Carers in the home are among the unseen sufferers of cutbacks imposed due to the Covid-19 pandemic.
Many family carers who rely on daycare health services to help look after loved ones have been struggling to cope because of restrictions imposed on existing care services. And for some carers, the strain of looking after family members at home who have a high level of need has led to calls for more access to full-time care for their loved ones in residential care facilities.
Catherine Cox, of Family Carers Ireland, said: “Unfortunately, residential care places for adults with disabilities, similar to respite and day services, are completely inconsistent and inequitable across the country – with a postcode lottery existing whereby where you live will determine whether you will be able to access such supports. For family carers, and particularly those who are aging, one of their greatest concerns is what will happen their son or daughter when they can no longer provide care or when the carer themselves passes away.”
She told the Sunday Independent: “Many family carers who are seeking residential care for their loved ones have been told that this will only come in an emergency such as the carer’s death or when there is a significant safeguarding issue for the adult requiring care. This completely ignores the health and safety of the family carer themselves, many of whom reach burn-out and exhaustion due to the lack of supports available.
“Covid-19 has made caring roles all the more challenging… at a huge cost of the carer’s own mental and physical health.”
One such family are the Nolans in Dublin, whose problems have been worsened by the Covid pandemic with the reduction of adult day services for their daughter from five days to three days a week.
Blathnaid Nolan (55) lives in Leopardstown with her daughter Íde (22) and son Dermot (19). Blathnaid said she can no longer cope with the violent behaviour of her intellectually disabled daughter.
“I’ve lived in lockdown for 20 years,” she said. She feels trapped in her home as she can no longer cope with the “unpredictable and frightening” behaviour of her 22-year-old daughter.
She spoke of her growing frustration with responses from the HSE which refer to a lack of available funding for residential care for her daughter.
“I walk on eggshells, constantly anticipating or dealing with an aggressive meltdown,” she said.
Blathnaid has made desperate pleas to the HSE for Íde to be taken into residential care. “I’m in constant fear that Íde will cause serious injury to herself or to us. It’s only a matter of time.”
Íde was diagnosed with moderate intellectual disabilities with autistic traits and needs ‘full active management’ involving 24-hour care. “Íde can also be absolutely gorgeous, charming, and funny when she’s happy. But nothing about her living situation is working anymore,” Blathnaid said.
She said Íde’s personality can “pivot on a pin” to change suddenly and she can begin throwing and smashing whatever objects she can get her hands on. Íde can scream and make so much noise that gardaí have been called by concerned local residents. She has slapped her mother and pulled her hair numerous times.
“She can attack me when I’m driving and I’m constantly in terror of causing an accident,” Blathnaid added.
She said Íde, when she has meltdowns, has attacked caregivers who come to the house and has also attacked staff at the Carmona Day Services Centre in Glenageary. She has also been self-harming.
Clinicians and care staff recommended that Íde be taken into residential care. A GP wrote that Blathnaid is “mentally, physically and emotionally exhausted”.
Blathnaid wrote a letter to opposition leader Mary Lou McDonald stating: “The tragedy is that in the right environment Íde would thrive and live her best life. My daughter is on the emergency residential list with the HSE. I have learned that she can remain on this list for 10 to 20 years. I hope you can help me by raising the awareness of my case and the scandalous state of respite and residential care in Ireland of 2020.”
She said she has had very few nights’ respite in recent years, despite promises that she would get more.
A spokeswoman said: “The HSE does not comment on individual cases. However, in such situations the HSE will always actively engage with the family and client to address their needs.”
Family Carers Ireland freephone careline: 1800 240724