Life Family

Friday 13 December 2019

Woman tells Ryan Tubridy she's postponed her wedding as sister with Down Syndrome is 'living out of suitcase'

Ryan Tubridy
Ryan Tubridy

Patricia Murphy

A WOMAN has said she has put her life on hold because of the lack of services available to her adult sister, who was born with Down Syndrome.

The woman, who penned an anonymous letter to the Ryan Tubridy Show, revealed that her sister is “living out of a suitcase” as the HSE has not found permanent residential care to accommodate her in their local area in the midlands.

The listener revealed that she returned to work after being a full time carer for her sister and late mother for more than eight years and has put off marrying her boyfriend as her sister’s future is up in the air.

“My sister loves attending her local day service.  She is very much a part of the community that she has grown up in.  She is content with her life.  I have been her sole carer for years and prior to that I supported my parents, both now deceased, in caring for my sister since I was old enough to do so,” the listener wrote.

“I have returned to work.  This means that my sister has been travelling for almost two years between respite locations and home, effectively living out of a suitcase that I spend most of my time packing.  This interim arrangement has been exhausting for both of us but there is no other option as it allows her to keep attending the day service that is so important to her. “

“I am sad to discover over the years how little regard there is for individuals such as my sister and carers such as me amongst those that hold the power and the resources.”

The woman revealed that the HSE has recently offered her a vacancy in a residential home more than 70km away from her sister and the community in which she grew up in.

“A month ago I received a long-awaited response from the HSE offering a vacancy for my sister in a community house more than 70km away from her home.  This vacancy would involve removing her from everyone and everything she knows,” she wrote.

However, the HSE said in a statement: "The HSE is well aware of the circumstances of this case through regular contact with the family.

"The HSE met with the family representatives last week.

"The person in question was offered a place in proximity to her home last week."

The woman revealed that she has put off marrying her fiancé for many year because of her sibling’s ongoing issues with the HSE regarding her permanent care.

“We made the decision to get engaged last year because we had to take control of our lives and following this I notified [the local disability services] that I would be leaving home within a couple of months to start married life. 

“They were reluctant to even communicate with our family. I received a visit from a social worker approximately a fortnight later and I was questioned on my plans for the future and asked if I had bought my wedding dress,” she said.

The woman admitted she was due to marry this month but has placed her life on hold until a solution is sought for her sibling so that she can have the “life she deserves”.

“I had to tell her that the wedding wasn’t going to happen in January.  Her innocent face became troubled and her eyes filled with tears as she said ‘I won’t be a bridesmaid now’. 

“I told her that we weren’t ready yet but that we will get married soon and she will get to wear her bridesmaid dress. 

“I also have been extremely lucky with the man I fell in love with and his support over the last couple of years has given me the strength to keep going. 

“I want to marry him as soon as possible but I also want my sister to have her life, the life that she deserves, the life she should be entitled too.”

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