- By Marie-Louise Connolly
- BBC News NI health correspondent
Miriam Murray takes care of her husband Ian, who suffers from dementia
A County Antrim woman who must choose between caring for her husband or her sister is asking for greater support.
Miriam Murray, who is also cured of cancer, said the charity Praxis’ appointment of a dementia care coordinator was “progressive”.
But she feels more needs to be done to support unpaid caregivers.
More than 220,000 people provide unpaid care for sick or disabled family members or friends in Northern Ireland, about one in eight people.
Caring for people at home reduces pressure on the health and social care system including reducing the number of people in home and hospital care.
‘I’m not who I used to be’
According to Miriam, who is 77, her life was “torn to pieces” when she had to choose to care for her husband Ian, 89, at home while her sister Jennifer, 73, was placed in a nursing home.
Ian, who is an engineer as well as an avid cyclist and photographer, was diagnosed with vascular dementia in 2020 while Jennifer lived with young Alzheimer’s disease.
Miriam said she had to “let go of one” to keep the other.
“It’s tiring; I’m not the same person I used to be.”
Miriam, seen here with husband Ian, is just one of 220,000 people who are caring for a family member or friend without pay.
When asked if he was patient with Ian, he laughed and said: “I’m working on it.”
To help people like Miriam, Praxis, Northern Ireland’s largest registered care charity, has appointed a Dementia Coordinator for the first time to focus entirely on nurses.
While supporting people with mental health, learning disabilities, autism and dementia, the demand for support from caregivers is also increasing.
‘Ignored and forgotten’
Tracy Smyth, who took office in January, said caregivers were neglected and a forgotten part of society.
“They are the glue that holds it all together. They do so much to care for and our healthcare system is under a lot of stress – without our caregivers we can’t cope,” she says.
Ms Smyth’s post is funded by the Department of Health for two years. It’s unclear what will happen after that.
Tracy Smyth, Praxis, Dementia Co-Ordinator at Praxis, Northern Ireland’s largest registered care charity
“No one signed up to be a nanny. This is a journey that the most loved ones take with little or no skills and what they deserve least is someone who is there to give them advice and help learn more about the condition and who they.” can turn to for support,” Miriam said.
These are early days for Ms Smyth and Miriam, who are still getting to know each other and figuring out what Miriam really needs.
Miriam said having someone like Ms Smyth to signal where she could get help for her family was a great start.
There’s also advice on how to arrange for people to sit with her husband while he visits Jennifer.
Miriam’s younger sister, Jennifer, is living with Alzheimer’s disease young
Miriam said she lives “every day as it comes.”
“That’s the thing about caregivers – you’re locked in a situation that you don’t know about or have experienced unless it’s happened in your family before. I felt completely shut out and I lost my own identity,” she says.
The Last Guard Strategy for Northern Ireland was published nearly two decades ago.
According to Ms Smyth, the document is outdated and does not reflect the lives and needs of unpaid carers in 2023.
According to Ms Smyth, Northern Ireland is lagging behind the United Kingdom and no one should under any circumstances have to fight the journey of dementia alone.
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