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Mum of disabled daughter guilty of wanting her life back

Johanne Powell with her dog and daughter Siobhan
Johanne Powell with her dog and daughter Siobhan Image credit:

A mum who cared for her disabled daughter says she is riddled with guilt admitting she was ‘bored out of her tree’ and wanted her life back.

Siobhan Powell passed away on August 4 2020, being born with a rare chromosomal disorder she needed constant care from her mother Johanne.

Last week, on what would had been Siobhan’s 37th birthday her mother shared a heartfelt post online.

In 2016 Johanne Powell opened her heart to the Irish Times discussing the daily attention Siobhan required.

'I'm doing this job because I have to do it, because there is no alternative. I don't want to do it any more. I'm bored. I'm bored out of my tree doing the same thing day in, day out, with no changes,’ the mother told the publication five years ago.

'I swear to God I could walk into a supermarket and rob the place blind, because once you have a child in a wheelchair, by definition you're a good person. It doesn't matter what you really are.'

She continued: 'Sorry. I'm going to be very straight about it: she's not special. She's damaged goods. I wanted the child that I thought I was going to have. The one that was going to have two children by now, and have finished university studies, and be having a life for herself, in a home where I could visit and babysit my grandchildren. I wanted to have that child.' 

Siobhan was born with ring chromosome eight, weighing 1.65kg and was expected to live for just a few months.

Proving doctors wrong Siobhan grew into adulthood, but was fed on a diet of liquids because she was unable to eat solid food.

Given their daughter’s short life expectedly Johanne and husband Alan took time off work, but after nine months off Alan returned to his role on a Norwegian oil tanker so he could bring in money for the family.

Johanne wanted to move back to her native country of Norway so Siobhan could receive better healthcare, but her husband refused.

In her blog the mum said her daughter’s life was made up of 'heartache and laughter, of hardship and fun, of great new friendships and terrible loneliness'. 

'Mainly it has been 37 years of love, unconditional, uncomplicated love,' she wrote. 'She will be part of us forever, and we will love her forever.'

Johanne went on to say the family received ‘very little input’ from the Health Service Executive (HSE - the publicly funded healthcare system in the Republic of Ireland) and Siobhan was only seen by a public health nurse 'maybe every second year'.

In her blog Johanne wrote: ‘We never saw a social worker, in later years she would see physiotherapists, occasionally a speech therapist and I think twice a dietician in [HSE-funded] Ard Aoibhinn [a not for profit charity which provides day services for people with an intellectual disability and special needs].

'It is known today that early intervention is vital for children with disabilities, and it is shameful to see how little have changed in the last 30-odd years.' 

Alan and Johanne only had three weeks of respite a year and became full time carers on a daily basis when Siobhan arrived home from Ard Aoibhnin at 3pm every afternoon.

In 2013 the parents tried to arrange short-term care for their daughter so they could have a short time to themselves but they were unsuccessful.

Johanne told Irish Times there is 'no such thing as retiring for carers unless you die'.

'It's hard to say these things, because you do feel guilty about saying you don’t want your daughter at home. It’s not that we don’t want her at home, but I don't think I can cope much longer.'

In her blog the mum admitted she was struggling when the pandemic hit.

'For people with disabilities their services are their only contact with other people with similar abilities and interests,' Johanne wrote.

'Lucky for us Ard Aoibhinn stayed open and we made arrangements for her to attend two or three days a week. Unfortunately the usual transport arrangements were also cancelled, so we drove her to Wexford and picked her up in the evening. 

'She loved it, but we had started to notice that Siobhan was getting very tired, and there was times when we decided she was not up to going in.'

In July doctors detected one of Siobhan’s kidneys had stopped functioning, she was sent home to live out the final few days with her parents.

'We were lucky, it was between the lockdowns, so family from Norway and the UK was able to come and share with us this difficult time,' Johanne wrote in her blog. 'We had a beautiful simple funeral for a maybe not quite as simple girl.

'The more society thinks we are all these things, the more we get shoved away out of conversation or debate, because we're supposed to be special, and therefore supposed to be able to cope with full-time caring,’

Alan's mother Lettie was 'unbelievable' with Siobhan and would look after her for an hour every afternoon to give Johanne some respite.