The forgotten front
Leona is crowned Cavan and Ulster Netwatch Family Carer of the Year
Last December Leona Davey was dressed up in her finery at an award ceremony in the five-star Westin Hotel in Dublin. Having been selected as the Cavan and Ulster Netwatch Family Carer of the Year, Leona was on the shortlist for the national title.
“We had a great time in the Westin Hotel, it was lovely, but we had to come back at seven o’clock to change nappies and sort pumps. I was like Cinderella, reality kicks back in,” she said of that evening.
Leona from Cootehill Road, Cavan, cares for her son Alex, daughter Emma and husband Anthony.
Anthony, a self-employed driving instructor, was diagnosed with a large, grade-three brain tumour last March. Following surgery he is receiving radiation therapy and chemotherapy.
Alex was born with Wolf-Hirschhorn syndrome. He cannot walk or talk and requires round-the-clock care, while daughter Emma also requires individual attention.
Anthony’s condition has stopped him from driving, prevents him from working and makes him reliant on Leona to transport him to and from appointments. He describes his wife as “the kindest person I know, hugely dedicated to her caring role and is the one thing that has kept the family together”.
In nominating his wife, Anthony gave a very honest appraisal. “My husband wrote that we are together 24 years, married 20 of them. We are an absolute team. We are very positive most of the time, apart from when we want to kill each other,” Leona laughs.
Originally from Farnham Street, the mother and wife has, through her involvement with Family Carers Ireland, championed the role of caregivers.
Family Carers Ireland is a national charity supporting the 500,000 family carers looking after loved ones such as children or adults with physical or intellectual disabilities, frail older people, those with palliative care needs or those living with chronic illnesses, mental ill-health or addiction.
CSO figures from the Irish Health Survey 2019 estimate one in eight people in Ireland, aged over 15, are family carers. This figure suggests some 516,594 people provide regular unpaid care. Conservative estimates suggest family carers save the State in excess of €20bn every year.
However, by putting a cash value on the role of carers, there’s a risk the real value of their efforts could be overlooked. The true worth is a society providing for the most vulnerable members.
Like all parents Leona’s days are mapped out with tasks filling up the hours between rising and slumber. That list is fattened by the level of care required by those who depend on her.
“I cared for my own mother before she passed away from cancer,” Leona tells the Celt. “I care for my husband who has a grade three brain tumour, which is treatable, but not curable. My son Alex is 15, he has complex needs requiring 24-hour care. So it’s a busy house, but a happy home too.”
Leona’s life is all about preparation. Even in talking to the Celt she put together a mini presentation on the role of the carer: “It is entitled ‘Who minds us’, or ‘We’re the forgotten front’,” she states.
Voice in Europe
This level of preparation is no surprise. Through Family Carers Ireland, Leona spoke in the European Parliament about her daily life. Facilitated by then MEP Marian Harkin the Cavan mother spoke on behalf of carers: “Brussels is so interesting. To see how it works from the ground up was amazing.
“There were 12 of us who spoke to the parliament. We were invited by Marian Harkin who was an MEP at the time. We got to speak in what was like a focus group. We represented the grassroots, each country has a representative from different level,” Leona said of the experience.
“It’s about being recognised. I felt I was being listened to, but it was explained on the day that it takes a long time to develop. It was good to get our say. I am only a mammy, but a busy one, this is just who I am. There are so many of us,” she tells.
Last year’s awards were a different sort of recognition, but ones that Leona is humble about: “Being awarded the Family Carer for Cavan and Ulster was such an honour. The final in the Westin Hotel in Dublin was also a special day. Miriam O’Callaghan is a lovely lady.
“When I got that award, when I was walking up the steps, I was thinking of all the people I know who do this on a daily basis. It’s not about me “being fabulous” it’s about recognising that there’s so many people like me doing this everyday,” she explained.
The round the clock commitment is something the caregiver has come to accept: “I do miss having free time to myself. If you told me 15 years ago that I would be caring for three people, I probably would have ran away and said I wouldn’t be able, but I found an inner strength I didn’t know exists within me. I have to say it’s a privilege for me to be able to help people. The greatest gift you can ever give is time, that’s so true.
“I have changed so much as a person over the years and learnt never to take anything for granted and don’t make any plans. I know my limits and will always give 100%, but am not afraid to ask for help,” Leona says.
One of the key objective of Family Carers Ireland is to benefit the community by supporting and promoting the health, wellbeing and quality of life of family carers and those for whom they care. They also lobby government on behalf of people like Leona.
She says such work is necessary: “I would like to be treated fairly and acknowledged for the work I do 24/7 as a forgotten carer. There are around 516,000 family carers in Ireland. We would like validation. There seems to be no urgency from the powers that be to recognise us.”
State support for the dedication of the carers is the goal of such lobbying: “There is a saying among carers that we need to outlive our children, which is unrealistic. We are concerned about who will mind our children when we die. It’s a huge worry for me. I know we can only do our best and plan for whatever we have. There’s nothing for Alex when he leaves school in two years. He needs a nurse and constant care.”
Another area Leona feels could be addressed is providing home carers with the training that commercial or State services have: “When a carer comes into your house you know they are trained. They have work practices: Two people to carry or two people to use a hoist, where we at home, we just have to carry on. It may sound obvious but, getting advice on how to go about daily chores, could be a real help.”
Gratitude
Leona says she’s grateful for the supports there: “I was actually starting to sit down and write down all the people in Cavan who helped us, but it’s a very long list. I just want to thank everyone for all their help and support over the years, you know who you are and will never be forgotten by us.”
Despite the gargantuan workload her home life presents Leona recognises the value of personal development: “I just finished a short course with Carlow IT. It’s given me a new lease of life, hope and a fresh way of reflective thinking and autonomy. I have had great support from my moderator, Siobhán, and my classmates.”
The pressures of the last two years have had one benefit for Leona: “The only positive thing to come out of Covid is that, through technology, it has brought the outside world in for me,” she tells.
Leona speaks of the privilege of caring for her loved ones: “What you give in you get back. I am very private, but with people I know I’m very vocal. If I speak to a group I will chat about my experience, but I think in general I’m just protective.
“Along the way I have met parents who were “ahead” of me in their journey, people who really helped me. If there’s anybody I can help, by talking about caring or even just chatting, I love to do that. I know so many people in our special community. I have made some really good friends, so many other parents. Sometimes words aren’t needed, you just know.”
She offers sage advice to anyone who knows a carer: “If you know somebody who is caring, maybe just give them a call and say ‘hi’, say ‘I was just thinking about you, are you okay?’, ask can you go to the shop for them. It makes a big difference.”