At the heart of the family

WHEN 53-year-old Corkman Ray O’Brien went home from work one day and said he needed to lie down, his wife Nancy thought nothing of it.

He had been complaining about headaches and was going to sleep a lot at lunch-time on his breaks, and being a bit forgetful.

However, when he didn’t get up the next day, and he never took his usual drive to watch his daughters training at the nearby GAA pitch in Dunmanway, the family knew something was up.

Within a few hours he was in CUH having suffered a stroke, which affected the brain stem at the base of his neck. The ambulance stopped a few times on the way to Cork, his wife recalls. “The crew thought they had lost him. They gave him two hours to live at one stage, but he made it.” He was still anointed in hospital the next day, as the staff didn’t expect him to live, but, like so many other times in his life since, Ray pulled through, and went on to confound the medics.

He spent the following five months in his hospital bed, diagnosed with ‘locked-in’ syndrome. “Basically, he went to bed at 53, and never woke up,” is how Nancy describes it now.

What followed in the early stages was a constant battle with those who had lost hope for him. But his family never wavered. “We had a friend who visited him,” recalls Ray’s daughter Margaret, “and he said he felt him squeezing his hand. We were told that they were just the natural reflexes of a dying man, but we didn’t want to believe it.”

Then one day Nancy noticed Ray’s toes moving. It was just a small glimmer of hope, but it was enough for her. “I suddenly realised that if he could do that, he could communicate.”

“At first we were naïve,” says Margaret, “we tried asking him questions to get a response from his toes, and then doubling back with the negative of the question to check, making him do twice the work!” They soon discovered a system, where one foot indicated a ‘yes’ and the other was ‘no’. For the past seven years, this is how Ray’s family and friends have communicated with him.

“They didn’t want us to take him home,” remembers his daughter Anne, “but we knew he would rather be here.” ‘Here’ is a wonderfully warm and inviting bungalow outside Dunmanway, where Nancy tends to her beautiful garden during the day, overlooked by Ray’s purpose-built room. “It’s my therapy,” Nancy smiles, proud of the spectacular colour of the borders in full bloom. “I wasn’t much into gardening until Ray got sick.”

The garden is very important for her peace of mind, because Nancy has never left Ray’s side for more than a few hours, since that black day on July 2, 2004.

She recalls the first night they brought Ray home from CUH, against all the medical advice. “They brought him in at 9.30 that night and put him in the little room we had then, and left. We just all stood around looking at each other wondering what to do next.” That night the whole family sat up all night watching him. “We were afraid if we didn’t, he would be dead in the morning,” says Nancy.

It took them a while to get used to the routine of medications, cleaning, lifting, and feeding Ray every day. They are constantly worried about infection, since his immune system is very low. They had a few hours ‘training’ at CUH, but were only allowed observe the nurses, for insurance reasons, so when he came home, they were thrown in at the deep end.

“I remember our wonderful GP Con Creedon asking me after the first week if I was sleeping. ‘I am not,’ I said, ‘I am watching him all night’. ‘For God’s sake,’ he said, ‘if he dies, he dies, but you have to look after yourself.’ Sure, I was even afraid to leave him to have a shower.”

Despite the pain of the last few years, there have been some lovely times with Ray, too. When friends were celebrating their wedding anniversary last year, Nancy wondered about bringing Ray. “So I went in and asked him would he like to go, and waited for the response. His toes nearly fell off, he wiggled them so much!” They had a great night, with friends coming over to talk to him and delighted to see him out and about, a rare treat, which takes hours of preparation before and after.

On bank holiday Mondays, two of his oldest friends, Paddy and Mickey, have a little routine of calling into Ray and sharing a few drinks at his bedside, while telling him all the news from town.

Ray has also attended two family weddings and is also thrilled at the arrival of his three grandchildren, who equally dote on their grandad.

With the help of a very determined occupational therapist, the O’Brien family secured a grant to part-aid a new bedroom, bathroom and equipment for Ray. Nancy’s bedroom is adjacent to his, and she wakes a few times each night to look across at him through the adjoining door, to make sure he is ok.

“They say we can have respite, but why would we want respite from him?” says her daughter, Ann. “Sure, we would just have them bothered down in the respite place, visiting him!”

The family, including Ray’s son Pat who lives nearby, have all rallied round and become much closer since Ray’s illness, determined to give him a good quality of life. Ann says she has heard some cruel comments from people who don’t really know any better. “They say things like ‘wouldn’t you be better off without him now?’ or ‘Wouldn’t it be best if he was just taken?’ but they don’t realise how wonderful it is to be able to come home and go in and say goodnight to him.”

“Yes,” agrees Nancy. “People ask me how do I cope, but my question would be, ‘how would I cope without him now?’ ”

What is locked in syndrome?

Locked-in syndrome is the condition whereby a patient cannot communicate verbally with others, and is usually paralysed, with the exception of a few muscles.

However, it is believed they are fully aware of what is happening around them at all times.

It is caused by a brain stem lesion and the term was attached to the condition in 1966.