Amanda Nicholls has been working as a Carer Engagement Officer with the VMCH Carer Support program for 11 months. But Amanda knows more than most of us about the ins and outs of being a carer, as her own personal experience has shaped the direction of her career.
In her 30’s Amanda cared for her grandfather who had advanced dementia, and could no longer perform any daily living tasks independently.
Amanda’s grandfather couldn’t walk or stand and was completely incontinent, and required two carers, 24 hours a day in order to remain at home. Due to his dementia, Amanda said he had a good sense of where he was at home (having lived there since his early 30s) but when he was not there, he became confused and anxious.
Amanda said being a carer came with many physical, emotional, and social challenges.
“The lack of sleep was difficult during the times he was unwell and needed overnight monitoring.
“It was impossible to maintain a ‘normal’ social life, even though my friends were caring and supportive. I could never stay out late and have a few drinks, as I needed to be fresh and ready to go early every day. I also didn’t have any days off – it was 7 days a week. I also re-activated an old back injury with the physical demands of his care including hoisting and rolling.”
While it was difficult, Amanda said it was an honour to support an ‘amazing’ man, and to be at his side until the end.
“He was so sweet and funny and these aspects of his personality remained as his dementia and health worsened. I loved taking him down to the shopping village on a nice day, for cappuccinos and his favourite – custard tarts. We also enjoyed the company of his lovely support workers and meals on wheels worker and met some other amazing carers at social outings.”
As part of her role with the Carer Support program, Amanda organises leisure, well-being and educational events and activities for carers registered with the VMCH program.
“We are currently delivering all events and support online due to the pandemic. I also work at building relationships with other organisations and providers. For example, we have partnered with an organisation called YourLink, for a program trial to get older carers using video conferencing and other applications to improve social connections.”
Amanda said that her personal experience has shown her just how individual each person’s journey with dementia is.
“I only learned more in terms of how it impacted my grandfather, rather than about dementia as a whole. For example, I learned how to modify his environment so that it worked for him. This meant changing his bed position so he wasn’t looking at the wallpaper (in which he saw bugs in the patterns) or playing music he enjoyed during his morning and night routine.
“I think we need to give much more weight to the special knowledge a carer has about the care relationship and the needs of their recipient.
“I just hope that our carers feel that they are supported to achieve their full potential, both as individuals and as carers.”