June 13, 2024

‘I’ve had hallucinations of my dead cats and bump into doors’

Eventually, my GP relented and I was referred to the elderly care unit. That name really upset me – to be called “elderly” when I was barely 60 – but after a series of scans and MRIs, I was diagnosed with vascular dementia. Part of me was relieved there was a name for what was wrong with me, but it also felt like a death sentence. I went home and cried for three months, barely leaving the house. It wasn’t so much, “Why me?” but, “Why me at the age of 60?”

I also recalled caring for my father, who’d had Alzheimer’s disease. Dad had suffered from hallucinations – seeing the ornaments on his mantelpiece move around, and insisting that a stranger was sitting in his armchair. He was so convinced of the fact that we had to put a dining chair on his seat to stop “Bill” sitting there.

More than once, my dad called 999 to report imaginary burglars in the house. At one point, I had to sleep in his bed to stop him wandering outside in the middle of the night. Was this what the future had in store for me? I was terrified. The doctors told me to stop drinking caffeinated coffee, and to continue taking my blood pressure medication – that was all the help they offered. My cognitive health continued to decline: I had no idea what to cook or how to do it, so I stopped eating anything except toast and cereal.

Friends didn’t know what to do or say so they drifted away; my brother and sister didn’t have the capacity to look after me. Eventually, in October 2016, I was forced to take retirement for ill health, and I decided to move in with H, who lived in East Sussex. I hadn’t wanted to impose my illness on H, but we both realised I couldn’t put it off any longer.

On the Eastbourne coast, H made me proper meals and I rallied a bit, but my overall health continued to decline. The pandemic hadn’t started yet, but I lost my sense of taste and smell. I started bumping into doors, had restless and painful legs, and found it hard to sleep.

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