Loving husband Malcolm Topper has learned to accept that there will come a time when the woman he loves will no longer be able to share with him the memories that stitch together the colourful patchwork of her life.
So, it’s of great comfort to him to know that, contained within a pink lever-arch folder, are the tracks of her years – the music that made her, and the associated stories that make those uplifting tunes so meaningful.
It is to that folder he’ll turn when her condition deteriorates to the extent that the intimate conversations they have shared during 18 years of happy marriage sadly no longer flow.
Malcolm’s wife, Carol, was only 50 years old when she was diagnosed with early on-set vascular dementia – the second most common type of dementia, after Alzheimer’s.
“When I was diagnosed, I went into a depression,” said Carol, now 56. “I did not want to see anyone or go anywhere. I didn’t want to move off the couch.”
The couple were signposted to St Andrew’s Parish Church’s dementia hub in Carluke by The Haven – a Lanarkshire registered charity which provides emotional and practical support to individuals and families whose lives have been affected by a wide range of life-limiting illnesses.
“I’ll never forget the first time we came here,” said Malcolm, 60. “Carol whispered in my ear: ‘Can we about-turn? Reverse, reverse, reverse?’ Then, somebody grabbed hold of her hand and said: ‘Hello. Would you like a cup of coffee?’ We have never looked back. Our life has totally changed since we came here.”
From portrait painting at Heart for Art classes and games of Play your Cards Right, to walk-and-talk sessions and even song-writing and recording, Malcolm enjoys all kinds of activities at the hub, where he can chat freely with other carers of loved ones who are there with them, living with dementia.
Carers can even receive therapeutic pampering sessions in the hub to help them relax and unwind.
There, everyone can let the mask slip and be themselves – because everyone else who gathers in the church hall understands.
Having recognised a need for support for people living with dementia and their carers, the hub was created by St Andrew’s Parish Church minister, Rev Helen Jamieson, in November 2012.
It was the year Helen's own mum, Margaret Sloan, was diagnosed with dementia. She died four years later, at the age of 89.
“Folk travel from around Clydesdale to the hub, and it is such a privilege to get to know and share with so many people. In fact, the hub is now often described by many of those attending as being like a family, a big safety blanket, a lifeline,” she said.
“Although a number of our attendees pre-Covid have sadly died or now require long-term care, it has been amazing to welcome many new faces. I am always humbled by the gratitude of those attending and the unsolicited donations that so many people have made to the ongoing work of the hub.”
Among the people whose lives have been touched by the hub, and by Playlist for Life, is Alicia Dibdin, of Lanark.
When her dad, Robert Martin passed away in 2019, her mum, Mae - who had vascular dementia - had no clue that he was gone.
Talking of the hub at which she's now a volunteer, Alicia explained: "This place was a godsend for me, and for Mum. As soon as I came in the door, I felt it was home and everyone was so friendly, so nice."
Alicia bought an easy-to-use music player from Unforgettable, which Mae could operate simply by opening and closing the lid. She listened to her playlist three times a day. And when she became agitated or frustrated, the tunes soothed her and any feelings of anger were soon forgotten.
Sadly, Mae passed away in March last year, aged 89.
There is no charge for the myriad activities on offer at the hub, which has received some funding from Church of Scotland Go for It Fund and from Life Changes Trust. Its team of volunteers, many of whom have cared for a loved one with dementia, are its beating heart.
It is within this hall that a world of new interests have opened up for carers like Malcolm, who can lose himself with a paint brush or when penning the lyrics to songs that speak of his devotion to Carol.
Through the hub’s association with arts group Acorn Shed Music, two tracks written by Malcolm are featured on a CD, Through the Window, which was named in acknowledgement of the heartache faced by carers who were separated from their loved ones by panes of glass during the pandemic.
“I found a talent for writing songs, which I never knew I had,” said Malcolm, who penned Cwcth – a song meaning ‘cuddle’ or ‘hug’ in his native Welsh tongue. And his wife’s eyes well with tears when she hears the other track, Two People Together.
“It makes me greet,” she says. “It’s about me fading away.”
Talking of the undeniable love they share, Carol said: “Me and Malcolm were a whirlwind romance. We met in the September, got engaged in November, and got married the following June at Coulter Mill near Biggar. There were just 16 of us at the wedding, but we had a big party at night. He is the love of my life. We’ve never been apart. We are with each other 24/7.”
One of the greatest impacts the hub has made on the lives of the couple was the introduction of Playlist for Life, which saw a senior pupil from Carluke High School spending time with Carol, helping her to compile her personal playlist as part of his Duke of Edinburgh Award.
Her playlist has since blossomed into a precious book, which tells Carol’s loved ones, in hand-written notes, all about what each record means to her. And when the day comes when she does, as his song foresees, fade from him, this book will be the most treasured of gifts.
“It starts from songs my granny sang to me, and those from the big new year parties, which were usually at our house,” explains Carol, of Carnwath, South Lanarkshire.
“I’ve written about aunties and uncles and who their families are, and who sang which songs. It then goes to songs from primary school, songs I remember from the ‘70s, songs from the first disco I went to at the Girls’ Brigade, to Abba’s Dancing Queen.
“It goes right through to high school, when Grease came out. I went to see that film 12 times. The Spice Girls was the first concert I took my daughter, Heather, to. Then, it goes through to songs I’ve sung with Malcolm. It really is a playlist of my life and I absolutely adore it. It’s on my wee MP3 player, and I’ve got it on Alexa. I just say: ‘Alexa, play Carol’s playlist.’”
Explaining that music is played daily in the Topper household, Carol continued: “I grew up with singing. I remember on a Saturday night, we’d hear Perry Como and us three would sit and clap as our parents danced in the living room. Music is such a wonderful thing for the soul, whether you are happy or sad. And this playlist for life is one of the best things I’ve ever done.”
Her playlist has been such a powerful force in her life that Carol, who has been a royalist for as long as she can remember, even told the late Queen about Playlist for Life and the Carluke dementia hub when she realised her ambition of meeting her at an Edinburgh garden party in 2019. It was a moment, she says, that made her life complete.
On a Tuesday afternoon at the hub just five days after the Queen’s passing, she sat with other attendees within the church hall as they spread out yellowed pages of a copy of the Daily Record from June 1953 and marvelled at its reports and photographs of the Queen’s coronation.
“Me and Malcolm have decided we are going to live life to the full,” said Carol, whose daughter Heather, 36, made them proud grandparents five months ago when she gave birth to baby boy, Ben.
“I never thought I’d ever be married, and I married Malcolm. And I never thought in a million years I’d meet the Queen. We never thought we’d be Granny and Papa. Our life is just so happy. I can honestly say I can die a happy woman.
“Yes, I still do stupid things like putting the kettle in cupboards, sprinkling sugar on the tatties and brushing my teeth with Fixodent – but at least I can laugh about it.
“You always have to laugh. I have done my greetin.’ I am not greetin’ any more. What I’ve got isn’t sore, and I have come to terms with it. There is a contentment that comes over me and I say: ah, well, this is what is for me, and we are getting on with it.”
* For almost a decade, charity Playlist for Life has seen the multiple benefits of playlists for people in Scotland living with dementia.
In June 2017, there were 90,000 people living with dementia in Scotland, with an estimated 20,000 diagnosed every year.
The charity, based in Glasgow, was founded in 2013 by writer and broadcaster Sally Magnusson, following the death of her mother, Mamie, who had dementia.
The vision for the charity is simple: it wants everyone with dementia to have a unique, personalised playlist – and for everyone who loves or cares for them to know how to use it.
For more information, visit www.playlistforlife.org.uk
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