When a loved one is facing a terminal illness, it deeply affects the whole family, right down to the youngest, as the McCluskey family from Comber discovered. In order to cope, even the strongest of families need support. Ann McCluskey tells Jane Bell how Northern Ireland Hospice Care helped her family through, and far beyond, her husband Jim's death from lung cancer and why they want to give something back to the charity during its Christmas appeal
When the end was inevitable, Jim McCluskey knew that he wanted to die in his own bed at home, with his family around him. Ann, his wife of 34 years, and their seven children were able to see it through, with the help and support of Northern Ireland Hospice Care.
"The support the Hospice gave us helped us give Jim what he wanted and that, in turn, gave me comfort," Ann says.
Jim, a former youth football coach, died in March last year at the age of 56, just six months after being diagnosed with lung cancer.
"He was one of those people who hated going to the doctor and anything to do with hospitals," says Ann. "He had to be coaxed every time."
By the time it could be put off no longer, the outlook was very poor. From his diagnosis in September 2005, he wasn't expected to make it to Christmas. As he faced his last months, for Jim there was no question: home was where he wanted to be, with his family.
"I sat with him all day, every day," says Ann, "and his sister, Lottie, sat with him at night, so I was able to rest and carry on the next day."
While her husband's early death, before they could even begin to enjoy a well-earned retirement together, hurts deeply, it soothes Ann that they were able to nurse him at home.
"We'd been together since I was 17 and he was 21," she says simply. "I miss him every day, but it does helps that we were all there for him right to the last and that he got his wish to be at home to the end."
The McCluskeys are a big family - the eldest son, also named Jim, turns 35 at Christmas, quickly followed by brother Darwin (34) and sisters Annette (32) and Fiona (31) and, after a gap, Jonty (now 20) and 18-year-old Marty. The youngest sibling, Aaron, is just nine, little older than some of Ann's seven grandchildren. And, as a family, it was instinctive to pull together.
Even so, extra support was welcome in their hour of need. "Jim was mobile until after Christmas. He was still at home, but had to go back into hospital briefly for tests and treatment," Ann explains.
Given the advanced stage of his aggressive cancer, he decided not to go down the route of radiotherapy and chemotherapy, but to spend the time remaining to him at home.
The family was put in touch with Hospice nurse specialist Sue Foster, who became a regular visitor. "As well as nursing care and sorting out medication, Sue was very supportive. Whatever we wanted to do, she would help," says Ann.
"She listened to Jim's fears and he was able to talk to her. There may have been things Jim didn't want to burden us with. And whatever helped him, helped us."
After one necessary hospital stay, for an operation, medics feared he wouldn't make it.
When he did rally and was able to be moved, the family took him home right away. Ann praises the hospital staff's care and understanding - even bending the rules to allow Jim to be admitted on the day of his operation, rather than the customary night before, to minimise his stress.
"When it came down to it, he didn't want to die in hospital. He wanted to die in his own home, with all of us close at hand," Ann says. For the last five weeks when he was bedridden at home, Sue came out and helped us through.
"For the last two days he was on oxygen and they had to increase his medication for pain relief. But, with Hospice help, it was still possible to care for him here. He got the death he wanted - and that gave me ease."
It was a trial for everyone in the family but, at the time, it was impossible to tell how the loss of his father was affecting young Aaron, who was just seven. Ann had trod a careful path between preparing the child in advance and protecting him.
She recalls: "I tried to break it to him gently, telling him during the illness that his daddy was sick and there are some sicknesses you just can't cure."
Breaking the news of Jim's death, she took the child aside and tried to explain to him in simple visual terms, using a cast-off dressing gown, her belief that while the body is left behind, the soul goes on. With the rest of the family, Aaron had viewed the body and attended the funeral.
He appeared to be coping well but months later it seemed to really hit him. "After Christmas he was really angry all the time," explains Ann. "Everything seemed to annoy him. It only seemed to be hitting him then."
Again, when they needed help, the Hospice team stepped in. Lorraine Graham, social worker at Northern Ireland Hospice Care, offered one-to-one counselling which, Ann says, made all the difference.
The conversations which drew Aaron out were more like gentle, exploratory 'games' that allowed him to express what was really going on.
It emerged, for instance, that other children had been teasing him about not having a dad. And it came out in conversation that the child had been fretting about a time, when his father was bedridden, he had come bursting noisily into the room, tripped and had been told "Be careful, your daddy's sleeping, he's sick".
"Nobody else even remembered it," says Ann. "The Hospice team are wonder workers. And their support doesn't end with the death. The counselling really helped Aaron. He calmed right down again."
He and his mum have since attended a bereavement weekend organised by Northern Ireland Hospice Care and plan to go away on the next weekend, to be held at Corrymeela.
"It was good to meet other parents in the same position, to be able to talk and express your concerns," she adds. "And it helped Aaron to meet other children his age who had lost a parent."
Ann helped her youngest boy put together a memory box containing special things like the now outgrown denim jacket and Manchester United strip Jim gave his son.
"He even insisted on putting a can of beer in there 'for Daddy'," she smiles.
Everyone in the family has their own way of remembering. When younger daughter Fiona married in August, an extra 'button hole' bloom was ordered for her late father.
Her mother-in-law, Geraldine, also died of lung cancer just a month after the ceremony.
As the second Christmas since Jim's death approaches, the family will be taking an active part in the Northern Ireland Hospice Care Christmas Lights appeal, which culminates in the Ceremony of Lights on December 19.
The McCluskeys will be there and hope that many others will show their support, too.
Anyone wishing to sponsor a light can make a donation to Northern Ireland Hospice Care, Head Office, 18 O'Neill Road, Newtownabbey, BT36 6WB, tel: 9078 1836 or www.nihospicecare.com