• The writer, Jeremy Cassar (L) with his grandfather Robert Zarb (R).
If you’ve lost a loved one to dementia, you’ll know there’s no good reason such a horrible disease exists.
By
Jeremy Cassar

24 Aug 2016 - 12:22 PM  UPDATED 6 Sep 2016 - 10:58 AM

If you're in need of evidence in support of the idea that life is a sick joke without a punch line, look no further than dementia.

Dementia is the umbrella term for cognitive decline, usually due to ageing, yet can arise due to not only Alzheimer’s (70 percent), but other diseases such as Huntington’s and Parkinson’s. While dementia is comprised of a set of symptoms related to a variety of circumstances, Alzheimer’s on its own is an irreversible condition.

Over a series of heartbreaking years, my maternal grandfather (or as I knew him, Nonno) lost his life to dementia.

Here’s his story in brief…

 

The last man you think would fall to Dementia

Robert Zarb, my Nonno, was an obsessive collector of records, and I’m not talking about vinyl. He and my Nonna’s basement was in-part an oversized filing cabinet stacked with decades worth of notebooks and ledgers. 

He kept meticulous logs of not only every expense and every bit of correspondence he’d ever received, but he also kept accounts of every interaction with service staff. It was his thing. It offered him control over his particular plot in the world.

Over the time that his entire mental framework crumbled, he’d retrieve the same memories from the same places and repeatedly gift us with duplicates that the real Robert Zarb would have known we’d all seen. 

He was reduced to a child

I tear up at the thought of it, but eventually Robert Zarb was in the dementia wing of a Catholic hospice, stealing people’s hand-towels and then handing them out as presents. Unable to properly take care of himself, he required help when using the bathroom otherwise he might end up on the floor, or pocketing the results of the visit.

Next to the dictionary definition of a proud man sits a picture of my Nonno. He was strong and he valued standards. All we could do was hold onto the memory of who he was before the decline, and try our hardest not to let the image of this deteriorating alien linger in the memory.

 

Yet it was almost as if he knew what was happening

One of the most frustrating realities for both my Nonno, as well as for us, is the fact that for much of the decline it was as if he was aware of it, but couldn’t do anything about it.

Often the words hung on the tip of his tongue and watching the process of trying to spit them out was torturous. We’re an emotional family, and I often wonder if we were perhaps a little too impatient in these moments and didn’t create the silence to communicate as much as he was capable. My Nonno cottoned on to the fact we were treating him like a child, and it was obvious he didn’t like it.

It’s difficult, because you want more than anything in the world to help, but the more you do and say, the further the person moves from the present.

 

He was still in there somewhere

Near the end, there was rarely anyone home. Robert Zarb was almost catatonic. Nothing lay behind his eyes.

A few days before he left our earth, I sat with my grandfather, cupping his hand and cutting off the tears. For a brief moment, I swear something return to his eyes, and we just stared at each other for something like fifteen seconds, both nodding our heads.

Perhaps I’ve exaggerated the moment in hindsight, but it felt as if he was in there and I just needed to create the silent atmosphere in case he could return.

After that, I spent an hour near a hospital window blubbering like a newborn. It felt like this was meant to be the last moment I shared with him – a moment of something, as opposed to nothing.

I didn’t go to his bedside during his last breath. My parents, aunt, and all my siblings went on my behalf. I tell myself it’s because I’d said my perfect goodbye, but perhaps it was merely cowardice. Perhaps I wasn’t ready to watch a long-vanishing man finally vanish.

I thank my family for letting our relationship end that way.

 

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