Wednesday 18 September 2019

'I'm absolutely exhausted' - pensioner who has cared for her ill daughter for 39 years

Sisters Lavina and Finula Byrne
Sisters Lavina and Finula Byrne

Alan O'Keeffe

A desperate plea for realistic homecare support has been made by a "totally exhausted" mother who has cared for her ill daughter for 39 years.

Pensioner Lena Byrne said daughter Finula (39) is ready to be discharged from Beaumont Hospital in Dublin but she cannot cope with her daughter's full-time care at home without HSE help.

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Finula is intellectually disabled and has a severe form of epilepsy, which worsened significantly during the summer and required her to be hospitalised.

Doctors say she is ready to be discharged and Finula has pleaded to be allowed to go home.

"I'm absolutely exhausted. Finula needs to come home but I just can't cope without a proper homecare package," Mrs Byrne told the Sunday Independent.

Mrs Byrne has been travelling from the village of Blackwater, Co Wexford, at the beginning of each week for the last nine weeks and has remained at her daughter's side from early morning until late at night each weekday. She sleeps in a nearby B&B.

Her request for a 49-hour homecare package has been turned down by the regional HSE services in Co Wexford.

"Finula was always an outgoing, resilient, bubbly, affectionate girl who has loved Westlife and musicals such as Mamma Mia. But the longer she stays in hospital, the more she has been deteriorating, both mentally and physically," said Mrs Byrne.

Finula normally lives at home with her mum and dad Vincent. A homecare assistant visited for an hour each weekday to get Finula ready for her day-long visits to St Anthony's Unit at the Co Wexford Community Workshop.

Some nights, Finula would suffer up to 10 epileptic seizures. But her condition deteriorated some months ago and hospital tests showed the number of seizures had multiplied at night.

Mrs Byrne has been her main carer throughout her life but she has now admitted she gets very tired and "can't cope any more" without adequate help at home. Her husband also recently underwent a hip replacement operation.

The couple have two younger daughters - Lavina, who lives in Galway, and Patricia, who lives in Dublin. The daughters visit Finula at weekends. The couple's only son, Eoin, lives in Australia.

Lavina said the family are "in absolute turmoil" at the present situation.

Her parents spent their lives caring for Finula but they are now past retiring age and Finula's complex needs have multiplied, Lavina added.

Her exhausted mother said: "Finula is so unhappy. She needs to come home."

A HSE spokeswoman said it does not comment on individual cases, operates on a finite budget with a wait list.

"Family Carers Ireland are coming across cases similar to Lena's every day," said Catherine Cox of Family Carers Ireland. "In every county we have carers who want to care for their loved ones at home, or want to bring them home from hospital, but cannot do this without home support."

HSE figures show 568 families on a waiting list for home support hours in Co Wexford for over-65s. Waiting times range from three months to two years.

"A postcode lottery exists across the country whereby where you live determines what supports you will, or will not, receive," said Ms Cox.

"The cost of care for Finula in hospital far outweighs what it would cost to care for her at home, where she wants to be and where her family want her to be. While Government has committed to introducing a statutory entitlement to homecare over the next two years, families like Lena's cannot wait that long for basic supports - we need to see an immediate investment in homecare that addresses the chronic gaps in home support hours and respite provision across Ireland," she said.

"We have thousands of family carers across Ireland in crisis situations who urgently need support to allow them to continue caring safely in their own homes. We are calling on Government to eliminate this postcode lottery by urgently funding vital supports and services for family carers in their homes and community."

The family has started an online petition for the home care package on change.org and it has 600 supporters so far.

Sunday Independent

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