After watching her live with dementia for 11 years, I'm relieved my mum's dead

SBS Australia

a day ago

Paula Brand cared for her mother in the final years of her life while also taking care of her daughter who has autism and ADHD. Source: Supplied With ageing parents living longer and children not leaving home, what's it like to be stuck in the middle? Watch Insight episode Sandwich Generation live on SBS On Demand . My mother died six months ago. I loved her but by the end, because of the dementia, I didn't like her. Her death was a relief. I'm also a single mother, raising my child who has autism and ADHD . To have some flexibility in my life, I run my own small business. I work six days a week, split shifts. I haven't had a relationship in 10 years. Every single emotion has been flattened. I have been squeezed so much, there's nothing left. My time is squeezed. My patience is squeezed. My love is squeezed.
Caring for my mother on top of caring for my child for the last six years made my life a shit sandwich. I'm not a natural nurturer, so taking on a carer's role with my mother was very difficult. She both created and was positioned in difficult situations that made everything all the harder. She ran away from the aged care centre she was living in and got together with a man who she claims ended up stealing money from her. She also had to endure COVID-19 lockdowns while in aged care .
I visited my mother every fortnight, which doesn't seem much. Though, after coping with her dementia for 11 years — and having the same conversations again and again about her boyfriend — my patience and love thinned. Dementia is hard on family members and "loving trips down memory lane" experiences are very rare. I found mum's aged care centre drab and dreary. It smelled horribly of chemicals, urine and death. When you get one day off a week, it's not the place you want to spend time. You force yourself to visit. To this day, I remember the stench.
My daughter refused to step foot in the door as the smell was too much. In my caring of my mother, I had to also balance and prioritise the needs of my child. As a parent, my job is to keep my vulnerable child safe. Unfortunately, my daughter suffered from consistent bullying for over a year at school. Dealing with my daughter's bullying situation, my mum dying, being a single mum and running a business while in my late 50s, was overwhelming. In the end, we can all only do the best we can do, but was I loving enough to my mother? Probably not. Some people talk about this glorious moment of seeing their loved one's last breath while holding their hand. But I wasn't with my mum when she died. I decided not to be. I had to make the choice of who needs me more. I hadn't really seen my daughter for three days and she needed me. I don't think anyone should die alone but I had said my goodbyes to my mother. Though, sometimes I do find myself hoping she didn't miss me not being there.
Dementia is the longest death, and in my mother's case, it was drawn out over 11 years. It was exhausting, depressing, lonely and extremely frustrating. I was her guardian for health, accommodation, medication. Every single part of her life, I was responsible. Because of that, I never felt like a daughter again. My role as her daughter ended years ago and I grieved it then.
Seeing my mother's health and mind deteriorate over a decade made me realise I will not be going into aged care. If I do end up getting dementia, for me, the decision to continue living or not, will be a very difficult one. I don't think I would choose to have that life. I would not want to be a burden for my daughter, who is going to struggle through life anyway.
But for now, the burden has been lifted and I'm in an era of freedom. I bought a campervan and have taken my daughter on road trips, and we've gone on overseas holidays to Bali and Thailand. We are reconnecting after I had to have split focus, taking care of my dying mother. It may sound horrible, but now that my mum is dead, I finally — at the age of 56 — get to have a life. Readers seeking confidential information and support on dementia can contact the National Dementia Helpline on 1800 100 500. Carer Gateway is an Australian government program providing free services and support for carers and can be contacted on 1800 422 737.