Carer’s role too often overlooked

Carers’ Society Otago community worker Jackie Stewart and manager Susan Easterbrook. PHOTO:...
Carers’ Society Otago community worker Jackie Stewart and manager Susan Easterbrook. PHOTO: GERARD O’BRIEN
They are the invisible workforce, the thousands of relatives and friends who care for someone without payment. In the latest part of the Otago Daily Times series on ageing, Mike Houlahan looks at the people without whom the aged-care system would collapse.

The New Zealand Positive Ageing Strategy supports it and the vast majority of people want it - to stay living in their home as long as they can.

There is a third party to this contract, though, the person who offers the older person the care to enable them to retain their independence and does so.

Often a spouse, commonly a child, the newly appointed carer often gets the job without an interview and by default.

Suddenly they are responsible for someone else's needs, and with no training find themselves doing basic nursing, monitoring medications, cleaning, washing, chauffeuring, entertaining, cooking - the list of tasks is endless.

They also find themselves having to navigate a complicated system to work out what entitlements they and the person they care for are eligible for.

Their work is of immense value, both for the person they care for and the economy.

A recent US study put the value of unpaid work caring for dementia patients at $US218billion ($NZ322.6billion) annually.

Reduce that number to reflect New Zealand's much smaller population and then widen it to reflect all kinds of aged care, and it would easily be in the hundreds of millions of dollars.

Despite which, carer's contributions are seldom acknowledged, Carers' Society Otago manager Susan Easterbrook said.

"One in five people will be a carer at some stage of their lives," she said.

"I suspect we are helping a frantic few, because if you consider the size of Dunedin's population there is no way we are helping 20% of them.

"We have to assume those people are doing OK - or they don't know what they are missing out on."

Carers' Society Otago has been caring for carers since 1997, after evolving from a collection of informal caregiver groups.

From its Community House base its two community workers apply a shoestring budget to assisting more than 600 carers throughout Otago - not just the aged, but also disabled and those with chronic illness.

Another bugbear for Ms Easterbrook is that carers are given very little information.

"They go and get an assessment at the hospital for the person they are caring for but no-one ever mentions this concept of carer support to them. There is a lack of information and poor communication.

"Eventually they come here, find out about their entitlements, and ask `why didn't someone tell me this years ago?', so they have missed out."

Carers are entitled to 28 days of respite assistance yearly, but the vast majority of those days end up being banked.

"There are no respite beds open in Dunedin. People have taken carees to Gore, to Balclutha, Invercargill, Palmerston," Ms Easterbrook said.

"What is also frustrating is that they cannot plan it.

"If they have a bed it will be tomorrow for two weeks, and you say you wanted it for a wedding in a fortnight and they say `sorry, we're full then'.

"It means that carers basically become housebound."

As a consequence, carers themselves often became ill, community worker Jackie Stewart said.

"You have remember we are often talking about an ageing couple and the carer is ageing at the same rate of the person who they are caring for," she said.

"They often don't look after themselves because they have been so focused on the person they are caring for - something is niggling, they put it off and put it off and three months later find out if they had gone straight away it could have been something quite minor but it ends up being something major instead."

Not only is the carer focused on the person in care, they are also the focus of their friends and family.

"One person who had been looking after his wife for a year said to me that everywhere they went everything was focused on her and stroke," Ms Stewart said.

"He just felt like the water was getting higher and higher and he was getting out of his depth ... finally, after a year, someone finally asked him how he was."

It is not all doom and gloom - many people find caring one of the most rewarding things they will do, and many people who have been a carer will often find someone else to look after if the first person they look after dies or moves in to fulltime care.

"We help people cope," Ms Easterbook said.

"We let them know what all their options are, and make sure they know what they need to know to help them cope."

The Otago Daily Times is running a series of articles concerning ageing. If you have a story to share, contact mike.houlahan@odt.co.nz

 

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