Irene!

My beautiful Grandma. Really, she was my second mum. She was Australian born with Irish heritage. She held a range of jobs, from managing farms to retail, but the majority of her career was spent as an EN. When my parents separated, she moved into our home from Sunday to Wednesday every week to help my dad raise us. She ensured all our uniforms were washed and ironed, and the house was tidy. She would help with school drop off and pick up, support us at school events, and made sure we ate meat and vegetables every night. She was well known for her almost brick sized lamingtons that were often in the freezer (the best way to have them), her jam biscuits, rissoles, and Jack-Arse-Knockers. (I only learnt in adulthood that not everyone knows what a Jack-Arse-Knocker is. To solve your curiosity, it’s like an Anzac Biscuit).  What she could make out of three ingredients astounded me.

My brother and I first started to notice the little things: telling the same stories over again, forgetting names and faces, the inability to use appliances she had used a thousand times. Burning the ironing, a fear of driving, the Jack-arse-knockers having a face twisting amount of baking soda in them. I was devastated when I saw her handwriting deteriorate to the point she couldn’t write anymore. She had the most beautiful handwriting. And whilst we laugh about it now, the time my partner had dinner with grandma and was excited to eat her rissoles, only to have a strong taste of washing liquid through the entire batch. It stings to my core that I never got her recipe. I have tried but cannot recreate it.

I now believe that she had been suffering from the onset of dementia for a decade or more before then. I understand firsthand wanting to get her help, wanting to keep her in her home, and the overarching denial that there was anything wrong. It is a complex landscape. When her wandering got too much, my beautiful dad moved in with her. You could never tell her why, but she was happy to have her son’s company.

Eventually grandma was placed in an aged care home, in a secure DSU with a code in and code out. We would visit and she would plead to go home. When it was time to leave, we had to close the door against her to stop her getting out. She would cry and scream through the little portal window. She was terrified. Once that door was closed, we had to turn our backs and walk away, hearing her screams. It was heartbreaking. I feel that guilt, even now. Even as a grandchild who had no say in the process. I remind myself that things were different then.

For me, dementia meant loss. The loss of my grandma as I knew her.

It wasn’t until well after she passed, and when I started working in aged care in 2019 that I experienced the other side of things. My new manager arranged for me to visit a fifty-bed, secure dementia-exclusive facility one afternoon at 4:30pm. Those who know, know. There have been huge improvements to the living conditions for residents. It was still confronting, but it opened my eyes to the roles that individuals play in residents’ lives. It took me back to crying after leaving my grandma’s facility, seeing her terrified face as I walked away.  But I now know, as I drove away and my tears dried, there was likely an AIN, EN or RN calming grandma down.  They would have been making her a cup of tea, putting on her music, taking her for a walk, all to distract her.

Today, I am lucky enough to speak with and work alongside people every day that are making a positive impact in the lives of those living with dementia and their loved ones. Next week is Dementia Action Week, and it got me reflecting on what more I can do, and what the community can do as a whole.

There are some wonderful resources out there.

I encourage you get on the Dementia Australia website and watch How can the community be more dementia friendly This video has suggestions directly from those living with Dementia. It boils down to patience, inclusion, understanding and kindness.