Family carers 'still under lockdown' with no access to day services or respite

Full-time carer to his mother and sister, Micheál, calls for proper supports for carers to ensure they are not left totally worn out
Family carers 'still under lockdown' with no access to day services or respite
Jodie, Micheál and their mother, Janet.

Family carers are facing "complete burnout" due to day services, respite and home help being removed during the Covid-19 pandemic, with no clear roadmap for the resumption of all services. 

This was the stark warning delivered by West Cork TD Holly Cairns to the Dáil's Covid committee at the start of the week. 

Now, a family carer has spoken to the Irish Examiner about the toll Covid-19 has had on his family. 

Micheál is a full-time carer for his mother Janet and his sister Jodie. 

Janet has heart failure, late stage chronic obstructive pulmonary disease, and is a wheelchair user with limited mobility. 

Jodie is living with down syndrome and all of her day services have been paused. She also can't go out and see her friends as she is in the 'vulnerable to Covid' category. 

Micheál says the government needs to do more than thank family carers. He is calling for proper supports, to ensure carers are not left totally worn out. 

"There are three people in our family. I am the only carer, caring for both my mother and my sister. We all live together. Thankfully, we live in a house adequately adapted for a wheelchair and [we have] plenty of outdoor space.

"My sister Jodie is 23, and has such a sunny, comic disposition, anyone who knows her will tell you that she is the life and soul of whatever she’s involved in. 

"During the pandemic, it is clear that her mental health has suffered, without distraction she will become quite sullen, thinking about her friends and on some nights she has become distraught before going to sleep.

"We haven't heard from my sister's day service at all, and they haven’t answered phone calls or e-mails.

"It’s heart-breaking, but I have to keep her safe. Her routine is gone, and I’ve had to invent a whole host of activities to fill our time, whilst also caring for our mother. 

"It has been exhausting, but we have made the best of it."

Jodie and her mother Janet with their dog.
Jodie and her mother Janet with their dog.

Micheál says his mother's care, although considerable, is more straightforward and revolves mainly around physical tasks and assistance with medication.

"She has suffered no loss of services, but I am obviously unable to facilitate her visiting a shop or a friend at the moment. 

"The pandemic has been an exacerbation of the discrimination and isolation that carers and people with disabilities face every day."

He says he cannot understand why carer's allowance in Ireland is so low, considering many family carers are working around the clock to look after their loved ones, with little outside help.  

"Recent governments are quick to focus on helping business interests, they are quick to pay those who find themselves unemployed due to Covid-19 €350 per week. 

"I applaud these measures insofar as they help people to survive, but it is an insult to carers, many of whom lose their jobs due to care responsibilities and only receive only €219 per week, a rate marginally above Jobseekers. 

"Even caring for two people, with my life entirely dominated by care, I receive €328.50 per week."

Micheál says he thinks politicians know that carers struggle, and that carers and people with disabilities deserve more financial assistance, support and recognition. 

"I also think, however, that they relegate carers unfairly into the demonised categories of 'economically inactive' and 'welfare recipient', and this attitude emanates into the public.

"I think political will, public support and collective kindness are important facets in this. We need the general public to call for greater supports for us, just as I would advocate for those who lost their jobs due to Covid-19 to receive assistance.

"A very simple measure would have been to tack on a weekly payment of €25, just to assist with grocery deliveries, knowing that shopping would become difficult, potentially deadly, for vulnerable families. I don’t understand an oversight like that."

Micheál says the lack of respite care has not affected his family, because if he arranged respite care for Jodie, he would still have to be at home for his mother. 

Jodie, 23, with the garlic she and Micheál grew over the lock down period.
Jodie, 23, with the garlic she and Micheál grew over the lock down period.

"My sister absolutely hates being without us at night, so it isn’t something that I have ever availed of.

"That being said, I appreciate the absolute need for respite care that many carers and families have, and the shocking lack of availability of this crucial relief."

In terms of change, Micheál says that carers need to be paid something that resembles the living wage, given proper pension entitlements, and welfare for carers and people with disabilities needs to be destigmatised.

"The spousal means test, although labelled as 'generous' by the former Department of Employment Affairs and Social Protection minister, is frankly unfair and clearly stems from a patriarchal mindset, almost assuming that the carer is female and that her husband will carry the financial burden of the care.

"People need to remember that every family is hypothetically one accident away from a care scenario. No family should be punished for not already being rich when that scenario arises.

"Care is valuable in and of itself. Carers should be facilitated and supported in their role, society should care about carers. It is deserving of government funding, political support and public recognition."

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