“MY dad’s path out of life was not straightforward,” says Emily Hurley Wilkinson.
She is sharing the story of her late father, George Hurley, a hard-working, dependable family man from Togher whose diagnosis of mixed dementia shocked and saddened the whole family.
“We first became aware of problems around 2006 when he was aged 67. It was subtle initially and very gradual,” recalls Emily.
“For example, he would put diesel into a petrol tank every so often or repeat himself frequently. He became more disoriented, asking ‘Who’s that?’ or if we were out he’d ask ‘Where’s the toilet?’ and then you’d notice he’d go in a different direction.
“We didn’t make a big deal of it but he became more vague and distant.”
Another warning came at Emily’s son’s Holy Communion when a book was passed around in which relatives and friends were to write notes of happy memories and stories.
“Dad just looked at the page. It was like he just couldn’t write. We wondered was he having an off day and that he did not want to be put on the spot. I had a chat with mum and learned that there were more issues.”
A subsequent blood test showed high calcium levels, associated with the parathyroid gland, which can lead to memory loss.
“He had an operation on the parathyroid gland and we expected to see normal daddy return but it never happened”, says Emily. “He became more agitated; he was waking up in the night thinking he was under threat, and was waking mum. He would get dressed and say he was heading off to work or to see his mother, who of course had died decades ago.
“My brother, who lived at home at the time, practically slept fully clothed so that when dad tried leaving the house he would try to talk him down and get him back to bed, or on failing that go with him to make sure he was safe.”
The HSE was contacted to see if respite could be found for George, initially for just one or two days per week.
“My mother and brother were in an impossible situation. Dad was a physically strong man and it was emotionally stressful,” explains Emily.
Unfortunately, the family was to endure a horrific ordeal when George escaped through a window two days into his spell in respite.
“We got a call to say dad was missing. The Search and Rescue team went searching in a large forest near the respite centre. The night in question was in February and snow had fallen. Several hours later my eldest brother found him there lying scared and cold,” says Emily.
Shortly afterwards, George was admitted to the Acute Mental Health Unit at CUH.
“It was extraordinarily stressful and bizarre to see him in a unit with all different types of people with a whole range of mental health issues,” says Emily. “It was there that we saw an extremely rapid demise in my dad’s overall health and appearance. Within months his weight plummeted, his face was drawn and pale and he had become very unsteady on his feet.
“For someone who was a fantastic person with an immense presence, I can’t fathom it.”
Sometimes, a loved one’s decline can take over our memories but Emily has wonderful recollections of the man her father used to be.
“He was so loving and giving and so modern for a man who grew up in that era — he could iron, cook dinner, stitch and sew. He was a family man; he loved to talk; he was determined, diligent and hard-working. You just knew when dad walked into a room. He had that presence about him; you know… that little something that made him stand out.
“A self-employed painter and decorator for most of his life, dad took enormous pride in his work and developed great friendships with many of his clients throughout the years. He was so professional, he would turn up every morning dressed in a full suit, pop on overalls and approach his work with almost back-breaking precision.
“He brought up seven kids — mum was the home-maker — and was committed to making sure all our needs were met. He was also a born entertainer, known for his renditions of Johnny Cash’s Ring Of Fire and Frankie Lane’s Ghost Riders In The Sky. He was a bit of a legend in that respect. As daddy’s health started to rapidly decline, finding a way to communicate with him was of huge importance. Singing and music was the trick.” By then, George had lost his ability to speak coherently, so when Emily and her family visited they made sure their time was music-filled, as they felt they were directing him to “the part of his brain that was fighting for survival”.
“Regardless of the environment we found ourselves in, with each and every visit, we brought along dad’s favourite playlist of music and got him singing and dancing with us.
“Amazingly, he still managed to remember and sing many of his favourite songs right up to his dying days. Dad was a very social person who loved to share a story and became increasingly agitated and distressed if he sat for long periods of time with nothing to do, which was very much the norm. There was little to no stimulating activities, which left him feeling bored and restless.
“We brought in a small handball to strengthen his reflexes as he’d physically fallen away to nothing and he’d throw it back. We brought in paint as well. We got very creative in an effort to improve his quality of life.”
While Emily is critical of “the system”, she has much praise for the staff they encountered at CUH.
“The ability of staff members should be commended. They gave their support and showed great compassion. They allowed us to sleep there on the floor towards the end. I was so grateful they gave us that time.
“They bonded with him so well — and he changed the dynamic of the unit. He tugged at the hearts of many of them.”
In the midst of all this, however, the family was being told that he would have to be moved on from CUH and unfortunately they could find no suitable nursing home to take him.
“A point raised a number of times by every single nursing homes when we approached them, was that dad’s needs could not be met nor managed without specialist care and support and for which they did not cater,” says Emily.
“We therefore found that dad could not get a place within any home which left him trapped in the system, so to speak. Where I feel let down the most is by the lack of available specialised dementia units.”
Emily points to a cutting-edge elderly care facility in the town of Wheesp, on the outskirts of Amsterdam,where all the residents have dementia and are given the chance to live seemingly normal lives. Dubbed the ‘Dementia Village’, it has its own town square, theatre, garden, and post office. She wishes such a facility existed here.
Her beloved father passed away in CUH on March 29, 2016.
Having had cognitive impairment since 2006, it had been a 10-year journey.
“It saddens me deeply that my dad’s final years were spent zonked out, roaming around in circles in a mental ward unit of a hospital rather than being cared for in a dementia specific unit where he would have experienced a better quality of life," says Emily.
The Alzheimer Society National Tea Day is the organisation’s largest annual fundraising campaign, with almost €8 million raised since the inaugural Tea Day in 1994.
Funds raised provide essential support to the 55,000 people living with dementia in Ireland. All funds raised in your local community stay in your local community.
The number of people with dementia is expected to increase significantly in the coming years; rising to 68,216 people by 2021 and to 132,000 people by 2041.
The Alzheimer Society’s National Helpline is open six days per week on 1800 341 341.
The Alzheimer Society of Ireland runs six-week courses aimed at supporting family members who are caring for loved ones with dementia across Ireland.
There is an upcoming course at the Bessboro Day Centre, Bessboro, Blackrock, Cork on Thursdays from 7pm to 9.30pm, from May 17 to June 21 inclusive. For more information e-mail email@example.com or phone (01) 2073834 or log on to www.alzheimer.ie/Services-Support/Training.aspx