CARER of the Year 2018, Brenda O’Connell Barry, is one of the 190,000 Irish people who care for older, disabled, or seriously ill loved ones in their homes.
Her son, Fionn, who turns six in August, is ill with a life-limiting condition. He was diagnosed at birth with cerebral palsy, epilepsy, and an undiagnosed condition that limits the growth of his brain.
“When I won Carer of the Year two years ago, it was my first time away from Fionn,” says the mother of one from Ballyhea.
“Fionn has always been very vulnerable, and very prone to infection.
“These days are very worrying days for us, with the Covid-19 virus affecting the whole country and the whole world.”
The youngster has an extremely rare genetic condition, NACCI, and he is the only person in Europe diagnosed with the condition.
“It was explained to us that if Fionn got three serious illnesses in a row, for instance, three chest infections, it could be fatal for him. Every day we are mesmerised how he’s surviving,” says Brenda.
“We often have long days and nights when he is agitated. That’s the worst.”
Fionn’s parents watch over him day and night. The couple’s day-to day lives are taken up with their only son’s care. A lot of dedicated hours go into helping Fionn thrive.
“We love him more than the sun, the moon and everything in the world,” says Brenda.
And they protect Fionn every day of his life.
“Trevor and I have to be very vigilant where Fionn is concerned,” says Brenda.
“The common cold can have a detrimental effect on his wellbeing. This current climate is particularly challenging. I have Lupus, so the restrictions we live with on a day-to-day basis have escalated even more since the coronavirus broke out. I can’t go to the shops, it isn’t safe for me. I’m not worried about myself so much, but I worry a lot about Fionn.
“So now, I rely on Trevor when he’s off work to go to the shop and get the shopping in.”
Everybody is aware that COVID-19 is more dangerous for the more vulnerable people in our society and for those people who have underlying medical conditions.
“If either myself or Trevor were to contract COVID-19 and get sick, who would mind our son?” says Brenda.
“I think it is so frightening.”
The family are used to isolation.
“Isolation is nothing new for us,” Brenda agrees.
“Being a full-time carer in the home can be a lonely place. And with Fionn’s medical condition, for me socialising with others is very restricted.
“We both miss Granny O’Connell, who passed away last year.”
Brenda, who with her husband, Trevor, is the full time carer for her son, is never off duty.
“I think the COVID-19 virus will give people a much better understanding of how isolating life can be for the carers of this country,” says Brenda.
“People often say to me; I don’t know how you do it. Everyone is struggling and they need support. But they are not getting it. Carers might get more recognition now.”
It is hard to understand how the Barrys had to fight tooth and nail to get support for their son.
“We chose to fight for our precious little boy,” says Brenda.
“We fought tooth and nail for any support for Fionn who is around the clock care. We’ve put our heart and souls into caring for Fionn.
“When he was born, the doctors were saying he’d live 12 months; he wouldn’t see two. We were told to bring him home, make him comfortable and just enjoy our time with him. And we do that every day.
“Before the virus broke out, we enjoyed a walk in the park, a trip to the shops and a chat with our neighbours. We miss that. I miss that bit of freedom,” says Brenda.
“Fionn loves going to school at the Holy Family in Charleville, mixing and socialising with the other children there. The school is fantastic and Fionn is getting on really well there.”
Fionn’s neighbours miss seeing his beaming smile and sparkling blue eyes.
“We have an elderly neighbour across the road who visits us every Friday,” says Brenda.
“We have a cup of tea and a slice of apple tart together. Fionn and I look forward to her visits. So Fridays are not the same now. The local people here are very good and very thoughtful. We often find nice surprises left outside our front door on the doorstep. People are so kind. It makes our day.”
Fionn always keeps the bright side out.
“He is always laughing and smiling when he’s not in pain,” says Brenda.
He is a ray of sunshine.
“He is the happiest boy you could meet.”
When Fionn’s heart was checked, his parents were told something that they already knew.
“When Fionn had an ECG to check his heart, the doctor said he had the heart of a lion!” says Brenda.
His mum has the heart of a lion too.
“The carers of this country need the vital financial support to continue their work,” says Brenda.
“Every day we work so hard.”
SEEKING SUPPORT FOR CARERS
Family Carers Ireland has received a significant number of calls to its National Freephone Careline (1800 24 07 24) from family carers asking what might happen should they or their loved one contract the Covid-19 virus or be forced to self-isolate.
“Many of these family carers care for young children or adults with profound disability who may not be viewed as vulnerable to Covid-19 but are most vulnerable in terms of their care needs should their primary carer be forced to self-isolate or become hospitalised,” stated Catherine Cox, Head of Communications and Carer Engagement, Family Carers Ireland.
Given the unprecedented pressure on our hospitals due to the Covid-19 pandemic, the organisation’s top priority is to support as many people as possible remaining in the care of their loved ones at home. With this in mind, there is an urgent need for clear guidance for family carers on how to prevent the spread of Covid-19 in a home caring situation as well as a contingency plan with specific steps to follow in the event of the family carer becoming unable to continue caring. The organisation has already developed and published an Emergency Care Guide to help prepare for such eventualities, and it is now urging the HSE to present a clear protocol on how the health service will deal with such cases.
As the number of those diagnosed increases and many of these will be sent home to manage their own recovery, we anticipate that an increase in demand for home support corresponding to the surge in hospital demand. In order to prepare for this, current Home Support Packages are being reviewed and only cases requiring medical or personal care will be most likely continued. Otherwise families will see a reduction, or in some cases, elimination of existing home care hours on the basis of the unprecedented community support being mobilized in the face of an unprecedented national challenge. Family Carers Ireland accepts the need for this in light of the unique challenge that the Covid-19 pandemic represents. The organisation will be there to support those families and will work with other groups in the community such as An Garda Siochana, community groups and organisations to try to minimise the impact that this will have on caring families.
“We are all in this together and must show solidarity in these difficult times,” said Ms Cox.
Another major concern for family carers is the risk posed by the shortage of personal protective equipment such as hand sanitiser gel and gloves, particularly for those providing intimate care to vulnerable children and adults. Family carers are also concerned that they may be unable to access products essential to their caring role such as medicines, incontinence pads, catheters, diet supplements, etc. as the situation worsens.
Family Carers Ireland is calling on Government to put a number of measures in place to protect Family Carers including:
Family carers should be named and recognised as a ‘vulnerable group’ by the Public Health Emergency Committee and a guidance document for family carers should be produced giving advice on how to prevent the spread of Covid-19 in caring situations, setting out protocols and steps to be taken should a family carer or their loved one display symptoms.
Priority testing and verification where there is suspected case of Covid-19 within a family carers home.
Clarification over the continuation of home support services in cases where a person in a household has Covid-19 or is in self-isolation.
Contingency plans for when a family carer is diagnosed with Covid-19 or is in self-isolation.
All family carers should have access to personal protective equipment including hand sanitiser, gloves and aprons and gowns where necessary and be given clear guidance on how to use them correctly.
Covid-19 has forced the closure of many routine services family carers and their loved ones rely on including respite and day care services. Efforts should be made to provide in-home alternatives where practical.
Family Carers Ireland has received confirmation from the Department of Employment Affairs and Social Protection that family carers working up to 18.5 hours a week outside the home and in receipt of Carer’s Allowance can apply for the Covid-19 Pandemic Unemployment Payment and will receive payment should they lose some or all of their hours due to the pandemic.
ABOUT FAMILY CARERS IRELAND
Family Carers Ireland is the national charity supporting and advocating on behalf the 355,000 family carers across the country who care for loved ones such as children or adults with physical or intellectual disabilities, frail older people, the terminally ill or those suffering from chronic illnesses or addiction.
It provides a range of services and supports for family carers through its 22 resource centres nationwide and through our National Freephone Careline 1800 240724.
For more see https://familycarers.ie