This article supports ‘Feeling overwhelmed’ a Stroke Association  report published this month.

“What??”  The look of incredulous disbelief when I tell people… “My son had a stroke.”

Oliver was 13 when he complained of a vicious headache; I sent him to bed with a painkiller, unaware that at some point he had passed out dizzily on his bed.  A trip to the GP the next morning proved eventful: whilst sitting in the waiting room a quarter of his vision disappeared.  Oli seemed unperturbed: “I can’t see over there,” he told me, waving his hand randomly to the right.  “It’s all gone black.”

The locum GP diagnosed migraine and sent us home with paracetamol, but I took Oli straight to casualty.  Over the following months we were regular visitors to five hospitals, and at each one the staff told me: “Your mother’s intuition probably saved his life.”  Whipps Cross casualty in east London has a specialist eye unit, affiliated to Moorfields.  The consultant recognised a potential brain problem and ordered a CT scan.  It was clear.  He wasn’t satisfied.  The next day Oli was admitted to the RoyalLondonHospital for tests, hours later we had our result: stroke caused by a vertebral artery dissection.  The paediatrician explained it to us, one of the four major arteries in his neck had split, causing a blood clot that prevented blood flowing to his brain.

What’s a stroke?

All we previously knew of stroke was that it happened to old people.  In fact, it’s a brain attack in which the blood supply to the brain is cut off, caused either by a clot, as in Oli’s case, or bleeding in the brain. Around 150,000 people have a stroke in the UK every year and 400 of these are children.

Oliver was lucky. The consequences could have been catastrophic – as we were repeatedly told three months later when a further stroke landed him in Great Ormond Street.  Had we left the GP’s that day and gone home with just the paracetamol, the final stroke may well have been fatal.

Oli has made a fantastic recovery, but the trauma has left its scars on me, his mother.  I’m speaking about it now, to coincide with Action on Stroke Month 2013 and the launch of the Stroke Association’s report:  Feeling overwhelmed, because the emotional impact on families is still relatively forgotten during the rehab period and beyond.

Stroke can happen to people at any age and, when it’s a child, the massive emotional trauma impacts on the whole family and can be at least as devastating as the physical problems that many stroke survivors are left with. Emotional wellbeing is vital for a good recovery, both physically and mentally, and The Stroke Association’s report shows that carers can be affected equally as much as patients – in fact, for some carers, the emotional problems can get worse, not better.

It’s important, too, to remember that, in most cases, there’s a whole family affected.  It can be particularly hard for siblings, especially if, as I did, the mother lives at the hospital, leaving another child or children to effectively cope alone.  My older son Ben was 15 and in the middle of his all-important GCSEs when Oli fell ill.  I’ll always be grateful to the wonderful bank of friends and cousins who rallied round, bringing trays of food, taking the laundry, driving him to places he needed to go.

For grandparents, too, the emotional impact is intense.  The older generation mourns the loss of their peers to stroke, they can’t comprehend this cruel and sudden attack on someone so young.  My own parents temporarily stopped working to provide the support we needed at that time, but not all families are lucky enough to benefit from an extended family structure.

School support

Shockwaves reverberated around the boys’ school too. They recognised the incredible strain weighing down on the whole family, and we were fortunate that they stepped up and offered extra support to both boys.   They wrote to the exam board to explain the extenuating circumstances under which Ben sat his exams and, when Oli eventually returned to school, we felt confident that he would be well cared for during the day.

Meetings were held to discuss what extra assistance was deemed necessary, and Oli’s classmates were educated to recognise the signs of stroke – like the highly publicised FAST campaign:

• Face – is it drooping?
• Arms – can the person raise them both?
• Speech – is it slurred?
• Time – to call an ambulance!

Crumbling finances and family breakdowns

Our lives changed irreversibly.  I stopped working to be with Oli at the hospital, and then to care for him at home, eagle-eyed and possessive to the point of making us both crazy.  My husband lost his job, a hard-nosed and ignorant HR manager at his company telling him that her granddad had had a stroke and she hadn’t taken time off work…  Yeah?  Like that’s the same thing!  He had cause to fight a legal battle for unfair dismissal, but neither the time nor the inclination.  Our total focus was on Oli.

But of course the effect of this was two lost incomes and a mounting pile of debts. Imagine the pressure of crumbling financial security on top of living on a knife edge with a child you fear will collapse any moment.  Families fold under far less harrowing circumstances.  They can’t communicate, they can’t cope, they struggle with a new family dynamic and changed identities.  Finances dissipate, everyone’s exhausted, everything breaks down.

The new report reveals what those of us living it already know: ‘stroke causes an emotional shockwave for carers.’  It names lack of sleep as one of the key problems – imagine that as a parent!  I still check my son in the middle of the night to make sure he’s breathing.  It’s no wonder exhaustion compounds carers’ anxiety; when you live with a constant, overwhelming fear it infiltrates not only your daily life, but your dreams too.

The ensuing negative impact on relationships seems trivial compared to the physical battle some survivors face, yet a strong and nurturing family relationship relieves the loneliness many may face – especially if they can’t talk to each other and don’t have access to anyone professional to share their feelings with.

Building a business to work from home

We’ve been lucky; we made it through. My husband found another job and I set up my social media business – working from home and limiting myself at first to only taking on London-based clients, keeping me close to Oli.  I travel around now, but it took time for me to be comfortable being out of touch for any length of time.   For two years I refused to be more than a 30 minute journey from wherever Oli happened to be, and I’d take the bus to London rather than be unreachable on the underground.  It’s so important for mothers to maintain their identity after a major family trauma and I’m lucky to have found a niche in the market to create a life that works for me and my family.

As Oli’s health improved I was able to expand the business.  Children are resilient, and even stroke survivors may improve sufficiently for carers to regain enough independence to recoup some of the features of their ‘previous life’.  It can be possible for a mother caring for a sick child to continue to work, albeit in a slightly different format to their previous career.  There’s a balance there – it may be delicate, but it’s definitely there if you have the determination to find it.

So I’ve been fortunate to have built up a thriving company – creating on-line profiles for clients, training them to use social media effectively for their business or managing it for them: tweeting, blogging, posting updates, keeping them visible and well-branded across the Internet.

Our Facebook community

Somewhere along this path back to a state of ‘kind-of-normality,’ I set up a Facebook group for the parents of other child stroke survivors.  I’m able to traverse that path with the odd skip and a jump now, but in the long days and nights following the initial shock I couldn’t contemplate life ever resembling its former self – or me, for that matter.   Membership currently stands at 58 and it’s a forum for discussion, advice and support.  An anxious parent can throw out questions relating to hospital tests, treatment, social service support or whatever they need to know, and someone will reply, day or night.  People share stories of their child’s achievements too, and receive encouragement and love from our little community, brought together through tragedy and moving forward hand-in-virtual-hand towards a brighter tomorrow for our kids.

The new report

My introduction to The Stroke Association also came via social media.  It’s a charity that works directly with stroke survivors and their families, along with health and social care professionals, scientists and researchers;  giving people affected by stroke a better life.

Its latest report: Feeling overwhelmed, calls for psychological and emotional support to be recognised as being as important to recovery as physical rehabilitation.   The team firmly believes that the emotional needs of carers must be recognised and appropriate support made available to them.

The report findings focus on adult survivors, yet with childhood stroke, the emotional impact inevitably crushes the whole family.  High levels of fear of a recurrent stroke are widely reported, along with feelings of anger.  Couple this with a parent’s constant self-doubt – could we have prevented it?  Did we genetically cause it? – and you have a perfect recipe for depression. The Stroke Association’s point in commissioning the survey is to ensure that stroke survivors don’t feel abandoned after leaving hospital, and to push for greater availability of information and practical advice to help families cope with the onslaught of emotion that can be as crippling as the physical effects.

Today…

The Stroke Association’s official pic of Oli as displayed on its website

So here we are, four years later – we’ve all survived, although no reason for the dissection that caused Oli’s stroke has become evident.  He is taking his A levels and we’re so proud that he has received offers from every university he applied for; a glowing academic career looms.  His dad is finally settled in a job he enjoys and his brother is studying law at uni. I’m slowly coming out of my constant state of anxiety – meditation helps.  As a family we managed to stay cohesive, and the Stroke Association aims to make sure all families can do so, with whatever support they may need.

To find out more

May is Action on Stroke Month 2013. To find out more about what’s going on please click here. You can also find out more about childhood stroke here.

I tweet about stroke, as well as social media – you can usually find me here: @WeekendWitch.