Bungalow 3 Aras Attracta - a Parent's Perspective...

by Michelle Daly 

Footage shot by the RTÉ (National broadcaster in Ireland) Investigations Unit showed workers shouting at elderly residents, dragging and kicking out at them as well as force-feeding one woman. Tragically, due to their disabilities the residents in Bungalow 3 at Aras Attracta, Swinford, Co Mayo, are unable to speak and so are completely at the mercy of their carers.

Aras Attracta was the name of the village complex where my daughter Marie was offered a place and lived from 1990 until 2007, only 20 miles from where we lived. It was built on a twenty acre site, providing residential care for some of the moderate, severe and profoundly handicapped people in the community.

The 140 bed complex was the biggest building project undertaken by the Western Health Board at the time. The accommodation comprises sixteen bungalows, enabling the residents to live in small family groups under the care of learning disability trained nurses.

There was also a thirty-bed unit for the multiply handicapped and an eighteen-bed unit for the older retirement group; and four short term beds offering both clients and their families a welcome break.

The Day Centre offered varied activities with a pool of professional services at hand—physiotherapy department, central assessment clinic, workshop, vocational training unit, and day centre workshop.

Adjoining these facilities was the Recreation Centre with a swimming pool, gymnasium and weight training room.

The previous year we had a family holiday in Ireland and loved it so much decided to move there.  Marie who was 25 at the time, and my other two children who were much younger were delighted with my decision. My grandmother came from Castlebar so I decided to settle in Co Mayo and bought a little cottage. It was 1990, a time when children could no longer safely 'play outside' in the UK and I wanted them to have a more carefree life, which we certainly found in Ireland.

I was so thankful that Aras Attracta was run by learning disability nurses and that Marie would be under the care of professionals. For me, it was a dream-come-true. To set up home only twenty

miles from the most modern Centre in Ireland without even knowing of its existence was quite astonishing.

It was arranged for Marie to travel to Swinford on a daily basis

for two weeks prior to taking up her residential place. This slow

introduction would help to familiarise her with staff and give her

a taste of what was to come. With the use of her diary, there was

frequent communication between the unit and home.

The plan was for Marie to arrive at the bungalow where she would eventually be living, have some lunch with the other clients, and together with the nurses she would spend a couple of hours in the recreational building before coming home just in time for tea.

I felt sad because I could not sit down with Marie to explain

the coming changes in her life. Mixed emotions are common when any child grows up and leaves home but they’re more profound when the child is severely disabled. They have no voice. Marie wasn’t making these decisions about her future – I was, and I was painfully aware that her life would always be in someone else’ hands. 

Anna, Marie and Patrick 1989

I had always made it clear to the children that Marie would one

day be leaving home, letting them know it was out of the question

that they would ever be expected to take over her care in their adult life. Marie was my responsibility, not theirs. 

I'd met her when I was 16 and working as a housemother. Marie was 5 and the only handicapped child in a home run by nuns and because she couldn't walk and dragged her feet across the polished floors, the nuns locked her in a big pram store room all day or left her sitting on her cot with a rope tied around a pipe so she couldn't tip it over. She spent most of her time screaming and screeching, and had a permanent scab on her forehead from banging her head onto the floor.                                             

    

Frightened of everything

Us age 5 and 16

I was one of seven children and it was second nature to look out for the underdog, so I began to take an interest in Marie, I bought her shoes and tried to keep her at my side when I was on duty or took her out on my days off. She soon learnt to walk and was tottering beside me. 

Learning to walk

I brought her to live with me when she was 8 and I was 19. Although her understanding is very limited she looks upon me as her 'Mammy' and I look upon Marie as my daughter..
Now I noticed that the older my children got, the more they questioned, and they raised some logical points.

“Ah yes, but what if?” was constantly put to me.

“What if she cries for us?”

“What if nobody understands what she’s saying?”

I’d tell the children most people left home when they reached a

certain age. I explained how Marie would benefit from the social

interaction life in the new village complex would bring. It helped,

but they weren’t convinced.

 

Marie's early years of deprivation had left her with challenging behaviour. She couldn't bare a door being closed on her and could easily revert to the screaming and screeching if her behaviour wasn't managed in a certain way. I felt we had come a long way but had found the right place for her to have the love, respect and dignity she was entitled to.

And so Marie went to live at Aras Attracta.  
 
Years earlier I had attempted to write a book about our lives together and now with Marie gone to pastures greener, I took my manuscript out of the drawer and 

decided to continue with it. I worked hard for the next few months, writing, writing, writing, often during the night when the children were sleeping. The silence was perfect and allowed my mind to travel back, uninterrupted, to places and times I had desperately tried to run away from in the past.

The only sound was from Sally, a donkey I rescued from an overzealous owner. I’d seen him hit the poor thing with a stick once too often when he walked her through town. I stopped him one day and asked if he would sell her to me. He looked aghast and shook his head as if I had asked to buy one of his children. However he must have had a change of mind (like you do about your children) because when I saw him again a few days later he said I could have her for a blue. A blue? I repeated. Twenty pounds, he replied.

I was gobsmacked the day I found out my book was going to be published. When it came off the press there was a national postal strike in Ireland so the publisher Seamus Cashman, very kindly sent a dozen books down by train. I remember the day so clearly. It was a gorgeous summer’s morning and I was sitting on a bench with Patrick and Anna, in the railway station in Ballyhaunis. I smiled when I heard the Dublin train in the distance, knowing it had my freshly printed book on board. What a feeling when I opened the box on the platform to see Marie smiling on the cover! It seemed so unreal. This wasn’t supposed to happen to someone like me; someone with no education - someone who got kicked out of school when she was fifteen for being a bad influence on the class. It had been a long journey since I first spread my pages across the pasting table and tapped away on my Brother typewriter. It proved to me that anything is possible.

I couldn’t wait to take the book to Swinford to show Marie and

the nurses. The nursing staff didn’t get much feedback, and seeing the book with a special mention to Aras Attracta inside the cover, let them know how much they are appreciated. I rang on ahead so the nurses were expecting me. With Marie having no sense of time and to avoid confusing her, she was unaware of my impending visit. 
She’d been in the unit for 18 months and I still got a lump in my throat whenever I saw her. She was a people-watcher, often sitting alone watching the activity around her. As soon as she spotted me she came to life and her eyes watered, just like mine did. Some things you just never get used to and Marie leaving home was one of them.

Some days I could tell there was a staff shortage in the unit and I did feel sorry for the nurses. Routines have to be followed and staff shortages made their job twice as hard.

I kissed Marie that day, gave her a hug and then I said, “Wait until you see what I’ve got?” I reached into my bag for the book and knelt in front of her. As expected there wasn’t much of a response, so I carried on dipping into my bag and brought out her usual treats. The nurse who came over to greet me gasped when she saw Marie on the cover. Her reaction brought the other nurses over to investigate. The three nurses stood close together and flicked through the pages, pausing to admire the photos and the inscription to them in the front.

A visit to Aras Attracta

Time passed and 2000 I attended Marie's case conference at Aras Attracta and was pleased to hear she was doing well. During the meeting I cautiously looked for assurance that Marie's intimate needs, bathing, toiletting etc, were always met by female staff and was unhappy to learn from one of the male nurses present that seeing to Marie's personal care was also part of a male nurses role. To me that was unacceptable. I'm sorry but I wouldn't want a male nurse taking me to the toilet or giving me a bath and I suspect most women would feel the same. Marie has no voice and relies on us to treat her with dignity and respect. I just couldn't accept it so I contacted Deirdre Carroll from NAMHI (now known as Inclusion Ireland) who I'd been priviliged to meet a few times and asked her if there was a specific policy on this matter. Deirdre suggested I contact the Western health Board to ask ask if there was a specific policy about male staff dealing with the intimate needs of women with an intellectual disability in their care and received a wishy washy reply so I wrote again asking for an answer to my specific question and received the following response from Mr Seamus Mannion, Regional Manager of Community Services:

1st September 2000

"Dear Ms Daly,

Further to your letter of the end of July, I regret that the Board did not adequately respond to your enquiry. To answer your question directly the Board has no specific written policy. 

The dignity of people in the Western Health Board's facilities is, I believe always respected. And from discussions with the local Director of Services in Aras Attracta he confirms that intimate dealings with female patients are handled by female staff."    

I was so relieved when I read the letter and hoped the staff at Aras Attracta would understand my reasons for raising the issue. 

I was a single parent and had home-schooled my kids. When they reached 16 they returned to England to study for their GCSE. I needed to find a job. I worked in Dublin for a while during the week in the Magdeline Laundries and returned to Co Mayo at weekends. Then I began doing agency work in the Uk and literally lived in between the two countries. I often felt torn with Marie in Ireland and Patrick and Anna now living in the UK. 

I eventually settled in England but a day never went by when I didn't think about Marie. When I visited after a long absence the staff had tears in their eyes when they saw how happy she was to see me. I hugged her hard. She knew how much I loved her. Her beautiful hair looked like it had been cut around a basin and couldn't have been any shorter so I asked the nurse if they would leave it to grow. 
We went out for a few hours and had a meal in the local cafe and when I took her back to the unit, I told the nurses I would return to Ireland in a few months when the weather was warmer, to take her on a holiday. They were really pleased and I couldn’t wait.

That summer I loaded the car with Marie’s favourite things: Joey, the monkey, the baby’s buggy that she loved to push her doll in, our music videos and DVDs, her big fat catalogue, colouring books and pencils. I also took her big container of Duplo bricks, that she spent hours putting together in her own fashion—a house with no roof, a ‘twain’ with no wheels. I’d rented a holiday cottage near Westport on the west coast for two weeks. I was looking forward to some quality time, being able to relax and enjoy Marie's company. 

I sailed on the Liverpool to Dublin ferry and drove down to Swinford. I arrived at Aras Attracta and crawled along the drive to Bungalow 4. When I went inside I was pleased Marie was sitting calmly beside a volunteer having no idea of our impending adventure. I brought most of her clothes and even a pair of wellies so she could walk in the lakes at Westport. 

Marie was always pleased to see me, and no matter how far apart my visits were, she never forgot how to interact with me. We developed a language and understanding that never faded with time.

We drove out of Swinford, through Foxford and out towards the coast. When we arrived in Westport, Marie and I met the owner of the bungalow in the local superstore car park and followed him through the countryside to our destination. We must have weaved around a thousand bends and passed a million cows and sheep on the way.

Thank goodness the owner had arranged to meet us because I knew I’d never have found it on my own.

The bungalow accommodated eight people, and we were spoilt for choice; so much room and a long hallway which Marie would be thrilled to push her pram up and down. They even had a baby room with a cot.Talk about spoilt!

I unloaded the car, and put on the kettle, the CD player was plugged in and Abba rang through the bungalow. We had a cuppa, then, I put our clothes away and off we went to do some shopping. I tied a carrier bag to gate posts or trees at every bend we came to so we’d be able to find our way back. Marie laughed as I jumped in and out of the car and so did I. It was fun and we had a great week.

The next time I saw Marie, I couldn’t help noticing how thin she was. She was a slow eater and because she got up at 5 am every morning, must have also missed out on some of her meals when she was allowed to catch up on her sleep on a chair in the day-room. That morning the staff said she knew I was coming and had kicked off with her screaming, sitting on the floor crashing her head into the door.

This is where the one-to-one staff member is essential for people like Marie, with such severe challenging behaviour. Most of her frustration was due to lack of speech and inability to express herself. I felt sorry for the staff. They wanted my visit to be as pleasant as possible, and they ended up having to sedate Marie to calm her down and stop her from injuring herself. A one-to-one staff member could have distracted Marie and nipped her behaviour in the bud before she got out of control and was sedated. I took her little hand and led her to the car.

We went to Knock Shrine, which was only about eight miles away. It was a place visited by pilgrims and tourists throughout the year. People came from all over the world to see where Our Lady was supposed to have appeared in 1879.

The car park was full of coaches. Different accents drifted our way as groups of people strolled towards the churches. I lifted Marie’s wheelchair out of the back of the car, strapped her into it, and off we went. She loved being on the move, but this day she seemed quite sad and unresponsive.

Knock Shrine 2005

We went into the church and I lit some candles. I loved engaging in this ritual since I was little. I considered myself a Christian, not a Catholic. The masses were meaningless to me and I never attended them, but give me an empty Catholic church and it’s my kind of heaven. I put coins in Marie’s hand and held it over the slot in the metal box so she could drop them in. A slow smile spread across her face as the coins clanged on top of each other.

I must have lit ten candles that day. The first one was always for my older sister, Cathy, who died from cancer in 1992 two weeks after my book was published. I said a special prayer for the rest of the people in my life. I also said a prayer for Marie’s future, that I would make the right decision.

We walked around the souvenir shops. I helped Marie out of the wheelchair and encouraged her to push it with me. We did a slow walk back into the church grounds and sat on the wall to have something to eat. I was looking in the bag on my knee for the sandwiches and Marie was trying to peer in, making oo and ahh sounds, waiting expectantly to see what I have got when I noticed two cuts on her head. They were nasty gashes; although the bleeding had stopped, they were redraw. I knew it was from bashing her head into the door. Today the scars remain, leaving tiny bald patches.

I broke the crust from the sandwiches and gave Marie small pieces at a time, making them easy for her to hold. If I gave her the whole sandwich, she would have had difficulty holding the bread together and the filling would have fallen out onto the ground. I chatted away to her. It was one-side but I always talked to her as if she understood but this day she stared beyond me into the distance. I wondered what she was thinking. She looked so sad at times. I could feel my eyes welling up. I felt I’d let her down.

I knew she rarely went out because her behaviour was so disruptive and unmanageable, and yet she sat with me as good as gold. Just like always, she liked to be close by. That day, it was as if all the hope had gone from her.

So there we were, lost in our own thoughts, sitting together on the wall. Suddenly her little hand reaches out and touches mine. She took it to her lips and kissed it before resting it back on my leg. I felt overwhelmed at such a show of love. That kiss told me she knows—that she’s always known—deep down I will always be there for her. These are precious moments nobody else sees. I turned to meet her eyes, and for a fleeting moment, I felt God looking back at me.

I was weighed down with trying to make one of the biggest decisions of my life. I knew it was time; I had to seriously think about bringing Marie home.

I had been scouting around for a decent residential place in the UK where Marie could live close by and have lots of family contact but had not found anywhere suitable.

he only alternative was to look after Marie at home, but would I be able to cope? It seemed a long uncertain road, yet I had to be positive! Didn’t things always turn out OK? I took Marie’s hand and squeezed it. She looked at me, and I smiled at her. I told her that one day I was going to bring her back home. I didn’t know when, but I knew it wouldn’t be too far away, I wish she could have understood..

I returned to Ireland a few months later and collected the last of my things from storage. When I visited Marie the nurses told me her behaviour was so unmanageable when she went out, sitting on the ground in the road, screeching, etc., that they no longer took her anywhere. I suspected she sat down in the road because her left leg had gone into spasm and she could no longer walk. Some days she walked better than others, but she could never walk very far.

It was time to make that decision.

I took her to the chemist in Swinford to have her passport photo taken. After much face pulling and clowning about, I managed to get her to look at the camera.

When I left Marie back on the unit that day, I asked the nurses if I could leave her wheelchair with them for when I brought her back to England on the plane. I think they finally believed that Marie was finally leaving Aras Attracta.

 

I cried the night before I brought Marie home. I was 52 years-old and Marie was almost 44. This wasn't how things were supposed to turn out. My health wasn't too good. I had diabetes, and arthritis in my hands, particularly in my thumbs, which were regularly injected with cortisone. How was I going to cope? 

I would just have to put my trust in God and take one day at a time. Deep down I had an awful awful feeling that if I didn't bring Marie home soon her life would be a serious risk and she'd be coming back in a coffin.

I was also nervous. After all the trouble I’d gone through to obtain her passport, filling out the forms, presenting the correct documents at the Post Office counter, even paying the express fee, the post office clerk looked at the photo and deemed it unsuitable. Marie was only showing one ear instead of two.

My heart sunk. She lives in Ireland, I told them, but rules were rules and they didn’t make them. And now, with no passport, I wasn’t sure if Marie would be on the return flight with us.

The nurses had taken Marie back to the chemist to have her photo taken again, without success. What the image they sent over to me showed was a snarling, anti-social woman totally unaware of the effort those around her were making to enable her to return home to her family.

I racked my brains for a way around it and out of desperation, I asked the nurses to obtain a letter of identity from the Irish Police and also to get the police to sign the back of Marie’s photo. Had it been any other country, my request would have been futile, but the Irish will find a way around anything. I felt the nurses and police and anybody else involved, would do all they could to help us.

The Director of Services rang me a week later to let me know that, two nurses had obtained the signed letter and photo and these items were locked away in the safe. I was so appreciative. I asked her if they’d obtained many letters like that from the Police. “It’s never been done before” she answered. Oh my God, I’d thought, I hope it works.

My daughter Anna, travelled with me from Manchester and after hiring a car at Knock Airport we booked into a Swinford hotel.

The following day I had a planned meeting with the director of nursing to discuss Marie's notes and medication.

I was gently warned how much Marie had deteriorated and how difficult her behaviour had become. The nursing officer doubted I’d get her up the steps of the plane. It made me wonder if Marie's behaviour was that difficult why weren't they doing something about it? He suggested if Marie started her screeching at the airport to get her a cup of tea and a plain biscuit. I would never do that as I don't believe in giving in to Marie when she screeches. I thought it was best not to see Marie that day and returned to the hotel after the meeting. 

The next day when Anna and I went to collect Marie I was shocked at how much more weight she had lost. And her legs were covered in hair. The nurse gave me a month's supply of medication and a large bottle of medicine prescribed by the GP as a food supplement. I couldn't understand why she needed food supplements when she had always loved her food. I mean why wasn't she sitting at the table eating proper meals? What was the problem?

I signed the discharge papers and thanked the staff for all they had done for Marie. She slipped her hand into mine and Anna’s. We said goodbye and left.

In the Swinford hotel

We stayed another night in the hotel where Marie and I shared a double bed and Anna was in the room next door. Marie snuggled down next to me and was asleep in no time at all. I took out her care plan and began to read. 

 "Marie enjoys most foods particularly cakes, biscuits and sweets and crisp." That was so true so why oh why was she so seriously underweight.?

"If she doesn't get her own way she urinates on the floor."  I thought it was more likely she wanted to go to the toilet and staff hadn't noticed.  

"Has regular episodes of screaming, pulling her hair and bouncing on the chair throwing her head back, hitting herself. She may throw herself on the floor, spitting. She may scream and shout whilst out on trips."  Spitting - never, she isn't physically able to.

   

We left for the airport very early the next morning. The nurses had given me the official letter and signed photo from the Irish Police, and I just had to keep my fingers crossed they would accept it when we arrived at the airport. If they refused, we’d have a long trek on the coach up to Dublin to travel as foot passengers on the overnight ferry. I shivered at the thought.

The ground was still covered in snow. We left the hired car in front of the airport entrance as arranged and hurried in through the doors.

Standing in the airport with my two daughters was surreal.

I hovered around the check-in desk waiting to get this final ordeal over with. As soon as it opened, I put the luggage on the conveyor belt. Anna and I handed over our passports. The operator checked them over and handed them back. Then I took Marie’s letter out of the envelope and acted as though it was the most natural thing in the world when I handed it over for her to read. I bit the inside of my cheek as I stood watching the operator scan the letter, searching her face for a sign of disapproval. She looked up at me.

“Oh, that’s fine!” she smiled and handed it back. “Have a good

flight.”

I turned to Anna and sighed with relief. At last I could relax.

We were starving, so we went to the cafe for some breakfast, the

three of us sitting together. It felt good.

We went on ahead of the other passengers and wheeled Marie out to the plane. She was a little angel and took everything in her stride. I must have been beaming like a Cheshire cat when we reached the aircraft and the steward took her wheelchair to put in the hold. Marie was definitely coming home. I watched her hold onto Anna’s hand and climb one slow step at a time…up…up…up…to the aircraft and through the narrow doorway for our journey home.

The propeller swished and we held hands as the stewards went around slamming the overhead lockers closed. I looked out across the snowy fields with very mixed emotions. We flew into the clouds leaving the bogs of Mayo behind—so much sadness, but there was also plenty to look forward to.

"2nd day at home Dec. 2007

1 month at home

 I always blamed myself for what happened to Marie. For years I've carried around the heavy burden that Marie's physical deterioration at Aras Attracta was because she was fretting for me and I wasn't there. I was off trying to get on with my sometimes difficult life with the knowledge that she was happily getting on with hers. As the nurse said, they were her family now. 

 

6 months at home 2008

But I took her on when she was five; she was a gift from God then as she still is today.

                                                 
I watch the video clip of those poor women being abused and wonder if Marie has been too. I remember in 1998 receiving a letter that Marie had had an accident at Aras Attracta almost a week after it happened. I immediately rang a senior member of staff and was informed Marie had been having a temper tantrum at 7.30 the previous Saturday night and thrown herself back off the chair hitting the corner of the wall and cutting her head. A GP was called and when Marie (whom I imagine by this time was in a very distressed state, bearing in mind her mental age is below that of a 2 year-old) wouldn't co-operate with him stitching the wound she was then taken to Castlebar Hospital and had 4 sutchers. I wrote to the Director at Aras Attracta and complained about the time it took to inform me and I also asked for a copy of the accident report.
I brought Marie home for a week and gave her plenty of TLC. She was none the worse. Accidents happen and if Marie was that easy to look after she would have been living at home. However, I did feel it could have been avoided had Marie been moved to a 'safer' area and I put it down to busy staff and not enough of them.
Today I look at the accident report filled out by a male staff nurse; 'Temper tantrum, headbanging and kicking. Sat on floor and hit her head backwards on corner of the wall.'  but now I find myself scrutinising two conflicting accounts of how Marie was injured and I wonder if she was shoved or pushed by a member of staff. I wonder if the staff nurse on duty the night of her accident is one of those suspended. My mother used to say evil thinkers are evil doers, and I hate to think the worst of them, it's just not in my nature. Then I remind myself of all the lovely nurses I met at Aras Attracta and the vision they had when it first opened. I think of how good they were taking Marie to the chemist time and again to have her passport photo taken. The trouble they went to obtaining a letter from the Gardi enabling Marie to travel to England. I have a photo somewhere of myself with the then Minister for Health Brendan Howlin, at the late official opening of Aras Attracta and I have to keep reminding myself there's a lot of good in the world.  

The fact that it was a whistle blower nurse who first raised concerns about the standard of care long before the TV team did their filming shows the integrity and dedication most of them have. Thank God RTE followed it through and did their own investigating for all the world to see.

I would like to know which other bungalows the abusive staff worked on at Aras Attracta and if any of them were on bungalow 4 before December 2007.
I would also like to know how many patients in bungalow 4 had meals replaced with food supplement medication. 

For all this to happen in a rural area means there is no cloak of anonymity. Everybody knows everybody and there'll be no escaping the public wrath. I don't really feel any sympathy for the staff who abused those poor vulnerable women. However, I do hope the public will remember that the abusers families are innocent victims in all of this. Their lives will never be the same any more than the lives of the families of those poor women will.

Marie in 2014

I have always had a great interest in social care and having been on both sides of the fence has given me much perspective. Being a full time carer to Marie makes me almost housebound but I do what I can to help others. I also write family life stories about people with special needs and am founder of Warrior Mums blog for parents of children/adults with special needs.

Since Marie came home I updated our story and published under the original title of With a Little Help From My Friends. It's a very appropriate title dedicated to all the people who have helped us over the years. I was honoured to have Dr Sheila Kidd, retired Consultant Psychiatrist, Cambridge, who has been interwoven into our lives since I first brought Marie home, write the foreword.

And again I paid tribute to -  

"The nursing staff at Aras Attracta, Swinford, Co Mayo, Ireland for the love and care they gave to Marie." 

I mean that from the bottom of my heart. There was a time she did have lots of love and care. I just wish it could have continued...

Contact details

michelleannedaly@yahoo.co.uk

@MichelleDalyLiv

Michelle Daly's Warrior Mums

With a Little Help From My Friends - in paperback

With a Little Help From My Friends - Kindle

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