One evening in May 2020, Stuart suddenly felt freezing cold. I checked his vital signs, all seemed to be within the normal range. In the following days and weeks, gradually the symptoms became more frequent. He would start with feeling cold, then roll onto the floor, shivering, holding his head saying “you are hitting me”, “it hurts”.
It was frightening for me to watch. I called paramedics a number of times initially and consulted with Prof. Smerdely, who didn’t think that it was very common in his professional career, and decided to admit Stuart to hospital for investigation.
Stuart was hospitalised for 15 days during July 2020, six days at St George Private Hospital without any episodes, subsequently nine days at St George Public Hospital.
During the second hospital admission, medical staff witnessed multiple psychotic episodes and Prof. Smerdely started medication for Stuart, hoping to settle him down and minimise the episodes.
Sadly, medication didn’t have much effect. Stuart endured psychotic episodes randomly for many months, sometimes in unfamiliar places, or in the car when I was driving, or when he was bored and agitated. Witnessing his episodes was traumatic and heart wrenching, and I struggled to come up with activities to keep him occupied.
He was a handyman and he had the ingenious idea to make wood blocks to place in the grooves of Colourbond fences. I supported him and bought the materials for him. This “project” kept him engaged for many months. I noticed that when Stuart was busy with tasks, his mind was focussed on them instead of being idle, which gave him a sense of achievement, purpose and value. His mood was better, he was less anxious and his episodes decreased. I could get things done without being interrupted when he was occupied.
Managing Stuart’s depression, psychotic episodes, behaviours and repetitive questions exhausted me mentally and physically. He constantly needed attention. Sometimes I had to choose to be silent otherwise I knew that I could explode.
Later in 2020, Stuart started to show aggression. I was worried that he might hurt me physically, I was also worried that he might hurt himself when he was having the psychotic episodes. He was more restless, saying “I want to go home” multiple times a day. Once he said “I will never come back to this place again”, sadly he had disassociated himself from our home, which hurt me deeply. I kept telling him that he would go home tomorrow. When he got very distressed, I had to take him out for a drive to settle him, otherwise he might have another full psychotic episode.
I was worn out mentally, emotionally and physically and feeling despair. I cried almost every day.
For the very first time, I was considering respite for Stuart. I needed a break before I broke down.
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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 4: Progression
Read part 6: Respite and in-home care
