David's story: Keeping it together after a dementia diagnosis

The early signs of dementia were easy to miss or explain away as a normal aging process. We just didn’t make the connection between seemingly isolated incidents. But once there was a diagnosis, the almost immediate physical deterioration of my father and grandfather was quite striking and family life was suddenly and severely disrupted.

*Identities have been changed to protect privacy

My father was 75 years old when an injury landed him in hospital and doctors diagnosed dementia. He was smart, well-educated and although he could no longer calculate simple maths problems, he was still doing the crossword so we put the loss of some cognitive function down to just getting old.

There were other signs though. My father was living an independent life with the support of daily carers, but he developed extreme mood swings and started to accuse the carers of theft. He moved closer to the family so we could keep a better eye on him, but the mood disturbances became increasingly pronounced and really difficult to handle.

He had his driving licence taken away, which was not only an administrative nightmare but a lightning rod for managing his money. My father was a conservative, private man and we had scant information on financial provisions he’d made for retirement or any age-related infirmities that might need care or a move to a care home.

The hospital admission and subsequent dementia diagnosis left everyone stunned. It’s impossible to be objective and making decisions about sourcing care was overshadowed by the emotional turmoil. Even as my father ‘disappeared’ there were moments of lucidity and we were left wondering if he was trapped inside his mind or if he had really gone.

Once there was a diagnosis, the almost immediate physical deterioration of my father and grandfather was quite striking and family life was suddenly and severely disrupted

Within a year of my father passing, my grandfather was diagnosed with a very aggressive type of dementia. It was heartbreaking. He was a Second World War veteran and financial wizard living a full and rich life. Although I started to notice some odd behaviour, he was still gregarious and had developed some very strong coping mechanisms to cover up the symptoms.

He asked to train me in understanding how some of his finances worked, but I eventually realised this was a pretext for me to audit his calculations and decisions. He asked a lot more questions, which he used to confirm the chronology of events. He switched hobbies and stopped doing the crossword to take up gardening.

The red flag was a bizarre decision to buy a property overseas. We realised something was wrong and started to talk about it. Again, as soon as there was a dementia diagnosis all hell seemed to break loose and he rapidly deteriorated. He suffered from severe mood disturbances, lost recognition of his wife and children while his mind raced backwards in time.

His stopped processing information and became trapped in a world that no longer existed, believing Berlin was still divided by a wall and horrified at the prospect of East and West Germany now being reunified. In some ways his mind was still intact, as he could quote intricate details from spreadsheets and paperwork, but he couldn’t remember who I was.

Not long after my grandfather passed away, one of his sons (my uncle) was diagnosed with early onset dementia. He was 63. My grandmother is in her 90s, but she is smarter than most people half her age and really switched onto the Digital Age. Now she has to watch her son deteriorate, as his wife and children retreat from their outward lives to care for him.

I have spent many hours looking at how the loss of a person’s cognitive abilities impact on those who share intimate memories and experiences with their loved one. Once that person loses their memories, we lose access to that relationship and memories of ourselves. Once they are gone, we have irretrievably lost a part of ourselves.