On Friday, October 27th, 2017, my Dad, Séamus McDonagh, was taken off in the back of a squad car, the first and only time in his 72 years he found himself in such an ignominious position.
His destination? The acute psychiatric unit at Galway University Hospital. Another first for a man with no history of mental illness.
His crime? Dementia.
The stress and trauma of being taken by the gardaí to a strange place where he was locked in by strangers and removed from all that was familiar to him was enough to push a vulnerable dementia patient over the edge. Dad walked in to that unit fit and agile for his age.
Less then six dreadful weeks later, he was rushed home in an ambulance, barely making it on time to die in his own home.
Dad's story is particularly harrowing, but he is not alone. All over Ireland, dementia patients are being inappropriately admitted to acute psychiatric units and shunted into nursing homes against their will due to the appalling lack of services to keep people in their own homes and communities.
I signed the involuntary admission form to have my father 'committed' to the psychiatric unit, and the guilt of that will haunt me forever
Our poor father spent the last weeks of his life in an acute mental health facility surrounded by people he thought were trying to kill him. Such was his level of distress that he gave up eating and drinking and refused all medication.
I signed the involuntary admission form to have my father “committed” to the psychiatric unit, and the guilt of that will haunt me forever, despite the assurances of his medical team that there was simply no other safe option for Dad that day.
At that stage, there was barely a trace left of the real Séamus McDonagh. The jolly, eternally young-at-heart Dad who was full of fun and mischief, and who never tired of telling myself and my siblings how much he loved us. The lead singer in a band called The Magnets that packed out Glenina Rugby Club every weekend in his younger years.
In the four years leading to his death, Dad had been slowly, painfully slipping away from us and it was becoming harder for us to remember the person he used to be. Dementia had slowly sucked the life out of him, leaving only a husk of anger and confusion.
When his grandchildren asked why Grandad was always so cross, we had to explain that Grandad’s brain was broken and he couldn’t help it. Sadly, they have no memories of the many hours he spent rocking them as babies, singing to them, rolling around on the floor with them, pushing them proudly in their prams, and telling them over and over how beautiful they were and how much he loved them.
Little by little, Dad was stripped of every bit of dignity and independence he had. His ability to communicate, to manage his finances, to drive, to play golf, to make a cup of tea, to use the remote control.
In her introduction to the National Dementia Strategy published in December 2014, Kathleen Lynch, then Minister for Primary Care, Social Care (Disabilties/Older People) and Mental Health, stated that a key message of the strategy was that "with the right supports, a person with dementia can live well, often for quite a long time".
Sadly, for our Dad, like the vast majority of people with dementia in Ireland, the ‘right supports’ do not exist. The hardest part of Dad’s illness for us as a family was the lack of support to help care for him at home.
Widowed at the age of 57, he lived in his own home in Knocknacarra with my brother and at a later stage, my brother's new wife. He was diagnosed with vascular dementia in 2013. The deterioration in his condition was slow at the start, but in the last couple of years, it began to speed up.
It didn’t help that I lived in Cork and my sister lived in Dublin with our young families, in constant dread of the phone calls from our brother telling us of Dad’s latest crisis.
As Dad spent long hours alone at home while my brother was at work, we had applied for home help hours, which after a delay of over a year, was refused. I rang a local city councillor who happened to know Dad from the golf club and lo and behold, a week later, we got a letter telling us Dad had been granted nine hours home help a week.
Dad was being looked after by the Later Life Psychiatry Team at University Hospital Galway, led by consultant psychiatrist Dr Karena Meehan. While she and her team always went over and above in caring for Dad with very limited resources, at the end of the day we felt very much alone and isolated in battling his dementia.
What we needed was a single point of contact at the end of a phone line 24/7 to provide us with practical support and advice. We received no support for Dad from the local public health nurse despite repeated calls and messages.
Two weeks before Dad’s admission to hospital, he had been staying with me in Cork, mainly to give my brother a break from the stress of living with Dad’s increasingly challenging behaviour as his dementia advanced.
He woke up one morning in my house with no idea where he was, or who I and my family were. At this point, it was clear that Dad would need full-time care going forward and could no longer be left alone for any period of time. During the course of the following week, he became increasingly angry and aggressive.
We looked at the possibility of getting a carer to sit with Dad every day while my brother was in work, but his behaviour was rapidly becoming more challenging. The later life team at UHG agreed that the only option open to us at this point for Dad was a nursing home, something he would have dreaded his whole life.
When I tried to break this news to Dad on the morning of his admission, he became verbally aggressive and when two nurses from his team came to the house, he started to show signs of physical aggression. Their advice was that the only safe option for Dad at that time was admission to the acute psychiatric unit at GUH.
After his admission and as his condition continued to deteriorate, Dad's team explained that his only option now was admission to a specialised Alzheimer's nursing home in Athenry. Everything was happening so quickly. Our hope for a nursing home close to his own home and beloved golf club in a familiar neighbourhood were dashed.
Then on the morning of Monday, November 13th, we were called to a family meeting by Dad’s team at the unit. He remained extremely agitated and had been refusing medication, food and drink. We were informed that he was very unwell and the team were seriously concerned about him.
Dad was dying.
My sister, brother and I sat in shock. How could this have happened? Dad had walked into the unit weeks earlier, an agile 72-year-old. We had never even considered the fact that he wouldn’t walk out again, albeit to a nursing home.
A week later, Dad was gone.
Until the final hour of his life, Dad was distressed and agitated. His was not a peaceful death, the very opposite sadly
It all happened so quickly in the end. He was cared for as well as he could possibly have been cared for in an acute psychiatric unit which is not geared for palliative care.
We had promised Dad that he would not die in hospital, and we managed to keep this promise with minutes to spare. He took his last breath less than five minutes later with his family at his side in his own home.
Until the final hour of his life, Dad was distressed and agitated. His was not a peaceful death, the very opposite sadly. Although the nursing staff at the unit went over and above their duty for Dad and for us, they were not experienced in caring for a dying dementia patient. He was in the wrong place.
We will forever be haunted by the last weeks, days and hours of our father’s life.
Dementia package
1) Hallucinations, tremors, sleep issues
2) My Dad was taken off in a squad car
3) Supports do not exist in this country
4) A shadow we cannot shake off
5) Homecare: practicalities, pitfalls, pluses
6) Daddy, dementia and me
