Regret and guilt: Merv Gillies’ experiences with dementia

Still grieving: Merv Gillies never sought counselling or help for himself. “In hindsight perhaps I should have. Because I’m still grieving for Mum and Dad.” Merv treasures the photo of his parents, Neil and Rosanna.

Still grieving: Merv Gillies never sought counselling or help for himself. “In hindsight perhaps I should have. Because I’m still grieving for Mum and Dad.” Merv treasures the photo of his parents, Neil and Rosanna.

Merv Gillies’ story is one of deeply felt regrets and guilt, perceived broken trust and broken promises, chaos and heartbreaking distress. But above all, it is a story of love.

Merv relates, in his own words, his experiences of being a carer to both of his parents, who were diagnosed with dementia within a month of each other.

I was first introduced to the world of dementia at a young age when my maternal grandmother suffered from this insidious disease and was cared for by my mother until her worsening condition required her entry into a nursing home. Memory of degradation and dehumanising of this poor lady by others at this home, due to her medical condition, stays with me to this day.

My second introduction to dementia was when both my parents were diagnosed within a month of each other.

As a result of my grandmother’s experience and witnessing the profound effect it had on my family, I made a promise to my parents that they would not have to suffer the same indignities in their twilight years. Unfortunately it was a promise I was not able to keep.

For the past 19 years my wife and I have lived on a small farm at Firefly, and whilst living in a regional/rural location without personal issues you are blissfully unaware of the ramifications of living beyond a five to 10 kilometre radius from a regional centre. Until crunch time.

When my parents were diagnosed with dementia they resided within the Sutherland Shire in Sydney and had done so for over 40 years. They knew the area backwards, had friends, family, doctors and shopping centres close by, but obtaining a diagnosis was extremely difficult.

I had a suspicion something wasn’t right and when I spoke to the family GP about my concerns he said, “Your Dad’s my mate, I can’t tell him he’s losing his mind!” 

After further consultation with other doctors, diagnosis was confirmed.

After my parents’ diagnoses their world and mine was thrown into chaos. Within a very short time Dad had his driving licence cancelled under very trying circumstances and Mum was hospitalised, where she too was diagnosed with dementia. She was also diagnosed with non-Hodgkins lymphoma at the same time. I left the farm and moved into their house to care for them and to try and get some semblance of order into their lives. 

After several months of not achieving too much in the way of services and home help, Mum and Dad left their home and moved in with my wife and myself. I might add that some services were available in Sydney at that time. It was the opposition from my parents to accept these services, the plethora of confusing information handed out at the time diagnoses and the uncertainty of what to do that was the stumbling block. Another very important issue was the fact that my parents did not accept the diagnoses.

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Not long after Mum and Dad moved to the farm my mother-in-law suffered a stroke with complications including a broken hip and arm. It was then discovered she also had early stage dementia. My wife returned to Sydney and stayed for many years caring for her mother which left my parents in my tenuous care. 

Of course, from then on farm stuff went out the window due to Dad’s wandering, strange toiletry habits and existing on several hours sleep per day. For me, sleep deprivation was a major issue and I would often awake with Dad’s face millimetres from mine asking who I was and where was he.

The straw that almost broke the camel’s back was when Dad rang 000 at 3am one day and informed the operator that he had been kidnapped. That was an interesting few hours.

During my caring role I was faced with many contentious issues regarding medical care, home care, shopping and importantly, respite. My GP was marvellous but as there was only one local geriatrician at that time, appointments were hard to come by and services were not available for home respite due to the tyranny of distance.

Life was hard enough for my parents and after almost 60 years of marriage the last thing they needed was more confusion and loneliness.

When I asked for live-in respite from the only place offering that service I was told that my parents would have to separate and stay in different areas of the facility with no contact and a high brick wall between them. This was not acceptable. Life was hard enough for my parents and after almost 60 years of marriage the last thing they needed was more confusion and loneliness.

Day respite in Taree was available for several hours on certain days, but that meant rising early, breakfast, bathing, dressing, getting in the car, driving 50 kilometres and then exhaustion before respite even started. Sometimes it is hard enough on your own to do these things, but with two people with dementia it is impossible. 

On the rare occasions I could take my parents for coffee or to the shops, I encountered a complete lack of awareness regarding dementia and the behavioral issues surrounding the disease. Shop assistants did not understand why my Dad would leave the shop without paying or my Mum could not find her purse even though it was in her hand.

Then of course was the use of public toilets. That’s a whole story in itself. 

One of the difficult aspects of caring for my mother was the fact that she was my mother. Showering, toileting, dressing both morning and evening not only was embarrassing for me, but I’m sure also for her.

Shopping was also difficult as I had to rely on a neighbour to stay with my parents. This invariably caused a problem because in my parents’ eyes, even though it was the same neighbour each time, they didn’t remember who she was and there was a stranger in the house.

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During the latter stage of caring I encountered problems with the emergency department and acute care, with the use of psychotropic medications and restraints, not only in a hospital setting abut also in residential aged care facilities. I am not in any way demeaning overworked health care staff, it is the system they work under that is letting people down.

Rural living is wonderful until you contract an acute illness, especially dementia, because you cannot see dementia and most people don’t understand the disease or the ramifications. The person standing in front of you appears perfectly normal.

Services have to improve radically for people with dementia and their carers. In rural and remote areas there is still limited choice for services and distance plays a large part in the accessibility and timeliness of these services. 

Unfortunately as the years passed it became increasingly harder for me to adequately care for my parents and I knew that I would soon have to make one of the most distressing and difficult decisions of my life. I discussed my thoughts with Mum and Dad and was met with anger and confusion. How could I contemplate such a thought when there was nothing wrong with them!

Throughout our lives my parents and I maintained an honest, truthful and trusting relationship but the day I left Dad in the full time care of strangers I felt that I had broken that trust.

Throughout our lives my parents and I maintained an honest, truthful and trusting relationship but the day I left Dad in the full time care of strangers I felt that I had broken that trust. I also lied to my father. I told him he was in a hospital and had to stay for a couple of weeks until he got better. I should not have done that. Dad had the right to know and I should have been man enough to tell him. 

About five months after Dad died, Mum, who was still being cared for at home, became ill and was conveyed to a local hospital. Within four days of being admitted and with no definitive diagnosis as to what her condition was, Mum lost the ability to talk, walk and to feed herself. I had no choice but to place Mum in care.

In hindsight, moving to my home was the wrong decision I made for my parents. I realised too late that I had removed them from their comfort zone, friends, in fact their whole way of life as they knew it. I also realised too late that the isolation was not beneficial to their mental health and wellbeing. There was no meaning, purpose or value left in their lives. Again in hindsight I feel as though I only gave them unhappiness for their final years.

Caring for my parents was both humbling and rewarding. I was once asked a question relating to my caring role and whether I would do it all again. If I had my time over I would certainly approach the role differently, but would I do it again? In a heartbeat.

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