While dementia extinguished my grandfather's memories, the losses also eased his pain

Arabnews24.ca:Tuesday 7 February 2023 10:47 AM: This First Person article is written by Julia Dima, a first-generation Romanian-Canadian queer person who lives in Regina and works in communications for non-profits. For more information about First Person stories, see the FAQ.

I was just a teenager, distracted by grades and boys, when my grandfather was diagnosed with vascular dementia. 

I was not prepared for who I would become in Dumitru's final years: his caregiver, his nurse and, with his lapses in memory, his daughter on some days and a stranger on others. Seldom myself.

There were hard days, tears, feelings of failure and the continued grief of watching his mind deteriorate. But there were also moments of great joy and happiness.

Vascular dementia is characterized by changes in memory and cognition due to the flows of blood and oxygen to the brain being restricted. It often involves many small strokes that cause cognitive changes. I imagined it like a room full of light bulbs that go out sporadically. Each time a bulb faded, a part of him changed. The unpredictability meant navigating uncertainty in each interaction.

A smiling elderly man sitting in a chair while holding a black and white cat.
Julia Dimu says they learned a lot as a caregiver for their grandfather Dumitru, who is pictured holding a cat. (Submitted by Julia Dima)

My grandmother navigated the hardest days of his diagnosis, doing her best to care for him in their home. That journey led her to absolute burnout.

The next step was long-term care.

His needs were far beyond what a tired and underpaid care aide —  even one genuinely doing their best —  could provide. This meant that my amazing mother and I had to step up our patient advocacy immensely to ensure he received quality care. It meant long daily visits filled with feeding, medicating, cleaning, assessment, and communication with his care team.

There were hardships, tears, fear, sleepless nights and feelings of utter failure. But there were also beautiful moments.

My grandpa was a hurt man hardened by trauma, abuse, depression and state violence, having been imprisoned by the communist regime of Romania in the 1950s for acts of political protest.

The nice thing was that some of those light bulbs in his mind that went out were the ones burning hottest and most painful. When they went out, they cooled and things became easier for him. 

He began to find joy in small things like a laughing child or an enterprising squirrel searching for its next meal. Without those pesky frontal cortex inhibitions, his humour flourished, and we laughed so much. I learned to embrace every happy moment like a cactus in the desert absorbs every drop of rain.

It has now been five years since he passed away. In his final seconds, I kissed his forehead and told him I loved him.

The experience of being his caregiver taught me more than I ever thought I'd have to learn.

It taught me that paradigms are breakable, and that everything you thought you knew can shatter in a moment. It taught me that nothing matters as much as I think it does.

An older man, who is eating, and a younger person sit on a bench.
Julia Dimu, right, says she now appreciates the positive things that came from being a caregiver for her grandfather, Dumitru, who had vascular dementia. (Submitted by Julia Dima)

My easiest moments with my grandpa were those where I allowed his reality space to exist. For much of his end years, he was convinced his mom was alive and frequently asked when we would see her. Insisting on her death would not have made anyone happy. Assuring him we'd be visiting in the spring brought peace.

I worked to ask myself — not just with him, but in all my interactions  — is it better to be right or to be kind? The answer was always obvious.

Repeated questions ceased to feel like an inconvenience and waste. It allowed me to slow down and appreciate our time together. What was I in a rush for, anyhow?

The lessons he taught me stick with me years later and they inform my choices beyond the lens of dementia. Every single person you encounter could use some compassion and patience. Every difficult experience is an opportunity to ask yourself what truly matters in the grand scope of it all.

In these last five years, as I've nurtured a broken heart, I find myself grateful for the diagnosis that brought me dread 15 years ago.

Thank you, Grandpa, for this lesson. 

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