Caring for carers
Catholic Weekly (25 November 2001) by Kathleen Carmody
Members of the Carers and Parents Support Group
Full-time carers, unsung heroes in their own right, are being offered a helping hand by another band of Catholic 'volunteers'. Kathleen Carmody writes
Looking after a child or spouse with a disability or degenerative disease is a difficult, often thankless, task. Rather than being recognised for their heroic efforts, people who have taken on the full-time care of another can find themselves alone, unsupported and misunderstood.
In response to this lack of support, the Catholic Women's League at Eastwood has for the past seven years been running a monthly support group for these forgotten "volunteers".
The Carers and Parents Support Group meets once a month at St Kevin's Catholic Church, Eastwood, where the carers can mix with others in similar situations. This month's meeting - the last for the year - was attended by around 20 carers.
The group co-ordinator, Maureen Mees, says: "We haven't got the people to go out and actively help so we put on this luncheon meeting and invite any carers that we know of - it's open to all carers - and give them lunch and (have) a chatter and then we have a meeting, or speech or discussions.
"It's a support group."
Its function, she says, is twofold. "They get the support from those of us who aren't carers ourselves - they're just so appreciative of what we do - (and) they also find comfort in one another; meeting up with friends that can understand properly," she says.
"I can be sympathetic but I haven't been there."
The Carers Group does not provide any "pro fessional" assistance, either medical or psychological; it is merely a friendship and support group. But the carers say that even that small lunch meeting once a month goes a long way to making their lot more bearable.
Jean Underwood, whose Down's Syndrome son died two years ago, still attends when she can. She says the Carers and Parents Support Group is a wonderful initiative.
"Andrew was 34 when he died," she says. "And in those days there was just nothing, nothing at all. I think for people having somewhere to go and to talk to others who've had problems as well, that's very important."
Stan Norton, who is caring for his dementia-suffering wife, agrees.
"It just lets you get out and you meet other people and you get an appreciation that everybody's got some problems," he says.
Maureen Mees says there is great concern among carers, many of whom are ageing, about what will happen to their children when they get ill or die.
There is little or no residential support or respite care, particularly for the severely disabled, and even what is available generally suffers from a lack of resources.
"There are at least four (in the group) who have adult children who've been disabled since birth," says Maureen. "It's always been a struggle, but now they're wondering, coming up to retirement age, what is the future for them if anything happens?
"Respite care is in short supply. They need regular respite care and some kind of set-up where they know - especially ones who have kept kids at home and who aren't used to institutions - what's going to happen to them.
"So much of what's there is for the disabled who are moderately disabled … there's reasonable help for them, but for ones that are really needing 24-hour attention there is almost no satisfactory help."
Maureen says that lack of funding and qualified staff often leads to support homes - which are usually operated by churches or charities - closing down.
"It's touch and go with these homes all the time," she says. "Somebody with a 30-year-old disabled child doesn't know where they'll be in 10 years time."
Maureen says that taking on the running of the carers group has been a real eye-opener for her.
"I'm very vocal about putting their case for them for better awareness of their position," she says.
"We have to be more aware, especially through the Catholic Church, to give some more support generally - not just from the top down but from the bottom up."
Maureen says she will keep running the group for as long as she can. She hopes, too, that other areas will follow the lead of the Eastwood branch and set up their own groups.
"I've learned so much," she says. "As long as we are needed I will be backing the group and doing what I can.
"That's how I feel now and the others that come from the Catholic Women's League get so much out of it ourselves that we'll keep going.
"But we certainly need more support.
"There are other areas where this could be done with no more effort than we do. I'd like to see it in other areas," Maureen says.
