I’m not a big fan of labels. They can too easily pigeon-hole people, creating limiting and disempowering caricatures of people.

‘Carer’ was probably my least favourite. For me it denoted someone - always a woman - providing physical, monotonous personal care for someone, usually house bound, with little freedom or fun in their lives.

I certainly didn’t see myself as one.

After all, I was (and am) doing what any half-decent daughter or sibling or mother does: supporting family members with tasks they aren’t able to do for themselves.

The thing is, as we all know, elderly parents’ needs increase often gradually, and we find ourselves handling an increasing ‘portfolio’ of what is essentially ‘care’ on top of our jobs and our own family’s lives. But then that portfolio grew exponentially over the past 3-4 years as my mother’s physical and mental decline propelled us (mostly me) to find a way of enabling my older brother to become independent of her. With only a recent diagnosis of autism/ADHD and complex learning difficulties, he has lived with her all his life. Unable to hold down paid employment, he is very capable of cooking or fetching things she can’t due to her mild physical disabilities. But this arrangement had to come to an end when she started to need professional care.

Add to that my own daughter having a late diagnosis of autism and sensory processing issues whilst at University, and you can get the picture.

It took a couple of years of this until I realised I probably could - and should - describe myself as a carer. It was triggered one November day in 2023. I had called a friend of my mother’s who has two autistic adult sons, one of whom has complex needs. I was trying to find an agency that supplied support workers/PAs for my brother, to unravel the benefits system and work out the best way to enable him to learn independence skills and where to live. I was hitting dead ends.

‘Have you heard of the charity, Carers in Herts?’ she said. ‘They’re brilliant. They’ll sign-post you to local services but more importantly, they’ll also check in on you as a carer. You are a carer, after all, you do know that?’

‘Am I?’ I thought. I wasn’t (and still don’t) do hands-on care like washing, changing beds or helping my mother get dressed. So how could that be me? Depending on the day of the week, I felt (and feel) more like a glorified PA, project manager, counsellor, tech support officer, benefits researcher, medical adviser, finance manager, health & safety officer, emergency support unit and general advice line for any query about every aspect of modern life (and breathe!)

In any one week (and yes, I mean one) this can range from the mundane ‘Do you have a shoe box? I need to post my orthotic shoes for re-heeling’’ (mother) ‘Can you call me to discuss the PIP appeal?’ (daughter) to the ridiculous ‘There’s a rat in my garden, how do I get rid of it?’ and the urgent ‘I’ve run out of money to buy my food shop’ (brother) and ‘There’s water dripping from the sitting room ceiling’ (mother). That was last month. Sigh.

A friend once joked that I should put a Citizens Advice Bureau sign put up outside our front door!

Sound familiar, anyone?

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I looked again at the Carers Assessment form that the social worker had left me to complete. She had recently seen my Mum (in her capacity as carer for my brother) but she said I was very much someone who needed to be on ‘her list’. It had asked me to list who would struggle if I became unwell. I gulped. Er, right, yes….a lot of people. And whilst yes, I have a capable husband, he struggles with exhaustion related to sensory overload and cognitive processing (he has late diagnosed ADHD/autism) and so has limited capacity beyond his work. My son was only 17 at the time and with a burgeoning school workload.

Khadra Awomer, in her recent post this week for Carers Week ‘The Problem with asking ‘Are you a Caregiver’, made the insightful point that this question (Are you a carer?) is the wrong one. When we’re asked instead ‘Who depends on you?’ or ‘Who do you regularly help because of illness, disability, dementia, mental health difficulties, or age-related needs?’ the answer is often alarmingly clear.

So I squared up to reality and accepted that I was actually a ‘carer’. More than that, an ‘unpaid carer’. The sheer volume of tasks and knotty issues that needed my attention made finding a new contract after my last one had ended very difficult. I conceded defeat and decided to focus fully on what I came to call ‘Operation Independence Day’ and then try and return to work. At least, that had been the plan.

I signed up to Carers in Herts, I filled in that form for the social worker, and I looked into benefits. I wasn’t eligible for any of them but I was eligible for a small direct payment to spend on an activity for my mental health. This took an aeon to be arranged and to come but I got it eventually. I spend it on open air swimming pool fees and choir fees.

I also signed up to Carers UK, the brilliant campaigning and signposting charity, learning about my rights, and agreeing to be on their roster of carers willing to speak to the media. When I did I had no idea I’d end up on BBC Breakfast one morning (as recounted in last month’s post) but I would happily do it again if it means I can help campaign for the millions of other unpaid carers who have it much tougher than I do.

Describing myself as a carer also pushed me into thinking a little more seriously about my own health and looking after me. What if I became unwell?? It didn’t bear thinking about. If I’m honest, that penny didn’t fully drop till I was near burnout myself 18 months later. It wasn’t about physical exercise (I have always kept moderately fit) it was more my mental health, my diet and being persistent in asking other people to step up and help.

Finding that support, as we all know, is tough. I’ve written before about my dislike of the constant emphasis by the authorities on ‘self-care’ when you can’t find someone else to step in for certain things. This is why Carers UK’s latest campaign to build carer friendly communities is so welcome and so important - we need communities of people to support us the carers, not simply for us to somehow battle on attempting to look after ourselves.

I have now got used to calling myself a carer and have changed my attitude to the label entirely. I need to use it for my own well-being as well as others if I am to access support. It also helps explain to others why I cannot do a full-time job at the moment, why we aren’t as financially stable as we used to be, and why I need to be strategic in what work I do return to. My move to becoming a part-time, freelance editor is one of those strategic (and enjoyable) choices.

Of course there is the risk that I will be put in a box, labelled under whatever category people view what a carer does, but the more we show the world what caring actually looks like (and there is no one size fits all here), the less likely that will happen.

The fact is, this is the new face of caring. As someone said to me after seeing me on BBC Breakfast last month: ‘It was so good to see someone representing us ‘carers’ who looked like me…'

How about you? Does any of this sound familiar? Do you feel like a carer? When did you start to call yourself one and has it helped?

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My everyday life is rarely predictable. Most days I get presented with some random whatsapp, email or phone call that I had not expected - from my mum, brother, daughter, son or any number of organisations or companies relating to their lives.

But exactly two weeks ago today, I had a message that took the prize for most unexpected. I had just finished eating dinner when a voicemail message popped up on my phone from the Comms Officer at the charity, Carers UK.

‘Sorry to message you so late,’ she said, ‘but there’s been a change of plan. The carer we had lined up to appear on BBC Breakfast has had to pull out. I don’t suppose you can do it? It’ll be via zoom, and at 6.40am tomorrow…..absolutely no pressure though, I know it’s a big ask!’

I checked my watch. 7.30pm. That’s in under 12 hours, 8 of which I was planning to be asleep.

To be fair, this wasn’t totally out of the blue. Two days before, I’d received an email from the Comms team asking if I’d be willing to go on BBC Breakfast Live on Tuesday to speak about my experience of being an unemployed, unpaid carer. That day they were launching their latest report, Tipping Point, about the growing numbers of unpaid carers cutting their hours or stopping work altogether - and the negative impact this has on carers and the economy. All my expenses would be covered by the BBC, including a night in a hotel near Media City, Salford (yes really!).

18 months earlier, I had agreed to be on their list of carers willing to speak to the media. I didn’t hesitate to say yes. As someone who used to work in the charitable sector in policy analysis, advocacy and communications, I have spent much of my working life pressing for better policies and conditions for those who are on the sharp end of life. I know how it works, and I know how charities need human faces and voices to support the statistics.

That said, when they asked me, I had only envisaged needing to give the odd quote to journalists for minor articles. I’m not what the media or public might see to be a typical ‘carer’. I don’t do personal care such as putting my mum to bed or giving her breakfast. I don’t have to be with her 24hrs a day like many people do. I’m more what you might call an unpaid PA to my mother and older brother who have myriad needs. I assumed few would be interested in my story. I certainly did not expect to be asked to appear on daytime TV - live!

After a weekend of weighing up the balance of a free overnight trip away (yes please!) with the risk of appearing on live TV at a ridiculous hour of the morning and somehow making a fool of myself, I decided I would go for it. My mother and brother were fine without me for a day or two. But then I found out on Monday morning that I wouldn’t be needed after all (in no way was this Carers UK’s fault).

Ah well, I thought, nothing lost. I hadn’t prepared for it beyond feverishly consulting with my best friend on what to wear. I’d intended to use the train journey to work out what I’d say. I got on with my day.

So, to discover that I was in fact needed, and that I had only a couple of hours to get my head around what I might say, and that it would be on zoom…. well that came as a rather big surprise!

‘What do you think I should do?’ I asked my 19 yr old son, currently at home in his gap year (my husband was out). My son has his head screwed on and isn’t one for making rash decisions. That said, he is still only 19 and doesn’t know a thing about media interviews.

‘Is this to do with that Telegraph article I took a photo of you and Granny for?’

‘Sort of. It’s on the same topic for the same charity, but it didn’t come off the back of it.’

A month earlier I’d agreed to talk to a journalist at the Telegraph (a major UK broadsheet) for an article about the financial impact on middle-class families of increasing care burdens. She’d offered to send a photographer out but I said we could manage, knowing my family were all good photographers. It was a good article. I hadn’t expected my story to feature so prominently, or our photo to be the main one, but I was proud to have helped raise this issue.

As we loaded the dishwasher, he said quietly ‘You’ve got to do it.’

I knew he was right. The sheer crazy short amount of time to prepare was slightly terrifying. I would talk to the producer that evening who would take notes about my story and tell me the names of the presenters, but that would be all. I have never watched BBC Breakfast, or any morning TV (I’m a radio person in daytime hours), and so had no clue who the presenters were or what the format was.

But I had a rough idea. And after all, I thought, the stakes are pretty low. I’m not representing an organisation and therefore potentially risking people’s lives by giving incorrect information. I remembered the occasional times I’d been required to be interviewed on TV or radio in my capacity as Conflict Policy Officer for World Vision UK back in the late 90s/early 2000s. Responding to questions about a report I’d written on various conflict zones could be fairly hairy if the interview was live or they didn’t let you know the questions beforehand.

One memorable occasion has never left me. I went for interview on Sky TV with the now famous journalist Emily Maitlis. This was probably her first news anchor job, 19 years before her interview with Prince Andrew on Panorama that would make her a household name. She wore a turquoise leather jacket which I rather coveted. I was on to talk about the conflict in Angola. She asked me a question that I hadn’t been prepared for, causing me to pause for an agonizing few seconds, staring at her in mild fright, looking like a rabbit caught in the headlights.

I did not want a repeat of that.

Of course, the only reputational risk was to myself, my mother or brother, which is still sizeable. I would hate to say anything that they wouldn’t want me to say. So I figured the best strategy was to keep the story focused on me rather than them as much as possible.

Before going to bed I called them to let them know, and thanked my husband for agreeing to be on last minute tech support and keeping-the-dog-quiet support (can you imagine if the doorbell rang with a delivery at just the wrong time?!) I rolled into bed at 11.30, exhausted but wide awake and unable to sleep for a couple of hours.

But somehow we as humans usually manage to muster what we need for the time we need it, don’t we? I’ve had enough practice of doing this as a parent, carer and employee in my 55 years, pulling out the stops when needed. And so I found myself sitting in front of my computer at the eye-boggling early hour of 6.30am, having thrown on some clothes and make up, and waited to be beamed into the BBC Studios in Manchester.

But then a couple more surprises came my way.

‘Can you unblur your background please?’ came a voice through my headphones. I was not expecting this. I hadn’t done any tidying up behind me. Thankfully my background is ok, but the eagle eyed might spot a bottle of gin or whisky lurking just behind my left shoulder. Our glasses cabinet is in the same room that I work as its off the side of the kitchen. Lord, I thought, what if people spot that?!

Then I was told that I would NOT be able to see the presenters or John Perryman, Head of Policy from Carers UK who was also being interviewed. Er, what??

Yes, this is all I would be able to see.

Ok time to dig deep. In fact, I had no time to think. Probably for the best. Even more for the best was that I had no clue of the huge size of the screen in the studio on which my face would be plastered!! That would likely have completely thrown me.

I switched immediately into performance mode. Just smile and look like you know what you’re doing. This has been my mantra for any and every situation where I’m feeling out of my depth (like travelling around South Africa on my own in 1995) or when performing on stage. I drew on all those years of doing musical theatre productions as a teenager at the local theatre, of playing the character female lead in Gilbert & Sullivan productions at Uni, of entering singing competitions, or performing with choirs and more recently, a not-so-serious ukulele band.

And it seemed to work.

After the 6.33 mins were up, my husband came bursting into the room from the sitting room where he’d been watching, the dog following in at his heels. ‘You were brilliant!’ he said throwing his arms up and around me. My shoulders dropped in relief. My husband rarely ever shows outward excitement. I must have done ok.

Others seemed to think the same including Carers UK (most importantly). A friend even messaged me afterwards to tell me that I simply HAD to sign up for the next Traitors series! I died laughing. I’m the worst liar there is.

I spent the rest of the day in a mixture of exhaustion, euphoria and mild anxiety (who doesn’t relive what they say on live TV, unpicking how they would have answered things better?). But it was fun, I felt alive in a way I’d not done in ages.

It was interesting to realise that I was back to campaigning, to doing something to push for policy change, but this time, on the other side of the policy story. I was not the one delivering the message as the policy influencer, but the one with the ‘people interest’ story.

But above all, I felt seen. Seen for the challenging situation I find myself in - even if only a very small part of that situation. Most people who care for family in some way or other do not get seen for the incredible sacrifices they make. We aren’t just unpaid carers, we’re unseen carers.

I hope that I’ve managed to throw a tiny bit of light on the far greater challenges of many, many unpaid carers around the country who are unseen and uncelebrated.

Here’s the link to the video on my LinkedIn profile:

And the link to the report Tipping Point.

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Last Wednesday I woke to a crystal blue sky, the air crisp and full of promise. It was promise not just of a deliciously warm day – the hottest of the year in fact – but promise of an evening of celebration, joy and recognition for my daughter.

This was the day of the private view and launch of the exhibition Derwent Art Prize 2026 for which my Illustration student daughter’s coloured drawing of her landlady’s sitting room had been selected. Displaying all 71 shortlisted drawings from the 5,000 submitted from across the globe, each artist and their chosen guest was invited to view their work hung on the walls of this well-known London gallery, to sip bubbly whilst chatting to the judges and to find out who had won one of the six prizes.

When we found out in March she’d been shortlisted we were all over the moon. ‘This changes so much!’ she whispered to me excitedly over the phone (she was in her art studio when she called). By this she didn’t mean that this was going to propel her to global fame; she is far too humble for that. No, this was about confidence. The shortlist was a confirmation that her art was good. Really good. And that she might have a future with it.

Of course, she’s heard no end of praise from us over the years (see the cherries she drew aged 14 below), but to receive it from professional judges - well that’s a different matter altogether.

She could only choose one person to accompany her and she chose me. As my husband finds these events a bit overwhelming, he was happy to look after the dog at home.

And so, with a mix of nerves and excitement, we went into London early to reduce the stress of travelling to London. We don’t live far away but her sensitivity to noise and crowds makes train and tube journeys taxing. We also wanted to make the most of the sunshine, opting to grab a burrito from a take away stall in Gabriel’s Wharf, to soak up the summer-like atmosphere along the Southbank. We weren’t disappointed: Londoners were out in force, soaking up the unseasonably hot weather, and in unusually chatty mood!

Being right on the Thames, a short walk from the Tate Modern and Blackfriars station, we have often walked past this gallery, peering in through the floor to ceiling glass windows on our way to or from theatres, concert halls or the London Eye. I pinched myself that we were going in as guest artists.

As we entered through the sliding glass doors, the buzz in the room ran through me like an electric pulse. Every single person was beaming, smiling, eyes searching for their piece, squeezing past each other with broad nods of silent congratulation. Surely, I thought, this must be the happiest room in London right now?

Scanning the room, my eyes picked out the extraordinary breadth of style as well as craft displayed in the room. Many were pieces I would never have believed had been drawn with a pencil, like Corner Shop Lemons by Sarah Evans, or the sublime still life of a magnolia in a vase ressembling a painting by an old master. You can see them all here where you can also vote for your favourite.

We quickly found my daughter’s ‘Cats in the Living Room’, hung below an exquisite coloured drawing of a cooked breakfast on a copy of The Times newspaper. A mix of coloured pencil, pastel and collage, it is one of three she submitted of drawings of her landlady’s quirky house in Cambridge, as part of her final year work.

She beamed with delight as I took her photo and short video (for her Instagram reels), and I stood back as someone bent down to take a closer look at hers. Cue more winks and smiles.

Realising that half of the people squeezing past me must be a shortlisted artist, I took a punt at asking ‘Which is yours?’ to a few of them. An older lady who’d come from Amsterdam beamed and pointed at a small, faintly coloured abstract piece. Another said she was from Devon, and pointed toward a large frame of brown linen on which she had cleverly recreated what I had thought was an abstract drawing (see below). It was, in fact, the silhouette of a tree reflected off her bathroom mirror and onto her garage, and for which she’d used softly coloured crayons. Super clever. A professional artist about my age, she later generously shared multiple tips for my daughter on how to progress as an artist.

Ciara didn’t win a prize. The judges selected exclusively black and white, graphite pencil drawings, with the exception of the brilliant Natural History Museum mixed media drawing by Tim Ashley that won the Educator’s award. All of them were exquisite and clever, but as the brief had encouraged artists to be innovative and to not be limited to traditional drawing, she was a little surprised that the judges chose no coloured pieces.

Knowing the incredible standard, she didn’t expect to win. Being shortlisted is honour enough especially when so young and just starting out as an artist. Although a friend told me this week that she overhead someone say that Cats in the Living Room was her favourite!

But as far as we’re concerned, Ciara had won in every other aspect.

Beaming throughout the evening, she had not only managed but had flourished in an environment that can often be overwhelming for her: the wall of noise, the heat, the multiple conversations, the unknown, the anticipation. And yet she had moved around the room with poise, grabbing the opportunity to chat to the judge (Katherine Soriano) as well as the director of Parker Harris who put on these exhibitions.

She spoke with an ease and assurance that made my mother’s heart swelled with pride – even more than it already had! It was that moment that a friend described to me as when, as parents, we watch our young adult child step into a very adult space and own it.

Later, when I asked Ciara how she’d managed to keep going for 2 hours without fading or having a shut-down (when she literally can’t speak) she put it down to several things: being rested before she went (it was the Easter holidays); ducking out of the room for some ‘silence and fresh air’ half way through and, of course, adrenaline.

I saw how well she had learnt how to manage her limitations, and how to prepare for big moments like these.

‘Confidence too,’ she said. ‘Knowing I had won a place to be in that room.’

And so she had. I’m not referring just to her talent, but to other qualities for which I admire her far more.

18 months ago, she was not what many would call ‘winning at life’. Struggling with exhaustion and autistic-related burnout, she wasn’t able to do the basic things in life, let alone draw. But here I saw how my sweet-natured daughter had grown, in both strength and confidence. I saw the results of professional and family support, and her incredible levels of resilience, determination and courage.

But, so too, has she shown the even more valuable qualities of learning to accept her situation when she was struggling and learning to ask for help in that moment. Recognising our limits as well as our potential is a fine balancing act.

Life is rarely without its challenges, particularly when you are neurodivergent like my daughter. But learning how to manage them, how to adapt and how to be true to yourself in these moments is something she has clearly grasped.

As we spilled out of the gallery and onto the walkway along the Thames, the fading light painted the river in soft blues and pinks like an Impressionist. St Paul’s and the City’s skyscrapers glowed against the indigo sky, their myriad windows punching bright holes in the sky.

I put my arm through my daughter’s and smiled with pure contentment and pride at the fine young woman my daughter had become.

Voting for the People’s Choice Award is open until 27th April, so if you feel inclined, please do vote for my daughter’s picture here. By voting, you’ll get entered into a prize draw for £200 worth of Derwent supplies!

And if you live near London, the exhibition is open till this Sunday, 19th April. Open daily 11-6pm (2pm Sunday) and free to enter. Do go if you can!

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At the start of every February, there is a subtle but distinct shift in the season here in the UK. It comes at the mid point between the winter solstice and the spring equinox. It makes itself most felt in the quality of the sunlight, a small but distinct change that the most observant (or desperate!) will perceive.

I noticed it for the first time this year. As I stepped outside one early February afternoon to walk my dog Buster, catching a rare dry day (February was crazy wet this year), the sky seemed barely but perceptibly lighter. It was as if someone had gently turned up the dimmer switch or opened a few blinds. Was winter – my least favourite season – actually starting to turn, I wondered?

Most years, I eagerly watch for the first signs of spring, but I usually look around now, in early March, when the signs are more obvious. I hadn’t realised that this shift started as early as the first week of February until I read an instagram post by someone on St Bridget’s day, about what the Celts used to call ‘Imbolc’, or ‘first sign of spring’. They would mark it with activities like spring cleaning and lighting of candles to symbolise a time of purification, new beginnings, and preparing for the growing season. The link with the Christian season of Lent is clear.

Around the same time I too was sensing a subtle but very distinct change in my own life in ways that has both surprised and delighted me – like the snowdrops, narcissi and crocuses that were popping up in all the gardens in my neighbourhood.

A few weeks ago, a friend sent me a link to a creative writing retreat that had a last minute cancellation. Unusually, it was both affordable and not far from where I live meaning I didn’t need to stay overnight. Run by a Christian writer, it was as much a spiritual retreat as a place for inspiration and writing time. My weary soul jumped at the chance.

There are times in life when things align in a way that you can’t force them to happen; this was one of them. I was surrounded by some beautiful, kind writers, many of them younger than me and none of them writing memoir, but it didn’t matter. The sense of community, the love and the words shared confirmed things I was learning and sensing in my life. It felt very much like the Divine had directed me there.

Soon after, some fiction editing work came my way that I had planted the seeds for a whole year ago. I jumped at that chance too. It has brought not only much needed income, but a chance to move into an area of editing that I’ve been wanting to do for some time.

I’d felt held back from by what I saw as relevant qualifications (I had always wanted to do an English degree). The positive feedback I got from the writer not only affirmed my sense that I have the skills for this (a life time of writing, learning its craft, and more recently, the art of editing) but it also gave me a real confidence boost to keep going. Her lodger, a Guardian journalist and author of 3 books, apparently took at look at my feedback and said it was better than what he gets from his editor at Random House! (I’m sure that was just because I gave her more detail than most publishing house have time for but all the same its an indication I’m doing something right!

Around the same time, my daughter was also experiencing a shift in her own life. She received news that a pastel drawing she had submitted for the Derwent Art Prize, a big international art prize, had been shortlisted. She is ecstatic, as are we. After a very tough 18 months in which she has faced very real autistic burnout, forcing her to pause her final year of her Illustration degree and return home a year ago, this has brought her a much needed confidence boost that has changed her outlook and hope for the future. Like mother, like daughter it seems.

Her picture, together with the 71 other shortlisted pictures (out of 5,000 submitted) will be shown in the Oxo Gallery in London April 9-19th. One of the prizes is The People’s Prize (£500) for which anyone can vote. I’ve provided the link at the end of this post if you would be happy to vote.

The only criteria for submission was to use the medium of ‘pencil’ (charcoal, pastel, colour, graphite). Using pastel and pencil, her drawing is of her landlady’s sitting room in Cambridge. A retired Dutch female academic, her house is full of unusual pieces of furniture and books, as well as cats! The yellow book on the coffee table was written by a friend of hers who had just paid a visit.

I love my daughter’s use of light. She drew this last autumn, and has captured the warm October light beautifully, brightening what is usually a dark room. I also love the way she has deliberately left parts unfinished or sketchy (the mirror on the left hand wall and the carpet) in contrast to the sofa which her prompted particular praise from her tutors.

It illustrates beautifully what I feel is happening in my own life. Light coming in to dark places, bringing colour, warmth and a sense of joy.

Those of you who have been following me for some time will know what a brutal year last year was. The weight of arranging and managing care for my mother, moving my older brother into independent living and out of her house the previous year, my son’s glandular fever and my daughter’s burn out landed hard around this time last year. In the autumn, my sister-in-law had a massive stroke, putting her in intensive care followed by months in hospital then a brain injury clinic. She is making good, though slow, progress and is going home in a few weeks time so things are looking up, but she is still unable to walk, move her left arm or have use of her right eye. And finally, six days before Christmas, a good friend died very suddenly from a rare and aggressive sarcoma.

Let’s just say that 2025 is a year I am very happy to be leaving behind.

I entered this year with a tentative sense of hope for new things, laced with a large and healthy dose of realism. Life doesn’t magically get easier just because we turn the page on a new calendar year. This year, of all years, is testament to that: the level of uncertainty, crisis and calamity in the world seems to keep rising inexorably. But I have seen some of my caring responsibilities lighten this year.

My brother has settled remarkably well into his new life. He is supported by a lovely Support Worker (a resourceful Zimbabwean man) who visits him 3 times a week, helps him with his emails and bills and makes sure he washes up and cleans his flat. His fee is paid for entirely with the PIP money (a benefit I worked hard to win).

My son is enjoying the freedom of his gap year: sleeping for England, playing the bass/electric guitar, learning to drive, Brazilian Jui-Jitsu, and earning some money by lumping large pieces of concrete around for a small landscape gardening company. He’s like a different person since coming out from the shadow of constant school pressure. Finally, my daughter is in a stronger place than she was six months ago, supported by her autism coach, a lighter work load and supportive tutors.

My mother is the only one whose dependency on me is increasing as her memory continues to decline along with her physical health. Being the considerate person she is, he hates relying on me for so much despite my reassurances. Growing old is so bloomin’ hard!

Lightening of loads aside, I’ve been learning important habits and attitudes to keep me mentally and physically healthy - for ultimately it is these that will keep me sane when the burdens increase again. Thanks to my therapist, I’ve been grasping some important concepts about the crucial role of creativity, play, curiosity, meditation/prayer and relationships in nurturing good mental health. In particular, I’ve been grasping hold of how these enable our right brains (where we process emotion) to connect with our left (analytical, functional side) and how my brain has become stuck in the left, functional side. The reasons for this are multiple but the trauma I suffered in my teens is a major one. This realisation has been a crucial ‘shift’ for me.

Later this year, I plan to write a post about how this ‘functioning mode’ has interplayed with my caring responsibilities, in the hope that it might help others in a similar place.

In the meantime, I hope the light of Spring will bring you some much needed joy, whatever season of life and part of the world you’re in.

Here’s the link to vote for my daughter’s picture. You have until 19 April (I think!). There’s a lot of great pictures….. https://www.derwentartprize-exhibition.com/vote

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Last week I had a vivid dream about a friend who died suddenly and tragically just three days before Christmas.

Those who read my last post might remember that this friend had died of a rare aggressive sarcoma, an alarming tumour that came from seemingly nowhere. Within 4 weeks of feeling unwell and 3 weeks of a misdiagnosis of ovarian cancer, she was dead. She had been admitted to a hospice just two days before than.

Aged 53, she was relatively fit, very active and, honestly, one of the loveliest people I’ve known for over 20 years - we met when our children were toddlers. She leaves behind a gentle, kind husband and two strong and precious daughters in their early twenties.

Nic declined so fast that I, and many others, didn’t even get a chance to see her or to say goodbye. I have to catch myself from thinking she’s gone away for a few months, as she did with her husband this time last year to New Zealand, their first big trip since their daughters left home.

To say we’re in a state of shock would be an understatement.

I realise it’s easy to idealise people when they’re gone, but every single person who knew her has said the same thing. She really was what I call an extraordinary, ordinary person.

For some reason my brain took five weeks after her death, and two weeks after the funeral, to dream of her. The dream was so vivid, so real, I woke with a real sense of having met with her. More than that, I had communicated with her as if it was today - we talked as if she was aware of her death, of the implications, and about how I felt. We were in her kitchen, the place I connected with her most closely. My daughter appeared too, and we talked about how sad we were that the card she made for her didn’t even reach her in time…

When I woke, the tears fell. I had such a deep sense of meeting her, of processing my grief with her, grief not just that she was gone, but that I’d not had a chance to say goodbye. But it also felt like a form of closure, my brain helping me to process something I couldn’t do in the natural.

I know with my rational side that this is a well-known, normal and healthy form of processing of grief. I’m sure many of you reading this will have had similar experiences. But it felt so much more; the human mind and spirit are beautifully unfathomable.

That morning I was booked onto a spin class which I was tempted to miss but, realising exercise and company would do me good, pushed myself to attend. As I cycled on the spot at 100rpm, surrounded by thirty other over 50 year olds, I had a sudden memory of something similar happening to me 40 years ago after my 17 year old sister had suddenly died.

It must have been a few weeks after the car accident that killed her, caused by my father blacking out at the wheel, the whole family in the car except me. I had dreamt I saw my sister walking toward me on our street, as if coming home from school toward our house. I can’t remember if we talked but that the feeling remains: the bittersweet joy of meeting her. An experience similarly strong and uncanny. The heartache I felt on waking was severe: I had so desperately wanted to see her again, to have her back. The heartache was no doubt made all the stronger by my situation at the time: aged just 14 and with my parents still in hospital in Intensive Care.

The memory that surfaced in the spin room drew more tears - I was thankful for the low lighting and that we’d almost come to the end!

As I went drove home, it occurred to me how similar in temperament my sister and Nic were. Both were sweet-natured, kind, funny and with a dazzling smile that became their lasting legacy. Nic’s smile inspired me to write a poem about her.

They even shared that most endearing of all facial features, a dimple. Nic’s sister, Amy-Jane Beer, an award-winning nature author (of The Flow) and campaigner, had shared in her brilliant eulogy that the family’s nickname for her sister had been ‘Twinkle’ because of her ridiculously cute nature as a baby. How like my own sister, I had thought.

Both rarely spoke a bad word about anyone - honestly, I’m not exaggerating for either of them! I remember several of my sister’s friend saying this to us after her death. I can’t remember Nic uttering anything bad about someone unless they were truly awful. My sister, who admittedly could be moody (but who isn’t aged 17?) was never unkind to me. I must have been irritating at times, being the annoying, chatty little sister who stayed too long talking to her boyfriends in the kitchen! The worst I got from her was usually just an exasperated look.

Both had a zest for life, dancing, art and even Geography. The list kept coming.

And so, of course, they were deeply loved and had hundreds of friends. Their funerals were packed with red-eyed friends and family.

No surprise, then, that the tone of their funerals was the same - churches filled with hundreds of mourners sitting in quiet shock and deep sadness at the loss of such a beautiful soul. Teenagers and young adults confronted by death, many for the first time, the sight of a coffin drawing them up in their young tracks.

But also they were funerals filled with kind, hopeful words, spoken by kind, hopeful people. Her sister, Amy, described us not as a congregation but as a constellation - stars in her sister’s galaxy, friends who her sister had brought together, and who had supported her and the family so beautifully in recent weeks. Such a fabulous and poignant metaphor.

I have little memory of my sister Kate’s funeral, shock obliterating most of it, but the music and prayers listed in the order of service together with the faded photos taken by my godfather jolt my memory of similar sentiments of kindness and hope. The Footsteps prayer, the Serenity prayer, even the hymn ‘Make me a Channel of Your Peace’ was sung, which happened to be the one hymn sung at Nic’s funeral.

You may wonder what my godfather was doing taking photos of my sister’s funeral, especially in 1985 when cameras were barely seen in churches for weddings let alone funerals. It was our parish priest’s idea. To record the event for my parents should they survive. I discovered this only a year ago when I went to see him to ask for his memories for my memoir. I had no idea how close to death they were at the time. I now view the photos in a very different light.

As I turn the yellowed plastic-covered pages of the Boots photo album I discover images of stunned young teenagers in striped blazers, sitting bolt upright and in uncharacteristic, obedient stillness in our stark Catholic church. I see drawn faces of adults outside the church, not a single one smiling despite many of them family who had gathered from various corners of the British Isles, no doubt happy to see each other. And this is where the similarities end.

As Amy listed the many places (schools, countries, jobs, field trips) and people (boyfriends, friends, family, children) that her sister had encountered, lives she had touched, I couldn’t help wondering how my sister’s funeral might have looked had she had 40 more years to live.

And I realised that despite the tidal wave of grief for my friend Nic, thankfulness, gratitude and love were able to fill that space in a way that was so hard to do for my sister in September 1985.

For over the course of 53 years, my friend had given us all so much: friendship, laughter, singing together, cups of tea and a listening ear, home-made cards and eco-tips (I will always think of her when I light my fire using clothes drying lint!). And for our children, the Mad Science clubs, nature clubs, art classes and a kind hug when they grazed their knee. She even taught them how to tie their laces when left handed!

Both were beautiful souls whose memories soak our own with love.

RIP Nic x

As the sun drops fast into the inky horizon outside my window, I’m snatching a moment to write about this year before it, too, comes to an end.

Characteristic of the rest of my year, curveballs have landed in my lap over Christmas, skewing my plans to write, read, rest and rejoice. But this year has been so remarkable, demanding and defining, that I’m not letting it slink off without a reflection.

The year of the curveball is the best way to describe a year that has consistently surprised, challenged, stretched, exhausted and at times delighted me. From January 1st, when my son 18 year old received his glandular fever diagnosis, to a friend dying suddenly and tragically of a rare, aggressive cancer just three days before Christmas, it has been 12 months of stepping up to a whole array of crises and challenges.

Shortly into the year, my daughter intermitted her final year of Illustration degree and returned home to recover from autistic-related burnout. In Spring our old cat ran out of his nine lives and died of failed kidneys and my husband and I had some health challenges. Later, my mother had another couple of falls leading to a short stay in hospital, my husband was unemployed for 3 months, and worst of all, my sister in law suffered a serious stroke in October that has left her with little feeling in her left side and blurred vision. She is still in hospital and awaiting being moved to a residential rehab centre.

In the wider world, I’ve watched in anger and horror at the continuing atrocities in Gaza and West Bank and Ukraine, and the abhorrent actions of Elon Musk and Trump, who shut down USAID in February like it was a failing garage. The knock-on consequences for humanitarian programmes and lives around the world have been immeasurable - and little reported. My Linkedin feed testifies to the litany of job losses associated with this, and other funding challenges.

Throughout all this, I’ve struggled with the social isolation of being out of paid employment. Writing and freelance work is rewarding but of limited relational value to an extrovert.

Even in the last few days I’ve had to deal with my mother falling ill, causing me to drop my plans for Christmas Eve night and see in Christmas Day in the local A&E. I joked with a friend that it feels like the year is sneaking in another challenge for me ‘just for good measure’ before the year ends….

Lord, its been a year.

You could say some of this comes with the territory of my age. My mother is 87 and frail and teenagers get glandular fever (although just before A levels is rough luck).

But having a major stroke aged 55 is hardly common, nor is a rare sarcoma that has taken the loveliest, kindest, most positive woman I knew from us in the space of three short weeks. And whilst many people are discovering their older teens are neurodivergent, discovering it so late in her educational journey for my daughter (2 years ago) has meant she’s lacked the support she’s needed to prevent resulting burnout.

But despite – and often because of all this – there have been some incredible victories, joyous celebrations, growth, lovely little holidays and, most importantly, moral support from my friends and family.

My son defied the odds and came through with flying colours, obtaining the University place he wanted which he has deferred by a year for a much needed gap year/rest. He became strong enough to go travelling in the summer, even if it was physically tough for him at times. We celebrated by eating out in the restaurant in the Sky Garden at the top of the Walkie Talkie in London, a fitting place to recognise his incredible tenacity, determination and effort.

My gentle and gifted daughter also grew stronger over the summer, and with the help of a specialist coach and supportive tutors, she has returned to Uni with strategies and support to help her complete her degree in May - we hope! Seeing the beautiful and clever work she is producing is an added joy.

My sister in law has made amazing progress considering the doctor’s fears in the early days. Yes she has a long way to go, but thankfully she suffered no brain damage or loss of speech and is managing to keep in good spirits. I’m a believer in the power of prayer to support and heal, and so I reached out to believing friends and family, many of whom are still praying for her and my twin brother. I am so grateful for these gems in my life.

After a nail-biting 3 months of interview rejections, my husband found another IT contract role and is having fun re-building the McLaren Formula One website. I have been less successful in finding paid employment - it’s a tough market out there - but have decided to explore alternative career options involving some re-training. More to follow next year.

This year has also been a year of deepening my writing practice and learning the craft of memoir, discovering inspiring teachers, mentees and fellow writers here on this wonderful platform. Pros like and and (who I like to jokingly refer to as the ‘Head Girls’ of narrative non-fiction on substack) have inspired me, Lily in particular encouraging me to keep going with my project. I’ve met inspiring fellow writers like , , who have been wonderful to journey along with - or sit in the dark with at ridiculously early hours!

I’ve also been buoyed by connecting with fellow female carers like , Anna de la Cruz and Sarah Coomber, all kick-ass in their attitude to improving the lot of female carers in a similar stage of life to me. Victoria deserves a special mention for her tireless championing of each carer-writer here on Substack. , with her tender openness about her grief journey, has been a delight to follow, as has the brilliant who straddles all three worlds I follow on here: literary writing, caring and neurodivergent parenting. I’ll be writing a review of her brilliant new book, Unschooled, here later this year.

I continue to see a therapist whose compassionate guidance and insights have been both revelatory and a source of strength, as have been my incredible church buddies.

And so, whilst it’s been a year of the most ridiculous number of curveballs, it’s also been a year of resilience, growth, revelation, achievement and fun (cold water swimming in pools, lakes and the sea included). I go into the new year with a mixture of trepidation (my mother’s health is deteriorating more rapidly of late) but also hope for change and new seasons. My need to return to singing or to find another fun hobby that fits my week continues, knowing how essential it is for my mental health.

Someone said to me the other day ‘Let’s hope next year is better for you.’ Whilst I wholeheartedly agree, something in me knows that it may not be and that what I need to be hoping for is continued strength, love and hope to thrive through it.

And so in that vein, I wish you all a resilient, love-filled, fun and hopeful New Year.

I leave you with an image of my devoted dog Buster whose face is enough to melt any soul.

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Every year I take my mother to her favourite shop, John Lewis, for her annual Christmas present shop.

For those not from these shores, John Lewis is a smart British department store known for its tasteful products and attentive staff, a shop that the many of the middle-classes are drawn to like bees to honey. I jokingly used to refer to it as the Patron Saint of the Middle Classes.

My mother is a fully signed up John Lewis devotee and has shopped there most of her adult life. Most staple items in our house, from towels and sheets to lampshades and dresses had the JL label on. Stylish good quality is what she knows she’ll get, as well as staff who ‘actually know where things are!’

My theory for why it has such good customer service is a clever mixture of company culture and structure: being a stakeholder business, its staff, known as Partners, own a stake in the company, rather like shares. That’s every single one of them from the till operator to the director. I’ve always thought it a simple but genius idea. If you know your end of year bonus is directly linked to sales, wouldn’t you do the best job you could? In recent years, the bonus has drastically reduced as retail has struggled, and most recently, it has been cut altogether, bosses favouring increasing basic pay instead. I’ve wondered if it would affect the level of pleasant helpfulness of the staff.

Now, before you switch off thinking you’re reading an advertorial for John Lewis, bear with me! I’m setting the scene. Get yourself comfy….

The other week, I took Mum over to the nearby town where our nearest store is. It was one of those foul, wet winter days when all the car park slots and disabled bays were full. So my dear 87 yr old mum had to walk a decent distance just to get into the store. She walks very slowly now, leaning on a Rollator for support, her left leg bending perilously inwards, only just supporting her. Being the determined woman she is, she kept a steady course and reached her destination, albeit a little soggy and bedraggled.

Relieved to be in the warm and dry, we fell upon the beautiful gifts and tableware (my weakness), soon forgetting the time. Realising she was flagging, I suggested we go upstairs for an early lunch. In the lift, I noticed she had started to yawn, triggering a small alarm bell in my head. In the last few years, she occasionally suffers from a drop in blood pressure, leading to her passing out. Yawning is usually an early warning sign.

I was right. She had barely stepped outside the lift when she collapsed half onto the Rollator and half onto me as I lurched to catch her. Holding on to her waist, I looked around furtively for someone to help. Of course, at that moment, not a soul could be seen browsing ladies wear.

Wondering which would give way first – my back or my mum – a customer spotted my predicament and rushed off to get help shouting ‘I’ve got a bad back myself but hold on!’ Within minutes two members of staff appeared on the scene, one helping me to get mum onto the seat of her rollator, the other radioing a first-aider who arrived within a flash.

All female and in mid-life, they quickly saw what Mum needed - a wheelchair and a sweet drink. One was a manager, the other two seasoned shop assistants.

As my mum sat quietly recovering in the wheelchair, the trio chatted to us, asking what the problem was.

‘She sometimes has these mini-fainting episodes,’ I explained, ‘usually when out and about. In fact, the first time this happened was on this very same floor 3 years ago.’

‘Do you know, I actually remember that!’ replied the shop assistant who looked to be in her late forties. ‘I seem to remember you had thought it was the chilli in the Thai soup at the time…’

‘Yes, true!’ I replied, amazed at her memory. ‘That’s incredible that you remember! We’ve since worked out its a blood pressure issue.’

‘Oh we have quite a lot of people fainting in here!’ she explained. It was rather hot.

Wow, I thought to myself. How many stores would you find a member of staff still working in the same job after 3 years let alone remembering the face of another old lady passing out?!

‘Do you shop here often?’ the younger, very smiley manager with muted red lip stick asked Mum.

‘All my adult life!’ she laughed weakly back, her strength gradually putting colour back in her cheeks. ‘And my best friend from school was PA to the Chairman for most of her adult life. I have quite a history with this place!’

Smiles and surprise rose from the three. Realising their genuine interest, I decided to tell them a little more about mum’s history with the store.

‘This was the actually first shop my mum came to when she was able to shop after a serious car accident just over 40 years ago. Her friend who brought her recently told me the story.’

‘You mean Madeleine?’ Mum asked me.

I nodded.

Now 93 and living a surprisingly sprightly independent life, Madeleine is one of the angels who supported my parents in the early dark days after the accident. A Lancastrian with as much down to earth humour as kindness, she would drive mum to wherever she needed, be it the supermarket, parents evening, school concerts or even the local dump! (now rebranded as the Recycling Centre). She did this with another close friend for years until Mum found the strength and courage to learn to drive.

‘You had wanted to check out the January sales apparently, and you were particularly keen on a pink cardigan,’ I smiled gently at mum who nodded, her eyes moistening. ‘Being like me, she’s quite fussy about the colour pink,’ I explained to the women, ‘and insisted on going to the window with the cardigan to check the hue.’

‘My mother taught me that trick!’ mum added.

‘As she hobbled off to the window on her crutches, the young shop assistant gave Madeleine a look of barely concealed horror. Mum’s neck was in brace, she was missing a few front teeth, and her dark hair was aggressively short after being shaved to fit a head brace.’

Mum’s eyes filled, reflecting mine.

‘It was a bad accident….my father suffered a brain injury, my sister didn’t survive….’

Their faces fell, their eyes and voices murmuring a mixture of shock and sympathy.

I hadn’t intended to spell out the details knowing how upsetting it is for others.

‘And you know, I still have that jacket!’ Mum piped up, wiping her eyes with a tissue.

These were three kind-hearted women who I knew would appreciate this story of not just the astonishing longevity – and quality – of one of their products, but the astonishing longevity – and quality – of one of their most loyal customers.

The manager whispered something discretely in the ear of her colleague and turned to mum.

‘We’d like to give you lunch, on us. We’ll bring the food to your table, make sure you’re comfortable. And you can have whatever you want!’

It was our turn to be astonished.

Accepting it gratefully, we let them escort us over to the in-house cafe, weaving our way past the latest collection of designer jeans and cashmere jumpers, skipping the long line of Christmas shoppers queuing for much needed refreshments. Table service is not the usual mode of service at the JL cafe and so I found myself feeling like minor royalty as we had our food of choice brought to us (a quiche and salad and a mince pie). I decided to relish this moment, a carer and her elderly mother being waited on by the most attentive shop staff we have ever encountered.

Whilst the first aider took some details the other two left, promising to be back before we had finished our lunch.

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True to their word, they returned a little later clutching a small, paper gift bag.

‘We’ve got you a little something,’ the young manager beamed, her tidy ponytail swinging as she handed it to Mum.

Opening it, she found a designer set of two small Royal Worcester coffee cups on a tiny biscuit tray, a doey-eyed cat and a dog on the mugs, a fireside scene on the tray. Ok, so it wasn’t exactly my mother’s – or my – style, but the touching thoughtfulness of the gift more than outweighed the cutesy decor. We were so touched.

Here were three women who took incredible trouble not just to make sure my mother was ok, but to listen to her backstory, and to show genuine care and connection.

I can’t think of the last time I met a shop assistant in any shop that didn’t give the impression they had just walked in and knew less than I did, let alone remembered a customer who collapsed in their shop 3 years ago.

It was clear that despite the economic downturn, the JL company culture of pleasant, un-pushy, nothing is too much trouble staff had stuck, a rare gem in a world of zero-hours, low paid, untrained shop staff beyond.

Forget the Middle Classes, I thought, as I reversed into the back entrance to collect Mum. This shop should be called the Patron Saint of Loyal Customers and Frail Old Ladies.

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Have you had an experience like this at a store? I’d love to know. Please add your comments below. And thanks for reading!

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It’s Carers Rights Day here in the UK. Carers UK, a fantastic national advocacy and information charity, has used it to raise awareness of carer’s rights amongst unpaid carers with the campaign ‘Know your rights, Use your rights’.

You’d be forgiven for thinking that carers have rights, most of them being fairly minimal. The right to five days unpaid carers leave, flexible working, a flu jab, a paltry carer’s allowance, a carer’s assessment from the local authority and consulting us before hospital discharge isn’t exactly something to get overly-excited about. Carer’s allowance is so small (£83 p/w) and the threshold so low that if you get one small job you risk going over the limit and facing punishing penalties. Not worth it for most.

My carers assessment took over a year to happen, more if you include the effort it to took to lodge my request for one. Adult social services is so underfunded and staff so overworked that staff regularly fall long-term sick, adding to the wait time which is why mine took so long.

Not being paid for taking just 5 days off over the course of a year to look after someone else feels like a slap in the face from a government who pays little heed to the growing, hidden army of unpaid carers in this country (5.8 million of them in 2021).

I can totally understand why some carers have left cynical, disgruntled comments on the Carers UK social media posts today.

But the fact is, we do have some rights, and if it wasn’t for organisations like Carers UK and the wonderful local charity Carers in Herts, we wouldn’t know about them.

According to Carers UK

every day, 12,000 people become unpaid carers for a partner, family member or a friend – many of whom don’t see themselves as carers, often unaware of their legal rights and what they’re entitled to in terms of support and benefits.

I was one of those people who didn’t see myself as a carer. I mean, isn’t that someone who does 24/7 care, making meals, feeding and washing the loved one, trapped at home, climbing the walls and bored out of their brains?

I may have been spending hours helping my mother to manage her complex finances, do non-food shopping, rush her to the hospital in an emergency, handle correspondence with the solicitor and accountant, talk to the GP and handle a million small niggles or worries. And I may have been helping her to eventually persuade my brother (who lived with her at the time) to have an autism assessment, find an assessor who would come to the house post-lockdown, contact social services, hire an autism coach, and apply for a PIP. At the time, I was working part time in communications for an international humanitarian charity, and had two teenagers and a husband who were either being assessed for autism/ADHD or showing signs that they needed one.

That was when I started to realise that perhaps I was ‘a carer’….

It was a friend of my mother’s who suggested I contact Carers in Herts, a small charity who provides information, advice and workshops for carers. The kind lady on the phone listened sympathetically to my story and assured me that I was indeed ‘a carer’ with a big load, and that there were ways I could find support (many of which Carers UK are highlighting today).

Even though I felt others were more worthy of the label, I accepted it, knowing that my load was going to get much bigger and heavier. I was right. Accepting our situation is often the first battle.

Attending one of their workshops on Direct Payments led to me finding a support worker or PA for my brother, something that had proved impossible up till then. As I was no longer in work (my contract had ended and I deliberately didn’t look for work so I could focus on the complex process of helping my brother become independent of my mother) I opted for the in-person workshop rather than online one. I reckoned chatting to the other carers might produce some leads. It worked!

Carers in Herts also chased social services for me when they were impossible to get hold off, and gave me a Carers Card. Initially, I put it in my purse thinking I’d rarely use it (10% off dry cleaning bills?). But it was invaluable when I wanted to take my mother to see the show Guys & Dolls at The Bridge theatre in London as a one off special treat. I got a free ticket as her carer, and she got her seat for a fraction of the cost. (Check out The Bridge theatre people - it is THE most accessible, carer/disabled/diverse friendly place I have ever been to).

Carers in Herts have checked in on me every 6 months for which I’m so grateful. The person pointed out that the support I provide for my young adult autistic daughter counts as another person on my care list as she is no longer a child but needs more support than her peers. She was right. They may not be able to do much to lighten the load, but knowing they’re on the end of the line is something. You feel seen, heard. And as long as they don’t remind me to ensure I’m doing good self-care, I’ll continue to take their calls. I hate that phrase. (If you’re wondering why, check out Anna de la Cruz’s brilliant post The Problem with Self Care.)

Carers UK have also pioneered the innovative app Jointly that enables easy communication between everyone who provides care for someone.

But aside from all this, there is something innately important about charities who shout about, and for, our rights, even if they are small. I used to lobby for the rights of those living in conflict zones across the globe in a former job, so I’m well versed in the need to call things out for what they need to be, even if they’re not yet being respected.

And the fact is, we also need to use the rights we do have if we’re to get better rights - or worse, lose them. With the rise in popularity of the Reform party who promise to slash benefits on a scale that would make the Tories look cuddly, this is a serious and urgent issue. And this is not just for ourselves, but for our own children when they come to be in our position.

For example, I now ask companies if they do special offers for carers. I see a lot of ‘reduction for key workers’ about but nothing for carers. By starting to ask, and voicing our needs, we start to get noticed. This worked for me this summer when I went to a small festival. My husband was out of work, as was I, so I sent an email and asked if being a carer would qualify me for the student/unemployed rate. They agreed!

I know its not easy to ask for flexible working at a time when jobs are hard to come by, or if you have a tough boss. But Carers UK are there to back us up, as should our MP if it comes to it.

The fact is, you never know who, or when, someone will become a carer. I’ll be sharing Carer UK’s fact sheets and resources with my brother who is adjusting to becoming a carer himself as his wife recovers from her stroke.

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It’s been a month and 3 days since my sister in law had her stroke - or rather two strokes within 36 hours. And it’s been two weeks since I wrote this post about those first nail-biting 11 days when we didn’t know if she would live.

In the last two weeks she has made an incredible recovery, going from the highest level of critical care (Trauma Unit) to the lowest (Rehab Unit) at a speed that the doctors had not expected. All tubes except for a nasal feeding tube have been removed, she is able to talk and even text with her right hand.

We are all deeply relieved, quietly thankful.

She is, sadly, unable to move the left side of her body or the right side of her face, and her right eye turn inwards which is causing her to have double vision. I find this the hardest thing to see. Being a voracious reader, I know how tough this will be for her. Thankfully, a patch placed over her glasses enables her to see for now.

We don’t know when she will be home, but plans for her to be moved to her local stroke unit are being spoken of. All good progress. Physios are hopeful about stroke victims, knowing how brilliant our brains are at compensating for damaged cells. We can only keep hoping, and praying.

Returning to a more normal routine this week, I’ve had the chance to take a breath, to let the events of the past month (and beyond) percolate, to process the sadness, the trauma and the surprisingly special moments. And to sleep.

I find I am sitting with it, respecting what feels like a liminal space. I process times like this through writing, listening to music, reading and walking in our local fields. The soft light and colours of late autumn lift my soul, a rich palette of oranges and browns swirling around my feet and above my head. Writing is akin to mining for me, unearthing rich insights, transforming and enriching me in the process. I’ve even had a chance to read ’s recently released book, Into Being, on the transformative power of memoir. The wisdom and insight it has brought has been profound and timely.

I realise I’m carrying what I can only describe as a sense of bruising. Staring at potential sudden death or disability of a loved one wrenches the heart, the shock leaving an undeniable mark. Watching your twin brother go through such agony, the person you have already walked with along ‘the valley of the shadow of death’, is a double blow. Frequent reminders of past trauma have reverberated, like after-shocks, a strange sense of history repeating itself. Spending time in Addenbrokes’ Trauma Unit, what felt more like the tent from TV series M.A.S.H, leaves an imprint that is hard to shake off. ‘Brutal’ is the only word to describe walking past beds filled with young men and women in various states of comas or near death, their relatives in heightened states of distress.

Returning to ‘normal’ life feels a little like walking off a battlefield and into Sainsbury’s. It jars.

But in the same way that I have witnessed the brutality of life as a teenager and now again as an adult, I have also found gems within the dirt. Gems of connection with family have emerged, hearts have been bared, and opportunities to show love have opened. Discovering an energy I didn’t know I had, a clearheaded laser focus on the need at that moment, was a revelation. My past experience, and my processing of it, meant I was equipped, ready and able to be that support. Seeing the progress that has been made in ITU culture in 40 years has been so heartening – under 16s are barred, and specialist nurses are on hand purely to support family and patients.

Through it all, an uncanny sense of the past colliding with the present has resonated, tying threads between 1985 and 2025 that has felt as mysterious as it is painful, strange as it is special.

A sense of being held by love abides - by friends and by the divine. Prayer’s beauty has been evident. And I sense an opportunity for a new chapter amongst the rubble. That’s what hope feels like right now. And for my sister in law to continue to get stronger.

For there is brilliance in the dust and dirt. Diamonds do grow in dark places.

Some of those diamonds are my friends, who have shown me kindness in their thoughts, prayers and their gifts for my birthday last weekend. Lunch, dinner, tea, books, even a day pass at a friend’s luxury spa. I felt the love. I also cherished kind words scrawled in funny and hand painted cards from my family.

Celebrating can feel disloyal at times like this. How can we have fun when loved ones are suffering? But I’ve lived long enough, and been down this caring road far enough, to know that looking after ourselves is never a betrayal. It’s important to do if we’re to keep on being the support that is needed by those we love. And that number has increased for me, not lessened.

I even went to see the poignant and very funny Every Brilliant Thing, a one-person comedy play I’d booked in July. Seeing my all time favourite actress, Minnie Driver, in action just metres from my seat was a joy. Enlisting the help of the audience (even me with a tiny part) to enact a story about mental health, we laughed and cried. It was a timely tonic. Go and see it if you can!

Take care of yourselves and your loved ones. For, as Charlie Mackesy wrote in the introduction to his first book ‘The Boy, the Mole, the Fox and the Horse’, released only months before the covid pandemic turned the world on its head,

‘The story “happens in the springtime where one moment snow is falling and the sun shines the next, which is also a little bit like life — it can turn on a sixpence.”

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I had planned to write a post about my experience this year of finding support for my daughter as she recovered from autistic burnout, specifically the journey it has taken me on in understanding quite how complex and hidden her needs are. I had also planned to write about coaching our teens in making life decisions and the impact of the English education system on our children’s mental health. But life had other ideas.

Since my last post, when I wrote about my son’s travels around Eastern Europe, the following events (bar one) happened:

• my back went into spasm, laying me low for a 10 days

• my daughter moved back to her University town, settled into new lodgings and and re-started her final year of her Illustration degree

• I met with various professionals and authorities to put in place support for her studies and daily living

• we coached our son in making the difficult decision of whether to go to Uni this year or to take a much needed year out.

• I helped my son prepare to leave home as he made the decision to go with a week to go. Then helped him unpack those crates after he wisely made the (even more last minute decision) to NOT go this year.

• I submitted an application for PIP (a non-means tested disability benefit) for my daughter. After pushing back the deadline several times this summer, this was a hard and fast deadline.

• I supported my daughter as she dealt with the shock of being told by her new landlady that she needed to move out of her uni lodgings as her room was needed back….she’d been there only 3 weeks.

• we celebrated when my husband landed a job after 3 months unemployed! Overjoyed and exhausted, we booked a last minute, two night break at a country hotel in the Surrey Hills. It was bliss. Here’s a few photos:

After two years of countless challenges, it felt like quite a month. Two weeks ago, I had joked with a friend that she needn’t bother with subscribing to TV streaming services when she has all the drama of my life to watch. We laughed.

But then tragedy struck.

My twin brother called me 11 days ago to say his wife had suffered a major stroke, going on to suffer two more in 48 hours.

Needing two operations then put on life support for four excruciating days, none of us knew if she was going to make it or not. She is only 55.

To make it worse, she had to be moved from the large regional hospital in Cambridge to one that is 1hr 30 mins drive from their home for an emergency operation owing to her having another stroke at 3am when the relevant unit in Cambridge was shut….. I spent much of last week driving to the hospital in Essex to be with my brother and nieces, then driving them home at the end of the day and then back home myself. A round trip of about 3.5 hours in the car.

Thankfully her condition improved enough that she was able to be returned to her home hospital in a special ambulance. She has made tiny but encouraging steps of progress each day, gradually coming off sedation, and, just today, off the ventilator, much to our huge relief. This means she can be moved out of the Trauma unit, a brutal place with so many critically injured patients it was more akin to a war zone.

The whole thing is absolutely heartbreaking. I cannot begin to explain how shocking it is to see her in that condition.

My heart breaks not just for her but my twin brother, and my two nieces, aged 20 and 26.

It would be hard enough had my brother and I not already had the traumatic experience of visiting our parents in Intensive Care back in 1985. They lay there literally fighting for lives after my father suffered a brain haemorrhage and crashed the car whilst driving the whole family (except me) home from a wedding along the M40. My seventeen year old sister was killed instantly.

Echoes of the past have been reverberating around me and my twin brother all week. Sitting next to him whilst we looked on at his wife, lying as still, lifeless and tubed up as my father had been 40 years ago, brought us to a place that neither of us have dared talk about with each other since. We were, after all, only 14 at the time.

Writing about these events in my memoir over the past year has meant I am in touch with those emotions, and am seeing a therapist to help me along the way. So I felt able to face them, even to talk about some of those memories with him for the first time in four decades. It was, paradoxically, both a deeply painful, yet special, moment.

As the last 11 days have unfolded, I’ve encountered other echoes of that period, triggering deeply painful memories. It has been tough.

So, how am I coping?

For the first week, I coped by being the support I knew I could be for my dear brother. Refreshed after a few days away, I was fully able to be there for him. I’ve found I’m quite good in a crisis, finding a clarity and focus that’s needed in the moment. It was even more so last week.

In a strange way, I felt as if I’d been waiting for this moment all my life to help him.

I knew I needed to be with my nieces and my twin brother as soon as I could. I know how traumatic it is to see your mother so helpless, dependent on machines, and tubes and bleeping things simply to breathe. I know how distressing it is to not be able to recognise her because of the bloating effect of the drugs – and in my mother’s case, the disfiguring injuries.

I also know what it is like to not have any close relatives around to sit with me or give me a hug. I am his only sister, and their only aunt, and so no one else could fill that gap. I also know how incredibly thankful my Granny was to be driven every day to the hospital where my parents were that autumn in 1985 by a whole rota of friends, an 80 mile round trip.

Knowing my own need of support, I reached out to friends to let them know, for moral and spiritual support. I asked them, as my cousin said, to ‘storm heaven’ for my sister in law, brother, nieces and daughter, and for myself. I’m a big believer in the power of prayer. We all desperately need God’s grace, comfort and love, as we go through this ‘valley of the shadow of death’.

I’ve also leaned on the perspective that I’ve gained from my family’s tragedy: the extraordinary strength of the human spirit to survive, the surprising, and essential, kindness of strangers, and the power of prayer to sustain.

I feel we’re already seeing the effect of those prayers, and not just for my sister in law. My daughter messaged me yesterday to say she has found accommodation - and with the very person she’d hoped to lodge with months ago but who already had a lodger. For some reason, the lodger hasn’t returned! We are beyond delighted.

But as the days have worn on, and the initial emergency is over, I’m also taking care to look after myself. I’m taking the time to rest, sleep in, go for walks where possible. I’ve pressed pause on job hunting, created whatsapp chats for updates to ease the communication burden. Similarly, I’m liaising with my mother’s carers and brother’s PA to help support them as they process the news (the ripple effect of shock is wide). I’m leaning on my wonderful husband, and son who is, thankfully, available to dog sit or cook rather than being at University, struck down with fresher’s flu. Thank God for that decision!

I’ll be back here with an update when I feel able. But for now, I’m taking it one day at a time. To keep hoping, praying, and believing that good things will come out of bad.

It’s all we can do.

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My son stood on the doorstep, his 6ft frame blocking out the light with his huge black rucksack slung across his shoulders. He had that rugged look that told of adventure, long days on the road and no mother to make him wash his clothes.

The quiet sparkle in his eye and his gentle smile told me he had had a good time, but was equally happy to be home.

I squeezed him tight ‘Welcome home!’

Had it been only three weeks since he had left the house at 5am to set off inter-railing with two mates around eastern Europe? It had felt more like six. Despite him being a bit of a cave dweller when at home, holed up in his room either asleep or on his computer, the void he had left was big.

It was the first time our son had ventured off travelling on his own – bar a short trip to Portugal with his girlfriend the previous month. We barely knew his schedule, he hastily rattling off country names (no towns) to us as we helped him pack and gave him last minute instructions on keeping safe. To be fair, I think he barely knew where he was going himself as the others had booked the accommodation.

Those of you from the UK will be familiar with this rite of passage for 18 year olds after finishing their A levels and secondary school. Either your teens have done this or you did back in the day, like me in the summer of 1990.

I’d just finished my first year at University studying Geography. I went with a good male friend (not boyfriend), the only person in our friendship group who was free to go. Back then, you bought one ticket for a month and hopped on any train you liked at any time of day or night across what was a considerably smaller geographical areas of Europe.

The Iron Curtain had fallen only 7 months earlier. I have vivid memories of watching images of Berliners literally breaking down the Wall on the TV in our Uni halls of residence common room, just a month into my starting my degree. I’d only just turned 19, but I knew this was a momentous occasion.

With Eastern Europe suddenly open to the world, Prague was very much on our destination list, along with Venice, Florence, Vienna and Paris (all romantic cities I now realise). Prague ended up being the highlight. Its Soviet-style bureaucracy, workers’ canteens (where no one spoke English) and dour faced women, who stared at us on the tram like we were aliens, never failed to entertain.

Comparing my stories of Prague in 1990 with my son’s in 2025 kept us all amused as we ate dinner. His stories of cavernous night clubs and supermarkets three stories underground, corner shops selling tazers and knives for anyone to buy, and, of course, cheap beer, possibly the one thing that remained the same from my time there. It was 20p a litre back then, a whole 2 euros now.

By strange coincidence, whilst my son was traversing the mountains and hills of Austria, Slovenia, Croatia, Serbia and Bulgaria, I came upon an old notebook that I had taken with me on my inter-railing trip. In it are scrappy lists of the cities we had wanted to visit, a long list of names of friends and family who I must have sent postcards too (much to my children’s amusement) and a sketch by my friend Mike of us both on the first stretch of our trip. He no doubt did it whilst we were waiting for the ferry.

It all seemed so simple and innocent. We barely pre-booked any accommodation. Spontaneity was part of the attraction. Although it was less so when we found hostels were full and we were forced to share the only free room in Prague with a blonde Australian bloke called Bruce – I kid you not. (He was a perfect gent btw). With no google maps and few people speaking English in many places, we had to rely on our nouse and instincts.

The most hilarious, and successful, instance was the time we needed to find St Peter’s Square in Rome. Finding there was no room in the hostel in Parma, we hastily changed plans and had jumped on the night train to Rome (safer than sleeping on the streets).

As Rome hadn’t been on our itinerary we didn’t have a map. We arrived early on a Sunday morning and true to Catholic Italy, nothing was open and no one was around. We hopped on a tram heading for Centro Citta, but then realised we didn’t know when to get off. Being raised a Catholic myself, I realised that any nuns on the tram might just be heading for St Peter’s on a Sunday morning. So we decided to follow that nun!

Jumping off the tram, we chased the two ladies in white along Rome’s busy streets, around corners and down a side alley eventually emerging into St Peter’s Square. Bingo. Boy did we laugh.

My son’s group, by contrast, had the trip mostly planned out – which makes complete sense when you want to go hiking up 5000ft in Slovenia’s mountains and sleeping in cabins along the way. They also had contact with us whenever they wanted and vice versa. As my son isn’t the most communicative sort, I couldn’t resist the occasional checking of his whereabouts on Life 360. According to the app, he was at one point racing along at the speed of a Formula 1 car (86mph) on a train north of Nuremberg, and another time, walking dangerously close to a ravine in Slovenia at 8pm at night. That was the point at which I decided to stop checking the app!

As my son sat on the sofa last Tuesday, his feet soaking in a tub of hot soapy water to soothe the multiple blisters covering his soles, I realised that our shared love of travel had become a new point of connection. I came alive talking about independent travel with him, remembering the buzz of it. Before having children I used to travel a lot, across Africa, parts of Asia and Latin America, as well as to Australia visiting my husband’s family. The joy of experiencing new places, cultures, food, the sheer excitement of exploring, is one of my favourite past times. A far cry from my life right now.

And whilst I found frightening his stories of near misses on mountains, sickness brought on from drinking dirty water and living off a diet of processed sausages and coke, I loved that my son was getting out there, beyond his bedroom, finding life, finding himself. His older sister has no inclination to travel like him owing to her sensory processing issues (noise, lights, crowds, constant change exhaust her) and so this was our first experience of a travelling child.

At one point, he pulled out a Bulgarian newspaper out of his bag, and proceeded to read many of the words, deciphering the meaning behind all the pictures of Putin, Trump and weapons. He has been quietly teaching himself Russian for years on Duolingo, not telling us for years. At last he could experience a country that spoke a language similar to Russian.

But something else more profound occurred to me: I sensed he had crossed the threshold from boyhood into manhood. Whilst travelling for 3 weeks to new countries and cultures, he had learnt to navigate interminably long train and bus journeys, missed connections, snoring strangers and lumpy beds, physical exhaustion and illness as well as strong egos within the friendship group. All without us. And he had returned smiling, having tasted fun, adventure, and true independence for himself.

In two weeks time, he is due to cross another threshold: University. I always thought this would be the first threshold that he’d cross toward independence, and yet I’m realising how this experience of travelling across eastern Europe has, in fact, been an equally important gateway to him becoming his own man.

He has spent most of his summer hovering on the threshold of this major life decision, deliberating over whether to take a year out or not, finding neither path easy to choose between. He’s battling between the need for rest (after the past gruelling 6 months of doing 4 A levels whilst recovering from glandular fever), with the risk of feeling adrift, without any firm plans for the year and left behind from his peers who are moving on. We’ve tried to coach him rather than direct him but the closer the deadline has got, the harder this has been. And so we gave him a deadline of yesterday. I feel he’s made the least bad decision, all things considered.

And so we are now adjusting to what the crossing of this next threshold will look like for him and for us – we will finally become empty nesters, even if just for a year. And right now we are helping our daughter to get mentally and emotionally ready to return to her Uni town this weekend to restart her final year. I’ll be able to focus more fully on job hunting, getting my son ready for Uni, supporting my mother with her financial planning issues, and my husband on the difficult road of continuing unemployment.

Life feels far from empty right now.

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Hello! As August is drawing to an end, I’m returning to this wonderful space to write. I decided to take a break over much of the summer, needing to remove any extra pressures on me whilst making the most of the slower season, a kind of sabbath. I’ll try and catch you up here.

Summer has been a tale of two halves for me.

The first half of my summer was a beautiful one, peppered with precious breaks away in divine places. Mallorca with girlfriends for 4 nights; Dalkey on Dublin Bay in May to take my daughter to spend time with my godparents; Dorset with my mother in June (which I wrote about here); and lastly, a week at the gem of a place called Hope Cove, in south Devon with my family in early July. We slipped away as soon as my son had finished his gruelling A levels and enjoyed quiet beaches and blazing sunshine. It was bliss.

I had never expected or intended to take so many breaks and so close together, but the serendipity of how it worked out was wonderful, considering the tough autumn-winter-spring that had brought me to my knees.

The sun has shone for each one of those holidays, all of them by the sea. The summer and the sea never fail to refresh me, the freedom and warmth of the season bringing life and vitality to me. I adore walking along cliff edges, staring out into the great expanse, or slipping into the water, whatever the temperature - and believe me, its seriously chilly in Dublin Bay in May. Swimming in open water for me brings the deepest sense of being truly ‘in’ nature, the cold water enveloping my body, my perspective brought right down to the sea birds who bob about beside me.

I always emerge from the sea invigorated and with a smile on my face - except for the time I swam within metres of Compass jelly fish in Hope Cove which frightened the life out of me, and the morning our cute but very clingy dog, Buster, decided to swim out to me and my daughter in that same bay.

Planning on a quick dip on our way back from the trip to the local bakery for morning croissants, we had left him tied up in the tiny beach where people swim. The tide was high, so we felt he was safe as he rarely ventures in and others on the beach were looking out for him. But after swimming for a few minutes, we turned around to check on him and realised he was missing. To our right we noticed a woman on a SUP waving at us with what looked like a small black bag on the front of her SUP (I can’t see far without my glasses)

‘Is this your dog?’ she called out. My heart sank and both Ciara and I swam faster than we’d done in our lives to discover a soggy, bedraggled dog on the front of her SUP. Apparently his lead had become come untied and, in his panic at thinking we were leaving him for ever, he leapt into the water to join us. Realising he wasn’t going to catch us up (he’s not a natural swimmer) he made the smart decision to abort his mission and headed for the SUP board.

He immediately, of course, won the hearts of the lady on the SUP and the other swimmers but I, of course, felt like the worst dog owner in the world and vowed never to leave him on the beach again unattended.

I have used these short breaks to intentionally switch off as much as possible, go slow, pick up a paint brush, and reflect on my boundaries and self care (I’ll be writing about my thoughts on that later this autumn). Refuelling my tank has meant I’ve been in a much better place to handle the challenges that were to come in the second half of summer.

It started with my husband losing his job at the start of July thanks to a large retail company he was working for slashing hundreds of tech jobs. A highly experienced and valued IT contractor, he rarely has trouble finding new work, but the job market is tough right now, and he’s the wrong side of 50. He’s still looking.

This has accelerated my work search too. I’ve been out of paid work for nearly 2 years and am feeling the deficit not just financially but socially and professionally. I miss working in a team working toward goals that are unrelated to my family issues. The comms advice I’ve provided for a local mental health charity has been great for keeping my hand in professionally. I’ve loved working with the director who is at a similar stage in life to me. Being a tiny charity, they don’t have the budget to pay me, so I may have to let that work go.

Finding a role thats fit my skillset isn’t easy. My previous role was rather niche, and the humanitarian sector has been decimated by aggressive cuts, so I’m doing a lot of thinking about how to go forward.

Then a few weeks ago, my mother had another fall. In fact she had two. This time, she has sustained a hairline fracture in her hip, poor thing. So it was back to waiting for ambulances, making phone calls to doctors and community physios, juggling streams of whatsapp messages, and deciphering the Kafkaesque bureaucratic hurdles of our local hospital once again. No operation is needed, thankfully, but she needs to walk on it for it to heal and that requires more people on hand to ensure she is safe. I have increased carer hours whilst being on hand myself when needed. Convincing her of the need for those hours has been less easy.

All things considered, she is doing well, but the speed of her decline is accelerating; it feels very much like another step down in the trajectory that is inevitable. Obvious to us, less so to her.

In amongst this I’ve been seeking support for my autistic daughter, who is returning to university this September after a six month pause in her studies. Anxious about returning to study and independent living, we have hired the services of a specialist to assess her and give her coaching but which has added its own complexities to my days.

On top of that, at my daughter’s instigation, she and I have been working on an application for two benefits: DSA (Disabled Student Allowance) and PIP (Personal Independence Payments), a state benefit for benefit for those with disabilities or who need extra support for independent living. Having gone through this process already for my older brother, I am familiar with the process, but it is a time consuming and an emotionally taxing activity. On the plus side, I’ve come to understand my daughter’s needs much better, as her answers have revealed the extent of her difficulties with daily living - most of them hidden to the average person.

Lastly, a 5 yearly health check with my doctor revealed the need to reduce ‘bad’ cholesterol, likely caused by comfort eating or stress. It’s an early warning sign: I need to look after myself.

Putting all that aside, we received wonderful news 2 weeks ago when my son received stellar A level results. We couldn’t stop smiling all day at how brilliantly he had done after the incredibly hard year he’d had. Working through brain fog and exhaustion after contracting his glandular fever in the New Year is no joke when you’re studying 4 A levels need top grades to do what he wants to do next: Discrete Maths (a Computer Science and Maths degree).

Filled with pride at the level of tenacity and determination he showed, we had planned to celebrate somewhere special no matter the results. The brasserie at the top of the Walkie Talkie skyscraper’s Sky Garden was it. Toasting him 150 metres up above the streets of London felt appropriate for such a high achiever!

Having slept most of this summer, he is now off inter-railing for 3 weeks around Eastern Europe with two mates enjoying some very well deserved freedom and fun. Just before he left, in true last minute teenage boy style, he announced his intention to perhaps take a year off with a view to applying to a different university. The former we were hoping for, the latter was unexpected and creates more uncertainty and calls round universities in his absence, but we support him in whatever he wants to do. It also means we are now looking at no longer becoming empty nesters next month.

And so as I enter the new season that is autumn, with all its fading beauty, I find I have a rather full, and ever changing, plate once again. This state of flux and uncertainty is, by far, the hardest thing about life right now. Handling constant change and juggling multiple needs is something I am competent at dealing with but it is undeniably very taxing when it goes on for years. How often I can write here may need to change, particularly if I am to keep working on my memoir. Again, time will tell.

One thing is certain: I am going to need every strategy in the book to keep my boundaries firm and myself healthy as we head into winter.

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A few weeks ago I mentioned that I’d be reading this amusing novel on the recommendation of a writer friend. 'The theme might be up your street’, she wrote. In a previous post I said I’d take a read and let you know what I thought.

First up, don’t be misled by the title (my mistake). Whilst it is about a woman in midlife fighting raging menopause and sandwiched between children and parents, those children are fully grown, independent adults and those parents aren’t yet dependent on her. She maybe sandwiched, but that sandwich is not the type that we carers have come to understand it to mean.

In some ways, my friend was wrong to think it is up my street. I mean reading a novel about someone struggling with being an empty nester, craving the toddler years, whose children are mature, fully independent adults full of banter and fun, was hardly what I was needing in what is a very Sandwiched season for me.

But, on the other hand, she was also right. After all, Rocky (the protagonist and Mum) is dealing with the maelstrom that is menopause, and struggles to not feel responsible for everyone’s happiness - especially on holiday. Sound familiar? My friend must have known I would howl with laughter and feel entirely seen when Rocky expresses her anguish at the pattern of conversations with her husband:

‘We’ll exchange a few words…a seemingly slight disagreement. Only then, rage fizzes up inside my rib cage. It burns and unspools, as berserk and sulphuric as those black-smoke fireworks from childhood: one tiny pellet, with seemingly infinite potential to create dark matter - dark matter that’s kind of like a magic serpent and kind of like a giant ash turd.’

Or this:

‘Why do I have to be in charge of every single thing?’ I hiss…. It’s so annoying the way women have to do all the hard things and take care of everybody and pay attention to everything all the time. And then be soft and open and fxxkable’.

The exaggeration is as relatable as the emotion.

Oh and the way she describes memory loss? I was in tears when she struggles to even remember one name of the four Hogwarts Houses in Harry Potter, a test set her by her hilarious daughter on the way to the beach. Dumbledore, Whiffenpoofs, Snivelin and Weaslyton are the best she can summon up.

‘All the names of everything have oozed out and away from the drainage holes that menopause has punched into my memory storage,’ she bemoans.

And yet, I love the way that Rocky, despite her highly inflammable nature, is a self aware character, equally dissecting her own faults as those around her who she dearly loves. The way she reconciles her relationship with her irritatingly unflappable and highly sexed husband, is both realistic and tender. I love the way they argue and make love in equal measure,

Despite what I said about not wanting to read about fully-fledged, independent children, I did in fact love the tender way she would marvel at her adult children, puzzling at how she and her husband had created such skin-perfect, beautiful, well adjusted children. Her relationship with her funny, take-no-prisoners daughter is lovely to read, reminding me of the rich and surprising ways our children can often speak into our lives. And as for her description of empty-nesting? It contains some of the funniest lines in the book.

But possibly the most relatable paragraph has to be the scene when she is taking a break with her daughter on a bench outside the hospital where her mother has been admitted in a minor emergency.

‘I try to stay vigilant because everybody’s health and safety depends on it and, also, if I relax now I will fall asleep for the entire rest of my life and wake up dead. I am just happy to be sitting here in silence with this perfect human, not managing an imminent crisis.’

Lord, how I related to that one sentence! It sums up much of how I felt for so much of this year. (Thankfully things are less fraught for me since end of June - various crises have abated and I feel a different person after a few short breaks. But that’s for another post…)

Laughter aside, the story does contain some more challenging themes around miscarriage, abortion, grief and the hard choices we make as mothers. I mention it as a trigger warning for those of you might not want to go there right now, but it does make for a richer, more interesting novel.

One other caveat for those of you who aren’t American: it is full of cultural American references, some of which I simply couldn’t translate. But on the whole I could - and very refreshingly, they’re not super rich Americans staying in an uber-stylish holiday home in Cape Cod. Thank you, Catherine!

So, if you want an easy, funny read for the holidays, you might like to throw it in your suitcase alone with all the other books on your TBR pile. It’ll give you some light relief from all those memoirs if you’re anything like me.

And on that note, I leave you with this cartoon that could have been drawn for me…

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We took her out for lunch at a special pub on the outskirts of town. Like her, it is elegant and has a long history. Built by a certain Lady Frances Grimston when she, too, was in her 80s, it has gloriously high ceilings, polished wood fittings and a curved set of shallow, carpeted stairs that lead you up to the loos - the type that actually make me feel like a refined lady when I tread them!

Normally it is just the two of us who go out for lunch if her birthday falls on a midweek. But this year, we all went. Mindful that the opportunity to celebrate her birthday is diminishing rapidly, we wanted to make it special. With every passing year, birthdays at her age become increasingly precious. Like a gold mine that is reaching the end of its reserves, we don’t know quite how many more there will be to celebrate.

But there’s another reason why we made the effort. It recently dawned on me that when someone reaches a stage in their life where they are almost fully dependent on others, there is a risk that they might not feel valued for what they give to others - both now and in the past.

Conscious of this, I suggested we each write something in our cards about what Granny means to us instead of dashing off a ‘love from’ kind of thing.

‘You’re very good at cards,’ she smiled, clearly touched, her eyes moistening with emotion.

I’ve always thought that cards are the perfect opportunity to express things we often find difficult to say out loud - or for others to receive publicly. Birthdays are a unique opportunity to celebrate a life, and words are a crucial part of that - they’re one of the 5 love languages for a reason.

Sipping our drinks under the verandah overlooking the sweeping lawn, we talked about how important it is to say these things before a person dies; leaving it till the funeral always feels a little late - and oh so very British!

After consuming our prawn sandwiches, burgers or beetroot hummus (take your pick depending on age or gender), we gave her our presents. I always give her sweet peas from the garden, sweet-smelling, pretty flowers that remind her of her father who gave them to her every year. But I had a particularly special present, one I was eager to hand over, but hung back till the last.

‘Ma foi!’ she exclaimed in the manner of her French teacher at school as she unwrapped the brightly coloured wrapping paper. ‘Wow. I hadn’t expected that!’ she beamed.

In her hands was a framed, black and white photograph of her in her twenties taken by my father when they were courting.

I came across this photo earlier this year almost by accident, kept as it was in a drawer of old photos in my mother’s house (why it lay there unframed, I’ll never know). I was captured by its beauty and resonance.

Reclining in a rowing boat in Hyde Park, her arms draped whimsically over the sides, my mother is elegant and radiant. She is dressed in a 1950s shirt dress, the type that is now considered the height of vintage fashion. The fabric, the cut, the shape, it was all quintessentially Festival of Britain and quintessentially Mum, with its smart evenly spaced pattern and feminine flow. Her head is tilted toward the light, as if under a spot light, revealing perfectly smooth skin, her tiny waist accentuated by the belt. When she told me (on the day I had found it) that it was she who had made the dress and that it was my father who took the photograph, my love for the photo and admiration of its subject deepened. She wasn’t the only one.

‘Wait, Granny made that?!’ my daughter exclaimed, looking at it intently, pride rising in her eyes.

Young, in love, and clearly content, this is my mother in her prime. The years of raising four children under 5, two of them twins, had yet to draw lines in that smooth skin. The terrible injuries that were to come 23 years later from the car accident were yet to twist and break her, ones that she would bear so admirably and recover from so remarkably.

As photos go, it is not just exquisite, it is priceless - and not simply because of the subject and what it captures, but who captured it and how.

A keen photographer and a recently trained architect, my father’s passion aside from building design was the camera. Studying the photo closely, it is easy for me to spot his skill and flair - the composition and lighting is just right. With the kind of camera and equipment my dad would have had back then, this is remarkable for an amateur outside of a studio setting.

Knowing my perfectionist father, he would likely have asked my mother to turn her head to exactly the right spot, and waited for the rowing boat to appear in the far left corner, whilst ensuring the opposite side of the lake was also visible, giving it perspective. (Patience is one of the many qualities my mother would have learnt to develop fast living with my father….). I also know he would probably have cursed the damn duck that is positioned just above my mother’s head and that, no doubt, he didn’t notice till it was developed!

And so, although he is not in the photo, my father is all over it. It is, in fact a perfect, dare I say snapshot, of my parents in their prime.

Giving a present like this meant the conversation could be centred around my mother and her happiest days in her twenties, something that is precious for my young adult children to hear. What colour was the dress? (brown, black and white). When it was taken? Probably 1961 or 1962, before they were married in 1963. This led on to conversations about where they got engaged (Dublin) and stories of how she was introduced to his enormous Irish family.

‘Being an only child with few cousins to speak of, I was rather overwhelmed!’ she laughed.

But I know they instantly loved her, and still do.

Little did she know at the time just how much love they would show them those 23 years later. One small example: my father’s favourite cousin, a softly spoken nun who was the head of a large Order of nuns, regularly visited my parents shortly after our family’s car accident that hot September in 1985. My mother had been hovering between life and death.

‘Of the little I can remember of that time, I can still clearly remember Nan tenderly placing a cool flannel on my head, soothing me with her kindness and, no doubt, prayers,’ my mother said.

Never judge a nun until you’ve known one is what I always tell people.

They’re often gold, just like my mother.

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As many of you will know, one of the people I care for in my family is my elderly mother. Turning 87 next month, she is an elegant, intelligent and kind lady who sadly has multiple health issues and disabilities that have rapidly worsened in recent years (as shared a little in this post).

The kind of care I provide isn’t the hands-on personal type of care, for which she has two hours of care a day. With some help from my twin brother, I cover what I call ‘everything else care’. This ranges from the high level (managing the carers, her finances, dealing with solicitors or accountants and planning for the future) to the mid-level regular issues (non-food shopping, communicating with the GP, sorting out issues with her ‘tech’ (TV/phone etc) to the daily which often includes being a listening ear for her regular health issues or questions about frankly anything! My personal favourite was her whatsapping me when she had accidentally turned down the brightness on her phone:

‘Mu phon hazz gonw farc - I kan’t sea wht im typn!’

The task that is hands-down my favourite (if you can call it a task) is to organise and accompany my Mum on an annual break away in the UK. Last week was our week - and boy was it just what the doctor ordered!

We both adore the sea but live miles from it. As it is her only holiday, we make it special. I book a hotel right next to the ocean with fabulous views of the Dorset coast, a sandy beach to swim in for me, a room with a view for my mother and several divine places to eat nearby. The sun nearly always shines (yes really, even though this is the UK), I swim everyday, she has breakfast in bed, we eat out. It is heavenly.

This year was just as wonderful.

As you know, I was close to tipping over the edge after the most challenging winter/spring I can remember, as described in my previous post. I don’t think I’ve needed a break quite like I did this year.

Having a room of my own, waking to the sound of waves lapping below me, enjoying a dip in the cool clear sea before breakfast were like a balm to my over-stretched soul. I even got my paints out and attempted a watercolour (how could you not with a view like this?)

The lack of responsibility was almost intoxicating. Apart from being chief driver, sherpa and medication-checker, my usual load was lifted. Gone was the cooking, shopping, planning, emailing, phone call handling, whatsapping, list making or tidying up. No more the collecting of coke cans that grew like a colony in my son’s room as he studied for his A levels. Gone too was the decision making, or emotional coaching, being a shoulder to cry on for my daughter, or general mental carrying of loads.

You get my drift.

Before you think I’m writing this post to make you all jealous or as an excuse to post beautiful photos, bear with me!

We’ve been doing this for the past 5 years and I’ve realised over that time quite how precious this week is. This is, of course, not just a holiday for my mother, whose health issues always lessen when she’s away from home worries. It is, in fact, a true holiday for me, something I had never expected before we started doing this together. The fact is I get to relax in a way I don’t think I have done since having children. But above all, it is a precious space in which we get to spend quality time together, a space we simply don’t or can’t have in the normal day to day.

She also gets a chance to give something back to me.

‘It’s one way I feel I can thank you for all you do for me’ she said as we sipped a glass of chilled rose overlooking the bay toward Old Harry Rocks.

Taking time out like this, being with each other without agenda, has deep relationship building effects, countering the ‘must do’, functional, often task-oriented nature of our relationship.

As we relax, we laugh and enjoy each other’s company, we talk about what’s on our hearts or minds. Most powerfully, my mother finds herself able to recollect stories from her past. As I ask her about her childhood or her career before I and my siblings came along, anecdotes or stories emerge that I have never heard before.

Gems like Bear Grylls’ father, Michael Grylls, paying regular visits to the publishing house she used to work at in the 1950s to see her gorgeous friend who he had a crush on.

Or anecdotes about how my grandfather, a lawyer in the Law Courts of London, used to play a game with his colleagues: who could do the Times cryptic crossword on the tube before getting to work (I know, right?!). At times like this I have learnt about their close relationship. How he used to walk her to school every morning, and taught her the names of plants and birds on their weekly Sunday strolls along the Thames. Or how he brought her back a banana from his posting somewhere secret during the second world war when she was 4 years. With excitement and glee she received the gift of this rarest of fruits, only to spit it out in disgust at the shock of the foreign taste! ‘My poor father!’ she laughed.

Realising how precious this is for our family history, I have scribbled these memories down. And each year, I vow to ensure I ask her to tell me more.

Whilst I realise that most people reading this probably can’t get away with those they care for, for practical or financial reasons, my take away is that if you’re able to find some way of relaxing with them, hanging out, switching off the task orientation of your relationship for a few hours, you will connect in a way that is so precious for you both. Even just taking time to sit with them to ask them about their memories or things they love over a cup of tea and biscuit can be a gateway to valuable connection.

I know that soon my mum won’t be able to do this, so I am cherishing every one of our trips away.

You may have noticed I’ve been a bit quiet on here lately. My usual fortnightly posts haven’t been hitting your inbox or feed. Some of you on Substack have even reached out to ask how I am (thank you - that meant alot to me).

The fact is, about 2 months ago I hit a wall.

A combination of care demands and life events brought me to a place that can only be described as my wit’s end. I was mentally, physically and emotionally exhausted.

Unable to write – at least not anything I could post on here – I reached for my iPad and made a feeble attempt to convey my situation with a sketch. I used colour coding for the person, and differing thickness of arrows to convey the relative amount of support needed. No prizes for guessing that my illustrator daughter drew the very cute sketch of our sick dog!

This doesn’t even include my mother’s short emergency stay in hospital - the diagram was busy enough. Thankfully her stomach issues turned out not to be serious but the experience of being admitted to an English hospital in 2025 is far from stress free for carer or patient. She had the undignified experience of being made to wait in a bed in the corridor of Accident & Emergency for hours until space was freed up in an actual ward, followed by as many ward moves as she had hot dinners.

It’s been a bit nuts.

Pulled by these multiple, disparate demands on my mind, energy and heart, I reached a point where I was mentally exhausted, frayed and frazzled. I couldn’t make decisions, went from one need to the other. I felt thoroughly what the Brits call ‘discombobulated’.

Without being able to do the things that feed my mind and self esteem (writing, reading, freelance comms) added to the angst; I felt I was withering away on the inside. Frustration at the increasing disruptions to my weekly or daily plans were, as we say in this part of the world, ‘doing my head in’. There’s only so many times a person can mentally pick themselves up and start again without eventually feeling like giving up.

That was me.

I wanted out. To run away. To say no to everyone. To never cook a meal again. Sound familiar?

In a particularly wry moment, and in an attempt to add some humour to my situation, I wrote this tongue-in-cheek but honest response to the statement at the top of my shopping list on my fridge:

As you can see my usual positive mindset had gone out the window. I easily snapped at my family if they didn’t do the smallest things, swore at my sweet dog if he nagged me to play for the 100th time, and had zero tolerance for anyone who cut me up on the road or wore trousers that hung around their backside!

Rather worryingly, I didn’t recognise myself. I don’t think my family did either. I’m ordinarily someone who keeps going, keeps trying, keeps looking for the best in life. My dog certainly was keeping a wide berth from me when I made supper, crashing saucepans around in the kitchen as I gritted my teeth to prepare yet another meal.

Crying became frequent. If I bumped into a friend who asked me how I was with genuine concern, I would find tears leaking from my eyes.

Whilst this sounds a little like the menopause on stilts, I don’t see my hormones as being the main culprit, even if they may have augmented certain emotions.

The fact is, it wasn’t just the latest ‘perfect storm’ of care demands that brought me to this point. What my diagram doesn’t convey is the all important context: that this comes after more than 3 years of managing the process for my 57 year old brother to live independently of my mother (which I wrote about here). Thats three years of sourcing support for someone who doesn’t fit the system (he isn’t disabled but he is definitely vulnerable), of organising finances, finding and managing his PA, chasing social services, applying for benefits, and then sourcing care support and providing financial and emotional support for my mother.

To add an even deeper layer of context, this comes at the end of 21 years of raising children with a late diagnosis of autism, together with a late diagnosed autistic and ADHD husband (his diagnosis 5 years ago triggered the ones for our children). His issues with processing and sensory overload means he is regularly exhausted and finds planning or multi-tasking nigh on impossible - that said, he has recently discovered a new lease of life through lymphatic drainage massage from our physio (I’ll tell you more about that in another post but its been quite remarkable). Having a career that didn’t fit with this new reality, I found myself in a primarily nurturing and planning role, my former career travelling the world no longer fitting my reality.

With all this under my belt, it’s no wonder I had reached the end of my wits. I’m quite surprised it hadn’t happened before.

The Shift

What then, might you wonder, changed to enable me to think clearly enough to return to writing here? A mixture of things: some demands have lessened, I went away for a week, I sought good counsel and, most importantly, I am learning what true self-care looks like.

The demands that have lifted include the dog thankfully no longer waking us in the night to chew grass (although to be fair my husband was a rock and did that particular night duty); the cat, sadly deceased, no longer nags me for food/water/attention whenever I sit down try and work/write or relax. Most crucially, my daughter has just returned to her Uni town to spend time with her friends before they all disperse for the summer or for good. Whilst she’s still struggling with sleep, brain fog and anxiety, it’s important that she connects with them. It also gives me much needed headspace at home - to focus on my dear son who is in the middle of sitting his A levels under his own layer of post-glandularfever fog.

My break away was divine: I spent a week being fed, watered and tended to by my godparents who live in Dalkey, the beautiful Edwardian coastal village south of Dublin. Apart from being one of the prettiest places in Dublin County, it’s where I spent most of my childhood summers with my family before the car accident that changed everything. In short, it’s a place I adore and where I feel at home. Every morning I swam in breath-taking waters (literally and metaphorically), soaked up the sun and switched off from almost all responsibilities. It was a dream.

But despite that oasis of a week off, within days of returning home I found myself struggling emotionally once again under the weight of the care demands. The sheer uncertainty of what lies ahead – for my mother and my daughter and therefore myself – the lack of paid work, and the feeling of not being in control over my own future returned like an irritating horde of flies hovering around my head.

Thankfully I have a clutch of wonderful friends and people who I can call on in situations like this. My husband is a great listener (even if he does sometimes have to duck to cope with the volley of frustration coming from me on bad days!) And I am truly fortunate to have a therapist who I have been seeing since starting to write my memoir and for whom I am so grateful to my mother for helping to pay for.

One of my friends, who is highly experienced and trained in pastoral care at my church, pointed out some crucial things that resonated. The most important piece of advice she gave me was that she felt I was close to burn out. She urged me to take it seriously before I became fully burnt out. Having experienced it herself, she knows what this is like.

Her words, together with those of my therapist, got me thinking about some key truths about self-care as well as the internal narrative we can form as carers, things I’m learning to re-frame and review. Both of these topics I want to explore in more detail in future posts as I learn to put them in place and reflect on how to make self care work better for me.

I want to hear from you, if you’re a carer, about how you do ‘self-care’. To hear your tips and tricks.

Specifically I want to look at how self-care is not just about boundaries or activities we sign up for, and more about attitudes - often unconscious ones we hold. And to look at how our internal narrative about our role as carers is key to well being.

I’ll be writing these over the summer, fitting this in around my caring roles and writing plans.

In the meantime, I’m off to eat some chocolate and read a novel seemingly written just for me: Sandwiched by Catherine Newman. I’ll let you know what it’s like!

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Have a lovely weekend - it’s going to be a warm one here in the UK

9 April is a date that is indelibly marked in my memory for one simple reason: it is my sister’s birthday. She would have been 57 today.

It is a date that carries almost as much emotional memory as my own birthday, filled as it is with recollections of children’s parties, presents and cake: the white guinea pig she got when she was 8 (which she called Snowy), the giant box of individually wrapped presents from her wealthy godmother (I was so jealous), and the fabulously inventive, if somewhat eccentric, children’s parties that my father took delight in devising, with my mother the chief producer.

Memories of girls in summer dresses in the garden if it was warm, or wrapped up in winter coats and making snowmen if April turned wintery; the sound of children sucking jelly through straws, peals of unrestrained laughter as my father played back his recording of us on his Decca tape recorder; the feverish throwing on of hat, scarf and gloves if one of us threw a six on the dice in the Chocolate Game, desperately trying to scoff the bar of chocolate with a knife and fork as fast as we could before someone else threw another six; or eating as many pieces of home-made chocolate tiffin (known as Dead Dog in our family) before being found out and told off.

Such memories are woven into the fabric of my childhood, a part of who I am.

Only two and a half years older than me, it hits me how ridiculously slim the gap in our ages is now. But back then, it was a chasm, the difference between being allowed to have our ears pierced, to bring a boyfriend home, or to wear makeup. Or of being allowed to join in with her parties, or not. Once she hit secondary school, I was definitely not. She and her friends were up there in the echelons of being ‘grown up’, ‘trendy’ or ‘cool’.

Dying at such a young age (seventeen), and in such tragic, sudden circumstances (a car accident in 1985), has left me with not just a lifetime of loss, but a memory of her frozen in time.

I have a photo of her on my window ledge that is of just her, without me or my two brothers. Taken only a few months before she died she is standing in her bedroom, her head coyly tilted, her gaze straight into the camera, her sweet, pretty smile disarming the viewer. Freckles fan across her nose and cheeks, a touch of pale pink lipstick highlights neat white teeth not long out of braces.

Young and pretty, with nothing to hide, she is frozen in time, forever sweet seventeen. My older, yet younger, sister; my dead, fresh faced, sibling, a paradox that has become normalised with the passing of time. Like all actors or pop stars that die young, there is that one photo that becomes their signature piece that immortalises them in time. This is hers. James Dean, Marilyn Munroe, Kurt Cobain…. Kate O’Reilly. You don’t need to be a rockstar to have an iconic image.

She has been smiling at me for decades, sat on the many and varied pianos, bookshelves or windowsills of my existence, watching me move through life and through houses, her presence constant – and yet, I rarely notice her. She is there in the background but I rarely stop to look at her closely.

She has become someone I used to know.

She is, of course, much more than just someone I used to know: when I dare to look closely at that photo, when I allow myself to be caught by her gaze, I immediately see something of myself, I recognise a part of me in her. (It’s in the eyes. Always the eyes. And that Irish skin we inherited from Dad.) I see someone I am inextricably linked to, someone who is a part of myself, who shares my genes, my flesh and blood, and the intimate, exclusive experience of growing up in the same family unit. She was a part of me. No wonder the loss of a sibling is so hard to bear.

But the fact is, she is no longer a part of my current reality, someone I know in my day to day, and has not been for nearly four decades. And this brings a different type of grief, a sadness in a category of its own. There are no phone calls or face-times with her to wish her a happy birthday, raising a glass to her from another part of the country or the world, no promises of us meeting up to celebrate her birthday some weekend in the near future, or plans made for celebrating Easter together. I won’t be asking how her children are (how are the studies going? have they got a job yet?), if menopause is making her wake at crazy hours of the morning, or if she has any new recipe ideas for the eternal conundrum of what to feed the family.

This is something you realise as you grow up with the loss of a loved at a young age: the pain of missing them as a person may lessen, but sadness at the loss of a relationship, of who they would have been, grows. There is no Aunty or cousins for my children, no brother or sister in law to buy silly presents for at Christmas, and no one to call up and ask what to do about Mum’s failing health. Their absence is noticeable in moments like today (anniversaries), or rites of passage (getting married, having children).

At times like this, I quickly remind myself that life is rarely that simple, that even if she had lived, we may not have had such a privileged situation. We may have clashed and not got on. I somehow feel that even if that had happened in our twenties, we would have grown close as we matured. Far more seriously, she could have fallen prey to cancer or a life-limiting disease. A friend of mine’s sister died of cancer a few years ago and grieved her deeply: when you’ve known someone for so long, the pain must be greater.

Nothing is certain in life. We all have our tragedies.

But on the anniversary of a beloved sibling’s birth, it’s ok, even if painful, to give ourselves permission to stop, pick up that photo, and mourn the loss of someone we used to know.

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For those reading this in the UK, you’ll no doubt be aware of the Labour government’s announcement this week of their proposals for welfare reforms. Whilst some of these are welcome (Right to Try and Unemployment Insurance), the overwhelming response from charities and many MPs across the house has been nothing short of an outcry.

Specific concern surrounds the proposed cuts to eligibility for PIP payments, the non-means tested Personal Independence Payments that 3.6 million people currently receive for a physical or mental health condition. The proposals focus on raising the score needed by applicants to a minimum of 4 points in at least one activity to qualify for the Daily Living element of PIP, from November 2026.

Having gone through the arduous task of applying for PIP for my older brother who has late diagnosed learning difficulties and autism, I am all too familiar with this benefit. Thankfully I was successful and he was awarded an Enhanced PIP, the most he can get. Winning this has made a huge difference to his life enabling him to pay for a PA/Support Worker to visit him through the week to help him with organising and managing his time, money, flat, emails, bills etc. She has been an enormous support, and without her, he simply wouldn’t manage. In addition, having an Enhanced PIP has granted him that all important recognition of need by social services; they use it as an indicator of need.

My brother received 4 points for six of the ten categories so he is safely within the limit should he be reviewed. But, according to Emily Holzhausen, Director of Policy & Public Affairs for Carers UK, there are many who have a genuine disability and who score highly overall but score below 4 in any one category. They would not be eligible for PIP.

Emily was speaking on Radio 4’s Woman’s Hour on 19 March to discuss the proposed changes, pointing out the real concern Carers UK have for unpaid carers who stand to lose out from this change. This is because PIP is a qualifying benefit for Carer’s Allowance in many cases, the benefit for those offering more than 35 hrs of care and earning less than £151 per week. There are a staggering 5.8 million unpaid carers in the UK, most of whom are women, many of whom rely on Carers Allowance and who stand to lose not just essential monthly top ups to the bank balances, but also benefits like NI payments which affect their pensions.

Many of these carers are already suffering from financial hardship with 1.2 million of those carers already in poverty, 400,000 in deep poverty. Others feel undervalued and unseen in often isolating and difficult circumstances, many having had to take career breaks to provide care for their extended family. I am one of those.

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As someone who has had to stop work for a time to oversee the care of my brother and also my mother (as I wrote about in this post), I know something of what this is like. My career in the humanitarian sector had already been disjointed from caring for my children – regular overseas travel and a husband who worked long hours didn’t equate too well with raising our children. And just when I was hoping to return to full time work or a more responsible part time role, I was needed by my elderly mother and vulnerable brother.

Granted, I consider myself lucky in several ways. The care I offer does not require me to be on-hand 24/7, I have a very good relationship with my mother (who I am honoured to support in her last years of her difficult life), and I have partner who is earning well enough to support us both - at least for the short term. But for someone with a Masters degree, a wealth of experience in policy analysis and communications across the world, as well as a love of working in teams, this has not been easy.

Returning to some kind of work has proved incredibly difficult – at least not without risking sacrificing my own health or my own immediate family’s needs. The main block I face is that most roles that suit my professional level are full-time, with job sharing a rarity. Recently I applied for a role that, whilst full time, was perfect - a niche role, one I had recently performed, and well. I figured I could ask for a job share if I got through to the final interview. I did, but my suggestion was met with a polite decline and I wasn’t offered the role.

And so I have instead decided to pivot my career and train up to become a freelance editor. This will enable me to work flexibly, build on a knowledge base I already have (from years of creative writing) and will grow with my changing caring responsibilities. It is unlikely to boost my coffers much beyond buoying up my private pension, but it will give me much needed purpose, value and creative focus as I juggle my other responsibilities. I’m in my mid-50s, in case you’re wondering….

My situation is not typical, but it’s by far from unique. Thousands of women like me, who have had professional roles, are facing similar choices as their parents age whilst their children are still at home - or have left the nest but are still very much emotionally and financially tied. Some, like me, also have a ‘sideways’ responsibility, for a vulnerable sibling. I met just two of those women on this platform this week: Sarah from (who says she has found her ‘Caring Twin’ in me :-)), and Anna from . The so-called Sandwich generation is growing as we live longer and women have children later. It’s not going away.

Baroness Tanni Grey-Thompson, former Paralympian, disability advocate and cross-bench peer (that’s someone in the House of Lords to those of you reading from outside the UK) was on the same Woman’s Hour programme. Her comment was that whilst we all agree that there is a genuine crisis in a soaring benefits bill, the solution can’t just be to make cuts that inevitably hit the vulnerable in our society – it must be about making work more accessible for the disabled, and in a genuine way. Similarly, we need to be making work more accessible for carers who often want, and need, to keep their hand in work, but find the current employment structure a barrier.

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What we need are employers willing to try new ways of working that recognise the value of men and women who may not be able to give 100% of their lives to the organisation, but can give 100% of the time that they do have to offer. Take the international charity, Christian Aid’s, enlightened ethos:

‘We are actively encouraging racialised minorities, LGBTQ+, people with disabilities, returning parents or carers who are re-entering work after a career break, people with caring responsibilities, people from low socioeconomic backgrounds, women, and older workers to apply. This is because these groups are under-represented within our teams, especially at senior level, and we recognise and value the contributions members of these groups make to strong, creative and high performing teams.'

Yes, I realise that these kind of choices are far from easy for companies wrestling with their own margins in the tough economic climate we are currently in (and have been for some time). Hiring two people when you can hire one with all the overheads, onboarding and accounting work that involves will never be attractive. But didn’t we have these arguments 20-30 years ago about making work more accessible to women raising families? It took a global pandemic and zoom to make that a reality for many (myself included). And it demonstrated that different ways of working are in fact possible, such as the 4 day week (on 5 days pay) which has been proven to not just be better for employees, but also for productivity. Check out the inspirational Four Day Week Foundation for facts and inspiration, including their Mini Manifesto backed by the New Economics Foundation (ie its not pie in the sky thinking).

We have to keep progressing, keep evolving to make work patterns fit current realities.

Government purses are getting smaller whilst the needs are increasing. Until the UK government pushes through genuine social care reform, the number of unpaid carers is only going to keep climbing. If we’re to support this growing army of tireless, overlooked and financially struggling carers, we need to find radical ways forward.

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This week I went to see the new Bridget Jones film with a friend. I wanted to see it not because of the hype, but for the simple reason that I couldn’t resist the fascination of seeing how Bridget has ‘grown up’ – not to mention the novelty of seeing a sequel made 24 years after the first came out.

Being roughly the same age as Bridget, I am now firmly in midlife, having passed from the heady, carefree days of my twenties through that transmogrifying experience of bearing and raising children (although mine have just reached adulthood, unlike Bridget’s surprisingly young kids). I didn’t work in the advertising world or go to champagne-filled work parties – lobbying MPs on the latest conflict in the Middle East, or designing conflict analysis tools was my paid preoccupation – my day job was rather more serious. Nor was I chased by two improbably handsome men (my husband may care to differ), wear Big Pants, or serve Blue Soup at dinner parties. But I did share her effortless ability to make a fool of myself, create hapless innocent mistakes, and put my foot in it on more occasions than I care to admit.

Take the time I managed to set fire to my hair on the first day of my first job – with BP, no less, not some small charity. We’d gone out to lunch at a local pub that had candles stuck in wine bottles on the table (remember those?). That morning I must have applied a particularly generous dose of hair mousse to my shoulder-length, permed hair (remember those?). As I leant forward to find my place down the side of the table, whoosh, my hair caught fire. I can’t remember how I put it out, but the smell of my burnt hair is as memorable as my boss’ face. Thankfully he had a sense of humour.

Or the time when I threw up on the House of Lords’ carpet after a dodgy mushroom stroganoff in the House of Parliament canteen (yes, really). The memory of wandering desperately down a corridor in the House of Commons to find the ladies, alas too late, and realising in horror that the carpet was not the navy blue of the Commons, but the claret red of the Lords will never leave me. And the kind, plummy voice of a Dame or Baroness exiting said missed toilet to enquire if I was alright?

And let’s not forget what happened when I went to see the first Bridget Jones film. It was a Saturday night, the nation was abuzz with the new film, so I went with two girlfriends at the local multiplex. Knowing us, we were no doubt chatting and giggling about something as we looked for the screen it was being shown in. Walking in, we discovered the film had already started, and that our seats had been taken. Not wanting to cause any bother, we quickly found the only 3 seats left – at the front – and hastily sidled into them, ignoring the slightly disgruntled and puzzled looks from the people around us.

The first sight to greet us was Mark Darcy’s Christmas jumper, filling the entire, enormous screen. I loved Colin Firth (still do) but even that was too close for comfort. It was like watching Bridget Jones under a microscope. Wondering how long I could last without getting a crick in my neck from straining backwards, I didn’t have to worry – because 25 minutes later the credits started to roll. Yes, we’d gone into the wrong cinema screen. We collapsed in a fit of laughter, until we realised that we needed to make a run for it to find the correct screen we had actually booked – which had started 10 mins ago! So, in one night I managed to see Bridget Jones twice, but never the beginning. We still laugh about it.

Room for any more? This post wouldn’t be complete without recounting the famous time that I managed to pop a bath bomb into my mouth whilst watching Sister Act at the local theatre. I’d gone to see it with a group of mum friends (yes, I’m now supposedly a sensible mum). One of the presents I was given in the foyer beforehand was a box of chocolates and a tube of something described as ‘Elderflower Fizz’ by Oliver Bonas. Not realising Oliver Bonas didn’t sell sweets (it had only recently opened), nor looking too closely at the packaging whilst we downed our pre-show drinks, I mistook them for strawberry bonbons, my favourite sweets as a kid. I’d not had one for yonks so, mid-show, I decided to try one and share them around.

They seemed pretty big for a bonbon but hey, if gobstoppers can be giant, why can’t Bonbons? In my defence, it was very dark so I couldn’t read the tiny letters describing them as ‘Bath marbles’. Within seconds of popping it in my mouth, I quickly realised it was meant for the bath, and not my mouth. Cue me foaming at the mouth, scrabbling around for my glass of water (which served to merely accelerate the foaming), followed by me spitting it out ingloriously into my pint glass!

To make matters worse, it happened during the one quiet, serious song of the entire raucous show, forcing me and my friends to shake with barely controlled laughter until the number ended and the lights went up. My black jeans, seat and auditorium were covered with a liberal dusting of pink bath bomb powder. After explaining to the row behind us what the mayhem was all about, we made a fast exit. It was a Sister Act, alright.

I think you get the picture. My life has rarely been without drama or faux pas. As a good friend once wryly observed to my husband some years ago, ‘You’ve married a lifetime of entertainment there!’

It’s all rather Miranda, who, if I had a heroine, would be her. Not, in fact, Bridget, who is far too trim and smooth-faced for a 51yr old widow with two young kids, and who walks around like she has a carrot up her backside. Plus she doesn’t say ‘thrust’, or gallop about in bookshops.

Sitting there in the cinema this week, watching the now grown-up Bridget fall into milder versions of her twenty-something escapades, brought me back to thinking about the young, slightly silly, (relatively) care-free young woman that I was – a woman I realised I now hardly recognised.

It’s not entirely surprising. The past few years haven’t exactly been conducive to embarrassing antics or silly behaviour. There’s nothing like juggling the care of a parent, neurodivergent brother and older children to make you lose a little of your sparkle and happy-go-lucky attitude to life. Parenting, let alone caring on top of that, ushers in a whole ship-load of serious issues to navigate, and endless lists to tick off, not to forget the ever-present tiredness.

To be fair, my life was no smooth run before I had kids aged 33: it took me several years to get the job I had studied my Masters for, I had chronic fatigue aged 28 and a full-on job for much of it. I also had a lot of grief and loss to process. It’s so easy to assume life is easier for those who aren’t responsible for others.

But there’s no doubt it does shape you, does matures you – and maturing is surely something to be celebrated? After all, aged 54, I feel more grounded, more sure of who I am, have a more rounded understanding of life and others. I care even less about what people think when I get into a scrape (and it does still happen occasionally!) But most importantly, there’s a depth to my life, to my relationships, that comes with years of living, loving, giving and receiving.

Life isn’t easy, but it is rich and rewarding, and does come with some precious gems of fun.

And I now do wear Big Pants.

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And if you’ve not seen the latest Bridget Jones, go!

As many of you will know, my 86 year old mother had a bad fall last September in her bedroom in the middle of the night, triggering 4 months of pain, a myriad doctor’s appointments, increased carer hours and a mind boggling amount of medication.

Six weeks after her fall I wrote my first post about dealing with this, specifically dealing with the unknown, guessing at the trajectory that she might take, and worrying that this might be the start of a longer-term decline.

I am pleased to say that she is now fully recovered and in the best health I’ve seen her for some time. But the journey to get there has been challenging, including a battle for an Xray, an aborted respite stay in a care home and discovering the less-than-pleasant side effects of morphine.

So I thought it about time that I wrote a post about my experience, to share what I’ve learnt. Those of you reading this who have parents that you care for, either now or in the future, will very likely have to deal with a fall at some point. The more prepared, the better.

Just a note: my mother didn’t have a major break or have to be admitted to hospital, so this post doesn’t touch on that whole experience - a different ball game all together….

So, let’s start with morphine.

My mother has little experience of this strong painkiller except for 40 years ago when she was put on sky high doses after suffering life-threatening injuries in our family car accident. She remembers little apart from the colourful hallucinations they triggered (she was convinced she was in a hospital bed in Hong Kong – a place she’s never been to - and could describe the sky scrapers outside her window!)

A couple of weeks after her fall, the doctor prescribed morphine tablets as the codeine wasn’t effective. He was reluctant to do this as he knows the side effects. But we didn’t. After a week she started to experience confusion and she became more unsteady on her feet. After a month her stomach became unsettled and she lost her appetite. After two months rashes appeared on her skin. It was not quite debilitating.

Becoming more unsteady on her feet was a real concern, for obvious reasons. And the confusion was distressing for her: she wasn’t able to manage her emails or finances, got totally muddled with passwords, ordering her online shop and even remembering the time of day. One time she asked for soup for her breakfast, thinking it was lunchtime as she’d been awake for so long. Even more alarmingly, when she was on the highest dose, she started to have that same hallucination about being in Hong Kong! The mind is a curious thing.

Between myself and the carer we managed to keep her safe, but the fact that she knew she was making mistakes made it all the more difficult and distressing for her.

So, if your parent is put on morphine, be prepared. Ensure they have good care, be in regular contact with the carer (where you can) aswell as their GP. With GP services so over-stretched, the onus is often on the patient to let the GP know how they are responding to the medication but they are often not ‘with it’ enough to email her GP regularly enough with how the medication was affecting her.

And ask your parent to email their GP to give you the authority to speak on their behalf. Doing this before they fall can make all the difference.

Next up, that X-ray.

As I wrote in my first post, the GP thought the pain was caused by muscle spasm in her buttocks and lower back. Her private physio (who she sees about another issue) agreed. The GP did not refer her for an Xray as he said that if even it showed a fracture, the treatment would be the same – pain relief drugs and rest.

However, it was only after the NHS physio from the Falls team (from our local NHS trust) came to assess her that we realised the importance of an Xray. The physio said he could not advise on the correct treatment plan without being sure of the injury. This was one month after the fall. It took another 3 weeks for her to get an appointment at our local hospital for the Xray and another week to get the result, totalling 8 weeks after her fall.

The Xray found she did, in fact, have a compression fracture. Although this diagnosis didn’t change the medication, as the GP had said, it did give her peace of mind knowing what the injury was. We are puzzled why he didn’t refer her earlier, in the light of what the physio had said. He is an excellent GP from a very good surgery. That said, it doesn’t seem to be uncommon. A couple of other people I’ve spoken to have said their GP also refused an Xray for their elderly parent after a fall who continued to have problems long term.

My advice to anyone in this situation is to ask your parent to discuss this properly with their GP - to explore whether a lack of clear evidence of the injury will affect their physio plan.

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And lastly, that aborted respite visit to a care home….

I was due to go away for a week mid-October and although we had a carer coming in for an hour in the morning and evening, I felt Mum would benefit from a week’s rest in a care home. She could switch off from worrying about food shopping and I’d know she’d be looked out for 24/7. I also thought that a stay in a local care home would give her a feel for one should she need one in the future. So I investigated a few homes that had good reputations.

The one we landed on was recommended by the GP who did visits there. It had a general good reputation although we didn’t know anyone who’d been there recently. It was a pleasant looking home with apparently efficient staff, was well decorated and not over-heated (those homes where you come out gasping for air are simply dreadful!).

It was a bit of a disaster.

Although the staff were very pleasant and helpful, they were simply overrun and uninformed of my mother’s needs (e.g her poor mobility and regular need for changes of ice packs for pain relief). Resources were clearly stretched and communication systems weren’t working. As a result she had to keep buzzing for help throughout the day, even just getting water, and at night she had to hobble into the corridor to find someone to help her get ready for bed.

It was clear she had been shoe-horned in.

Not surprisingly, she hated it. After 48hrs she called me in tears asking me to bring her home. I realised we needed to abort. Whilst I realised it takes time for staff to get to know her, she didn’t have that time - especially when you’re paying £1,500 a week! The manager, clearly aware of the shortcomings, fully accepted our complaints and agreed to my mum leaving, albeit without refunding the amount for her 2 days stay.

Considering this was a care home that was part of a large chain, with a supposed good reputation, I was both alarmed and annoyed. The amount charged by these places is eye watering. Surely they can hire enough staff and equip them well enough to ensure they are able to do their jobs?

I learnt a few things from this debacle. Firstly, despite what websites and staff say, respite is, in the main, respite for carers, not so much for the person going in. So, if your parent has more than average needs, like Mum had, I wouldn’t advise putting them in respite - unless you have a good, recent and reliable recommendation. And this is my second learning. Be careful to get, if you can, recent recommendations. The standard of care in these homes can change very quickly given the fairly high turnover of operational managing staff. Lastly, a GP’s impression of a care home isn’t to be fully relied upon, at least not for respite. You can’t really judge a home without being on the receiving end of care.

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Despite these challenges, my Mum has been grateful for the care she has received from her doctor’s surgery, paying her home visits where necessary. She also is aware of how lucky she’s been with the small care agency we use who have shown great care and flexibility. We couldn’t have got such flexibility from a bigger agency who usually need at least 2 weeks notice for a change.

And this was another lesson - having a care agency in place before my Mum had started to fall made all the difference. I mentioned the importance of getting care in place before it is fully needed in this post. If your parent can afford it, getting someone in for even just a few hours a week means you will be ready should they suddenly deteriorate and need more care. And if they can’t afford it, there’s always the non-means tested Attendance Allowance that they can claim for if they have a medical need (as mentioned in the above post).

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I’ve had to learn some hard lessons from this experience, but at least I can share them with you! Of course, things will vary from county to county, and from country to country, but being aware of these issues and being prepared can make such a difference to you and your parent.

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PS. The sun has actually come out for the first time in a fortnight here in Hertfordshire. Hope it has for you! Off to do a little jig…..