From the day of the diagnosis, my learning as a carer began. I was determined to do everything I could to give Stuart the best possible care, by using all the services, education and dementia-related programs available to support us. My moto was “no stone unturned”. I would never let myself be in a situation of having regrets and wishing I could have done more. I wanted to have inner peace within my heart and soul.
On July 6, 2018, a day after the diagnosis, I started to make enquiries. I contacted Dementia Australia and Carer Gateway to get all the help that I could. Following this, I contacted My Aged Care to request an assessment for Stuart.
By having some knowledge and understanding of dementia, I would be able to provide better care for my husband. The Dementia Advisor at Dementia Australia recommended a number of courses and workshops.
I enrolled in “Understanding Dementia” and “Preventing Dementia” online courses with the University of Tasmania, which I completed in July and October 2018 respectively.
On July 17 Stuart and I attended the “Recently Diagnosed with Dementia” workshop organised by Dementia Australia. The information was very helpful, and Stuart was able to understand most of it. Astonishingly, about 250 people join the dementia population every day. We were also advised to get the legal documents Will, Enduring Guardianship and Power of Attorney in place if we didn’t already have them. It is vital to do them while the person living with dementia (PLWD) is still able to make decisions independently.
On July 24 we saw the solicitor and got the legal documents signed and updated.
I attended further workshops between August 2018 and September 2019: “Effective Communication”, “Nutrition, Mindfulness and Dementia”, “Keeping Love Alive”, “Dementia and Medications”, “Meaningful Activity for PLWD”, “Dementia and Future Planning”, “Managing Emotions” and “Benefits of Physical Exercise for PLWD”.
It was vital for me to learn how to communicate with Stuart effectively, and I also needed to train myself to be patient with him. Commonly in a conversation, 7 per cent of communication is words, 38 per cent is tone and 55 per cent is body language. I learned to engage with Stuart closely when communicating with him.
On September 25, 2018, geriatrician Prof. Smerdely reviewed Stuart and was happy with his condition and commended me for all the activities I had arranged for Stuart.
From October to November 2018, we joined the “Living with Dementia” program run by Dementia Australia, on Wednesdays for seven weeks. This education and support program aims to maximise the health and wellbeing of people living with early-stage dementia and their carers. We met other couples in the group and shared our stories and ups and downs.
My journey is made of “more downs than ups”, as my husband’s dementia deteriorated rapidly and had many challenging behaviours and symptoms.
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Throughout 2024 Alicia plans to share her experiences to support and empower carers and their loved ones. She welcomes your feedback on this column – please comment on Facebook, Instagram or X or email editor@ssh.com.au.
Read part 1: Diagnosis
Read part 3: Commitment
