Carer Caroline Alexander is dedicated to helping motor neurone disease sufferer Ned Cullen

From left, Julia Cunniffe, Caroline Alexander, Ned Cullen who has Motor Neurone disease and his wife Heather
From left, Julia Cunniffe, Caroline Alexander, Ned Cullen who has Motor Neurone disease and his wife Heather
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HAVING watch a friend die from motor neurone disease, Caroline Alexander knew what she was taking on when she accepted the role of carer for a sufferer.

Caroline was looking for a dramatic change in her life when she noticed the job advert for a carer for Ned Cullen in the Mercury in 2008.

A mother of five, Caroline had spent the last six years working as a childminder to fit in with her hectic schedule.

Before then she had worked with special needs children and adults, including working in a residential school for blind children and a Scope school for cerebral palsy sufferers.

Caroline, who is mum to Daniel, 20, Kati, 18, Molly, 16, Maisie, 11, and Lucy, five, was a childminder for about six years but was starting to feel “unsettled” when the advert appeared.

She was interviewed by the company that employs her, Independent Community Care Management, and then went to meet Ned and his wife Heather.

“There was an immediate click,” said Caroline. “If there wasn’t, it would never work. You’re going into this person’s home and life, you have to fit in.”

Caroline was one of the first carers to join Ned, a former Harrier pilot, who was diagnosed with the muscle wasting disease in 2003. Most sufferers die from the disease within 14 months of being diagnosed but against all the odds, he is still battling on thanks to the support of Heather and his four-year-old son Rory.

Caroline started work as a social support worker so Heather could “be a wife and not a carer”.

Caroline now leads a team of six carers, including herself, who work between 9am and 10pm. Heather is responsible for Ned’s care during the night.

Although Ned’s decline has been gradual, looking back over her time with him, Caroline can see the difference.

“When I started, he was sitting up more. He didn’t use a ventilator and he could use his laptop himself.

“But his personal care got more and more as the months went on and the role changed. He had the non-invasive positive pressure ventilation fitted to support his breathing, which is delivered through a face mask.

“He also had a feeding tube fitted and now he doesn’t have anything orally.

“The other big thing that’s changed is how weak he is now.”

In a typical day, the first carer will arrive at 9am to help administer Ned’s medication. Ned communicates via a letter board and he will also spend time checking his Facebook account, his e-mails and his eBay account with the help of a carer.

When the second carer arrives at 10am, personal care begins for about two and a half hours, including washing and shaving and cleaning his teeth.

Twice a week, his physiotherapist Julia Cunniffe, who lives in Colsterworth, comes to help exercise his muscles, which also requires the help of the carers due to his low mobility.

Ned also has an aromatherapy massage once a week to help relax his legs.

Getting Ned into a comfortable position can take as long as 20 minutes and then in the afternoon, Ned listens to music, watches television or continues on his laptop.

Caroline believes the care team have “extended Ned’s life”, which is why she loves her job.

She said: “The team is good and we are all very supportive of each other because it can be difficult.

“I know that we have done a good job because we have extended his life and making his life more enjoyable.”

Although she accepts there should be a “professional distance”, Caroline says it is difficult to maintain it.

She said: “You can’t not be Ned’s friend. It is a physical impossibility. He is such a lovely man and I have spent more time with Ned in the last four years than I have with anyone else. And Heather and Ned have been as much of a support to me. I have gone through a divorce since I’ve known them.

“It’s not just a job to me.”

For Caroline, it’s the small things which make all the difference. Before Christmas, she helped take Ned to St George’s Church in Stamford to see Rory perform as a shepherd in his nativity.

Caroline said: “Ned never thought he would see Rory go to nursery, let alone see him in the nativity.

“It was a big job but it was worth it. It was so emotional - not just for Ned but for all of us.

“So many things have happened in Ned’s life since he was diagnosed that he never imagined he would see.”

Ned recently celebrated his 42nd birthday with a party at his home in Queen’s Walk, Stamford. Caroline helped arrange for a friend of Ned’s from the Royal Air Force, Dan, to attend from America as a surprise.

“When Dan walked in, Ned said he never thought he would see him again. I knew I had helped make such a difference then seeing Ned so happy.”

Caroline decided to tell her story to help raise awareness of the disease and to help raise funds for the Motor Neurone Disease Association.

So far, Ned’s friends have raised about £9,000 for the association and Caroline and Ned’s physiotherapist Julia will be doing a tandem skydive from 13,000ft at Sibson Airfield in April to help raise even more funds.

Caroline said: “We have done a lot of things to raise money but we wanted to do something with an impact.

“We were joking about doing a skydive but then it became a reality! I am really looking forward to it but Julia is a lot more nervous than me.”

Caroline had hoped to raise £1,000 but she is already beyond that and hopes people will support her and Julia. To sponsor them visit www.justgiving.com/caroline-alexander1 or www.justgiving.com/julia-cunniffe