The Cost of Caring

Most people don’t ever expect to become an unpaid carer. I certainly never did. I had always been aware that there were people that did this for their family and friends and had a lot of admiration for them for giving their time and energy freely for those they love.

Beyond that though, I had no idea of the realities of what this responsibility entails. I had no idea of the vast number of unpaid carers there actually are.

The reality of this role that so often is not chosen but forced upon people with no other choice (even children as young as 5 years old) is much different than I ever could have begun to imagine.

The demands of this job, and I say job because even though the government refuse to recognise it for what it is, it is the hardest job that I have ever undertaken and the demands of it far surpass what is expected of any employee.

Even the most stressful care providing jobs within the NHS, staff are paid at the very least in line with national living wages and get to clock off for an adequate rest. A basic need and yet a luxury to unpaid carers.

The unpaid carer population (approximately 5million people in England and Wales) is over 3 and a half times the size of the entire NHS workforce (1.4million). Our thankless labour saves the UK economy £162 billion per year.

Almost an entire second NHS service.

Carers Allowance can be claimed when caring for somebody for over 35 hours per week, although in many cases the hours are much higher than that. Carers allowance is currently £269 per month for caring for somebody for 35 or more hours per week. The rate does not increase despite many probably caring for well beyond 35 hours. Some people the equivalent to 2 full time jobs. This is a paltry £1.92 per hour for 35 hours of the care they provide. The current national minimum living wage for over 21’s is £11.44.

For even more disturbing context, back in 2015 (national minimum living wage at £6.50 per hour at the time for over 21’s) a textile sweatshop was exposed in Leicester. They were paying their workers £3 per hour. Yes, an illegal sweatshop was paying their workers significantly higher than carers are given. This is meant to support them in their role and help them to provide for their loved one.

To say carers are criminally underpaid by the government would be an understatement.

The average weekly cost of placing a child with complex needs in residential provision is £7,739, with the weekly cost of an emergency placement costing £10,597 per week. That works out at £402,428 per year for nonemergency placements. Over a hundred times more than a carer’s yearly £3,991.

I, like so many others have given up so much for this role that I didn’t choose, that I found myself in by circumstance, and yet I don’t shy away from my responsibilities, for it was born of unconditional love for my son. Yet I feel as though this vital job I’m doing is completely disregarded by wider society. The option to select employment status as ‘unpaid carer’ has never appeared on any forms I’ve had to fill in, which cements this feeling even further, that this role simply does not matter.

The personal cost to carers is phenomenal. It affects every aspect of our lives from physical, mental, and emotional health, financial pressures, to social isolation. This list is endless. We are often carrying out complex medical care with subpar, if any formal training and often whilst extremely sleep deprived.

The pressure that carers are under is only growing and growing.

The pressure that carers are under is only growing and growing.

If this grossly unjust devaluation from the government continues, it will cost many lives. As pressures and burdens increase, inevitably many more carers will become too burnt out, sick themselves through mental, emotional and physical exhaustion and unable to continue, it will undoubtably be the collapse of the NHS entirely.

Purple Day and the Road to Epilepsy Awareness

Every year, March 26th is designated as Purple Day, a worldwide effort to raise awareness for Epilepsy.

I’m thankful that this cause exists, as it’s a day dedicated to sharing information and standing in solidarity with all individuals living with this diagnosis.

However, wearing purple and posting on social media for one day, out of the entire year, is just a small step in the right direction.

To continue making our communities aware, and to promote further research and treatment options, our little steps must become big strides. To create a difference in the lives of our loved ones living with this monster of a disorder, and their caregivers, we must do more to pave the road to awareness.

I never knew how to respond to a seizure until the night that one happened right in front of my eyes.In a desperate panic, I felt helpless as a tonic-clonic seizure suddenly took over my tiny, 10-month-old baby.

It was out of the blue, as they often are.

No rhyme or reason. Every muscle in her little body contracted violently as she lost consciousness. Her breathing seemed nonexistent.

It was completely devastating, and it changed me forever. The trauma and heartbreak that lasted for only a few minutes was burned into my brain for a lifetime.

They never get easier. No matter how many times you watch your child endure them, seizures are terrifying and gut-wrenching to witness.

As caregivers, we train those in our circles on the protocol to follow if a seizure occurs in our absence. It’s uncomfortable to talk about, but it’s necessary.

It could be lifesaving.

In accordance with the quest to spread awareness, and to teach others how we can walk this road together, these are first aid safety tips provided by the Epilepsy Foundation. Knowledge is power, and it would benefit ALL community members to know what to do if they encounter someone in need of assistance.

  • STAY with the person until they are awake and alert (remain calm, time the seizure.)
  • Keep the person SAFE (move them away from harm.)
  • Turn the person on their SIDE if they are not awake or aware (put something soft under their head, keep the airway clear and loosen tight clothing around their neck.)
  • NEVER put anything in their mouth or restrain them.

Call 911 if:

  • The seizure lasts longer than 5 minutes
  • The person doesn’t return to their usual status
  • The person is pregnant, injured or sick
  • Repeated seizures or breathing difficulties occur
  • Seizure occurs in water

I never hesitate to call for emergency back-up when I feel that it’s needed.

After 13 years of parenting a child with an Epilepsy diagnosis, and living with its looming, stalker-like presence in our home, I wish a cure could ultimately be found. Until then, I will give my all to help her battle this beast.

Parents make the BEST advocates. You’ll find us calling and writing to our legislators.

We share our stories and plead with them to put laws into effect to help our children. I’ve watched incredible parents fight courageously, pushing for bills to legalize medical cannabis and to mandate seizure first aid training in schools.

We have open discussions with doctors on medication side-effects. We strive to educate others so that our kids will be safe, receive better treatment options and maintain the very best quality of life.

On this road to Epilepsy awareness, we can help by recognizing Purple Day and sharing information that we learn with others. We can support families that live this life. Together, we can team up against seizures and help clear the path for those trailing this road behind us.

To learn more, visit and

The Colour Purple

I Love flowers. Purple ones are my favourite. The colour purple is often associated with royalty, extravagance and grandeur. Dark shades are said to inspire power and strength while lighter shades are hopeful and optimistic. Psychologically purple inspires harmony, mental balance and stability.

There is a day to wear purple and this year it’s 26th March.

Purple day is a day chosen to educate and raise awareness of epilepsy around the world. It was initiated by a young lady called Cassidy Megan following her own struggles with epilepsy.

My family has also been touched by epilepsy. My eldest son James who has Wolf-Hirschhorn Syndrome had his first seizure when he was 17 months old. He’d had open heart surgery just a few months before and I was home alone bathing him. He was still tiny as growth retardation is characteristic of his syndrome. As I held him in the bath, he suddenly became rigid, his arms and legs outstretched. I don’t remember him making any sound or even any movement. I had never seen anything like this before and in my naivety didn’t consider that he could be having a seizure.

I wrapped James in a towel and I ran downstairs with him. I ran outside and I banged on my neighbour’s front window. My neighbour, a mother of three herself, wasn’t home but her young teenage son was and he called an ambulance. My recollection is vague now but I think my other neighbour arrived back home as the ambulance arrived and she came with us to hospital. She stayed with me until my husband arrived. He was working, on call as a gas service engineer, I don’t even recall how I got hold of him. We had no mobile phones 25 years ago.

Over the next few years James continued to have regular seizures. I say regular, they were every 4/6 weeks, not many I know compared with others who endure many every single day. We had emergency medication for him at home and I guess we got as used as you ever do to dealing with them as and when they arose. You adjust to living with the knowledge that it can potentially happen at any time, especially when James was unwell.

We then enjoyed many seizure free years.

I had hoped that was an end to that particular episode of ours and James’ life. But no. With no warning on 15th Feb 2019 James had another seizure. I wasn’t home. My husband and younger son were with him and at the time and I met them at the hospital. As James hadn’t had a seizure for so many years the ambulance took him in to be checked over.

No specific cause was found for this reoccurrence other than James had been on some different medication which had completely thrown his sleep pattern out of kilter. He was exhausted and falling asleep at all times of the day. We felt this had lowered his threshold and hoped it was a one off.

All was well for a further two years, then another seizure, this time without any justifiable explanation at all. Eighteen months passed and then James had two more seizures in an eight-week period. So here we are now as he is coming up to 28 years this year and he has started some daily epilepsy medication. I had hoped it would never reach that point but here we are. It’s still early days and after a very gradual increase of medication over the last few months he has just reached the advised dosage so it’s very much a wait and see situation and hoping we have things under control.

Here’s hoping on March 26th (and every other day) that purple will indeed bring peace, harmony and mental stability to my family. I will have to find something purple to wear.

It Must Be Nice

One task that comes with being the parent of a child with complex medical needs and disabilities is making countless, redundant phone calls. We spend A LOT of time scheduling appointments over the phone, being placed on hold for ludicrous amounts of time, disputing insurance claims, and tirelessly advocating for services and supports that our children need. On one of these recent, never-ending phone calls, the representative made small talk with me while she waited for her computer screen to load. To fill the awkward silence, she asked “What do you do for a living?” When I answered, “I’m a stay-at-home mom”, her short response caught me off guard.

“Hmph, it must be nice.”

I couldn’t see the representative’s expression, but I could clearly imagine it as a smirk. Maybe it was even accompanied by a sarcastic eye roll. In response, after I paused briefly to process her comment, I replied, “Yeah, it’s really hard work, but it IS nice.”

After we wrapped up the conversation and my claim had finally been resolved, I still found myself stuck on the remark about my occupation. Thinking of how she probably viewed my day-to-day life, (likely picturing me eating bon-bons in my pajamas), it made me realize that despite all the “hard”, it truly is the very best job I could ever ask for.

My back aches from lifting and transferring, but I get the sweetest kisses from my precious 13-year-old daughter.

My world is filled with loving cuddles, bedtime stories and holding hands as I sing her favorite song, “Row, Row, Row your Boat.”

My weeks are packed with therapies, medical appointments, medication management and many miles traveled. They are also overflowing with magic, and the privilege of having a front row seat to all the progress that she’s making.

I am on standby every day in case she’s sick or doesn’t get adequate sleep. On school days, I stick close to home in case I need to get to her school quickly in the event of a medical emergency. It gives me peace of mind that I never have to stress over missing excessive time from work. No boss would tolerate the absences I’d quickly rack up.

My clothes and shoes are worn, less than brand new. Ever since I stopped working, I always feel a little twinge of guilt when I spend money on myself. My husband is completely supportive, hard-working, and always points out that my needs matter too. He sacrifices and gives his all to his family. We’re a team and we remind each other that neither of us can pour from an empty cup.

I’m perpetually tired and usually rely on ridiculous amounts of coffee.

But with cup in hand, I’m lucky to have the ability to see my 19-year-old son gaining independence. I’ve had the gift of proudly sitting ringside as he finished high school virtually, now successfully taking online college courses.

ALL parents, no matter their career or occupational status, have an extremely tough job. As I reflect on what my work entails, I am so very thankful. The long days and sleepless nights are worth it all. Despite the many struggles we’ve faced, the time I’m afforded to be with my children is priceless. This life may not be understood by those outside of it, but it really IS nice.


“Being kind to yourself”. This phrase has become so ubiquitous that sadly, I think it’s lost some of its meaning. It’s been bandied around for years now, emblazoned across various merchandise in shops and splashed across social media on cute memes, usually with a cat with a paw around another. While I’ll never say no to a cat meme, I find myself internally sighing ‘yes, ok’ and scrolling past. Since I have become a parent carer, this phrase seems to be thrown my way even more, by everyone from well-meaning professionals to support groups and charities.

It was talked about in a meditation at the end of my yoga class the other week, and for some reason I really thought hard about it.  The reason I’d been shrugging it off was not just due to the fact that it’s everywhere, but because I thought I was already being kind to myself. I prioritise self-care (yoga, counselling, walks etc. etc.), and I don’t feel guilty for treating myself when I need it. But when I looked deeper, I realised it’s more about my internal monologue, what I say to myself.

Here, I don’t think I am as kind as I could be.

One example that comes to mind is playing with my daughter, who is 9 but is cognitively around 18 months old. She likes to ‘post’ things (bits of paper into drawers), do very simple peg puzzles, have me read the same picture book repeatedly and watch the same sing and sign video from the late 1990’s, complete with presenters wearing Global Hypercolour T Shirts, on a loop. I get bored. I have never enjoyed this kind of playing, even when both of my girls were toddlers and I had only been doing it for a few months. Nine years on, when I am dragged off of the sofa to play with the same puzzle yet again, I feel frustrated and fed up. And then I feel guilty.

Guilt is one of the emotions I struggle with the most. In this case it comes from my internal monologue – here’s a flavour of how it goes…

“I should want to play with my gorgeous girl.”

“I need to do this to be a good mum.”

“I should be really grateful she is not having seizures in hospital and is able to play.”

“I should be enjoying and savouring these precious moments.”

“I should be doing this to help her development.”

And I realise. That is not being kind to myself.

Being kind to myself goes something a little more like this:

“It’s completely understandable that you’d be bored having to do the same activity repeatedly. Your mind wondering is perfectly fine, and having a nice podcast on in the background is fine too. It’s ok to do this only for a little while. It’s also ok to say no and not do it at all. School is where she gets all of this sort of play, and you can bond and spend time together in other ways that suit you both.” Interestingly, I wrote this as if I was saying it to a friend. A counsellor once (actually more than once) said to me. Would you talk to a friend how you’d talk to yourself? It’s a well-known but very helpful question to check in on just how kind you are being to yourself. A yoga or a massage can only go so far if we don’t talk to ourselves kindly. I am working on remembering that

I Love You Mum

Just four little words that mean so very much. I remember when my now 24yr old was much younger, he would often throw his arms around my neck and say “I Love You Mum”. My heart would swell.

The likelihood is that my eldest son (now 27yrs) will never say those words. He is nonverbal. He can ‘sign’ I love you. I’m not sure he understands what love means. I tell him often that I love him. His response tells me he thinks it’s something nice…….he’ll usually blow me a kiss. I ask him if he loves Mum. He shakes his head. It doesn’t upset me. He shakes his head to everything. Everything that is apart from “Do you want pudding?”  Then he can nod and say “Yeah.”

As Mother’s Day has just passed, we have seen all the cards in the shops expressing our love and thanks to our mums. The advertisements for expensive treats and meals out. Commercialism….. says my 24yr old cynic. He doesn’t buy into it, he never has. Until recently he was a cash strapped student and I wouldn’t have wanted him to spend his limited funds on me. Just a hug and those four little words were enough. (Though his dad would ensure there was always a little something for me from the boys)

I have never had breakfast cooked for me on Mother’s Day.

I have never had breakfast cooked for me on Mother’s Day.

I am the only cook in my house so actually I’ve not had breakfast cooked for me ever. I’ve never been taken out to lunch or for afternoon tea on Mother’s Day either. Pubs are crowded and it would have been difficult with my eldest who has complex needs. I really don’t mind.

As for my mum, I know as I approach my late fifties this year that I am very lucky to still have my own mum in my life. So yes……I have bought into the commercialism as I have done every year since I was able. I had the card and the gift. I’ll tell my mum I love her, I don’t tell her often enough but I hope she knows how much I love her every single day.    

Wanted: Personal Assistant

Dear reader, I am comprehensively exhausted. I would dearly love to say that this is because Mr V and I have a fabulous social life, or that as a tweenager the Dude is constantly off out at various social events of his own. Frustratingly, my current state of creaking tiredness is a result of feeling like I am spending an increasingly large amount of time arranging meetings, chasing up training and doing tasks that other professionals should be doing.

I know a lot of this is due to the cuts made to various services over the years; too few staff trying to do too much work is always going to end up leading to problems. After the Dude’s spinal surgery back in October he developed a slight issue with the surgical incision where it simply didn’t heal at the base of the wound. This left him with a 1 inch hole in his back which was a massive infection risk, and needed daily dressing changes. In 2023 our community nursing service was decimated, meaning many of the services that they used to provide and which families like ours relied upon are no longer available. We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

We were lucky if we could get a nurse to come out once a week – so the task fell to us to manage this genuinely terrifying wound in our child’s spine.

And then there are the training requirements for carers – the number of forms that need to be filled in and boxes that need to be ticked is truly eye opening! In my adorable offspring’s case, this means that training needs to be provided for his PEG feeding tube, feeding his blended diet down said tube, his seizure management, manual handling, secretion management, VNS use and the list goes on. It would be far too simple if there was a single point of contact for all this, instead each item of training needs to be dealt with by a different professional (in several cases in totally different hospitals). While we have been dealing with all this for years, as we are not healthcare professionals, we are not able to do the training for the carers ourselves despite being the experts in our child’s care.

Parent carers are an impressive bunch, we learn how best to support our children whether that’s by managing medical needs, performing nursing tasks, tube changes, tissue viability issues and the associated admin all while managing family life. It’s a juggling act we don’t always get right, and the occasional spinning plate hits the floor. This month, most of the tasks have gone well… I’m going to take that as a win, pour a glass of wine, and wait for whatever April brings.


I have just returned from Ikea. It was a simple trip out with my daughter and her carer (it would be impossible to do this on my own; my heart rate would be through the roof). It actually went pretty well i.e. without major incident.

We did have to change our plan when we arrived by buying her a full hot meal that we had not intended to. She is used to going there to eat, it’s one of the few places informal enough that we can just about make it work. So, when we arrived, she understandably dragged us to the café. It made complete sense to her and there was nothing I could do. Refusal would have meant a heart-wrenching meltdown and her completely refusing to move. This is not because she is ‘spoilt’. It is simply that she does not have the understanding or communication for us to be able to explain to her that we cannot always have a meal in this place. She would be bewildered and extremely sad. It would not make any sense to her. So we have to ‘give in’.

This is a really hard thing to get used to and to explain to others.

It is unimaginable to most people that you have to do this but there really is no kind alternative once you are in the situation. The only alternative is going somewhere else where she does not have the food association. I would love to be able to gently explain to her, as I could to a typical nine year old, that we don’t always eat out because it is a treat, and it is expensive, and that we will make a nice tea at home.

The fact that her understanding is not even close to this at least makes our course of action clear cut. It does not however, help me with the stares from others as she marches past the queue straight to the food counter. There is nothing I can do. I am ready with my lines, rehearsed and ready to go if anyone confronts me, but silent judgment tends to win out, and people simply just look. My heart rate rises, I feel defensive, sad and on show. Part of me wants to grab a chair and give a speech to (what feels like) the crowd of people staring, to tell them she has a rare syndrome, that we deal with seizures most nights, that the fact that she has fewer words now, at 9, than she had at 3, makes my heart so painfully sore. But instead I crouch down to her, look at her beautiful face and talk to her. I try to focus solely on her.

Today’s trip went largely without incident but I am still settling down from it.

I realise that this is because, when we are out with my daughter I carry a constant feeling of anticipation, ready for something to happen at any moment. A display tipped over, glass smashed, other’s personal space being invaded, a seizure, breaking free, 25 minutes refusing to move, wince-inducing yelling, turns, stares, tuts. It’s only when we shut our front door that I can begin to relax. I feel exhausted.

On the way out of the shop, my little girl was beaming on the escalator. I took photos as if we were at a theme park. My heart soared to see her so happy. Herein lies the secret joy that others don’t see.

I do believe this specific type and level of anticipation to be exclusive to having a disabled child. As with so many other aspects of our lives, this can make it impossible for others to empathise with. In the meantime, all we can do is focus on our child. For that is where the magic is. 

The picture depicts another recent trip to Ikea where an ill-thought-through ride on a flatbed trolley resulted in a 20 min delay in the car park, as our daughter refused to get off.

No Longer Tempting Fate

Q: “How’s Heidi doing?”

A: “I don’t want to tempt fate but she’s doing really well thanks” *touch wood / fingers crossed / hope I haven’t jinxed it*

A pretty standard conversation in my world/head. Someone asks how Heidi’s doing and inwardly go into a quiet panic. If I say she’s doing well, will that curse things? Should I play it down when we’re having a good spell, in case things rapidly change and it would all be my fault? Will people think badly of me if I say we’re good, when I know so many others are having a tough time? Will that positive comment come back to bite me?

I shared a post a few months ago on Facebook:

“A rare thing is happening – Heidi is sleeping through…totally get that I have now jinxed it, and also appreciate that sleep is a precious commodity many parents (especially those who have kiddies with extra needs) miss out on. Coming up to 9 years of broken nights, I’m celebrating the last 3 sleeps.

A GP friend of mine pointed out in the comments that there’s no such thing as jinxing. Whether the sleep continues or not it has happened, and nothing can take that away.

As so many things do, it got me thinking.

Since having Heidi my view on fate has changed. I used to think that everything happened for a reason, that fate would work things out. I no longer believe that. Sometimes things don’t have a reason (including big things like why did Heidi collapse just after she was born?). It wasn’t fate. I wasn’t “chosen” to be Heidi’s Mum because I could cope any better than the next person or had any secret powers. I grew resilient, and strong, and continue to have wobbles because of our situation.

By celebrating the good days, I’m now refusing to believe that I will cause any bad days. I hope they are few and far between, but if I worry about them before they happen, it won’t change the outcome and I’ll be missing out on today, which is always the most important time.

(And just for the record, the sleep has been a bit hit and miss, but I’ll take the naps where I can!).