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HomeNewsHealthLiving with dementia – a carer’s journey: 9. Residential care (part three)

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

In July 2022, just over a year after Stuart was first admitted, I wrote to the facility service manager about Stuart’s personal care.

It wasn’t sustainable for me to continue to attend to Stuart’s personal care every day. I documented in 165 days, the total number of showers and washes was 188, 61 of which I managed alone without staff, 110 with staff, and only 17 times when staff managed without me. It was a lack of duty of care in a residential aged care facility. Would the personal care of residents without family members actively involved be compromised or even deprived? Some staff were reluctant to do Stuart’s personal care, some even declined when they were asked due to his aggression. The management had no strategies whatsoever to address the issues.

Somehow my comments, which I also made in person, quickly got attention. The management arranged for senior staff with extensive experience with residents with behavioural issues to attend to Stuart’s personal care for a few weeks. This was an opportunity to trial strategies, monitor and train other staff.

For the very first time since Stuart had been in care, staff didn’t want me to be in the bathroom with them; they wanted to learn how to approach and handle him. It was a big step forward that after more than 12 months staff finally started to take action.

Gradually they started to shower Stuart more regularly without me. Staff with experience were coaching less experienced ones. Over time, the senior staff became less involved while junior staff were getting more confident by the day.

Staff were advised to call me each time after they had attended to him. It was more effective than antidepressants to know that when I went to see Stuart, he would be already showered and clean, instead of soiled and smelling of faeces.

The days when staff called me at 8am asking me to go to clean Stuart became a thing in the past. My hard work, role modelling and strong advocacy finally had some effect.

For our loved ones to receive quality care, families have to be strong advocates and voice our concerns on their behalf. Unfortunately, many families mistakenly think that their care duties end when they place their loved ones in care, without realising that they continue to play an essential role. In my experience, this also includes optimising medications. I regularly have discussions with the GP and geriatricians to monitor Stuart’s medications and side effects.

To be able to maintain Stuart’s dignity and quality of life gives me inner peace. I made Stuart’s room my second home. In my mind, I don’t think that I am visiting Stuart, instead, I think that I am going home. After all, “home is where the heart is”.

I play Stuart’s favourite music for him as much as I can, which makes him calm and relaxed. Sometimes he taps his foot or hand with the music. To those who are lost in dementia, music can have a power beyond anything else to restore them to themselves.

I worked so hard to get to where we are now. Staff have improved in caring for Stuart over the years, with me modelling for them. They dress him in colour-coordinated clothes after his personal care. He looks nice and smart. The bed is made nicely with pillows and cushions arranged in style; the room looks like a home.

What a transformation! What a great achievement!

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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 8: Residential care (part two)

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