'In the last stages of her illness, singing old family songs was her only way of communicating.' HELEN SHAWshares her mother's struggle with dementia to coincide with the launch of Anam Cara, in Glasnevin, Dublin, the 'housing with care' centre where Rose Shaw spent her last days and died last month
FOR A LONG time we thought it was simply her hearing. We thought her often odd comments or distracted behaviour was because she couldn’t hear.
In hindsight it is hard to believe why the word “dementia” was never mentioned by her doctors, until things were so far advanced it was undeniable, as if we were supposed to simply know what was happening and to understand our mother was gradually fading away.
Writing this is a plea to take the stigma away from dementia, to allow us to see people whole again, and to provide care for them which puts their humanity and their life’s legacy at the fore.
Rose O’Reilly, our mother, was born in October 1922, an only daughter to our grandmother who had 10 children – although only four lived at a time when child mortality in Dublin was at third-world levels. She was always the centre of attention; lively, social and vivacious. We grew up on stories of our rebel grandmother and a happy childhood in the inner-city tenements before moving out to the new model suburbs of Marino.
Her mother was a seamstress and made her the latest fashions and, to the end, Rose was always stylish; a good coat, a hat and shoes. She became a milliner and worked in Kelletts, a big department store in its day, telling us of the hats she made for the Dawn Beauties like Maureen O’Hara before Maureen’s move to Hollywood.
She married in 1947 to a local; Wally Shaw – a saw-doctor who had to convert to Catholicism to marry her. They had six children and Rose went to work in Aer Lingus as a cook in the late 60s and discovered not just the freedom of earning her living again but the joys of travel which she passed on to us children.
Wally died in 1993 and perhaps life was never the same for her but she enjoyed her life to the full, she loved dancing, singing, loved to party, enjoyed a Bacardi and coke and sadly for her health – smoked. Her smoking left her with emphysema and while she gave it up over 10 years ago it was all too late.
After her 80th birthday – a big gathering of songs and celebrations – she started to suffer from TIAs, or mini strokes. The mini strokes would leave her drained, but gradually she’d come back to herself. In those first two years we never really associated them with dementia but now it is clear each attack could leave her brain damaged, stripping something away, like a cable being disconnected.
Looking back across those initial years it seems families coping with a parent with dementia have little support. Even when my mother could clearly not talk for herself we could still have a situation where a doctor did not want a family member in the room while examining her. “How are you Mrs Shaw?” one would ask. “Fine,” she’d say beaming a big smile. And that would be taken at face value. “She’s not fine,” I’d say, “that’s just a word – a habit of politeness. She needs help.”
Gradually everything that my mother loved to do was stripped away from her. The woman who loved to chat, who enjoyed the company of friends and family, was forced into silence. Her words froze in her head until “€10”, a log-jammed phrase where her language got stuck, like a needle in a groove, was the only thing that came out.
She had loved to travel; to shop for bargains; to go to bingo with her friends; to party; to look after her many grandchildren and to chat with neighbours – all that was gone, gradually pulled from her grasp.
By the end of the initial two years, not long after her 82nd birthday, as we struggled with her wish to be independent and her increasing inability to manage it, the decision was taken from us when one day the police brought her home after finding her wandering on the motorway, lost and confused trying to find my sister’s house. After that she could never be alone.
For five years we struggled to care for her in the family home. In the fourth year respite care had become available every couple of months. She remained smiling, laughing, and gentle-mannered but gradually she lost the ability to do anything for herself – and, just like many other dementia sufferers, she needed someone with her all the time.
Just after her 85th birthday – and a fall, or probably another mini stroke, on the stairs at home – we were lucky to get her a place in a new centre, Anam Cara, which had just opened its doors in Glasnevin, beside DCU, near her home in Whitehall.
Many of the respite centres she had had access to were run by wonderful people, but were quite institutional in their style with old dormitory-like bedrooms, no privacy, and large, impersonal canteens and big open sitting rooms which seemed to emphasise containing dementia patients rather than anything else.
We were lucky to have them but most made your heart fall when you left her there. You knew she was safe but you longed for something else – where she could be remembered for who she really was – for the woman still inside her.
Anam Cara is different. Each person has his or her own room and a little glass frame outside the door allows you to create a memory box with photos and personalise their room. You furnish it for them; add their photos and pictures, so that it’s a home rather than an institutional place.
My mother had all her things around her and her own bed linen and cushions. It was her little apartment from day one to the last. What is also different is that Anam Cara is not a nursing home – there are no nurses or doctors – the staff are non-medical staff trained to support and care for the elderly – and, in this case, those with dementia.
It’s one of two high-end centres run by Fold Ireland, an Non-Governmental Organisation (NGO) supported and funded by the HSE, which believe in living with dignity and respect for the elderly.
The beautifully designed building, which has two floors, is located in the heart of Glasnevin, and will be finally launched this Friday. The top floor has apartment living with care for frail, elderly people without dementia while the bottom floor provides secure care for those with Alzheimer’s and dementia. Each apartment has its own street and its own family-sized kitchen and dining area.
Sofas and armchairs are plotted around the circular building allowing people to walk and walk without hitting the full stop of a wall. The bright atrium with sofas hosts parties, bingo and get-togethers, there’s a TV room, a games room and a day-room for art classes.
It feels like a home and the staff work to make people feel loved and connected to their new home despite the sometimes distressing stages of their illness.
In the Republic more than 50,000 people are believed to suffer from dementia and, after 80, one in 10 people will develop dementia symptoms so the scale of our need is growing all the time yet little public attention is focused on the disease, its treatment, or the challenges it presents to us as a society.
Rose lived at Anam Cara relatively contentedly until her death on February 10th. She went to art classes, played games, enjoyed the karaoke sessions with the staff who carefully marked every celebration in the calendar from Mother’s Day, Easter, Halloween and Christmas, decorating the centre and hosting a singsong party. The door was always open to family and friends to become part of the community.
In the end when her words escaped her, the only way for her to communicate was through song – and the fragments of old lyrics, from family songs, which she could still sing out, delighted to hear her own voice again.
We would hold her hand and sing old favourites like You Are My Sunshineor My Bonny Lies Over the Oceanand her lips would begin to move, the words slipping out in her now-thin voice, her face beaming when she got to the words "I love you". We'd clap at the end and start again.
The day after her funeral my brother David and I cleared out her room. It was Saturday, February 14th, St Valentine’s Day. The doorway was covered in red paper hearts cut out by the staff, and a major party was under way with music, dancing, food and drink. We left them Rose’s favourite CDs, Dean Martin and Frank Sinatra, knowing she would have loved it and loved the idea that the party goes on.
Her thanks, and ours, to all the staff of Anam Cara – may their philosophy of living with dignity and respect in our old age flourish and grow.
More details at Fold Ireland website foldireland.ie
If you have had a health experience – good or bad – that you would like to talk about, contact healthsupplement@irishtimes.com