Anne O’Connell doesn’t hesitate when asked what she has missed most as a result of living in a nursing home for more than a decade since the age of 46.
The loss of her family has been “the greatest loss of my life”, she said.
She has a memory of being on a white sandy beach in Venezuela more than 20 years ago. She can still picture the beautiful clear water and the palm trees framing the postcard picture scene.
“I recall holding my little boy. He was eating ice cream from a coconut shell and I thought life cannot get any better. And six months later it was all dark and I was thrown into a state of turmoil,” she said.
Anne suffered a brain injury in 2004 at the age of 37.
“In the blink of an eye, I lost everything,” she said.
In addition to suffering life-changing physical manifestations of the brain injury, she said she lost her children, her marriage, her independence, company and conversation as well as a sense of time.
“I have two wonderful very handsome young men. They are my heart,” she said of her two sons now aged 28 and 24.
The boys were eight and four when she went into Limerick hospital for treatment for a hairline fracture on her ankle. While there, she suffered a seizure and a stroke.
“I am still waking up surprised and horrified at the magnitude of this [brain] injury,” she said.
[ Irish nursing homes are ‘at a critical juncture. Something needs to be done’Opens in new window ]
Communicating with the help of a support worker from Acquired Brain Injury Ireland, she explains that as well as mobility issues, her speech, vision, hearing and swallow have been affected.
One of more than 1,300 people aged under 65 referred to in Ombudsman Peter Tyndall’s 2021 report, Wasted Lives, as living inappropriately in a nursing home, she says sometimes she feels angry, abandoned and let down.
Staff in the Co Limerick nursing home are very good, she stressed, but they are too busy to get to know the real person and the personality that she still is.
Activities there are understandably focused on people who are much older than her and she has “zero” friends and social outlets.
“I have become very fond of my own company. I daydream a lot. I reminisce a lot. It is like being in a waiting room but I think I am not ready to die yet,” she said.
The Ombudsman’s report highlighted the lack of informed consent when younger people with disabilities are placed long term in nursing homes, and it is a point echoed by O’Connell and Dr Karen Foley, chief executive of Acquired Brain Injury Ireland.
“I was told I had to go in for a few weeks for emergency reasons because of health and safety guidelines – and that was nearly 12 years ago,” said the 57-year-old mother of two.
Foley has encountered people as young as 18 and in their 20s who have been placed long term in nursing homes. Unfortunately, she says, O’Connell’s 12 years is not unusual.
“People can often feel duped when they realise there is not a clear pathway onwards,” she said.
In a pre-budget submission, Acquired Brain Injury Ireland has called for a €2 million investment to enable it to identify young brain injury survivors in nursing homes and the supports they need to move into more appropriate accommodation.
The charity is currently providing “a home from home” for 70 people throughout the country with various degrees of dependence as well as supporting those living at home. It is hoping that within months O’Connell will move into one of its houses.
“I feel like I have won the lottery,” she said. “I can’t wait for my children to visit me in an actual house with a table.”
Having discovered a talent for art, which she said is “a lifeline” and a way to express herself, she has been promised there will be an art room.
“I can’t wait for that. And I can’t wait to start cooking for myself. I can eat what I like, when I like, have friends call, and I think there will only be a few residents so I should be able to chat. I will get to know my boys and I will be heard. I will be coming out of my bedroom that I have been 12 years in.
“This is a very posh prison. It is a prison because you physically cannot move.”
[ Is it any wonder so many Irish people don’t want to end up in a nursing home?Opens in new window ]
Foley believes that one of the reasons young people end up in nursing homes is because the Fair Deal funding mechanism – the State scheme to help fund the financial cost of long-term care – is geared towards such facilities and there is no alternative scheme for those who need other types of accommodation.
She says although some individuals have been moved to more appropriate settings since the release of the Ombudsman’s report, other under-65-year-olds have moved into nursing homes so there is no great improvement in the figures.
“There isn’t anything really positive that I can say other than that the person is safe and fed and looked after [in nursing homes],” she said. There is a huge cost in terms of fulfilment and mental health, she believes.
“Hope is a huge part of what keeps people going and the sense of endlessness and not knowing when you will move on is soul-destroying. We are also deskilling people because everything is done for them.”
O’Connell says she feels an onus to advocate for others with brain injuries whose cognitive function has been affected and who may have no one else to speak up for them.
“I feel someone should have intervened in relation to my children and my marriage. But no one helped.”
Now looking forward to opportunities for rehabilitation, a social network and satisfying her hunger for art, she says it is important to say that her brain injury has made her a better person.
“I have more compassion and empathy,” she said. “It has made me realise that life is precious.”
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