Sharing the caring

YEARS ago I used to write a column for Another Paper about careers, so all the post I got those days had the word career written…

YEARS ago I used to write a column for Another Paper about careers, so all the post I got those days had the word career written on it. And when I see the word career now I often think it's a mis-spelling of career, like when you think "shopfitters" is "shoplifters" and wonder why they are advertising themselves.

But of course it is carer, a person who cares for others, and the very fact that we are not sufficiently used to the word is an indictment. It's because we have not opened our eyes enough to the word, to the concept and to the hundreds of people around us who are in this role. And the reason is often because those who do spend their lives, caring for others - a mother with Alzheimer's disease, a father suffering from the results of a stroke, a son with brain damage as a result of an accident, a Down's syndrome daughter, a sister with multiple sclerosis - never call themselves "carers". They are just people who are getting on with it.

They don't define their lives as lives of looking after someone else, and because they don't, we don't even though that's exactly what the situation may be. Because they are so invisible, not only do we not really know how many of them there are out there, women and men whose waking hours are spent lifting the often heavy and feeble bodies of the people they love from one place to another.

Their lives involve organising, feeding, washing, encouraging, entertaining and even guarding those who they look after.

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The statistics revealing how many there are, the amount of work they do and the degree of their needs, have to be guessed at because, generally speaking, carers will not come, out and list what improvements would make their lives much more worth living.

They hesitate to admit what they do in case someone thinks they are putting limits on their love and blaming the poor patients for being frail. They will not raise a voice in demand for them selves because it might sound to the woman in the chair man in the bed or even the spirit of the disturbed child, as if they are unwilling to bear the burden and want to be free of it.

There are a lot of carers around us but they will never admit that this is what they are. No secret society has more rigid rules.

They do not want to be pitied, or patted on the back. If they rage inside at the bad hand that was dealt to them they do not wish even to articulate it. To admit that life is nightmarish looking after someone helpless on a permanent basis is like saying that this person is a nightmare, and loyalty as well as love will not let them do this.

Nobody wanted to have a face that is contorted and unable to speak with clarity or drink soup without dribbling.

Nobody wanted to be paralysed from birth and have no control of limbs or movement.

So the carers refuse to admit how bad things are because it's like handing out further punishment to the afflicted. If they pretend that the whole caring business isn't too bad then somehow in their minds they give the cared for more dignity.

This is one of the problems that Care Alliance Ireland is facing in its effort to set up its National Carers' Register . . . the very generosity of the dedicated people who provide a home and attention for the elderly, the chronically and terminally ill, and those with mental or physical disabilities.

The register is just a list, basically. They need very little information, just vaguely what age group you are in, the relationship to the person being cared for, the nature of the disability and the year that caring began.

They ask you to tick, from a list of possibilities, what might be helpful to you. Like training? Or transport? Or a financial allowance? Anything that would give a general picture of what is actually needed in your individual circumstances.

They assure everyone that this information will be kept confidential and that the whole reason for setting up such a list in the first place is strictly so that statistics might be realistic rather than based on guesses.

It has nothing to do with spying on people to know details in connection with any carers' allowance. It is not a matter of listing names to add to a huge publicly printed petition where people are coming out to say that they are downtrodden. It's just an effort to set up the machinery to give people a voice.

Care Alliance is drawn from groups such as the Soroptimists, Age Action Ireland, the National Association for the Mentally Handicapped, AWARE, the Irish Wheelchair Association, the Cheshire Homes the Red Cross and many, many more. Its only aim is to make the position of carers more visible, to give them a voice to ask for services. If there is no voice demanding services then why should service be provided?

So great, you may think. Sorely this National Register of Carers will get off the ground and then the Government and health authorities, having been able to identify, the strength and wishes of this huge prop in their community care network, will listen and ask carers to participate in the planning of services.

Not so fast.

They couldn't get a group of women to pose for a photograph to publicise it all. Nobody wanted to parade their woe and hard work. It might look as if they were asking for sympathy, money or praise.

They are not asking you for any money nor offering you any. They don't seek a list of com plaints; they don't want to force you to change your ways. But without knowledge there can be no help.

So if you think you just might be a carer, isn't it worth sending for the form to: Care Alliance Ireland, 114-116 Pearse Street, Dublin 2.