As part of a special extended programme this Tuesday night, RTÉ Prime Time traveled around the country to visit some of those cares and those whom they care for.
There has been a 35% increase in the number of carers who are aged 85 and over recorded in Census 2016.
Jack Brennan is almost 85 years old and cares for his beloved wife, Bernie. Bernie has Alzheimers Disease and cannot even perform the most basic tasks for herself. Miriam O’Callaghan visited Jack in his home in Frenchpark, Co. Roscommon, which their family describe as “Jack’s clinic”. He receives 2.5 hours a day homecare for Bernie to get her up, washed, dressed, fed, and back to bed in the evening. He gets an extra 2 hours on a Friday, in which he has to do all the week’s shopping and household errands.
Jack would really like some more home care hours, perhaps for the HSE to provide the homecare for Bernie during the day, while he would take the night shift, which he says is often more difficult.
Carers provide over 6.5 million hours of care per week. On average, carers care for their loved ones for almost the equivalent of a full 40-hour working week. But almost 9% provide full-time 24-hour unpaid care, with no real break at all.
Jacinta Walsh from Drogheda who is 51 years and takes care of her 18 year-old son Sam O’Carroll. Sam has autism and is learning disabled and has a number of health conditions including type 1 diabetes. Sam’s behaviour is unpredicatable and can be extremely violent, and Jacinta has suffered serious assaults. He has attended a day centre since September as he left school in June. Since Sam turned 18 in July there is no respite care available for him or his family.
Jacinta tells Miriam: “I can’t tell you the difference it makes having respite. If you know you are getting a break in 2 or 3 weeks time, you can carry on in between but if there is no break on the horizon . That’s where we are now – there is nothing – that’s really really hard.”
Carers worry that they themselves will become ill, leaving no-one to take care of their relative, and many do.
Teresa Kinsella lives in Castleknock in Dublin. She is over 80 and takes care of her daughter Fiona who has an intellectual disability and is 54. Fiona has been waiting for a place in a community residential facility for 14 years. But Teresa has been diagnosed as suffering from the onset of dementia and feels she can no longer take care of Fiona. Her own doctors have warned of serious safety concerns if she has to continue to do so.
Of course the ultimate worry for many carers is what will happen to their loved one if they die, and some say that their only hope is that the person they have given their life to care for dies before them.
Mary McDonnell is 80 years of age and took care of her daughter Sinead McDonnell for 54 years. Sinead had a very severe degree of cerebral palsy from birth and was totally dependent on her mother for everything. Sinead attended an Enable Ireland Centre four days a week and lived at home in Cork. Mary’s husband and Sinead’s father Denis is also in poor health and while the McDonnells received home help supports for Sinead, including overnight carers, there was no plan in place for Sinead to move from home into a residential facility in a managed fashion. Both Sinead and her parents were greatly distressed by the absence of places in Cork and uncertainty around her future care. Sinead passed away unexpectedly during the making of the programme.
Many carers feel taken for granted, and say that the people they care for are human beings in their own right and should not be viewed as “appendages” of the person caring for them.
Johanne and Alan Powell’s daughter Siobhan is 34 and has a very rare chromosomal disorder which means she is extremely small – about the size of an 8 year old. Her hands are misformed so she can’t grasp things and her arms and legs are stiff so do not straighten. She is doubly incontinent, has no language of any sort, has poor sight and has very bad scoliosis so cannot move very well. Her parents have cared for Siobhan until now, but they says that they want to have some sort of life of their own and that Siobhan, as an Irish citizen, is also entitled to live her own life in a house with others people of a similar age and ability.
In many of these cases – and many of the thousands of others around the country – relatively little spending, on respite or additional homecare, might be able to ensure that carers could continue caring for their loved ones. In other situations, it seems clear that residential places are urgently needed to ensure that a crisis doesn’t turn into a tragedy.
This RTÉ Prime Time full-length documentary will be followed by a studio discussion where the issues raised will be debated with carers, experts, and politicians.
Watch RTÉ Prime Time – Carers in Crisis, Tuesday 5th December at 9.35pm on RTÉ One