'The screaming will go on for hours until she falls asleep' - Ex-Mrs Brown's Boys star Rory Cowan on coping with his mother's dementia
Esther Cowan (84) is cared for at home by three carers. She can’t walk, and most of her speech is now gone; she suffers from episodes of screaming, and requires round-the-clock care.
Her son Rory Cowan is well known in Ireland as the former star of Mrs Brown’s Boys, but often Esther doesn’t know who he is.
“One day I said ‘hiya Mam’, and she looked at me, and said 'you’re a ba****d’. Then I went to the kitchen to get a glass of water and I went back in, and she looked at me and said ‘ah, hello’.”
For the past nine years, Esther has been suffering from dementia. Currently, she is stable thanks to medication, but Rory expects that this will change.
“She can’t walk. She’s bedridden. They [the carers] put her into a chair and on the hoist and it’s horrible to see because it’s like watching a cattle being put on to a cart.”
“The screaming will go on for hours. She will sit there and go “bababababa” and take a deep breath and do it again, and keep doing that until she’s falling asleep.”
“She was the best mother I could ever have wished for and she doesn’t deserve this. No one does.”
Dementia is a term which describes a range of conditions which cause damage to our brain. This damage affects memory, thinking, language and our ability to perform everyday tasks.
Esther’s loss of memory means that she now sometimes believes she is talking to her father, who died in 1943, or her mother, who died in 1964. And once, when Rory’s younger brother walked into the room, Esther believed that he was her late husband.
“She’s the shell of this woman that I used to know. She doesn’t look like my mother. The muscle tone is gone from her body. But she eats everything, and I actually think she’s forgotten that she has eaten, so she eats all the time.”
“It’s seems like she’s constantly stressed but you don’t know how to stop it. Then she’ll be grand for a few days. You don’t know what’s coming.”
“The carers take her out to Dundrum Shopping Centre and she’ll be screaming all the way there, not because she’s in pain, just like a baby screaming, just like a baby that’s looking for attention. But when the carers bring her to Dundrum Shopping Centre they say now you can’t do that here, you’ll have to stop, and she’ll stop and walk around for an hour or two. But then when she leaves, she’ll start screaming again.”
But he said: “They’ve just changed her medication, they put her on anti-depressants and it’s working but it’ll all change again.”
There are approximately 48,000 people living with dementia in Ireland. Every year another 4,000 are diagnosed – 11 new people every day. By 2041, the number of people living with dementia in Ireland will have increased to over 132,000.
Looking back, Rory believes Esther was showing signs of dementia 15 years ago.
“I’m only looking back so I’m guessing. About 15 years ago, she fell when she was out walking the dog. People picked her up and brought her home, and she had no memory of it whatsoever.”
“She’d ring me at all times, and I could be in Manchester, London. One time I was in Australia. She’d ring me and say Rory what’s the plan for today, and she’d ring me five minutes later and ask the same thing again.”
“My father died and he was Russian Orthodox, and they sing their mass as is their tradition, and at one stage, my mother looked at me and said ‘I don’t recognise any of these hymns, would they not do Ave Maria or something? At the time I roared laughing at her. So I think it must have kicked in when Dad died.”
Rory, who avidly campaigns with the Alzheimer Society of Ireland, passionately believes that people with dementia should be cared for in the home for as long as is possible.
The “Fair Deal” scheme is a scheme of financial support for people who need long term residential care services. Under the Nursing Homes Support Scheme, people make a contribution towards the cost of their care and the State pays the balance.
“People with dementia do get to a stage where they need constant care, and family carers are doing it sometimes at their own peril. If people had a Fair Deal scheme, for people at home, they could afford to have carers. People could use the Fair Deal scheme to cover the cost of their care.”
“No one wants to go into a home. And I think, unless they really need to go to a home, don’t put them there.”
Rory constantly worries about his mother - whether she's able to sleep at night and whether she's comfortable.
“It’s not like you’re visiting them and just sitting there, you’re watching every move in case there’s something going to set her off.”
“My mother, she was the only one that I could be guaranteed that she had my back all the time. I could tell her something and I knew it would go no further. I miss all that and it’s only when it’s gone that you miss it.”
“I never remember my mother leaving the house late at night until I was 11. She was always there every single night. Her kids were her whole life.”
The Department of Health are currently doing a review of homecare services. See http://health.gov.ie/consultations/