Life as a carer: ‘If we really love somebody, we can do anything for them’
Marcin Filak cares for his wife, who has locked-in syndrome, and their two children
Marcin Filak and his wife Ola.
“Life was wonderful for us,” Marcin Filak says about his move to Ireland, from Poland, with his wife Ola and son Piotr in 2016. “I had a very good job and we found a brilliant school for our son Piotr, who is autistic.”
A devastating turn of events in 2017, however, saw the family’s life turned on its head when Ola had a catastrophic stroke just three weeks after the birth of their baby girl, Anastasia. Ola, who was 33 years old at the time, was diagnosed with locked-in syndrome.
She spent 10 months in the National Rehabilitation Hospital. “They asked me about the future – they mentioned transferring her to a nursing home,” Marcin explains “I said no. I promised my wife she would be with the kids.”
Before bringing Ola home, Marcin had to find a house suitable for his family and his wife’s needs. He was lucky enough to find suitable accommodation in Kildalkey, Co Meath, but is now facing further stress having discovered that the house he is renting is due to be sold. An unexpected house move not only presents issues for Ola, it also presents challenges for Piotr who finds adjustments difficult.
Limited family support
“We cannot go too far because we have a carer company in Trim. If we go too far we must change to a new team which is not that easy,” Marcin says, outlining the importance of consistency in care.
Living so far from home means family support is limited. Ola’s mother comes to visit her daughter and family twice a year to help out. This is like “a holiday for me”, Marcin explains. His workload is enormous and his day begins typically at 6am following just 4½ hours sleep. When the carers come in at about 10/10.30am Marcin busies himself cleaning, washing and picking up shopping, before they leave again at 2pm.
“Piotr is my best helper,” Marcin says, singing the praises of his son. “Piotr doesn’t like noise and the little one [Anastasia] is very noisy. I see how he fights with himself, but he stays in the same room and takes care of her.”
Marcin says trying to focus on his son’s needs too is “very hard”. Getting outside to play football, some evenings with his son may be a possibility in the summer, but now in the wintertime “it feels like we’re in a cage”, he says.
Marcin credits his training as a soldier in Poland for his survivalist skills. “In the army they teach us how to survive. I never think about myself. I don’t know how long I can do this because I am only human, I’m not a machine, but every time I am feeling very tired, very bad or I feel like nearly dying I say, ‘Stop thinking about yourself, think about your wife, think about your family, because at the moment they need you’. Sometimes I feel lonely, very lonely. There is no one to hug me and say it’s going to be okay.
“Irish people opened their hearts to me,” Marcin says describing the support he received from his community. “The day after it happened friends and neighbours arrived with food and nappies for the baby.”
His boss continued to pay his wages for the next three months, though he wasn’t working. “Colleagues were so generous. Neighbours helped out every way they could. Thank God for those people, because if not for them I don’t know where I’d be.”
Marcin won Netwatch Carer of the Year in 2019, something which he said was a huge shock, but which also made him feel very proud. Having previously held rather traditional views on the roles of men and women in society, he explains that if someone had told him he would become another person’s carer, he’d have said it was “impossible”.
“Life changes us and if we really love somebody, if we really care about somebody, we can do anything for them” he says. Ola “is my lady”.