I found a job in a dementia care home – and then my grandad moved in

Grandad’s visits always started with that familiar knock – not on the front door like everyone else, but on the window as he peered through with a smile.

With a mint Viennetta ice cream in hand too, of course.

We’d spend afternoons playing Monopoly with him, then my brother would verse him at chess. Throughout it all, he’d make the whole family laugh. His sense of humour meant he was one of my comedy idols.

He was my biggest supporter in the audience of every amateur dramatic play and wrote me congratulations cards telling me how much of a star he thought I was. Later in my life, he always lovingly asked about how my acting career was going too.

People think dementia takes all this away – and it’s true that the disease can dramatically change a person – but there were still remnants of him right up until his very end.

I count myself lucky that I got to work in the care home he spent his final days in. I was able to properly say goodbye to him and share some last beautiful memories together. This is something I’ll cherish forever.

I don’t really remember the very early signs of dementia in Grandad, but Mum does. She told me that they’d go for a coffee and his mind would go blank or he’d ask where he was.

That’s when they took him to the doctor to do some tests. He was incredibly smart, so he was great with recognising numbers. However, when applying that to a clock face, he couldn’t do it. He was diagnosed with dementia shortly after this at age 75, which was about 13 years ago.

One of the first times I specifically remember realising that Grandad was acting out of character was when he called our home phone – which only he did – and asked me if I wouldn’t mind passing on that he couldn’t go to the Olympics that day, he wasn’t feeling up to it. So I agreed to pass that onto the Olympic team. He really did make me laugh. 

Alzheimer’s and dementia: the facts

The most common forms of dementia (symptoms of a decline in brain function) are Alzheimer’s disease followed by vascular dementia.

Alzheimer’s is caused when plaques and tangles form in the brain making it increasingly hard for it to function properly. Early symptoms include forgetting recent events, struggling to remember words, becoming disorientated in familiar places and finding it difficult to concentrate.

Common early symptoms of vascular dementia include problems making decisions or following a series of steps, such as cooking a meal; slower speed of thought and trouble sleeping. The condition can also cause significant mood changes and depression and make people behave completely out of character.

Dementia is the UK’s biggest killer – and one in three babies born today will develop dementia in their lifetime. The risk of developing both Alzheimer’s and vascular dementia roughly doubles every five years from the age of 65. Women and men are affected equally. Diabetes, obesity, heart problems and high blood pressure all increase the risk.

However, you can significantly reduce your chances of developing the diseases by leading a healthy lifestyle – not smoking or drinking to excess, eating a balanced diet and getting regular exercise. Keeping mentally and socially active is also beneficial.

The third most common form of dementia – accounting for an estimated 20 per cent of cases – is Lewy body. With this condition, tiny clumps of protein appear in the brain’s nerve cells, causing a range of issues including mood swings, problems processing thoughts, hallucinations, difficulty balancing and walking slowly. Although DLB (dementia with Lewy body) can affect people under 65, it is much more common as we age, affecting men and women equally.

There is currently no cure for any of the forms of dementia. But getting an early diagnosis is very important in allowing you and your loved ones to access all the medical and social support available. If you are worried that you have any of the symptoms, your GP will be able to refer you to a specialist who can carry out a range of tests.

If you are worried that yours or someone else’s symptoms may be dementia, download the Alzheimer’s Society symptoms checklist, on alzheimers.org.uk; for more information or support on anything you’ve read here, call our support line on 0333 150 3456 or visit our website.

Some things were fairly harmless, while others weren’t. He reported my mum (his daughter) missing to the police a few times, but gave them her age from when she was a child. He’d also wander the streets in his dressing gown before a helpful neighbour would guide him home or call us to help him out.

After multiple incidents like these, that’s when my mum and aunt – who both worked full-time and couldn’t look after him themselves – decided to get carers for him to help around the house because he lived alone. I don’t think he quite processed it, but it was good for him because it ensured he was getting proper meals everyday.

My mum also put little labels on things to help him and rearranged the bathroom to pop a chair in the shower. Eventually, these became ineffective when he started remembering less and getting confused more.

Around this time, he had a bad fall, which was the catalyst to my mum and aunt deciding it was best for him to move into residential care where he could be supervised at all times. We’d visit him regularly to see the same smiling face. 

He could be cheeky to the workers and would say back-handed compliments to them. This was partly his sense of humour and lack of filter due to his dementia, but he must have been disoriented and annoyed at himself by not being able to remember things. Sometimes I wished people could have seen his kindness and him chatting away like before.

I started working at a care home – not Grandad’s one, but one closer to home – during the pandemic after my work as an actor understandably fizzled while we were in lockdown. I wanted a job that was rewarding, and I thought I could bring my love of games, acting skills and passion for talking to people into a role that really needed people at the time.

So I applied to a local care home and got the job initially working in the lifestyle area. This meant I was coordinating games, reading and writing with the residents, as well as making sure they were comfortable and relaxed.

We even built our own version of the Old Vic, where we’d hold amateur performances. It didn’t run smoothly all the time though.

On one occasion, I set up a Sunday church service with a priest via Zoom and halfway through the mass, one of the residents with dementia got up, pointed at me and shouted: ‘Shirley!’ then loudly asked how I was and what I was doing there – in front of everyone.

I just went along with it and pretended to be Shirley, then we tried to get the service back on track. I found out later that Shirley was this resident’s childhood best friend.

After two years of working in the lifestyle section, I started on reception, but I’d often float between the two – sneaking away from the front desk to play chess, snap or just have a laugh with the residents.

The real faces of dementia

A couple in their 80s sitting in a tattoo parlour, having matching love hearts inked onto their arms.

The family who celebrate Christmas every day – with a freezer full of turkeys – because Dad thinks it’s 25 December. The little boy who tells his Mummy that Daddy is ‘broken’ – as she continues to raise him alone. The son who realises something is wrong when his father keeps ordering pork pies.

The motorbike lover who suddenly can’t turn the handlebars. The nurse who heartbreakingly diagnosis her own symptoms. The scientist who has devoted his life to helping them all.

Meet Ron and Sheila, Jules, Caroline and Mark, Grant, Anita, Fran and Tim. They are the real faces of Alzheimer’s and dementia – loving couples and families who know only too well that grief for an old life can make way for a new one you never planned. They know the love, the laughter, the compassion and the fear of facing Alzheimer’s and dementia – the UK’s biggest killer.

This week and next, Metro brings you the truly inspirational stories of how they have coped, how they have laughed as well as wept and how the Alzheimer’s Society has provided them and their loved ones with vital support.

This was when we started planning for Grandad to be moved to the care home I worked in because it was closer, a bit nicer and I could be there to keep an eye on him. He was chatty at this point, but not making a lot of sense and mostly didn’t recognise me either. There were times where he’d ask me about my acting though, which felt so special.

Unfortunately, he had also been diagnosed with leukaemia too, which was devastating for our whole family. His prognosis wasn’t good.

Then in May last year, my life completely turned upside down when I started filming for The Traitors.

Obviously, there was a lot going on for me at the time and it was such a high pressure situation, but I couldn’t stop lovingly talking about Grandad or the residents I worked with. I’d name drop them all the time and the funny stories I had – like one of them cheating in a game of chess! – but producers would often have to tell me they couldn’t use any of that footage.

During one story I told around the round table about dementia – in my bid to try to persuade others to get Wilf or Aaron voted out! – I opened up about Grandad. Afterwards, one of the other contestants actually grabbed me to say one of her family members has dementia too.

She told me how music is a big thing to help recall memories, and that she’d greet her loved one in a sing-song kind of way. It’s moments like these that I cherish the most from my time in the castle, as well as how supportive the rest of the cast were to me.

Unfortunately, I didn’t make it to the final but actually, it was a blessing in disguise because it meant I got to spend time with my grandad.

When I went back to my job, I immediately noticed how much his health had deteriorated. He was barely conscious and only really taking fluids. In a way, I felt so lucky because the nurses would sometimes run down to the reception desk and tell me to come up to his room because his eyes were open. 

My family would come visit him and I’d always bring up some amazing cakes or food to the room while we’d tell Grandad about our days or had a laugh with each other to lighten the mood.

The day before his passing, I held his hand and thanked him for always making me laugh. He wasn’t conscious at the time, but I like to think he heard me. I wasn’t working or there when he died, but my mum and aunt were there by his bedside and said he drifted off peacefully.

Life hasn’t really felt the same since – especially at Christmas – because he was such a big part of our family and we all miss him so much.

When The Traitors eventually aired at the end of last year, it was such a wild time for me. We’d watch the episodes in the care home and some of the residents even brought me clippings they’d seen of me in newspaper articles. I felt so loved and supported.

It was through post-show interviews where I mentioned my grandfather and his dementia that Alzheimer’s Society reached out to see if I’d want to get involved with any of the work they do.

I immediately jumped at the opportunity because they give family and friends of people with dementia the chance to look up life-changing tips or share stories among each other.

They offer a phone call or video chat service for people struggling to come to terms with their diagnosis, which I think is so important. Finding this sense of community can be pivotal for someone who may feel like they’re going through it all alone.

I’m supporting Alzheimer’s Society’s ‘Ultimate Vow’ campaign, which highlights the harsh realities of living with dementia, while also showing that love shines through – in sickness and in health. And most importantly, that Alzheimer’s Society is there to help.

But in order for them to reach as many people as possible, they need funding. I would really encourage everyone to visit their website and donate what they can. It’s a fantastic charity doing amazing work.

In their TV ad, a man gets angry when he can’t find teabags, which is something I’ve seen at the care home when a resident can’t find their keys, for example. Campaigns like these are so important because it just shows you’re not alone and don’t need to suffer in silence.

Even in my job, just being able to share stories of my grandad with the families of dementia patients can help to make the whole process feel less scary for them.

It’s why I won’t stop talking about him or forget about the man he was. He was the same person I always recognised – even if he didn’t have a clue who I was.

Deep down, he was still my grandad and I miss him so much every day.

As told to James Besanvalle

The doctor who realised his own mum had dementia

Leading expert Dr Tim Beanland’s personal story of hope…

As Alzheimer’s Society’s Head of Knowledge, Dr Tim Beanland’s understanding of Dementia is pretty wide-ranging.

But he needed every scrap of knowledge when his mother, Nancy, was diagnosed with Vascular Dementia. His experience has convinced him just how important it is to get an early diagnosis and how it is vital to try and keep our brains healthy.

‘There are 900,000 people currently living with Dementia in the UK and one in three people born today will develop the disease,’ explains Dr Beanland.

‘So it should not have been a complete surprise when my own mum was diagnosed some ten years ago when she was in her late 70s. Thanks to my job, I was alert to the signs.

‘As a keen dog walker, Mum had always been very fit and healthy but, unfortunately, she had developed diabetes later in life – a significant risk for dementia.

‘Mum had always taken great pride in her appearance and been highly organised. She’d worked in an office before marrying my dad, an aerospace engineer who died when he was just 69 of lung cancer.

‘But, in around 2010, I started noticing that my mum’s clothes had food stains. Her fridge was a mess with out-of-date food and the hall table was piled with unpaid bills.

‘Doing anything new – like when I suggested we try a new shopping centre – made her incredibly anxious. It was completely out of character.’

Knowing these could all be tell tale signs of Dementia, Tim contacted his mother’s GP to request a referral to a specialist.

‘Fortunately I had Power of Attorney for my mother which meant that I could make decisions about her health. I would advise everyone to do the same,’ he says.

‘It also meant that when it came to the end, I was able to insist that she should die in her care home not in hospital. We had talked this over so as I knew it was what she wanted.’

However, her GP took some persuading.

I don’t want to pretend the disease isn’t devastating -but I’m convinced Mum’s years were improved because we all knew what was wrong…

‘This was over 10 years ago and, like many doctors then, and a few still, he believed that it was pointless getting a diagnosis for an incurable disease,’ says Tim. ‘He couldn’t have been more wrong. ’

In fact, once Nancy was diagnosed, after a series of brains scans and cognitive tests at her local hospital, Tim was able to access a range of support for her.

He is convinced this made an immeasurable difference to the quality of her life as it does for other people with dementia. For example some patients with Alzheimer’s can be prescribed drugs to slow the development of the disease.

‘Although knowing she had a terminal disease was shocking, Mum was wonderfully pragmatic and almost relieved to know what was going on. She had sensed things were wrong,’ says Tim.

‘Alzheimer’s Society told me about agencies who could supply carers to help her get washed and dressed at home, and suggested social groups for her to join.

‘Her favourite group was Alzheimer’s Society’s ‘Singing For The Brain’. However ill she was, her face lit up as she sang one of her beloved Frank Sinatra tunes.

‘Mum still wanted to feel useful and needed – so important for anyone with Dementia. Getting involved in simple tasks like hanging out the washing or folding napkins gave her joy and purpose.’

Nancy died in 2015, aged 82. She had spent the last few weeks of her life in a care home.

‘I don’t want to pretend dementia isn’t devastating, because it truly is. But I’m convinced Mum’s years were improved because we all knew what was wrong and we’re able to get her all the available help,’ says Tim. ‘I’m also convinced that, even in the few years since she died, conditions have improved hugely.

It honestly is never too late to make changes that can radically reduce your chances of getting Dementia…

‘With so many more people talking about dementia – although one third of people still remain undiagnosed – the stigma is beginning to fade.

‘We also know so much more about how people can reduce their risks of developing Dementia in the first place. We now know that about 40% of cases are preventable.

‘For example, it’s now clear that what’s good for the heart is good for the head. Taking regular exercise and eating healthily will help you avoid developing diabetes, suffering a stroke or having heart disease – all significant risk factors for dementia.

‘Putting your brain to work is also important. You can ward off the development of Dementia by several years by learning a foreign language or taking up a musical instrument.

‘Puzzles such as Crosswords and Sudoku are also good at keeping your brain on point.

‘Puzzles and learning new things help delay dementia because they build up cognitive reserve, which is a resilience in the brain to the symptoms of dementia,’ explains Tim.

‘You can change your brain even in later life, and exercising it strengthens neural connections. It really is a case of ‘use it or lose it’’.

Tim’s new puzzle book, ‘Mind Games’, published by penguin, is out in October.

‘Mind games gives your brain a good workout while also covering the underlying science,’ he explains.

‘If possible, pick-up healthy brain habits early in life. But it honestly is never too late to make changes that can radically reduce your changes of getting dementia’.

By Tessa Cunningham

Source: Read Full Article