English journalist Fiona Phillips reflects on how she reacted when each of her parents were diagnosed with dementia, an incurable disease that many of us will suffer from before we die.
A couple of weeks ago, Pope Francis said something that brought all the guilt of putting my mother in a care home flooding back. At a special mass to honour grandparents, he said a society that does not care for its elders “has no future”. He warned of a “poisonous” culture in which they are abandoned in care homes, where, he said, “they often suffer neglect, fear and loneliness”.
Up to 80% of people living in care homes have Alzheimer’s Disease or some other form of dementia. It is a wretched, cruel, misunderstood condition that I’ve seen both parents through.
I’ll never forget the day I had to leave my mum in a care home – in her late 60s, the youngest resident there – with her early-onset Alzheimer’s. I still wake up at night with the guilt of leaving her and her imploring “But I’m your mum…” …. The four hours I spent in my car, my face flooded with tears, was a journey I still carry around with me. My dad had said he couldn’t look after her. I hated him for it. What we didn’t know then was that he was already in the early stages of Alzheimer’s himself, and didn’t know what the hell was happening to him. ….
Mum was admitted to hospital with dehydration on several occasions during her time there. My guilt and heartbreak drove me down nearly every weekend to Wales to see my once always-so-glamorous mum sitting in a chair, head bowed, smile gone, with somebody else’s clothes on, dirty nails, and her hair savaged into a care-home crop. The look of an institution. Not a home. That look will always haunt me. ….
Mum had already died when it became clear that my dad could no longer live independently. I found this out when I arrived on his doorstep unexpectedly and found that he’d been living like a tramp for months. It was the only occasion he’d opened the door to me in all the months I’d been making futile visits to the house, after driving hundreds of miles.
This time he cried when he saw me, as though he was relieved that his predicament had been unmasked. He was living on a dirty mattress on the floor, surrounded by clutter, piles of mouldy dishes in the sink and bundles of notes to himself as a prompt to his disappearing memory. I decided there and then that I had to move him nearer to me.
Fiona Phillips, “Dementia: Why putting my parents in a home will haunt me forever“, BBC News Magazine, 17 October 2014.
Fiona Phillips (born 1961) is now an Alzheimer’s Society ambassador.