Enduring love that inspires carers' efforts

Published on Friday 15 June 2007 11:53

More than 71,000 people in the Lothians look after family members suffering from mental or physical illness. With Carers' Week currently under way, three Edinburgh residents tell BETH MELLOR how looking after their loved ones has changed their lives

GARY MENZIES stood nervously chewing his lip as he waited at the door of the Rangers Club in Dalkeith for his blind date to turn up. It was 1974 and the sound of music from the band floated across the night air. But Gary didn't hear a thing because walking towards him was Carol Nicholson and she was the prettiest girl he'd ever seen.

The couple had been thrown together by chance after Gary's sister-in-law played matchmaker, but it didn't take long for them to believe their meeting was fate.

Carol was quick and funny and all of the things Gary dreamt of in a wife. So when she accepted his proposal just nine months later, he felt like the luckiest man alive.

33 years later, Gary relaxes at home and smiles fondly at Carol, who is sitting, elegantly dressed, in her wheelchair. "We married the following year at the registry office in Edinburgh and had our reception at a hotel in Bruntsfield," recalls Gary. "It was a great day."

The couple's daughter was born in 1975 and their son arrived just two years later. It was a blissful time for the Menzies family.

Then, in 1985, Carol started to experience health problems.

"We first realised that there was something seriously wrong when Carol began falling over for no reason," says Gary. "It was almost as if she couldn't control her muscles. It was terrifying."

But worse was to come. Carol was eventually diagnosed with multiple sclerosis (MS) - a progressive neurological condition.

"We were devastated," remembers Gary, of Southhouse, Edinburgh. "You have all of these dreams and in one moment they go up in a puff of smoke.

"Carol was more accepting of the MS than I was, but neither of us really knew how bad it would get. We both hoped we would have a few more years together before things got really difficult."

Within a few years Carol, 61, was forced to use a wheelchair and eventually her condition deteriorated to the point that she was unable to walk, see or speak.

"I know that Carol felt guilty about relying on me at first, because I had to change my life so much. She knew that I was a lot more restricted because of her MS. But there was no choice really, we just had to make the best of things. The really difficult thing for me, to be honest, was seeing her in such a difficult situation."

But Gary, 53, also found himself mourning the life he once had.

"We used to be quite active when the children were young," he says. "We took them on day trips to Loch Lomond and to the park. But when Carol got worse, it obviously became impossible for us to do things like that.

"It was hard work, especially with the two children as well. Although they were good kids, it was difficult. I felt that I had to be both a father and a mother to them. But I wanted them to lead their own lives too, so I continued to do almost all of the caring."

Today, Carol is trapped in a world which is dictated by the constraints of her condition.

She smiles lovingly in her husband's direction but is unable to see him and finds it difficult to communicate with her family. Still, the enduring love between the couple is apparent.

Gary says that, as well as losing the relationship he imagined he would have with his wife, his life has turned out very differently in many ways other ways too.

"I thought that when we were in our 50s we would still be living an active life and be out and about. But it is hard to get out. Lots of places just don't have facilities for disabled people and it takes a lot of planning for us to go anywhere.

"I know that a lot of carers often lose contact with their friends but I am lucky in that I've had a few good friends who have stuck by me and still come to see me."

Gary also mourns the loss of his working life. He was working as a supervisor in a DIY store when Carol was diagnosed with MS.

"It was a job that I enjoyed and I had hoped to progress and to become a manager," he says. "But as Carol got worse, I ended up having to take more and more time off to look after her. In the end I gave up my job completely."

Gary, however, is remarkably positive about the future. "The last two years have been much easier for us, because we have had help from a respite carer," he says.

With his extra time, Gary has taken a course in community care and is doing Open University healthcare courses. Most of the work can be done at home, but he also helps out once a week at Craighall day-care centre.

"Things have changed now that I have more help from carers," he says. "But there are days when it seems as if everything's closing in on me. Carol's wellbeing is always on my mind. It is hard to relax when you care for a loved one."

'It's not the relationship I imagined we would have'

AN older sister is normally looked up to for help and advice or a listening ear in times of crisis but for 20-year-old Edinburgh student Alice Searle, the relationship with her sibling is very different.

Alice's sister Helen is three years older but, because she has epilepsy and also suffers from depression and anxiety, she relies heavily on her younger sibling for support.

"Helen generally finds doing things a lot harder than I do and, needs to be checked on frequently, which makes me feel like the older sister," says Alice, of Marchmont. "We are close, but it is not the type of relationship that I imagined we would have."

Alice moved in with Helen when she started a psychology degree at Edinburgh University three years ago.

It was the same year Helen graduated from her studies but, because she suffers from anxiety attacks in social situations, she wasn't able to cope with the stress of a job.

That said, Helen enjoys being as independent as possible and has completed adult education course and enjoys writing short stories.

Helen's condition deteriorated when she was a teenager and Alice remembers feeling increasingly fearful for her sister's wellbeing.

She adds: "Helen started getting serious seizures when she was 14 and it seems to have got a bit worse as we've grown up. I do have to watch out for Helen when she has epileptic seizures but the most stressful thing is trying to look after her mental health, which is linked to her epilepsy."

As Helen's main carer Alice concedes that her lifestyle is not as carefree as most students. "I do sometimes have the time to go out and do other things, but I always have to think about Helen as well, and I worry about her safety."

'He can get quite angry if things are not done his way'

WHEN mother-of-three Angela Ewart noticed her two-year-old son William wasn't walking and was also having difficulty pulling himself up from the floor, she couldn't understand what the problem could be.

Worried, the 32-year-old took William to the doctor who immediately referred the youngster to the Sick Kids Hospital in Edinburgh.

Cerebral Palsy, a condition which meant the determined youngster's brain was not able to control some of his muscles, was the diagnosis that was to upset the balance of family life significantly.

"I think I was just really shocked," recalls Angela, who lives with her husband and three children in Loanhead, Midlothian.

And if this wasn't challenging enough, it soon became apparent that William, who is now aged ten, also had behavioural problems too.

"William can be really awkward - demanding," says Angela, of Loanhead, Edinburgh. "He can be hard work at times.

"He has his routine, everything has just got to be perfect for him and he can get quite angry if things are not done his way."

It is also up to Angela to ensure William's clothes are laid out in a certain way so he can pull his clothes on in a particular order. He will also only eat his breakfast with a certain spoon, his dinner with his own knife and fork.

"You've got to know what's ahead," says Angela. "You can't spring any surprises on him and you have to tell him what's happening the following day."

Being a carer for the Paradykes Primary pupil, as well as a mum to her two other children, Lauren, 12, and five-year-old Joseph, means that Angela has her hands full.

"There's probably a lot more pressure on me now and there's a lot more to worry about. It can be stressful."

SUPPORTING THOSE WHO GIVE HELP FREELY

NATIONAL Carers Week is a time when the carers in our society are acknowledged for the important role they play in caring for relatives.

The aim of this week is to raise awareness about the impact being a carer can have on the lives of those affected.

If you wish to find out more about becoming a carer or are a carer yourself, there are a number of organisations that offer support and advice.

Voice of Carers across Lothians can be contacted on 0131-622 6666 or at www.vocal.org.uk.

The Edinburgh Young Carers Project can be contacted on 0131-475 2322. More information can be found at www.youngcarers.org.uk.