My earliest memories revolve around my grandmother, or my nani, as I called her. My mum returned to work when I was 8 months old, and resistant to a babysitter, my nani took on the role of looking after me full time. To say our connection grew stronger, even when I thought she could no longer recognise me, is an understatement.
I can remember like it was yesterday, every outline on her face, the way her hands felt, the way she would hold me close to sleep and pray with me to put me to bed. Every day she would be waiting outside my school till I was 10 years old, till she became ill. My nani would bring me fresh cooked food to eat in the car on the way home, despite only living 5 minutes away… and I would run into her arms and cry when she left me after putting me to sleep.
The precise day she became sick, I can’t remember, perhaps I have blocked the pain out. I do remember being 10, my nani moving in with us and me thinking it was the best day of my life. What I didn’t realise, what my family didn’t realise, would be the painful acknowledgment for the next 11 years, that someone who held our family together, like a central pillar, would soon disappear. My nani lived in the room next to mine, every night I would want to run and hug her and sleep next to her, but she stopped recognising me, became aggressive, empty. I would look into her eyes, and beg for her to know me.
“I kept talking to her like she understood, remind her of her past, tell her stories, calm her when she became aggressive and agitated.
I put my nani’s favourite music on, the music she used to dance to herself when she was younger. I would dance for her, and try and make her laugh, just to catch a fleeting glimpse of happiness from her.”
But, it wouldn’t happen. I, along with my mum and dad, became her carers in every sense. I cleaned her, fed her, changed her, just like she had done for me when I was a baby. We did everything in our power to slow down whatever was happening to her. I kept talking to her like she understood, remind her of her past, tell her stories, calm her when she became aggressive and agitated. I put my nani’s favourite music on, the music she used to dance to herself when she was younger. I would dance for her, and try and make her laugh, just to catch a fleeting glimpse of happiness from her.
I saw pain in her eyes and everyday it would break me and everyday it just kept getting worse. My nani was prescribed antipsychotic drugs for her dementia symptoms. Something often given to sedate and blunt behaviours in those with dementia. At the time, we trusted this was the right thing to do, with little research being done into the true serious side effects of this. What resulted left my family heart broken. My nani became paralysed, she barely moved, she recognised nothing.
“Your loved one living with dementia knows you.
They may not be able to show you, but I promise you, be patient and love with all your heart. They know you are there.”
What kept me and my family strong and together for my nani, were the moments we could capture when she smiled, or spoke to us, like she knew us. We looked after her 24/7 with the help of carers, the best way we could. The pain and suffering she experienced, we felt every second of it. That feeling of helplessness she felt, we felt also. As a family caring for someone with dementia, there is little you can do, but support, love and be patient with your loved one. I would not take back a single day I cared for her, I was only giving back that beautiful love she had given to bring me up.
The day she passed away, she was in my arms, I lay down next to her on her bed, and held her for the last time. I looked into her eyes and told her how her suffering would not be in vain. My nani had tears in her eyes as she took her last breath, and I knew she had recognised me and all my family all along. She had been there all along, but she couldn’t show it the way she wanted to.
I am writing this story to let everyone know who is going through this, that you are not alone. Your loved one living with dementia, knows you. They feel helpless, vulnerable and confused. They may not be able to show you, but I promise you, be patient and love with all your heart. They know you are there.