Dementia: Why putting my parents in a home will haunt me forever
Broadcaster Fiona Phillips reflects on the difficult decisions she faced when both parents were diagnosed with dementia.
There are more than 433,000 people currently living in care homes throughout the UK. This means, if a recent survey is to be believed, that hundreds of thousands of loved ones will have made one of the hardest decisions of their lives. The study found that choosing care for a parent is one of life's most stressful events, ranking higher than buying a house and even divorce.
Putting a loved one into the care of strangers is akin to saying "I give up", "I'm handing you over", "I can't look after you". At least that's what it feels like when you walk out of the door and leave behind the husband you've loved and lived with for decades, or the mum that's lovingly brought you up and tended to your every cut knee and emotional wound.
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…" as I left West Wales to drive back to my husband and children in London. 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.
My mum had three children, yet none of us took her in. None of us showed her the care she'd so lovingly shown us. That is the thought that still churns over and over in my head. It is the thought that still drives me to tears when I hear one of mum's favourite Elvis songs or a Welsh hymn. But, because her illness required around-the-clock care, seven days a week, I couldn't see a way around looking after her as well as a three-year-old and a baby and keep my job in breakfast television, which involved getting up at 3.30am, often after sleepless nights. Or, some days, after mum phoning me at 1am, 2am or 3am crying and saying she couldn't remember how to bake cakes anymore. I was mentally and physically drained and felt I couldn't take any more.
I often think of the day the decision was made. Mum was in a local hospital after breaking her hip - a common occurrence in people with dementia, as they often lose their balance. After visiting her, Dad, behaving more oddly by the week, suddenly announced, "I don't want her home. I can't look after her." It was a statement that at the time, I thought was completely heartless and cruel, not knowing that Alzheimer's was slowly changing his personality too.
My brother David, Dad and myself found a pub, where David and I went over and over the decision, while compiling a list of homes to check out. Back then, in 2002, we found that none of them provided specialist dementia care. After several gut-wrenchingly depressing viewings, we plumped for a home where a resident told us she loved living there, although I now often recall, she also said: "But it's really hard to get a drink if you need one".
What is dementia?
- An umbrella term referring to a collection of symptoms, which may include memory loss and difficulties with problem-solving or language
- Progressive condition caused by brain disease, currently without cure
- Alzheimer's disease affects 62% of those living with dementia
- About 800,000 people formally diagnosed with dementia in UK - but only 43% with the condition get a diagnosis
- Approximately one in 20 people over age 65 have it, rising to one in six by the age of 80. One in three in the UK will have it by the time they die
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.
Nowadays, there are more specialist dementia care homes but, as this week's Care Quality Commission report found, there is, unfortunately, still more bad care than good.
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. He died four years later following a terrible end in a psychiatric hospital, for which I also carry a tonne of guilt. Thankfully, though, in the intervening years he lived happily in a warden-controlled flat, with carers coming in three times a day, as well as visits from me and his brother, who lived nearby. It wasn't ideal, but putting a parent into any kind of care rarely is.
"How many times we discard older people with attitudes that are akin to a hidden form of euthanasia," Pope Francis said. My mum wasn't even old. But I still feel I discarded her. That will live with me to the end of my days.
Fiona Phillips presented GMTV for 11 years and is an Alzheimer's Society ambassador. She was reporting on dementia for Inside Out, on BBC One North East & Cumbria. Catch up on BBC iPlayer.
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