“I WOULD have cried myself to sleep if my brother Stephen had to go into a home after our father died in 2007.
Those are the words of Marion O’Sullivan, who lives in Bishopstown and who cares full time for Stephen Mackey, aged 65.
“And Stephen himself would have cried himself to sleep too,” she adds,
Marion made sure this didn’t happen.
“I am minding Stephen 15 years this month,” she says.
“We were childhood siblings and childhood friends, we have a special bond. I don’t see caring for Stephen as a burden, but sometimes I find it hard physically.”
What happened to Stephen when he was a child?
“He was only three or four when he had an accident and fell down the stairs at home and fractured his skull,” says Marion.
“He was in a coma for two weeks. When he came out of the coma, his sight and his hearing were badly affected and one of his legs was half an inch shorter than the other.
“My own home was in Hollymount, Blarney Road, and after dad died I moved into the family home with Stephen to care for him.”
Was it hard leaving her home?
“It was very hard leaving my home and my community,” says Marion.
“I was very involved in the community all my life, working and volunteering in the community. When I moved here to Bishopstown I didn’t know anybody.
“I have to say we have great neighbours, Danny and Agnes Pette. They are very good to us, and Stephen knows them.
“Stephen went to Cope in Glasheen five days a week before Covid until he got a bad infection in his ear and he didn’t go back after Christmas, so he was at home for three months. He is back in Cope now three days a week.
“When he’s at home I make him a coffee and give him The Echo to look at. He likes looking at the photographs in the paper.”
Marion does a lot for her brother.
“I get him up, get him washed and shaved and help him to dress. He can’t do much for himself,” says Marion.
“He is not very tall; but he is big in girth. I did a course, care of the elderly, in the Mercy Hospital years ago and that gave me the skills I needed to care for Stephen.”
Marion doesn’t get much of a break.
“I potter around the garden and go to the shop when Stephen is in Cope,” she says.
“I’m often a long time on the phone making appointments for Stephen.
“When he goes into respite care, I take a week off with my books and my camera. It is harder now to get away. When Stephen could get around a bit better when he was younger, we used to go on day trips to Skibbereen to the West Cork Hotel, they got to know us there.
"Stephen loved to have fresh fruit salad and cream in the restaurant. We went to Crosshaven and to Dublin Zoo and once we got the ferry to Wales. That was lovely.”
Stephen got more incapacitated as he got older.
“He wasn’t able to get up the steps of the country buses, they were too high.
“Now he seems constantly fatigued and he walks with an aid of a walker around the block sometimes.”
Marion gets tired too.
“I am often exhausted because I care for Stephen 24/7. It is full time. I listen at night to hear him moving or getting up.
“There is a constant worry at the back of my mind that he might be dead when I hear no sounds. So I worry a lot and I am under constant stress.”
Caring for a family member can be lonely.
“I get frustrated and am often lonely,” admits Marion.
“Being a full-time carer is a hard station.
“My own family are a good support and help me out when they can. I have one daughter living in Hollymount; my own home. She is very good to me and my brother Frank is a good support. I’ll stay here in Bishopstown as long as Stephen is here.”
Her brother still gets out and about.
“Stephen goes to Cope three days a week and they are very good to him there. Usually, the rest of the week is taken up with medical appointments, getting his hearing tested and his eyes tested.
“Sometimes he gets the letters wrong at some level at the eye test and he ends up crying, but the nurse is very kind,” says Marion.
“Stephen never really advanced since he was four years old, even though he is a mature man. People can feel awkward around him. When he talks he often repeats himself.”
Marion says carers need to get more support.
“Access to information can be difficult,” she says.
“Hopefully, the proposed amendments to the means test for carers will benefit carers and more will be eligible for the Carers Allowance.
"Right now, because I have my pension, I am penalised and I end up with €50 a week for minding Stephen full-time.”
Marion, who always had a special bond with her brother, ensures he is well looked after.
“He is content enough, but you don’t know what’s going on in his head.
“When he hit his fifties, he deteriorated a bit. He used love Lego and Meccano but can’t manage that anymore.
“I suffer from arthritis but I am glad I minded him,” says Marion.
“He was my childhood companion, we grew up together.”
Marion has advice for other carers.
“Fight for everything you can, the nature of caring is that nobody knows about your plight. We need all the support we can get. Our plight needs to be highlighted more.
“There are 500,000 carers caring for siblings and family members in this country. That is a lot of people.”
The objectives of Carers Week 2022 are:
To raise awareness of family carers in our community.
To deliver online events for family carers throughout the country.
To engage with family carers not yet availing of carer support services