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Living with dementia – a carer’s journey:
3. Commitment

In July 2018 I resigned from my full-time senior management position in the department of NSW Health Pathology to become a committed carer for my husband, Stuart, who lives with dementia. To maintain my mental health, I decided to work as a casual medical interpreter in hospitals and part-time administration assistant for a Uniting Church congregation.

On September 21, 2018, we married after nearly 40 years of a fairy-tale love story. I proposed to Stuart after the diagnosis and made my commitment to go through this journey with him. Stuart was emotional and felt honoured.

I was committed to maintaining our lifestyle for as long as possible and engaging Stuart in many meaningful activities to maintain his quality of life, particularly music and arts.

Global travel had been our lifestyle and we continued to travel for as long as we could: to South Africa in 2018; and Melbourne, Shanghai and New Zealand in 2019.

I researched programs specifically designed for people living with dementia. During 2018-2020, Stuart participated in the monthly “Art and Dementia” program of the Art Gallery of NSW, the Museum of Contemporary Art’s “Artful Program” two hours a week for six weeks, and “Rising Stars” at the Sydney Conservatorium of Music for one hour on Saturdays. We both enjoyed the programs very much and Stuart thoroughly immersed himself in the music. We also went monthly to the “Word of Music Art and Poem Program” at Royal Prince Alfred Hospital and the “Café Connect” support group with Dementia Australia, and attended Homeside music therapy run by the Melbourne Conservatorium of Music, Faculty of Fine Arts & Music. Stuart had been a great photographer on our travels, and I wanted him to continue to maintain his skills and to use some artistic skills in his photography, so he also took part in an eight-week program on “Artistic Photography” as part of HammondCare’s Positive Ageing program.

From July 2018, Stuart joined the three times-weekly 3 Bridges “Meeting Centre Support Program” (MCSP) at Carss Park, which he enjoyed greatly.

Sadly, the programs and activities all had to stop because of the Covid-19 pandemic. MCSP offered some home visits, but one-on-one activities didn’t work for Stuart; he was not interested and lacked focus. Later in 2020, MCSP restarted the program in a smaller group capacity, but Stuart was not accepted as he started to have some behavioural issues. I managed to find two other smaller groups of dementia support, but they didn’t work out either. Stuart started to have more symptoms, especially the psychotic attacks from June 2020 for a number of months.

The impact on Stuart due to lack of meaningful activities, social interaction and mental stimulation is beyond words to describe. Deterioration became obvious and rapid.

At the same time caring for Stuart became more challenging for me.

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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 2: Learning and understanding

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