I never expected that the first 16 months following Stuart’s admission to residential care on June 9, 2021, would be the most difficult time of my life. I thought my care duties would reduce, but instead the stress intensified to another level.
An ancient Chinese proverb says: “Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
My driving force comes from love, responsibility, passion and compassion, and most importantly my motivation to maintain Stuart’s dignity and personal hygiene. He lost his independence, I am his everything.
The book Neither Married nor Single precisely reflected my new life, which needed a lot of adjustments. It wasn’t easy on any level.
It was even harder for Stuart to settle in a new environment. He didn’t eat or sleep well, he wandered or sat up all night, he refused personal care. He lost 6.5 kilograms in two months. Periodic lockdowns at the facility due to Covid outbreaks made things even harder.
I visited Stuart daily. He was always delighted to see me. Every time when I walked into the common area, his eyes would light up and he would walk towards me with arms wide open saying “l love you”. It meant so much to me.
Stuart’s personal care was a major issue. Very often when I walked into his room, he was completely soiled: faeces on his socks, shoes, on the chair, floor, in the bathroom sink, on the bed sheet, hands, fingernails. It was unbearable to witness. How could I not feel distressed seeing my husband in such an undignified, inhuman state!
Stuart regularly hurt staff when they were attending to him for personal care, which was particularly upsetting. He did the same to me. In his mind, his privacy was being invaded. Staff were afraid of approaching him, some were injured and off work on WorkCover.
The facility arranged for the Dementia Behaviour Management Advisory Service to review Stuart, but the service didn’t have any constructive recommendations. Geriatrician Dr Millie Ho adjusted Stuart’s antipsychotic medication hoping to settle his agitation and make the personal care manageable, but the medication made Stuart extremely drowsy with a high risk of falls and unfortunately the aggressive behaviours remained.
I took Stuart’s personal care into my own hands most times. Staff had no strategies in place apart from contacting me almost every day and waiting for me to attend to him. I felt sick knowing that he was soiled in his own faeces. I couldn’t understand why it was happening when Stuart was in an aged care facility.
The situation carried on for months. I was feeling tired, nauseous, lacking energy and emotionally run down. I started to feel anxious before I arrived every day, knowing that he could be soiled for hours. I became so distressed that my body was literally shaking. I was getting more and more anxious, feeling physically unwell.
I decided to seek help. I reached out for all the support that I could get, by joining a walking group, peer support group, counselling and meditation. Eventually in November 2021 I started antidepressants for the first time ever in my life and saw the psychologist, after all my efforts failed.
_______________
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 6: Respite and in-home care
Read part 8: Residential care (part two)
