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Living with dementia – a carer’s journey:
8. Residential care (part two)

The management at the aged care facility wanted to send Stuart to hospital to trial different doses of antipsychotic medication for his behavioural issues. On August 18, 2021, Stuart was admitted to St George Hospital, ultimately for eight days, while the medication was adjusted.

Hospital staff had difficulties with his personal care because of his aggression, so I continued to attend to him, although other visitors were not allowed at the hospital because of Covid.

After Stuart returned to the facility, staff still couldn’t handle his behaviours and continued to contact me to attend to him whenever he was soiled. It was unacceptable and an unsustainable situation that placed me under a huge amount of strain.

Battling with my depression, counselling with my psychologist helped me change my mindset. I was taught to think that I was role modelling for staff how to get the best out of Stuart, so they could better handle him. When I got called in, I should think that I am willing to help. Think positive! My turning point was when I accepted that attending to Stuart’s personal care was something I needed to do for him to maintain his dignity. My changed mindset in turn changed my mood. Being able to see the positive side is not easy and takes a long time to do, but when you can, it’s healthier than feeling sad and depressed.

I gradually learned that the grief comes in and out like the tide. It makes no sense to try and swim against it. It’s easier on the mind and body to swim with it.

The facility was in lockdown a number of times during the pandemic. From December 29, 2021, they were in lockdown for a particularly long period.

“The soul would have no rainbow if the eyes had no tears,” says Nancy Kriseman in The Mindful Caregiver. I cried every day, not being able to see Stuart or do anything for him – especially when he himself contracted Covid. He was in isolation in his room for three long weeks.

Finally, on January 21, 2022, Stuart had medical clearance. I was able to see him at long last, the day I will never forget for the rest of my life.

He looked frail. He had lost significant weight, his face was pale with a protruding chin and caved-in cheeks. He was unshaven, his hair long and messy, his fingernails long and dirty with faeces. His feet and legs were swollen up to the thighs, due to the long isolation sitting in his room without movement. He was an English gentleman looking like a homeless man. My heart sank the moment I saw him.

He was soiled when I arrived and had severe incontinence rash on his bottom. It hurt me so much to see the state he was in. I showered and shaved him, trimmed his hair, cut his fingernails. I had to buy shoes two sizes bigger for his swollen feet. He went on Lasix medication for three months to remove the fluids in his lower limbs, he was in so much discomfort.

Prior to visiting Stuart, I was told that he was looking well. When I saw Stuart, I thought that someone had to be blindfolded to tell me that he was well. The result of Covid and the lockdowns did so much damage to so many people at all levels.

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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 7: Residential care (part one)

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