‘The Voice of Welsh Rugby’, David Parry-Jones, was diagnosed with Alzheimer’s over eight years ago. Prior to that, he’d been a journalist, news and current affairs presenter, and rugby commentator at BBC Wales. Beti and David: Lost for Words – a programme focusing on caring for someone with dementia – is on BBC One Wales on Monday, February 13 at 9pm, and broadcast outside Wales on Sky channel 952, Virgin Media 864, Freesat 964, as well as available to watch live or on catch-up on BBC iPlayer.
Here, David’s wife and carer Beti gives us an insight into a typical day in their lives.
Words were the first thing to go
David’s life from a very young age had revolved around words. Ironically they were the first thing to go when the disease took hold.
I, Beti George, David’s partner and carer, am so often lost for words at the serious failings in dementia care. I’m a ‘veteran’ broadcaster and with this programme, I’ve been given a voice for the tens of thousands of family carers who save the UK billions of pounds a year. Alzheimer’s Society figures show that there are 55,000 people with dementia in Wales and the cost of caring for them is £700m a year, with two thirds of that being met by carers and families.
It’s a Sunday morning and I’m sharing my thoughts with you. I’ve had a very rare lie-in because I over-indulged last night watching episodes of Homeland. It was way past midnight when I joined David, who’d gone to bed around 10 o’clock.
I knew there’d be a price to pay. Soaking pyjamas, bed pads and duvet cover. His personal incontinent pants and pads almost dry as usual! A mystery that no one seems to be able to solve, perplexing in this day and age of technical miracles. Of course issues to do with toileting are not discussed enthusiastically!
Time to get the washing machine going for the first time today. There will be more. David distressed. Tears rolling. Dignity challenged. Patience and hugs administered. All is well in the warm comforting shower and smiles and humour return.
An hour and a half later: breakfast. Feeling I’ve already done a day’s work! Thinking of professional carers who do this, day in day out, for a pittance.
Now it’s medication time – another challenge. David takes painkillers for his bad hip. He gave up on swallowing tablets years ago so every medicine has to be in liquid or dispersible form. I hide one of his tablets in a blackberry with his cereal. 15ml of one is put in a glass of apple juice because he won’t take it neat. The other is Calpol, usually dispensed for children. David, as an adult, has to take four at a time.
The many needs of people with dementia
Why oh why don’t pharmaceutical companies take into account the needs of people with dementia? If only I ruled the world!
Tomorrow morning, Paul – David’s carer and ‘mate’ – will come to help out, as he does every weekday morning since October. After eight years, I was assessed and found in need of support. 36 hours a week: a day and a half. Paul does 24 hrs and we’re still on the look-out for another carer to do the rest. Not easy – they’re in such short supply.
The day itself passes without incident. The Wales v Italy match is on. David sleeps through most of it, waking up at times to applaud a skilled run or tackle by a player in red. And ask several times who’s playing.
All is calm until about 9 o’clock when it’s time to prepare for bed. It takes between an hour and three hours – and I miss the good programmes on the telly! Books and concerts and opera and theatre are no-go areas for me now. But hey: why am I complaining? I take care of David because I care for him. He’s not a burden. And life for thousands out there is much tougher than mine.
However, I’d argue that it’s time to think again about dementia care, which includes caring for the carer in a meaningful way. Let’s start a revolution! I have ideas…
An Admiral Nurse for everyone affected by dementia
Susan Drayton, Lead of Admiral Nursing Direct helpline, said: “Beti’s feelings about the failures in dementia care is, sadly, something we hear frequently. Looking after someone with dementia can be a lonely experience, and very often the thing that the carer needs above all else is someone to talk to who understands what they are going through. Like Beti, many family carers don’t even see themselves as ‘carers’ – they are wives and husbands, sons or daughters.
“It is because of people like Beti that Dementia UK are working hard right now to bring Admiral Nurses to more areas around the UK, including in Wales.
“Admiral Nurses have significant experience of working with people with dementia and their families. They understand the daily difficulties of living with dementia, and they work alongside the person being cared for and their family to provide vital practical and emotional support so that they do not have to go through it alone.
“Our mission is to provide access to an Admiral Nurse for everyone who is affected by dementia. Until that happens, anyone with concerns or questions about dementia can speak to one of our specialist dementia Admiral Nurses by calling our helpline on 0800 888 6678.”
Support our mission to provide an Admiral Nurse for everyone that needs one