It’s impossible to pinpoint the moment my father began to suffer from dementia. Nobody in the family questioned any momentary lapses of memory from time to time and even when these became more frequent, I don’t think any of us really understood the significance of what was happening. Certainly, that word dementia was far from our thoughts at that stage.
When dad retired, he and mum had gone to live in a small Fermanagh village close to where dad was brought up, the youngest in a family of ten children. He had a great love of the countryside and took delight in taking walks with his collie dog Daisy, happily passing the time of day with anyone who had a mind to.
Fermanagh was often wet and cold, but he was content to return to his roots. It was his idea of what a retirement should be – living in a place he loved, with someone he loved, and having the time to enjoy it. Sadly, his contentment was short lived.
A dementia diagnosis
The first time I heard the word dementia mentioned in relation to my father was when he was hospitalised after a TIA (Transient Ischaemic Attack). As a lay person I was unfamiliar with the medical jargon but quickly realised that dad had suffered a mini stroke. He was to suffer more in the course of his illness. It seemed the problem stemmed from the carotid artery being ‘furred up’ and restricting the blood supply to the brain. The neurologist told me that aside from this, my dad’s brain was shrinking and there was little they could do about it. Then that word – dementia.
People joke about it. Remarks about dotty old aunts, going cuckoo and being demented are all commonplace. It’s easy to mock something when it doesn’t affect you personally. I don’t find it that funny anymore.
When dad returned home from the hospital, he understood the explanations that had been given to him by the medical profession. Neither he, nor us, had any idea about how the disease would progress. Mum and dad had been married for nearly 50 years and had always had a loving relationship built on mutual trust and respect. I can’t recall ever witnessing them having an argument.
But gradually, you could see that mum was doing that little bit more for dad and he was becoming that bit more reliant on her. You could tell that the balance of their relationship was changing.
Coping with dementia
I had always found in my own life that during a crisis I coped better if I educated myself about the matter in hand. When I was diagnosed with cancer, I read every available book on the subject, and it helped me enormously during and after my treatment. It was no different with my father’s illness. I learned, surprisingly, that dementia comes in different forms.
Alzheimer’s is the most well-known but there are others like multi-infarct dementia which is what dad had. Instead of a gradual decline in his health, the illness progressed in a stepwise fashion which, to me anyway, was the cruellest blow of all. With each downward step, dad seemed to have an awareness of what was happening which was tragically the loss of that bright and alert mind of his.
My mum coped so well for so long. Like many carers, she just got on with the job of looking after someone she loved. She never complained, although I am sure there were times when she could easily have given up. But as the months went by and dad’s condition accelerated, the emotional and physical toll on my mother became increasingly obvious.
It soon became impossible for her to cope and decisions had to be made about the future.
With the help of Social Services, dad was accepted into a special unit for Elderly Mentally Infirm patients (EMI) in Lisnaskea. It was the most wonderful caring place where Dad would receive both kindness and compassion in equal measure. The staff in any old people’s home have their work cut out for them and not everyone could do their job. I don’t think I could.
Dad was a genuinely good person all his life and even though he had a disease that affected his mind, he always remained considerate and polite. When I visited him, he would inevitably greet me with a smile and the staff would always remark on how kind and co-operative he was.
The EMI unit itself was a clean, no-frills sort of place which, above all, was a completely safe environment for its residents. In my dad’s simple room with a bed, chair and a few personal items strewn about, I began to realise how little material things really matter. It would have made not one button of difference had the surroundings been plush, extravagant and expensive. What mattered most was the compassion that painted the walls, not the decor.
Gradually, dad began to go further and further away from us. They say that you can tell a lot from someone’s eyes and it’s true because when I looked into my father’s eyes he wasn’t always there anymore. I did not realise it then but now I believe that this was the point I began to grieve for my father, and that feeling of having already lost someone when they are still alive is hard to come to terms with and accept.
Visits were becoming more distressing. I did not enjoy seeing so many other poor souls in the unit living in that same mental prison that had also incarcerated my father.
It was a stressful and difficult time, and I was torn between wanting my father to stay alive and wanting him to pass away so that his suffering would end. It is something that perhaps many people think but do not freely admit. Realistically, I knew that dad had actually been lost to us several years before when senile dementia had first taken its hold upon his mind.
Daddy died several years ago now and I still miss him. But over recent months, witnessing the debacle that occurred in care homes across the country with coronavirus, I’m relieved that he did not survive to experience such injustices and indignities.
Where has our humanity disappeared to when the elderly (with or without dementia) are treated like an afterthought? So many families are suffering and all I can hope is that they can find some kind of comfort in knowing that their departed loved ones are themselves now, at last at peace.
If you are affected by anything in this article, you can access resources from the NHS here.