‘We are all living in fear in relation to where is the axe going to drop next’

MARY McDONNELL has been caring for her daughter Sinéad for 50 years, and it’s not getting any easier.

Now aged 76, Mary has found that if anything, the last half dozen budgets have made life a lot more difficult.

Living in Douglas on the outskirts of Cork City, she tends to the needs of her daughter, who suffers from a very serious degree of cerebral palsy, on a daily basis, alongside her husband who himself suffers from bad health. “Life is a struggle now at 76,” she says. “It’s hard going.”

Sinéad is doubly incontinent, has suffered a dislocated hip and has scoliosis. Her food needs to be minced and moist and she needs to be spoon fed. In latter years, she has been taking a lot of medication to ease her physical spasms, but in turn this can cause sedation which means there is a danger when she is eating that she does not swallow properly and food can — as has occurred in the past — accidently go into her lungs.

She needs a series of verbal prompts to ensure she swallows her food, while the medication has also impacted upon her bowel management, meaning “huge spillovers and lots of accidents — a huge amount of washing”.

“Caring for Sinéad is around the clock,” says Mary. “I am called out most nights, as her limbs can go into spasm.

“It’s all one big fight around getting stuff for our loved ones, it’s not about the person any more.”

The Carers Association said family carers have been hit hard by the economic crisis thanks to direct cuts to payments and “stealth-like cuts to frontline health and respite services”, which they claimed have seen care-related welfare payments reduced by €64 per month.

Mary agrees. “It has impacted in many ways,” she says. “In 2010 there was a cut to respite and as one gets older one badly needs respite.”

That cut was initially one of four weeks, down from 10 weeks annually, but two weeks were then reinstated on a discretionary basis, meaning she now gets eight weeks respite.

“With the ongoing cuts we are all living in fear in relation to where is the axe going to drop next,” she says. “We also had problems getting equipment. We got a sling that was old and worn and not fit for purpose, and we had to wait six months to get a replacement, [and] that was [down to] ongoing lobbying then as well. It expends an awful lot of energy.

“When Sinéad is lying in the bed she does not lie in a straight line, so there is a series of brackets that hold her in the bed. That was very old and had we huge difficulty in replacing it. These sort of things would wear you out.”

These are the silent cuts, the constant push-and-pull of never quite getting what you need first time, and scrapping for the resources that are available, of needing to kick up a fuss to secure the best you can for your loved one. As Mary explains, if your case was listed as P1 or Priority One, it used to mean you were top of the queue for equipment and the like. Now you need to be P1 Urgent.

Describing carers as “an easy target” for cuts, Mary says all the reductions so far have added up to a larger financial headache. The introduction of the property tax, the upcoming imposition of water charges, and the trebling of the prescription charge all add up to less money.

At the same time, the price of electricity and heating — both used extensively given Sinéad’s condition — have risen. Yet Mary has also had a cut to her telephone allowance, which allowed some of the bill to be negated, as well as a reduction on her heating allowance. She is worried there could be more cuts on the way.

“A huge fear now are those of us who are on a half carer’s allowance,” she says, referring to cases where someone is in receipt of certain social welfare payments — such as a pension or widow’s allowance — and providing full-time care to another person, meaning they can keep their main social welfare payment and get a half-rate carer’s allowance as well; 50% of carers over 65 are on a half carer’s allowance.

“The services and supports we receive are at whims and discretion of the HSE and Government. We live in fear and trepidation that there would be more cuts.

“Joan Burton [the social protection minister] said she will not touch ‘core’ social welfare payments, and we have then heard that the half carer’s allowance won’t be considered a core social welfare payment. Enda Kenny said... that he would look after carers and protect those most in need, but the words are cheap and we are not impressed at all with them.”

She also has to look at her own future. “My age is a big fear,” she says, “long-term residential care, that’s another fear I have — too many people and not enough places. My fear is austerity is going to go on and on. I am 76 and I want to stay in my own home for as long as I can. It’s hypocritical and totally against their policy. It’s very depressing and it’s an added worry to us carers.

“It seems to be the most marginalised that take the first hit.”

Despite it all, she can still eke out a laugh. Asked what she can do about the looming prospect of further hardship, she says she will lobby politicians and battle with the authorities to secure the best deal she can for her family, before adding with a laugh: “What could I do? I can hardly sell my body.”