Caregivers who are not paid: "I had to decide whether to care for my sister or my husband."

Madam Miriam Murray

A woman from County Antrim who had to decide between taking care of her husband and her sister has called for more assistance.

The appointment of a dementia carers coordinator by the nonprofit Praxis, according to Miriam Murray, who is also recovering from cancer, was "progressive.".

She believes, however, that more must be done to support unpaid carers.

In Northern Ireland, more than 220,000 people—roughly one in every eight people—provide unpaid care for a sick or disabled family member or friend.    .

Caregiving at home relieves strain on the health and social care systems, including a decrease in the number of patients in nursing homes and hospitals.

Miriam, who is 77, claims that having to decide whether to care for her ailing husband Ian, 89, at home or send her sister Jennifer, 73, to an assisted living facility, "torn apart" her life.

While Jennifer has young-onset Alzheimer's disease, Ian, an engineer who was also an avid cyclist and photographer, was diagnosed with vascular dementia in 2020.   .

Miriam claimed that in order to care for both, she had to "let one go.".    .

"I am not the same person I was; it is just exhausting. " .

Miriam and Ian looking at a photo album together
One of the 220,000 people who provide unpaid care for a family member or friend is Miriam, shown here with her husband Ian.

She laughed and replied, "I am working on that," when asked if she was patient with Ian. " .

Praxis, the largest registered care charity in Northern Ireland, has for the first time appointed a Dementia Co-Ordinator to exclusively focus on caregivers in order to assist people like Miriam.

The need for caregiver support has grown along with the number of people it supports, including those with mental health issues, learning disabilities, autism, and dementia.    .

Caregivers, according to Tracy Smyth, who assumed the position in January, are mistreated and cast aside by society.

"They hold everything together like glue. Without our carers, we simply couldn't function because they contribute so much to caring and our health care system is under so much stress.

The Department of Health is funding Ms. Smyth's position for two years. What will occur after that is uncertain.

Tracy Smyth
Tracy Smyth, Praxis, is the Dementia Coordinator at Praxis, the largest registered care organization in Northern Ireland.

"No one volunteers to be a caregiver. The majority of loved ones embark on this journey with little to no preparation, so the least they can expect is someone to be there to give them advice and educate them about the condition and where they can turn for support, Miriam said.    .

Ms. Smyth and Miriam are still getting to know one another and figuring out exactly what Miriam needs, so it is still early in their relationship.

Miriam argued that having someone like Ms. Smyth point her in the direction of resources for her family is a great place to start.

Additionally, there is guidance on how to arrange for her husband's companionship while she visits Jennifer.   .

Archive photos of Jennifer
Jennifer, Miriam's sister, has early-onset Alzheimer's disease.

According to Miriam, she "takes each day as it comes.".

"That's the thing about being a caregiver—unless it has happened in your family before, you're locked into a situation you have no knowledge of or experience with. I feel wholly trapped and like I've lost my identity, she said.     .

Nearly 20 years have passed since the publication of Northern Ireland's last caregivers strategy.

The document is out of date and does not reflect the needs of unpaid carers in 2023, according to Ms. Smyth.

It was "high time" for Northern Ireland to start treating unpaid carers as a strategic priority for the government and society at large, according to a report published last month by the Coalition of Carers Organizations Northern Ireland.

Ms. Smyth claims that Northern Ireland is falling behind the rest of the United Kingdom and that no one, regardless of their situation, should face the dementia journey alone.


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