A year after the dementia diagnosis, Stuart was reasonably stable, but his cognition and memory started to deteriorate. He wasn’t able to put the rubbish in the colour coded bins, flooded the bathroom by leaving the tap on, misplaced house keys.
Stuart started showing signs of depression in 2020. From time to time, he said things like: “Just kill me, give me some poison or pills and let me die.” “I am useless.” He often said that he didn’t know what he was doing. Sometimes he said, “Please help me.” I always praised, encouraged and supported him. Occasionally he was hallucinating, seeing other people in the house, asking me what they were doing. He said to me, “Do you have a car? People might steal the car.” He didn’t know who I was or where I lived. He accused me of belittling and ridiculing him. He called me a “cheat”. He was in the phase of understanding his diminishing abilities but not knowing why. On September 28, 2020, psycho-geriatrician Dr Millie Ho reviewed Stuart and started treating his depression with medication.
It was so heartbreaking to witness an intelligent and vibrant man diminishing in front of my eyes, also very hurtful although I knew it was the disease making him say or do things. Sometimes I felt physically sick, frustrated and angry. I am human.
Each day there could be new challenges. I started to write in my diary to review how I handled difficult behaviours or situations and what could have been done differently so I could handle them better next time. I found it very useful and also a way to clear my mind and refresh myself to embrace a new day with new challenges.
I keep telling myself that I am doing my very best, that’s all I can do, which gives me inner peace. Since the Meeting Centre Support Program closed in March 2020 because of the pandemic, it was very challenging for me to think of ways to keep Stuart occupied and stimulated. There were times when he was still very good and interested in engaging in various activities including some cleaning and gardening at home, which made me proud of him and also gave me a sense of living a “normal” life. Colouring in and jigsaw puzzles became our best friends.
In our global travels, Stuart always spoke at the end of each trip in front of the tour group, to express gratitude for a great trip. At the end of the trip to South Africa in 2018, a few months after the diagnosis, Stuart didn’t speak. While another fellow traveller was speaking, Stuart said to me, “It should have been me, but I am diminishing.” It broke my heart; the words will remain with me for the rest of my life.
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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 3: Commitment
Read part 5: Psychotic episodes
