Living with dementia – a carer’s journey:
11. End of journey

My darling Stuart passed away peacefully on August 27, 2024, the saddest day of my life. The funeral service was a beautiful tribute to his well lived life, thanks to funeral director Stephanie Kelly of www.personalfarewells.com.au, who delivered the service to perfection.

I would like to thank Professor Smerdely for his patience, guidance and support throughout this journey of six years from the diagnosis till the end, who also helped me overcome challenges with his profound clinical knowledge. I will be forever grateful. To this day I remember what he said to me: “Dementia is a terrible beast we all struggle with. It will win in the end.”

Being a partner on the journey that is Alzheimer’s requires more than merely watching others “treat” the illness. A partner must also become part of their loved one’s nonpharmacological treatment. Changing yourself is part of the treatment, as I did with Stuart along the way. I witnessed his deterioration to the finest details, his body language and facial expressions.

Only by spending a significant amount of time with him was I able to notice all those changes and to take immediate action when I noticed the signs of a stroke, unusual lethargy when he had an infection and abnormalities after a fall when he fractured his hip. I was therefore able to send Stuart to hospital in a timely manner, which minimised delays with appropriate treatment. My daily care for Stuart played a vital role in his wellness and health. I regularly reminded the staff and RNs to monitor residents for any abnormalities and unusual behaviours, not simply checking their vital signs.

It is impossible for families who visit their loved ones only occasionally to notice those fine details, instead, they only see their deterioration over a period of time. I saw some families complain about why their loved ones declined so much, not understanding that spending quality time with their loved ones is an irreplaceable part of treatment and crucial to their wellbeing.

I advocated fiercely for my husband and the residents for better quality of care, I courageously took on all challenges to maintain my husband’s dignity despite the difficulties. Families play an important part in the partnership with the care facility. Strong advocacy and regular reviews of medications, diet, and general health such as bowel movements are all vital. I worked closely with the RNs, the GP and the geriatrician, and ensured that Stuart was not taking any medications unnecessarily, especially anti-psychotics.

Stuart had hemiarthroplasty surgery after he fractured his hip in late March 2024. I worked closely with the physiotherapists three times a week for my husband’s rehabilitation. Sadly, his improvement slowed after a few weeks and eventually more serious infection took control of his body in late August and he was no longer able to fight the illness.

I am lucky to have so many happy memories that I will cherish forever. I am so proud that we lived a very fulfilled and happy life together and to have been able to continue to give my husband a life of good quality until the very end. I am proud that I was by his side on this journey of six years. He was loved more deeply than most and was in trusted and better care than most. We fought a long battle that in the end we could not win.

My darling Stuart, I wrote your name in the sand, but the waves washed it away, then I wrote it in the sky, but the wind blew it away, so I wrote it in my heart and that’s where it will stay.

Rest in peace my darling husband.

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Throughout 2024 Alicia has shared 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 10: Sleep apnoea – CPAP therapy