Personal experience of Alzheimer's inspires Frances' great work

"Walk a mile in my shoes" is a quote that resonates with lots of people. Finding someone who has experienced what you are going through can be a great comfort if you are struggling.

People who encounter Frances Maloney within the Foxford and District Alzheimer’s Trust must experience great comfort. Frances has used her deeply personal experience of dementia and Alzheimer’s, with her Dad and Mum’s illnesses, to shape a service in Foxford that supports people living with those conditions and their families.

We sit down to chat about her journey to where she is now.

Angelina: Frances, thanks for talking to me. Tell me a little bit about your background.

Frances: I grew up in Ballina. I'm one of eight children - I have two older brothers and five younger sisters. My Mum was a stay-at-home mum and went out to work in later life when she could, as we got older. And my Dad was a painter/decorator and was self-employed, and in later life, he went to work for Telecom Éireann. 

I went to school in St Mary's Secondary School. When I finished there, I went to what was known then as Galway RTC and did a Certificate in Civil Engineering, and then a Diploma in Construction Studies and also a Postgrad in Marketing and Enterprise skills.

Angelina: What drew you to that particular area, Frances?

Frances: I was the first girl in our house to think about going to college. I had an older sibling, Kenny, and he had done civil engineering and I liked the sound of it. I hadn't done any of the construction subjects in school and really hadn't a clue what it entailed. I just thought, that sounds good, I'll do that. 

I finished college and returned home to Ballina and had my first child and went back to college again to do a Certificate in IT. I ended up working with my brother Kenneth, and we set up our own business called KC Surveying.

I was there for 16 years. We primarily designed one-off houses in rural Ireland and surveying, soil tests, boundary disputes, designing houses for people all over the county and further. 

My dad had started to have little, what they thought at the time, were mini seizures. But that led me on to the next chapter in my life, which was working with my Dad in our surveying business and getting to know him on a real one-to-one level. Then, around 2005, he was diagnosed with vascular dementia and my life went on a completely different path altogether.

Angelina: Tell us about the path that brought you?

Frances: When we were faced then with Dad's illness, and he was getting more advanced slowly, support services then became an issue for us. My mother was struggling and I remember her calling me and saying, 'There is a daycare in Castlebar and it's for people like your Dad, and they have an open day. Will you come with me?'

We went to Castlebar and I met the regional manager of the Alzheimer Society of Ireland there - Des Mulligan. I asked him, 'How come you have this here in Castlebar? Why isn't there one closer to Ballina?'

Des told me it all started through the Community Employment (CE) Scheme, that the nurse was managed and paid for by the society and the staff then came and were trained through CE under her supervision. 

I'm a big believer in serendipity and things happening for a reason because the night before that I had sat with other community volunteers at a meeting in Foxford, whereby we had just been awarded a CE scheme in Foxford and given 18 placements. So I had a light bulb moment when I met Des, and I went back to my committee and I said, 'Can I have four of the places? I'm going to open a dementia specific daycare in Foxford.' And I said, 'My Dad will be the first person to use it.'

Angelina: So what happened from there, Frances?

Frances: I met Des in September 2011. I had major surgery in February and had a meeting about three weeks later in my pyjamas in my dining room with everybody. The service opened the second week of April 2012. 

But my challenge was that I had to raise €42,000 a year to run the service. I'd no experience in fundraising. But I knew I needed to put some shape to it. So I went back to my committee, the same five people who were involved with the Community Employment Scheme, and I said, 'We need to set up a committee if we're handling money.' And so Foxford and District Alzheimer's was born and registered to become a charity. 

We did all the fundraising and we partnered with a like-minded organisation like Western Alzheimer's or the Alzheimer's Society of Ireland, but basically we provided the money to run the service.

Angelina: At this stage, you were after major surgery too?

Frances: Yes and I was restricted in what I was allowed to do. But I thought, 'I'll go stir crazy if I can't get out and do something.' I saw a job advertised by the Alzheimer's Society of Ireland for one of these Genio projects. 

There were four Genio projects nationally that fed into the first national dementia strategy. The purpose of these projects was to trial new supports and services to support a person with dementia to live longer at home within their community. So I applied for the project manager position and it was a three-and-a-half year contract and I secured that. 

I was given the application document that went in for the funding that basically stated you have to set up so many services. And so we established a nurse-led memory assessment unit. We had the first dementia advisor nationally and we started to provide a one-to-one support, individualised support service for people living with dementia that wasn't based on medical need. 

I went on to meet thousands of people, thousands of families living with dementia over the last 12 years. And it's been a journey and it's been such an honour as well. Dad passed in 2015. We did 10 or 11 hard years with him. He was ravished by the disease in the end. But he taught me so much.

Angelina: The unbelievable happened with your Mum a few years ago too, Frances?

Frances: In 2019, she'd had cancer and had two lumps removed but was fine. She came to stay with me on March 13, 2020, when Covid hit. And within 24 hours, I knew things weren't right. My mother was diagnosed with Alzheimer's in September 2020. 

I felt so bad for her because she had seen what it had done to Dad. She had a very acute journey with it. But her biggest fear was that she would be put into a home. And I promised her that would never happen and it didn't. Mum died at home with all of us there around her in April 2022. I had three lovely months with Mum at home in my house. Then we moved her back home with the support of my other siblings and carers from Home Instead.

Angelina: There are big developments happening in Foxford now, Frances?

Frances: I approached Mayo County Council for a site in Foxford for a purpose-built centre because I had promised my Dad I would build a house. I knew that I didn't want it to be a medical model of care. So we have a social club in Foxford now called FACT - Foxford Alzheimer’s and Community Trust. We use language that is positive and does not feed into the discrimination that sometimes goes hand in hand with having a cognitive impairment. 

We got the planning for the centre. The next question was where will we get the money. I heard about the IIP - the Immigration Investment Programme - and I applied. We went through the various criteria for that and we got word we got the funding. The building is underway and is at roof level now. I am going to name it Green Edge House, as a tribute to my Mum and Dad because Dad named our various houses Green Edge years ago. And I'm putting a red door in it because my mam always loved a red door.

Angelina: Tell us about your own career journey in recent years, Frances?

Frances: In 2019, I was still managing Community Action on Dementia and where we sit in HSE terms in the CHO2 area - they decided to have a review of all dementia services in the three counties, Galway, Mayo and Roscommon. The recommendation came out of that that Community Action on Dementia should merge with Western Alzheimer's. 

So I took on a new position of Regional Manager within Western Alzheimer's and my main role there was to provide governance and guidance around all community-based supports and services. 

The time came to move forward and out of nowhere somebody said that there was a general manager position coming up in Home Instead. Home Instead was always someplace I considered to be an organisation that had a good standard of care. They had delivered care to my father, they had delivered care to my mother, and I trusted them. I went through a rigorous interview process and was the only female applicant at this level, senior management level and I just started here a couple of weeks ago. 

I have always have said to families as I met them over the years, when you're supporting somebody with dementia, I think of the care plan or the support plan, like a jigsaw puzzle. FACT social club is part of the jigsaw puzzle, the HSE is part of the jigsaw puzzle, Western Alzheimer's is part of the jigsaw puzzle and Home Instead is part of the jigsaw puzzle. Because it doesn't take one person to sustain somebody at home with any illness or any mobility issues.

Angelina: I know there is a walk coming up this week too, Frances?

Frances: June 21st is the longest day of the year and we started this idea of fundraising on that date because the longest day affects people with dementia. Generally, when the sun starts to set in the evening, a symptom called sundowning can take place. So it's really about generating awareness around the illness and an opportunity to fundraise for FACT Social Club and to get us all together. We're going to start from the Moy Hotel in Foxford. Our slogan is 'Walk A Mile and Make Me Smile'. We're just doing one mile, so that it's achievable for everyone. It's an open invitation for anyone who would like to be involved to come along at 6pm on Friday, June 21st.