'My wife got lost in Primark for 2 hours - then we got the most devastating news'

Edinburgh Live

4 days ago

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When Paul Furness stood by his wife, Nicola Furness, during her breast cancer battle and double mastectomy a decade ago, the pair thought they had conquered their greatest obstacle.
Tragically, an even more formidable challenge lay ahead - one that Paul describes as "the battle they're not going to win".
Nicola received a Young Onset Alzheimer's diagnosis two years ago in July 2023, aged just 56, and in a candidly honest conversation to boost awareness, Paul exclusively shared with the Mirror how reality truly appears for a husband-turned-carer.
Paul, who resides in Beverley, East Yorkshire, initially observed Nicola's memory lapses and bewilderment in 2019, beginning as minor incidents at first.
"She'd make a cup of tea but just pour in the hot water then walk away and leave it," reports the Mirror.
"She'd repeat questions she had just asked me, and she even drove home with our daughters and went past the top of our street that we've lived on for 25 years."
Paul also describes how she would switch the gas on but forget to light it whilst cooking, and she would become unnecessarily upset at a new workplace computer system, completely losing faith in herself during the process.
On one occasion she was lost in Primark for nearly two hours because the layout "was confusing". Things have also become perilous.
"Nicola drove to a friend's party. She then told friends that I had dropped her off and proceeded to drink alcohol. She was stopped by the police and breathalysed on the way home. She passed but they could see how confused she was and the police drove her home."
Beyond losing her capacity to cook, clean the house and shop, managing his wife's personal hygiene represents another challenging aspect that's frequently overlooked and rarely discussed openly. Paul's determined to address that.
"I have to shower her because she'd walk into the shower with her pants on. I have to tell her what she has to do with the shower gel and the shampoo. It's exhausting. She won't remember simple things like flushing the toilet of course, and I need to dress her, brush her teeth and tie her shoe laces.
"You would think a 58-year-old woman would find it all frustrating, but she's passed the point of knowing that she has Alzheimer's. It can be mentioned on TV soaps and we no longer speak over it like we would have two years ago, she's not aware that she has it."
Paul works in debt management as an operational manager with his local council and has been left "juggling a lot of balls in the air" over the last difficult few years. He has transitioned from working full-time to a reduced 15.5 hours a week.
"I'm only 55, I'm not ready to retire yet. It's too early."
While he admits that retirement would mean life would "just be about Alzheimer's", financially, it's not a situation he's comfortable with. "My youngest daughter is at drama school, it's costing me a fortune. We've had to make cutbacks and sacrifices. I have to be careful about how I'm managing money now."
This financial concern made getting a proper diagnosis crucial. This allowed Nicola to leave work as 'ill health retired', a status that makes a significant financial difference compared to being dismissed for long-term sickness.
But it came with a harsh, different type of cost, Paul recalls.
"She hated the whole diagnosis process because it's so drawn out and protracted - it was so emotionally humiliating for her. To watch her during the cognitive testing where somebody asks what five plus seven is, what the names of her daughters are, her daughters ages. She was getting mixed up and not able to answer. Being given a score described as 'abnormal'.
"It was horrendous, followed by CT scans, MRI scans and then she was sent for a mental health check. That was arduous because she's quite a private person."
Paul concedes that she has regressed and deteriorated "quite a lot" over the last few months, putting plans in place to safeguard what little he can.
"She isn't going to get better, she's going to get worse. We do things with her like going on holiday so we can make memories - but really, those are memories for me and my daughters. We take lots of pictures and then we put them into books so that she can remember the experience.
"Nikki lives in the moment, but I'm very fortunate to be able to give her these experiences at least. I don't know how long that's going to last - it's becoming increasingly difficult."
Paul discloses that as her main carer, he's reached the point where he can rarely venture out alone with her anymore.
"I can't leave her at all now. I went to the bathroom and she went looking for me while I was away. I lost her for a minute but it was the longest minute of my life. It was an absolute panic."
Personal time isn't the only sacrifice Paul has made.
A devoted Hull City FC fan and former season ticket holder, he no longer attends matches.
It's also been four years since he's enjoyed a drink.
"I have to stay very calm and be very patient so alcohol is a no."
One activity that Paul does depend on is running.
It's the sole pursuit he's maintained from his life before Alzheimer's, participating in club runs from Monday to Wednesday whilst at work.
His mother, aged 79, stays overnight to assist Nicola whilst he takes some essential respite and the opportunity to socialise about topics unrelated to Alzheimer's. "It's a release valve for me. We'll talk about our kids and what they've been up to. It spurs me on and gives me a break and escape."
Paul also brings Nicola along to the park for yoga sessions, Parkruns and fitness classes.
He chuckles: "She is in completely the wrong position to everyone else in the class but it doesn't matter – the instructors are so kind and spend so much time with her."
Glimpses of the Nicola he once cherished emerge whenever she hears music - particularly 80s retro soul - moments Paul describes as "a beautiful thing".
"Music brings her back to life again. It's like we have her back. This month we're going to see a Luther Vandross tribute again," he reveals, acknowledging it's the fourth time they've witnessed the same performer. "Nicola starts singing, dancing, she comes alive. Music is a very powerful thing.
"It's remarkable as well, she'll recall the songs word for word whereas typically I can tell her something and three seconds later, it's gone."
Paul has his mates, a caring mum and two daughters - Isobel, 25 and Lydia, 20 - but solitude can still creep in.
"I don't have anybody on a weekend who can watch her to let me do anything. I've tried external help before but she rejects them.
"I can get very lonely because Nicky was an educated, articulate, vibrant, funny, compassionate, caring woman and now she's just a pale shadow of herself.
"There's no conversation there, apart from her asking for things, because the conversation gets lost. I terribly miss the woman that I was married to and had children with. I miss conversation with her the most, and seeing her being a mother to the kids. She's their mum more by name only now. ".
Paul, who has collected approximately £12,000 for Dementia UK and the Alzheimer's Society following his wife's diagnosis, continues to discover methods to recognise the former Nikki buried within. "If we go supermarket shopping I try to avoid Tesco because it's got the clothing section and she's just obsessed that she's got nothing to wear. Every time we go in, I end up buying another set of pyjamas!".
As a dad, Paul harbours one significant worry regarding his adult daughters.
"They've shown me how incredibly resilient they both are. My eldest has qualified as a chartered accountant and my youngest has moved away for drama school. The one thing that I didn't want to see is their mum's health and condition derail their ambitions."
Every couple harbours future aspirations and objectives, yet Paul regards this as confronting circumstances much earlier than anticipated.
"I see this as dealing with things 25 years before I thought I might have. We found out just before our 25th wedding anniversary. Instead of going for an Italian meal, we went to Calabria in Italy on holiday. We had a week there and it was still very raw. Television presenter Fiona Phillips, who published her latest book Remember When last month, received her Alzheimer's diagnosis back in 2022 when she was 60.Her spouse Martin Frizell has opened up about the challenges of being a carer, revealing earlier this year that his wife requires "a lot of help", with his responsibilities including assisting Fiona with washing, dental care, getting dressed and fundamentally "making her feel as safe as possible".As a fellow husband taking on a caring responsibility, Paul identifies strongly with Martin's circumstances. "I resonate with Martin a lot. Everything they're going through is the same as me - we're living a similar life."
Operating in survival mode nowadays, Paul approaches each day as it comes. "Just keep pressing repeat on the things that make you smile in life. Because you don't know when life's going to catch you out.
"You've got to wake up and you've got to reset and you've got to put a smile on your face each day. You can't drown in self pity. You can't just concentrate on the negative aspects of life. You'll just go under.
"The conversation has been deeply moving, one that Paul has handled with grace, courage and consideration, yet when everything is taken into account, there's no altering what lies ahead.
"I miss her, and this is going to get harder. It's like watching someone fade away in front of you. This isn't a normal part of the ageing process. She's now someone I used to know."