'We jumped on a plane rather than wait for care' - Father relocated son with brain injury
HE followed the U.S election carefully and joked he was a fan of Donald Trump to the amusement of his dad, a young man as intelligent and witty, as he was three years ago before a terrible accident that rendered him locked in his own body.
The only way left for 26-year-old Pádraig, from Drumcondra, Dublin, to communicate with his father, Reinhard Schaler (58) his mother, Pat, and sisters, Laura and Maria, is via a specialised computer tablet.
“But he’s still the same young man, warm, intelligent, with a dry wit - he’s just not able to walk, talk or move,” Reinhard said.
“Pádraig can think for himself and express views and my son is happy. He wants to be alive, in fact he fought to be alive.”
Limerick University lecturer in computer science, Reinhard has taken a sabbatical from work to care for his son full time along with the help of dedicated HSE carers.
The father and son’s lives changed forever in June 2013, when the young man suffered a massive brain injury after a collision with a van in Cape Cod, U.S during a J1 visit to the States.
The former sports-loving youth almost died three times after the accident. He had been cycling to work at a hotel but wasn’t wearing a helmet. The force of the impact and impending fall caused catastrophic injuries.
The former Trinity College graduate’s lung collapsed and the medical team even went so far as to discuss organ donation but the fluent Irish speaker hadn’t given up.
“My son fought three times to survive,” Reinhard said.
The love of this father for his son is immeasurable and when the family were faced with a one year wait just to get Pádraig rehabilitative care at the National Rehabilitation Hospital in Dun Laoghaire in 2013, Reinhard was not willing to delay for fear of setting back his son’s care.
He uprooted his son to his native Germany to instead avail of top class rehabilitation. Pádraig qualified as a German citizen under his father’s birth right and was entitled to universal healthcare. And his father swears the young man’s condition improved dramatically.
Pádraig could after months rehab eat solids, he could move his right foot for ‘yes’ and left for ‘no'.
“It’s disgraceful we had to get on a plan to go back to my home in Germany to get Pádraig the care he needed when he needed it to stop him being stuck on a waiting list,” Reinhard said.
“Anyone who is from another European country will do that, jump on a plane if they are sick, if their family is sick because of the lack of rehabilitation in Ireland.”
Between household renovations, private costs for physiotherapy and music therapy and care in Germany, since returning to Dublin in 2014, Reinhard estimates the family has spent at least €100,000 providing care for Pádraig.
Rheinhard claims the HSE “is broken” and that rehabilitative care is “piecemeal” in Ireland at best.
“Those with serious brain injuries are written off and there was no way I was prepared to see his son wind up in a nursing home in his 20s with only a ceiling to stare at and no mental stimulation,” the academic said.
“In years to come, Ireland will go down in history for the lack of human rights it has afforded seriously disabled people.
“I have worked as a lecturer and lived in Ireland for 30 years, paid my taxes but when my son was seriously injured, I felt forced to take him back to Germany, where the medical system is years advanced.
“They believe rehabilitation must be introduced as quickly as possible to help a person with brain injuries develop.
“It is inhumane to leave people with such severe needs to wait on lists and consign young people with disabilities to nursing homes, as they do here in Ireland.”
“In Germany the team over there had my son eating solid food and as soon as we came back here, the medical team put him on tube feeding.
“We were provided piecemeal rehabilitation when Pádraig came home to his own country. Physio and speech therapy was sporadic, so in the end because we couldn’t rely on when it would happen, I just decided I’d pay for it myself and that way I knew the people who would be coming and when they were coming.
“The HSE route seemed to be sending people on occasions and there would be such a gap left that they’d not be familiar with how my son had developed. It was like starting over again each time they visited.
“In Germany, the parents have full consent to healthcare and that’s not the way it is here - it’s all left down to the system.
“In Germany families can also take control of their loved-one’s care package to state when therapy should be organised and it just works better, putting the control back in the family’s hands and it wouldn’t cost any more.
“The system just isn’t joined up here.”
The lecturer, originally from Dortmund, 100 km east of Cologne, takes his son to concerts to allow him to soak up the atmosphere he would still be enjoying if he was 26 and able-bodied.
“I want my son to enjoy his life as best as he can. And I know he’s happy, he’s expressed he is. His one big frustration is that he can’t communicate with people and I know he misses communicating in a group.
“But he wants to be here and he wants to take part in society.”
To allow this to happen, Reinhard takes his son on outings as often as possible. He gets him to try different foods and laughs about Donald Trump’s unexpected victory with Pádraig.
“He told me he liked Trump and I was shocked as Pádraig was always a young man with conviction but then he admitted he was joking.
“That is Pádraig and that’s how he’s always been, telling jokes. He communicates via the tablet but we hope his communication may get better thanks to an eye gaze option on the device.
“He’s the same as he’s always been, he just can’t move for himself and I dread to think how others just like Pádraig are just wasting away in nursing homes.
“We are talking young people, who this State is neglecting. They are still able to think and want to be part of society but the State has given up on them and they die because they don’t move, they don’t get physio and they just lie in a bed staring up at a ceiling surrounded by elderly people.
“I take Pádraig swimming, we go out as much as possible. He even voted in the last General Election.
“He may be limited to what he can do but my son is a human being and has rights.”