make changes to his life or golf playing schedule , and his daughter does it very well for free. He also doesn’t care that me looking after his mother requires me to sacrifice my life, as long as it is not his, he’s fine with that. I don’t know what that clinical level of selfishness is called but it reaches ‘sociopathic’ levels in my view.

Some situations in life reveal who a person is. They say you only truly know a person when you’ve seen them try to build IKEA furniture, been on the phone to a never-ending helpline; or when their elderly mother needs help and you’re their only child.

In 2020, I became an unpaid carer to my grandmother, found out who my dad is, and lived through a global pandemic. Big year.

The result is that I haven’t spoken to my father in about a year and half, and if truth be told, I hate him. I hate his selfishness, his rejection, his lack of action, I hate that he chooses to ignore the problem and that he consciously puts himself first every single time and in any situation. I hate that he doesn’t even try, and that he hates me back.

The depth of those feelings have surprised me, it is like a volcanic pit waiting to erupt when I think about it. I’m too busy to dwell on it much, and I’m glad I made the to decision accept who he is, however difficult and rage-inducing it may be. I have known since I was 15 that he wasn’t the man I thought he was (this isn’t the first display of his true nature) but it has taken me 20 years to do something about and decide that I will not tolerate his behaviour anymore. I think he’s actually quite pleased that we don’t speak, he doesn’t have to deal with me and my pesky attempts to hold him to account anymore, plus it means he can go on more golf trips. A win for him – and that’s all that matters.

Every family is different, and they each have their own problems. I share this not to air dirty laundry on the internet, but because I think it is yet another aspect of being an unpaid carer that isn’t talked about. It takes shape in different ways, and I’m willing to bet that most unpaid carers face some form of alienation from their families.

I don’t think it has to be this way, having some uncomfortable family discussions when things are going well could help formulate caring plans and hypothetical distribution of roles so families can stay united in difficulty; and one member doesn’t unfairly bear the brunt.
The real undateables

Aug 21st, 2023

I think I got chatted up recently. It hasn’t happened for so long that I wasn’t sure what was happening and I didn’t know how to react. I’d managed to meet up with a friend to have dinner in Manchester on a Saturday evening. She was visiting from Italy and was treated to the full authentic Mancunian experience of pouring rain, a lot of dodgy fake tan, and some very revealing fashion choices . As we were walking to the restaurant, we got stopped in the street by a man who asked me if I was ‘that famous actress off that TV show‘. I looked at him blankly and assured him I was not. He then said I was ‘striking‘ and was ‘very beautiful‘. The poor man must be blind I thought as I hastily thanked him before hurriedly continuing on our rain-sodden route.

‘You should have said you were that famous actress and that you didn’t want to be outed.’ Said my friend as we entered the restaurant.

‘Oh that would have been perfect!’ I said as I shook and closed my umbrella.

Later that night , on the train home, as I was watching the drunk revellers loudly arguing and laughing, I thought about that fleeting interaction. I remembered my nights out in London and all the dates I had been on when I had control over my life. Granted, my dating life has never been successful. My friends know I have been on a date with every dickhead in London and have laughed at my many dating disasters (maybe that’s another blog series?! I’m told I have very good stories). As I look at my life now, at 35, dating is a distant memory. I have given up on that part of my life. I’m not exactly attractive dating material, I live in a small village with a 98 year old who depends on me for practically everything, I work all the time, and barely have time to eat, let alone go out. I’m not sure I’d even know what to say on a date anymore. I used to have an excellent first date repertoire, but now I’d have no idea how to answer the basic dating questions like:

‘What do you do when you’re not working?‘ (I go hiking in the rain on the moors on my own on weekend mornings.)

‘What’s your dream in life?’ (No idea, I’m too tired and depressed to think about that.)

‘What are you currently binge watching?‘ (Nothing. But I do fall asleep to very interesting sounding documentaries.)

To recap, I’m 35, live with and care for my grandmother, I have a big job so I have almost no free time, and I don’t drink. Sexy. And that last non-drinking part is the biggest red flag for British men, in my experience, even if they could get over my current living situation.

My very single status isn’t something I think about much, until I hear of one of my friend’s updates in the love department. I’m happy for them, but it makes me sad that I’m chronically on my own… not that I miss my terrible dates; like the time I had to sit through a drink with some guy who thought he was psychic and could read minds but somehow missed the massive lie I told to get out of there when he asked if I wanted another diet coke. The girls in the office got a kick out of that one on the following Monday morning.
It takes a cul de sac

Aug 17th, 2023

You know the saying ‘it takes a village to raise a child’? Well, it turns out the same is true for looking after the elderly. More precisely, it takes a cul de sac.

Moving up to Lancashire from London has shown me the value of local communities and friendly neighbours. When I lived in London, I had no idea who my neighbours were. I would sometimes hear the door to the flat on the second floor close and, in the four years I lived there, I never once heard a peep out of the neighbour on the ground floor. I only knew of their existence by the bicycle that was sometimes propped up against the hallway wall. Unless, in a surreal twist, the bike was in fact the neighbour.

Coming to live with grandma in the cul de sac was very different, all the neighbours knew I’d arrived to help her and, during the COVID- 19 lockdowns, they would stop to chat (from a safe distance) during our allocated hour of exercise. This friendliness surprised me at first and I wasn’t too comfortable with the level everyone is in each other’s lives. I don’t know why, I guess it may have something to do with my trauma at the local butcher loudly congratulating me on getting my first period when I was visiting as a teenager (grandma has never had any boundaries when it comes to gossip). I gradually relaxed into the ambient friendliness and realised just how wonderful it can be.

We all look out for each other, we help each other and, to put it simply, we care. This is particularly great when caring for the elderly. The next door neighbour will sometimes take grandma out for lunch and always takes her to her regular podiatrist appointment; a huge help when I’m working. When doing the weekly shop, I always make sure to get scones for the elderly neighbour two doors down because I know she loves them and can’t easily go out. The same neighbour also enjoys a good gossip over the phone with grandma.

Christmas Eve usually involves a procession of neighbours popping in to give grandma her Christmas presents as the doyenne of the street; and at Easter I make sure to get chocolates for everyone and deliver them like a demented bunny.

The supportive atmosphere is also helpful is less pleasant circumstances. Early one Saturday, the elderly neighbour’s dog walker knocked on our door worried that she couldn’t get an answer. I grabbed the keys to her house (we each have spare keys) and rushed round, expecting the worst and dreading what state I would find her in. Fortunately, after calling her name a few times, as I was checking each room in her house; it transpired she was having a shower and they’d been a timing miscommunication as to the time of the dog walk. Phew.

This neighbour’s life has been saved a number of times by other neighbours over the years when she’s fallen or, as was the case just last week, when the doctor made a mistake and prescribed her medication that nearly killed her. When this neighbour turned 80, she invited us all to lunch at a local restaurant and tearfully thanked us for our help. I looked around the table, I felt a wave of gratitude for all those ordinary people who do something so extraordinarily rare- they care and they act.

It isn’t all that grim up North, having wonderfully warm people around you makes you forget about the near-constant rain…maybe that’s why nobody wears raincoats up here, although that is still a mystery to me.
Who are you going to throw money at?

Aug 14th, 2023
‘That’s no problem at all. I’ll wait for your call and see if we can start again in 6 weeks.‘ Said the lady at the other end of the phone from the private caring company. ‘It actually helps my rota!’

‘Ok, thank you.’ I answered. That last comment didn’t register with me at the time as I was exhausted. I had called the private care company to cancel their visits for the next 6 weeks as grandma was deathly ill with pneumonia and I was looking after round the clock. I didn’t need their usual help with cleaning and taking her to the local shop.

I was reminded of that exchange when my parents (who both live in France) enquired with said private care company about getting extra help. They’d insisted on meeting with them, in a (misguided) attempt to help me I think. I knew what the answer would be and I was busy working so I was glad to have them out of the house to find out for themselves how little help is available, even if you’re willing, or more likely, forced to pay for it. They also tend to not believe how bad the situation is to I thought this would be a nice eye-opening experience for them.

‘Mais c’est pas possible!‘ (‘But it’s not possible!’) I heard mum say as she came into the house. I sighted and braced myself for a furious debrief of how the meeting had gone once my work day was over. A few hours later, I took a deep breath and entered the living room to ask what grandma wanted for dinner, knowing it would give mum the opportunity to talk about how the meeting had gone in the kitchen (and in French) while we cooked.

She was horrified. She’d discovered that I, in fact, wasn’t lying about the lack of paid carers in the UK and that the private care company had informed them they would not be able to provide us with more hours of help than the two and and half hours a week we already had. The concept of us having to pay for care was alien to mum in the first place as this is covered by the French National Security system and you only pay reduced rates in certain circumstances. Matters weren’t helped by an email the head of the caring company had sent following the meeting with my parents which, in a passive aggressive in tone, basically said ‘take what we can give you or leave it’. I thought it was a strange move for them to send that email but I wasn’t in the meeting so perhaps they felt it necessary to reiterate the points that they struggle to hire and keep staff. Very true, but not sure how their clients can fix the problem (apart from me sacrificing my life, of course).

For those who think they’ll be able to pay for care – I have bad news: there is a huge lack of paid carers in the UK, there are about 165,000 vacancies in the adult care sector. Which begs the question: when the worst happens, who are you going throw money at? If the private care providers can’t meet the needs of your loved ones, and the NHS can’t either – what do you do? The matter is all the more complicated when the person who needs care has complex needs. You need adequately trained paid carers to help, and they’re even rarer. So you’re at the mercy of rotas that change constantly, new carers every week that you have to train up on what to do yourself – essentially you’re paying for you to do the work half the time.

Need more convincing? Here are two recent stories that made the press:
- Carer shortage: Woman stuck in hospital for 11 months
- Mother stays awake for 60 hours as son’s care breaks down
These are not one off examples, this happens all the time. The system is crumbling and even the private sector can’t provide an adequate solution, if you can afford it. These stories leave me heartbroken and in despair that the situation is getting worse. Unpaid carers are screaming out for help and nobody is listening.
Explaining the inexplicable

Aug 10th, 2023

‘Pff! T’exagères!’ (You’re exaggerating) said my mum down the phone one Saturday morning as we were catching up on how the week had gone. This happens a lot when you’re a carer, more or less subtly. Most people can’t or won’t believe how hard life can be for unpaid carers.They can’t believe that no help is available, the exhaustion we feel, the frequency at which medical appointments get cancelled, the cost of private care, or the extent to which we have had to sacrifice our lives.

This is one of the most infuriating things about being a carer. Because, unless you have experienced it, it is impossible to understand or relate to our reality. The biases we all have creep into the opinions we form of each other’s situations. The skepticism towards the realities of unpaid carers’ lives adds to the loneliness and alienation we feel ( I certainly do). It also means that we can rarely share how we feel with the people in our lives who aren’t carers.

I think this is a huge part of why there is so little help for us. Because nobody can believe how bad the issue is… until the unthinkable happens and the awful reality of caring for a loved one hits. If the public at large can’t relate to the issues carers face, then it doesn’t get on the political agenda and no action is taken. In short, it is not an electable issue for politicians.

What can be done?

I’m not sure, I think a documentary where celebrities (or politicians?) spend a week with unpaid carers with cameras following their every move could be an idea. Would people watch it? Probably not- it would make for too uncomfortable viewing… although I might pitch it to Carers UK – I work in communications after all, I know how to tell a compelling story! Charities and community groups do a great job at bringing carers together, providing information, and getting our stories out in the press. The We Care Campaign’s video on the lives of unpaid carers is fantastic for example (watch it here) and we have to support their efforts.

To all the non-carers reading this (thank you for getting this far); I promise you that our lives are as hard as we describe. Yes; we have done our research. Yes; we are as tired as we look. And yes; it is as shit and unfair as it sounds. I’m aware that there are plenty of situations I can’t understand or relate to, and since I’ve become a carer, I have become more empathetic of what people go through in life. Because you truly never know what it will throw at you. I certainly never thought I’d be in the situation I’m currently in.

Incidentally, writing this blog has unlocked the door to a wonderfully supportive community of unpaid carers. A lovely antidote to the loneliness I feel. Thank you for reading, and caring!

Category: Uncategorized

Keeping it real

Fair Warning

Clear action

What can be done?