Confessions of a nobody: A brief thought about life, death and dementia | Charles Scerri

“Should I let him go? When does death become acceptable and fair?” he asked me...

Prof. Charles Scerri, Associate Professor in Dementia Studies

Jimmy* was a good friend to my father and a joyful companion during the weekends when he occasionally came over for lunch. As a retired engineer, his hands could do marvels that the rest of us could only dream of. Living on the same street, I grew up kicking ball with Robert*, his only son, now a well-respected lawyer.

But one day, Jimmy called the police on not finding his beloved Ford Escort which he painstakingly had restored back to its former glory. That beauty became the love of his life following the death of his wife due to cancer. But his car was not stolen. It was parked round the corner.

He simply forgot.

And that is how his journey into Alzheimer’s began. At first it was his sporadic forgetting. On hindsight, Robert knew that something was amiss. A few weeks prior to the car incident, Jimmy was complaining of having a hard time finding his ‘stuff’.

So, Robert decided to take away his car keys and with that, a big chunk of Jimmy’s independence was gone, forever.

Alzheimer’s disease is the most common form of dementia. It is characterised by loss of memory, impairment in communication and decline in activities of daily living. It is a progressive disorder slowly eating away brain cells in parts of the brain that control cognition. It is the betrayal of the mind as it erases who we are.

In the Maltese Islands, there are around 7,300 individuals living with dementia and a further couple of tens of thousands family members caring for them.

It was on a rainy morning last November when Robert called. His father, now having severe dementia, suffered a fall and broke his hip bone. He was rushed to hospital and had surgery. During his recovery, Jimmy was constantly confused. Then, he stopped eating altogether and although inserting a feeding tube was suggested, he wouldn’t have any of that. He made it clear from the start. Prolonging suffering was not on his wish list.

“Should I let him go? When does death become acceptable and fair?” he asked me.

I get such questions quite often and I’m not surprised. Modern-age society often looks at disease as something that needs fixing, unmindful to the fact that we cannot mend all and trying to can end up in destroying the true meaning of life.

People with dementia have priorities besides prolonging their lives and to many, that includes maintaining personhood and avoiding suffering. It’s what Tolstoy’s Ivan Ilyich endeavoured to but that no one, not even his family members, could understand.

Fortunately, Jimmy knew what he wanted and put it all on paper on diagnosis. He desired dignity, respect, self-determination and the best that life could still offer. He did not want to become a nobody.

Having such advanced directives in place helps when decisions about end-of-life need to be taken. They express the values and desires to family members and friends when the person becomes incapable of doing so. It is undoubtedly a challenging topic to discuss, but a necessary one.

Chapeau Jimmy. You lived and died under your own terms.

*Names have been changed to maintain confidentiality