Amanda Kopel steps onto the pitch at Tannadice and it all comes back.
This is where her husband Frank spent ten years of his career as a footballer. It was at Dundee United that he scored his most celebrated goal, a shot from the 40-yard line in the 1979 UEFA Cup first-round match against RSC Anderlecht. His breathtaking strike was the decider, allowing the Tangerines to triumph on away goals. Decades later, Amanda played a video of his proudest moment in the living room of their home in Kirriemuir, Angus. Frankie, as he preferred to be known, smiled in admiration. ‘That was a great goal,’ he mused. ‘Who scored it?’
By now Frank’s dementia was in the advanced stages. The defender, who also played for Manchester United and Blackburn Rovers, was diagnosed aged 59. Early onset dementia affects more than 40,000 Britons and represents five percent of dementia cases. The charity Young Dementia UK fears the real figures could be much higher due to limited GP awareness and the complexities of diagnosing the condition. Those aged 30 to 65 could make up as many as one in ten of all sufferers.
When the doctor broke the news to the couple in 2008, Frank and Amanda’s lives changed forever. ‘When you get a diagnosis of dementia,’ she explains, ‘you actually lose that person at the diagnosis. You lose them twice — at the diagnosis and you lose them again when they die…
‘You go through all the emotions — denial, frustration, anger — and I used to think, How can this happen to Frankie? He was a perfectly fit man. There were no signs of memory problems. He wouldn’t even take an aspirin for a headache… He ate healthily, he exercised, never smoked, drank only occasionally. I thought they had made a mistake.’
Amanda was forced to give up her job in accounting for a medical centre to look after Frank full-time. As his condition deteriorated, Amanda was told to find him a residential home but she couldn’t bring herself to do it. ‘I told them, I don’t care how much it costs, whatever I have to go and scrape together, he’s staying at home. If people are able to keep their loved ones at home, it’s better and it’s actually cheaper. It does save a lot of money…
‘Even when we were young, Frankie would say, “You’re never going to leave me when I’m going to die, are you?” I used to joke about us still being together in our nineties in a care home.’
She pauses to collect herself, before drawing on an old proverb: ‘God laughs at people who make plans.’
Like so many families just getting by, they were neither rich nor poor. They were the squeezed middle, the people who work hard all their lives then find, when trouble hits, that there is very little provision for them. As things stand, those under 65 who are assessed as needing social or personal care must pay out of their own pocket unless found to face financial hardship. In practical terms, a weekly income in excess of £201 for a couple or £132 if you live alone consigns you to bearing the cost burden. There are exemptions for the terminally ill or those under a mental health compulsion order but for the bulk of middle income families the charges apply.
And they can be crippling. The diagnosis of dementia is devastating enough but, just as your world is falling apart, you find yourself billed for the pleasure.
Amanda didn’t know where to turn. ‘I was told by his care manager that I could apply for carer’s allowance… I didn’t want anything for looking after Frankie — we were married.’ But with Frank’s costs sometimes running as high as £750 a month, Amanda filled out the requisite forms. Initially she was told she was entitled to £52 a week but when officials realised she was over 60 and receiving a small state pension, the offer of support was cut dramatically to £3.81 a day.
‘We just thought, how can this be right?’ she recounts. ‘The benefits system is a nightmare. It’s a minefield if you’re not used to it… The family were really good but I couldn’t keep going to them.’
With the care bills racking up and the mortgage outstanding, Frank and Amanda were forced to make heartrending decisions like selling his medals and memorabilia — a lifetime of memories but dementia is an unsentimental creditor. As agonising as it was to part with these cherished tokens, Amanda was grateful for the choice. ‘We were extremely lucky. Frankie wasn’t the world’s most famous footballer but he collected a few things in his footballing career and so we were lucky in having items that we could sell to help pay the bills and the personal care… How many other people like Frankie are out there in Scotland who aren’t as lucky as us?’
Amanda launched her campaign in June 2013, telling then health secretary Alex Neil: ‘I have lost my husband even though he is still alive.’ Frank’s Law would close the loophole in personal care provision in Scotland so that services are free to those who contract debilitating conditions shy of 65. It might seem like a straightforward tinkering with the law but Amanda hit obstacles at every turn.
‘Not only was Frankie in a battle for his life,’ she recalls, ‘I was battling bureaucracy every single day. I was hitting my head off a wall at times and I kept getting doors shut in my face. During that time, I was getting letters from people and people stopping me in the street to tell me they were going through the same thing. They told me, ‘Keep going with this’.
These early messages of support girded Amanda for a lengthy and at times exasperating struggle to change the law.
Those who know dementia all too well call it ‘the long goodbye’. For the sufferer, it is a lonely and frightening process of becoming more lost by the day. For friends and family, it is a slow-motion torment as you witness the person you love deteriorate before your eyes. Anyone who has sat at the bedside of a parent or spouse can attest to the pain of watching their final hours as they slip away. Dementia is a deathbed vigil that can last years and is all the crueller for fleeting moments of recognition that bring hope and snatch it away again in the space of seconds.
Amanda knows dementia all too well. She knows the blank stares, the sudden flashes of anger, and the innocent, childlike sobs of fear and confusion. Emotion in her voice, she summons up an aching moment from early on: ‘There was one day we were sitting on the couch and he turned to me and asked, “Where do you live?” I thought he was taking the mickey but I looked at him and there was something in his face. It was like a knife going into me. I told him I lived in Kirriemuir and he said: “You do not. That’s where Amanda and I live… You’ll need to come and see us and have coffee with us. I think you’ll like her”.’
When they went out to eat, Frank would place his order then remind Amanda, a stranger in his mind, to order something for his wife. One day the couple, who were married 45 years, were sitting on the sofa looking through their wedding album when Frank became perplexed. Amanda recounts: ‘He burst into tears and put his arm around me and said: “Amanda, I’m so sorry I never recognised you. Amanda, what’s happening to me?” It was like trying to comfort a baby.’
‘I don’t want anyone to go through what Frankie and I went through,’ she vows softly.
When Frank passed away in April 2014, Amanda was desolate — but she pressed head with their campaign nonetheless. She is clear about what drove her forward: ‘Every day that goes by, there is another under-65 who has gone to their grave having to pay for that personal care. Their only crime was they broke the rules by becoming old before they were 65… It is age discrimination. It’s blatant age discrimination. They are undervaluing people’s lives under the age of 65 and it has to stop… Every human being, from birth to death, should be treated with dignity and respect regardless of what age they are. If dementia had never come to our door, Frankie and I would never have been aware of the discrimination against under-65s and we would have always thought dementia was a disease of the elderly. It’s a horrible disease, regardless of whether you’re in your thirties, your eighties or your nineties.’
Sitting beside her is Miles Briggs, the Scottish Conservative MSP who has taken up her cause. His private member’s bill, Frank’s Law, would put an end to the discrimination Amanda describes. The consultation on the Bill is open and Amanda implores members of the public, even those never touched by dementia, to take part. ‘I’m urging people today — today — to please just take a few moments and complete the survey that is ongoing… None of us ever know what’s around the corner… Nobody goes through the journey of life in good health. At some point in that journey, any disease, disability, illness or condition is going to strike and we need reassurance in Scotland to know that there is a system in place so that when we need help, it is there. We shouldn’t be having to jump through hoops to get that help. It should be there.
‘I hope Frank’s Law is going to be delivered sooner rather than later because I’m not prepared to go away and sulk in a corner and wait another two or three years. God gave me the gift of the gab when I was born — and, thank God, a sense of humour because I’ve needed it in the last few years.’
Where does Amanda draw these apparently endless reserves of determination? She points me to the Scots motto emblazoned on the coat of arms of Falkirk, where she and Frank grew up: ‘Better meddle wi’ the De’il than the Bairns of Falkirk’. ‘Some MSPs should have realised that when they took me on,’ she adds pointedly, having met, she feels, with intransigence and apathy from the Scottish Government. She credits Mr Neil as an early ally but says the trail went cold once he was replaced in 2014. At a photo opportunity in the Scottish Parliament in January all the party leaders came together and posed in Frank’s Law T-shirts styled in the colour of their respective parties. Amanda was waiting with Nicola Sturgeon’s yellow shirt only to be told before the photoshoot began that the First Minister wouldn’t be coming. She asked if one of the other 62 SNP MSPs could stand in for their leader. No one was provided.
However, Amanda is grateful for the cross-party backing and welcomes the Scottish Government’s apparent last-minute conversion to the cause, having launched and then expanded a feasibility study into the change. It sounds like the breakthrough Amanda has been waiting for but she has come to learn how politics works and after four years of banging on the door to get ministers’ attention, she knows they could just as easily turn away again or kick the issue into the long grass.
Still, she is optimistic about her chances of success, telling me: ‘I know nothing happens overnight and there’s still a way to go. But I’m a lot more confident now. Even as we speak, there is some poor soul in Scotland drawing their last breath who is going to their grave paying for their personal care. The government has had ample time. When Miles launched the Bill a few weeks ago, the government did come out and stay they always intended to do it. I’m sorry but I have to dispute that because not according to any of the meetings or the correspondence I’ve got… Yes, they’ve come out at the last hour and I’m delighted at that and I’m delighted at the amount of work that has gone on behind the scenes from Miles and his team and the people he’s got supporting it from the other parties.’
Mr Briggs, whom Amanda credits as her champion, is resolved to get the law passed: ‘The government can act but they need to act on a timescale. I don’t think it’s good enough if they take this forward not to say when. All the campaigners will want to know this is going to be delivered over the next 24 months, absolutely max. Not before the next election and then it slips.’ If ministers drag their heels, he is prepared to bring together all the opposition parties and force the law through Holyrood. The Tory politician hopes it doesn’t come to that and ministers come on board but he is blunt nonetheless: ‘There’s a majority in parliament to deliver this.’
The resistance thus far speaks volumes about politicians’ reluctance to address the so-called ‘ticking time bomb’ of social care costs. The population is ageing — and fast. Statistics project a 28 percent increase in the over-65 population in the next 25 years, with the number of Scots aged 75 or over spiking by 86 percent. By 2039 the pensioner population will be just shy of 1.5 million. The difficulty for governments across the UK, and farther afield, is that the time bomb has arguably already detonated and its effects are being felt today.
If the crisis is to be managed properly, it can no longer be avoided. Of this Amanda is certain: ‘Frank’s Law is common sense. Nobody should have to jump through hoops. I would love, in an ideal world, if on December 31 this year, Frank’s Law was done and dusted. There are a lot of people still living in hope in Scotland and they were constantly seeing those hopes dashed because their voices were being ignored. Constantly, barriers were getting put in their way. In life, stones get thrown in your path, whatever the situation, and it’s up to the person to decide whether they take those stones and build a bridge or do they just say, “Oh well, I can’t do anything”.
‘I’ve been telling a lot of people and it’s been falling on a lot of deaf ears. Now, they’ve suddenly woken up… I’ve not got MSP after my name and I’ve not got Councillor in front of my name. I’m not a doctor or anything like that. I’m just Amanda Kopel. But dementia came to our door and I’ve experienced it and I speak from the heart… I just want to improve people’s lives, especially people who are at a vulnerable stage in their lives.
‘They should be able to live whatever time they have with the dignity and respect that is every human being’s right, regardless of their age.’
The consultation on Frank’s Law can be completed on the Scottish Parliament website and is open until October 6.
Originally published in the Scottish Daily Mail. Have your say on the issues raised here by emailing email@example.com, remembering to reference the article. Contact Stephen at firstname.lastname@example.org.