Life’s rich tapestry: ‘I want support, not sympathy’

As he tackles both bereavement and dementia, Nicky Stephens remains determined to maintain an active lifestyle.

Whether designing furniture, playing in a punk band or learning to dance, Nicky Stephens’s life has always been rich in variety.

Despite now living with dementia and the loss of his husband, the 71-year old Londoner intends to keep living as fully as he possibly can.

Press the orange play button to hear this story in Nicky's own words:

Teacher to punk

Having completed art school in the late 1960s, Nicky trained to become a teacher but left the profession less than a year later after deciding it wasn’t for him.

A job working as carpenter and joiner for a building contractor then helped him to hone his craft before launching his own venture.

‘The boss thought I should stay and was rather annoyed when I said I think I’ll just do it myself,’ recalls Nicky, who lives in Peckham in south-east London.

Nicky Stephens

Nicky is determined to live life as fully as he can

He made a success of designing and making bespoke pieces such as furniture, shelving and staircases for private clients.

‘I just started finding people who wanted something in their house. Then it got more and more fun because I was designing all sorts. That’s what felt really good for me.’

Nicky and his older brother Roger were also in a punk band called The Desperate Bicycles. The group released a series of independent records in the late 1970s and was championed by BBC radio DJ John Peel.

‘We all had our own special songs about our lives that we sung,’ says Nicky. ‘My particular one was about not wanting to be a teacher! It was good fun.’

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Syrian connection

Nicky’s family includes many high-profile figures with their own fascinating stories. His father, Robert Stephens, was a diplomatic correspondent and foreign editor for The Observer newspaper.

Barbara Altounyan, known as Taqui, was Nicky’s mother. She was an inspiration for the author Arthur Ransome, who based aspects of his children’s classic Swallows and Amazons on his experience teaching her and her siblings to sail in the Lake District.

Taqui, of Armenian, Irish and British descent, wrote two celebrated memoirs of Syria, where she lived and worked at different times. Nicky feels a strong connection to the Syrian city of Aleppo, which he visited with his late husband, Carlo.

‘I like to go everywhere but particularly there – I’d like to be there again,’ he says. ‘Luckily I managed to take Carlo there twice before the terrible things that happened with the civil war. He was very happy to see where I’d been.’

Nicky and Carlo had been together for 37 years when Carlo died suddenly in April 2017. They had met while celebrating New Year’s Eve 1979 in London, when Carlo, an American, was over with the US Air Force.

‘He saw me looking at him, so I managed to get to him and we talked,’ says Nicky. ‘But at one point it was so packed that we lost each other for nearly half an hour and I thought, “Oh no – please!”

‘Carlo was very intelligent and very good at cooking.’

Nicky Stephens working at his desk

Nicky attended art school before becoming a designer

The right words

Having suspected for some time that something wasn’t right with his own health, Nicky was diagnosed with Alzheimer’s disease in the summer of 2014. One of his most vivid recollections of the aftermath is breaking the news to an old school friend.

‘I remember kissing her and saying, “Well, I’ve got Alzheimer’s – I don’t know what I can do about it.” I didn’t really know what would happen. Obviously, gradually I found out more about it.’

‘I’ve been determined to do as much as I can myself, because I don’t want people to say, “Oh we’d better look after him”,’ says Nicky. 

Nicky’s memory isn’t as good as it used to be and he sometimes struggles to find the right word during a conversation. Despite these challenges, he has made a point of remaining as independent as possible.

‘I’ve been determined to do as much as I can myself, because I don’t want people to say, “Oh we’d better look after him,” and all that stuff,’ he says.

‘It’s very nice but I don’t want people worrying and saying, “You can’t do this, you can’t get the bus.” I’m still managing to do a lot and I’m very active, which I think helps.’

However, Nicky acknowledges there are instances where he needs additional support.

‘I’m careful not to get into a difficult situation. I accept that there are things my brain finds a bit difficult, and I don’t want to get in a state of panic,’ he says.

‘If I were going on a long train journey north to see my sister, I’d get someone to tell me how to do it.’

A support worker visits Nicky two evenings a week specifically to cook with him, and a woman has been living with him temporarily as part of a homeshare scheme – where a person who needs help to live independently at home is matched with someone who needs accommodation and can provide support in return.

Nicky also attends weekly counselling sessions, and he is grateful for the help he’s received from his three siblings.

Finding a way

Nicky’s weekly schedule includes a trip to the Royal Opera House in Covent Garden for a dance class for people in the early stages of dementia.

‘It’s been very good for me. The woman doing it reckons I’m the best one!’ he laughs.

At his local Daffodil Activity Group, run by the Society, Nicky takes part in drawing, painting and yoga, as well as helping the sessions to go smoothly.

‘I’ll put all the chairs out, move things around, do some cleaning up,’ he says. ‘I’ll talk to people – it’s quite difficult for some of them but we’ll have a talk.

‘The staff there are great, I get on with them. I feel like I’m helping people and they’re helping me as well.’

Losing Carlo, in addition to the progression of his dementia, has forced Nicky to come up with new strategies for managing daily life.

‘It was easier for me because I had Carlo. It’s more difficult now I’m on my own,’ he says. ‘I have been forgetting things a bit more recently but I’m determined to keep on, so I try and write things down to remind myself.

‘I want to find ways that help me if I’m not doing things quite right. Maybe there are other ways I can keep at it – I’m always looking into things.’

Nicky Stephens holding a photo of his late husband Carlo

Living with dementia has become more difficult since the death of Nicky's husband Carlo

Film to remember

Another source of support, and pleasure, is the film that Nicky had made about his life. It was created by My Life Films, through a free service to help people with dementia celebrate and remember their lives.

Covering Nicky’s childhood through to the present day, the film includes clips of him reminiscing and personal photographs from over the years.

‘I was very keen to see something about myself that helps me to remember,’ says Nicky.

‘My sister suggested it, and I was very keen to see something about myself that helps me to remember,’ he says.

‘Quite a lot of people who know me have wanted to see it. When I first got the DVD, a group of friends watched it – they seemed to like it. One of the staff from Alzheimer’s Society came over to watch it, which was nice.

‘I felt good that I was talking about my life and history. I was quite surprised I managed to do it, I must say!’

So how does Nicky feel about life at the moment?

‘It’s not bad, it’s changed very much,’ he says. ‘I’m still in tears about Carlo sometimes, but because I’m having to do things myself I’m more active and talk to more people, which I like.’

Nicky is resolute about retaining his independence for as long as he can, and he also wants to see improved treatments for people living with dementia.

‘I just hope that one day they’ll start working out ways of making it better,’ he says.

Dementia together magazine: Feb/Mar 19

Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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Dementia together magazine is for everyone in the dementia movement and anyone affected by the condition.
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I have been reading letters from old friends during a lock down inspired clear out. I had just read a 7 page letter from Nicky dated 1963 when I thought I would look him up on Google. If you would like to have it, and others from our friendship group please let me know, Nicky. I wish you all the very best. Love, Julia (Julie) Donat

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I was also taught by Nicky at Watford College of Art back in the late 80's he was an inspirational teacher who set me on a path to a career as a designer. He was smart, talented, and above all humble.
I had never heard any of the stories about his family and I agree with he post above he would never have held his life as more interesting or valuable than anyone elses.
A wonderful human being who I was privileged to have met - I wish you well Nicky!

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I was taught by Nicky at art school in the late 80s and often kept in contact with him. All I can say is that he is a really good bloke, was an inspirational teacher, who really cared, and would really take time in helping you.
He has a deep love of music and his furniture that he made was really beautiful as well as fully functional, and certainly he deserved much more recognition for the works he made.
I can say one thing, Nicky didnt ever make a big deal about who his family was, in fact when he told me he seemed quite shy about it and brushed it off--and Im sure he would be the first one to say that all human life- narratives are equally interesting, no matter who ,what or where.

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I still find days when life can be hard, but with the support of so many friends and things to do my life goes on.My Lesley died 5 years ago but I think about her most days.
I am having a break from fund raising after ten years but I know I will be back in the hope I can help other people caring or fund raising when I return from visiting my family in Australia

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It was very good for myself to read this article. Thanks

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I find reading the experiences of people with dementia quite often both moving and informative. Direct advice about how to deal with sufferers of the disease is also most useful. My wife is in a Care Home with Alzheimer's and sometimes being with her changes of mood can be trying. it's a dreadful illness. Thank you so much for you help etc. HC

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I think this video seemed to emphasise the aptitudes of his family and himself. I do this think irrelevant. My father was a bus driver....does this mean my history and skills are not sufficiently important to warrant publication. Alzheimers affects everyone regardless of creed, ability, even age. Do we really need to state that this person and his family were worthy of publicity simply because of his history and previous ability. Although I have to acknowledge that his desire to be independent commendable.

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Thanks for commenting, and yes we help to tell the stories of people affected by dementia from all walks of life – this would definitely include bus drivers! If you or anyone else is interested in sharing your experiences, then we’d love to hear from you to see how we might be able to do this, whether through our magazine, a blog or in another way.

Get in touch to share your story:

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