Getting the work-life balance right – my life as a working carer

In 1998, my then girlfriend Portia was diagnosed with relapsing MS. We knew immediately what we wanted to do – we wanted to get married. So soon after, Portia became my wife and our life together began.

At the time, we could easily manage. Three children came along and we could enjoy life with them without too much trouble.

Then our lives changed again in 2014. Portia had an epileptic seizure one night at the dinner table. She was rushed into intensive care and spent three weeks in hospital.

To make matters worse, she caught a superbug and pneumonia while in hospital. The whole experience was traumatic to say the least.

For the next six months, we were in and out of hospital as both Portia’s epilepsy and MS got worse. Two years on, Portia is now diagnosed with secondary progressive MS.

Becoming a carer

Until the seizure, I’d never considered myself a ‘carer’. However, Portia needed me more than ever and I needed to take lots of time off work at very short notice.

I soon found out taking leave to care for someone isn’t easy. My company had no procedure in place for carers, and organising statutory leave was complicated and time consuming.

It couldn’t be possible that in my company of 30,000 people, I was the first to take time off to care for a loved one.

I wanted to make sure no one else would have to go through that. I raised the issue with HR and together we created a UK carers’ procedure.

I also founded the company’s carers’ network to share knowledge and experience. Over 150 members have joined in its first year.

Being the back stop

I work full time as an Associate Director for Urban Design at an international consultancy company. And I’ve struck a balance between work and care commitments.

When I’m not at work, I pretty much spend every hour supporting Portia and our family. I don’t really have ‘spare’ time anymore, or indeed time for myself.

I get up a few times a night to help with the spasticity in Portia’s legs. The disrupted sleep is like having a new baby. It’s uncomfortable, but you get used to it.

Portia’s care team currently includes up to 50 people and I coordinate them. I’m the back stop – I pick up anything others can’t cover.

There are neurologists, district nurses, occupational therapists, physiotherapists, speech therapists – and numerous others who Portia needs to see regularly. Just don’t ask me about hospital parking charges! We’ve been on the One Show campaigning against them.

Paid care assistants come to the house while I’m at work three times a day to help Portia with meals and the toilet. She also has a personal assistant who comes each week so she can attend courses. Portia recently completed training to be an Art Therapist.

Support needs improving

Coordinating this support team is a huge project in its own right. I’m used to managing large, complex projects at work, and I’d say it’s in the same league as that.

This aspect of caring is often overlooked and support needs improving. I strongly believe the Government needs to fund local Care Coordinator roles as part of a new carers’ strategy – particularly for long-term conditions. I’ve been to Parliament with Carers UK and spoken directly to MPs about this.

Every six months, we also travel to London to see a top neurologist. The care there is exceptional, but the journey takes almost three hours each way – if the traffic is good…

It shouldn’t have to be this difficult. High quality, locally accessible care should be available across the UK.

I hope it will be in the near future. Until then I will passionately campaign for it and I’d encourage others to join in – do what you can, while you can, to help others in the long term.

>> Download our new booklet on supporting someone with MS.

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