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A lifetime of caring - Rosemary O'Neill

02 May 2013

Carers UK member, volunteer and campaigner Rosemary O’Neill opened the State of Caring Conference 2013 with her powerful, heartfelt account of a lifetime of caring - for her brother, her mum and dad, and now, in her biggest challenge, her husband who has early-onset Alzheimer's.

“Caring has always been part of my life. I was six when my brother Robert was born. He is autistic, profoundly deaf and partially sighted. I remember how vocal he was with his screams – no friends were able to come over. He could not sit until he was five, was seven before he could walk. Everything we did was around his routines.

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When Robert was 30, Mam became critically ill – with a range of conditions including angina and severe renal failure. There is no doubt in my mind that all that time caring for Robert had contributed to her very poor health. As Mam became ill, I stepped in more to help.

We started on a path of daily visits with Robert to college, leading to weekend respite, weekly and then ultimately residential care – a 16 year journey to where we are today. Robert is so settled in his placement and his life is so full now, although reaching this point certainly hasn’t been without crisis.

As children Robert and I created our own signs to communicate. That close bond formed as children is as strong today as it was then. He will always be a huge part of my life and  I see him all the time.


Career

I was just 21 and had just been promoted at work when I was first called home because Mam had taken ill. That call was the first of many and any thoughts of advancing my career had to take a back seat.

I married that same year, my new husband Sean taking on not just me, but my family, and all that their illness and disabilities entailed.

As our daughters grew up I decided to look again at the possibility of returning to work. Mam’s health meant returning to office work was impossible. With strong support from her sisters, however, I was able to take a job working nightshifts which I could juggle with supporting Mam.

Over 14 years my employer, Asda were amazing. Work was periods of from nine hours to up sixty hours a week depending on what was going on at home. We had a high turnover of managers, but each one I could approach and explain my situation. Lads and lasses on the shift were great support too.

Collapse

The day did eventually come when, even with support from work, I could not go on any longer juggling work and care. I had my own family, work, Robert and my mum to deal with and we received no social care support.

My own health was suffering massively and finally I collapsed at home. I was in intensive care for six days. It really was touch and go.

Finances were a massive struggle. I couldn’t claim Carers Allowance because of my earnings. We ended up being unable to afford our home and moved in with Mam until we found a property we could afford – an ex-council house near Mam. Dad wasn’t always able to care for Mam, so things often fell just on us.

By November 2004 Mam was dying, but no care home could provide her with the necessary care. Only I could care for her and only in the last few months of her life we were able to get direct payments to support me to care for her.

By this time Dad had also suffered three heart attacks leading to six bypass operations and needed more and more support. And, of course, all the time I was also helping care for Robert. Somehow we coped and I also managed to find a job as a care worker for an older couple.

Overnight change

But two years ago the rug was just pulled from underneath us. Sean, who had always been my rock, was diagnosed with early onset Alzheimer’s. Life changed overnight.

Sean was working on the rigs and had to give up straight away. Although it is early days in terms of the illness, his personality is already changing. There is still plenty of laughing, but underneath huge stress on me. “Talking things through” is something we’ve always done and still do, but Sean can’t always process the information. He can’t tell the time, he can’t handle money, or do the crosswords he once loved. The effect on his speech means that some days it is like playing charades. Every major decision is now made alone.

We have taken the responsible route through our lives. We had insurance, savings and the house was paid off. Our weekly income was enough to get by, just. But every bill these last few years has come from savings. By end of this year when the savings will be gone, the system we both paid into for so many years will not be there for us. We don’t qualify for any social care services. As Sean’s needs increase, I’ll have to quit my job long before he qualifies for any support.

Positive

My life is so different to that of my friends. Some have fallen by the wayside but that was my fault as well as theirs. You feel like you have nothing to contribute to conversation but talk of hospital and medical stuff. The effort of keeping in touch becomes a chore. You turn down invites until one day you realise you don’t always get asked. I have though kept a core group of friends and I have made new ones through Carers UK.

Seven years ago I travelled to London for the Carers UK AGM. As I was on the train, something hit home. Sean and the kids were texting non-stop, asking me how I was and I realized this was my first trip outside of our home town  alone and only my second to London – the first being a school trip. From that very first AGM I wanted to do more. Friendships were made, in particular through the online forum, and the advice and support have been second to none. I now volunteer with Carers UK, helping support other carers online.

I learned so much from my parents. I’m a positive person, I’ve always just got on with things and their love, strength and determination have brought  us to get where we are today.  But there are some days when I wonder why there is so little help there for us and other families like us and why the help that there is, is at risk of being cut. We face losing everything, our savings, my job and my chances to leave the house or see friends. It shouldn’t be like this."

* Carers UK's landmark State of Caring Conference took place on 1st May 2013. The event was chaired by broadcaster Fiona Phillips, who cared for both her parents. Carers UK Chief Executive Heléna Herklots launched the State of Caring 2013 research report at the conference. Heléna Herklots - State of Caring 2013 keynote speech

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