The Longest Farewell is a hard book to read. It is also an important book with a profound and, against all the odds, ultimately hopeful message.
In it, Nula Suchet speaks the unspeakable: she rails against “the bastard dementia” that afflicted her late husband James Black aged 57, leading them both on what she calls “our journey to hell”. The pages hum with anger, frustration and guilt – yet her tale ends with a magical twist that renews our belief in the power of humans to connect, even in adversity.
In telling their dementia story warts and all, Nula highlights the common themes that crop up so frequently when I speak to those affected by the condition, either directly or indirectly. There’s the drawn out diagnosis; the impersonal manner of some medical professionals; the diminution of identity.
“Dementia is destroying everything. My marriage, my dreams, my finances, even myself. Everything is subsumed by the soul-crushing grind of being a carer to the empty shell that is now my darling James”.
It is raw, uncompromising language, riven with pain.
Even more chilling is her family’s reaction when she and James leave their home in Ireland to find residential care for him in England. No one says goodbye. Nula thinks this is because they don’t know what to do or say. “It is as if he’s become a non-person. If he had been diagnosed with cancer they would see him as a brave battler, but dementia frightens them”. I’m sure she’s right. Dementia used to frighten me, but it no longer does because I have a much better understanding of what it is.
Nula’s love for James sustains her, just – and music is one of the last things she refuses to give up on for her opera-loving husband, who’d been a highly successful television director and writer. In the early stages of dementia he wept when she played him CDs of Tosca and La Bohème – responding viscerally to one of the greatest joys of his life.
When she takes James to live in a care home she puts on The Marriage of Figaro, his favourite Mozart opera, and immediately he stands up and starts conducting the music, a huge smile on his face.
“I can’t breathe. I move to wrap my arms around his body and hold him tight so he can’t see me cry. I want to run out of the room with him and take him far away from the world of care homes and dementia”.
This poignant incident will resonate with anyone who’s had to place a loved one in care. When my mother was dying of dementia, I witnessed the incredible power of music to connect (and wrote about it here) and am now passionate about spreading the message. I’m still pursuing my campaign to persuade the BBC to bring back their old radio programme Singing Together, originally aimed at children, this time for older people and those with dementia (see here).
When James’ worsening condition forces her, with reluctance and guilt, to place him in a care home she meets a man who knows just what she’s going through because he is too. It is the broadcaster John Suchet, whose wife Bonnie has Alzheimer’s, and their shared experience brings them together in “the strangest dance of love and care” which ultimately, following James’ and Bonnie’s deaths, leads to John and Nula marrying.
Nula Suchet
Love, then, squares up to dementia. It can’t prevent James or Bonnie from suffering or dying, but neither can it be destroyed. Nula lays bare the devastating impact of James’ Pick’s disease (a rare form of dementia affecting behaviour, emotional control and ability to communicate) not just on him, but on her.
The resulting book is one of coruscating honesty that is well worth a read – but not, I would counsel, if you or a loved one are in the throes of what its author describes as “soul-destroying and utterly frightening years”. Wait until your personal encounter with the UK’s most feared condition is over.
Occasional moments of magic temporarily ease the pain. The house is suffused with the scent of sweet peas that James has grown and placed in every room, and when Nula goes to her car she finds little bunches of the flowers on the driver’s seat and dashboard. “It’s his only way of telling me he loves me,” she says, and you hear her heart breaking.
It is in the care home that Nula meets first Bonnie, with her “strange and ethereal beauty” and then her husband John Suchet, to whom she feels “an instant connection.” As their friendship develops into something more it is inevitably hard for them both. Nula is a wife visiting a husband she adores but to whom she hasn’t been able to connect for years; she’s also establishing a relationship with another man.
John Suchet, incidentally, is as convinced of the power of music to enhance the lives of those with dementia as I am.
“Music is medicine to those with dementia, able to bring comfort and joy when nothing else can,” he told me. “Bonnie smiled and tapped her feet along to Abba when words no longer held any meaning”.
The book never leaves you in any doubt about Nula’s love for James, or John’s for Bonnie. And towards the end, battered by their experiences, their spouses’ suffering finally over, their burgeoning love almost destroyed by the bastard dementia, Nula and John come together and find peace.
When John Suchet’s book on Mozart is published he dedicates it to the memory of “Mozart lover James Black”. While Nula ends her work with words of hope. After a decade of flat hopelessness, her creative energy rises again like sap.
“I’ve changed as a person. The loss of James has made me see life in a different way. I’m a bigger, better person because of it. My life now, once again, is about love”.
It is a life-affirming end to an immensely sad and painful story.
An envelope arrived in the post the other day from Southampton university. In it was a map – a Map of the Tracks. Intrigued, I unfolded the purple and pink paper to be met by names and places that swept me back to my uni days.
There they all were: Swaythling, Burgess Road (it had a good bakery that sold a mean iced bun), Bitterne Park, The Avenue. I had a sudden, painful recollection of cycling up Portswood Road, battling against icy winds to get to my Monday morning lecture on Paradise Lost.
More enticing were the questions posed beside these evocative locations. “What memories do you have? Do you think of a particular time and place? Is it the union back in the ‘60s?” Er, not quite – I was still in short socks then.
But imagine my delight at seeing these words: “What about the music of the time? We want to know which track takes you back every time you hear it”.
Excellent! And easy too. Joni Mitchell’s Big Yellow Taxi skids to a halt and I’m in my dingy little room in Montefiore Hall – a large, rundown place in which a handful of other girls and I occupied the only female floor.
Needless to say, I soon found myself a boyfriend. Jon played Pink Floyd’s Another Brick in the Wall on a non-stop loop as he made endless cheese toasties in a special machine, the likes of which you never see now. Ian Drury and the Blockheads played at the Gaumont. I saved up to see them: Ian – and his rhythm stick – were fab-u-lous.
How quickly music summons up your past, as all of us involved in the dementia sector know only too well.
Another Ian – Big Ian Donaghy, care trainer, musician, author, speaker – popped up on my Twitter feed last week asking similar questions to my old alma mater. “What songs take you to a point in your life and break your heart?”
My answer was swift:
“Once in Royal David’s City: mum & I listened to the Nine Lessons & Carols from King’s College on Xmas Eve, day before she died. She had v severe #dementia by then & mainly slept but when she heard it she opened her eyes. Can’t hear it without my heart crumpling”.
Plenty of other tweeps joined in with their thoughts.
The Big Man was seeking songs for a choir to sing at the Care Show in Birmingham, where he was a keynote speaker. This wasn’t an official choir, a Singing for the Brain choir or a community choir, but one that Ian created by dashing around the conference asking anyone and everyone if they’d like to join in his session at ten past two.
Such is the forceful passion of the man that 200 people – care staff, managers, owners, influencers, singers and non-singers, the tuneful and the tone deaf – joined him and his guitar to belt out songs. Ian’s mantra is “Dementia Is A Team Game” and he’s nothing if not inclusive. It lies at the heart of all that he does.
Big Ian knows only too well the power of music to connect to those with even severe dementia. When his mother-in-law Liz died a few months ago aged 66 she’d been living with dementia for several years. Ian says that right up till the end, when everything else had been taken from her, Liz was still singing. She had created a playlist with 200 songs, including John Denver’s Annie’s Song and Leaving on a Jet Plane (two of my favourites), which all her carers knew.
At 49, Liz chose all the music for her funeral. This was very important: the family were able to respect her wishes because they knew what they were – so often loved ones are left guessing. Whenever a song Liz liked came on the radio, she would say she wanted it at her funeral. “I used to joke that her funeral would be like Live Aid with a box!” Ian tells me.
In the last year or so Big Ian has made several short, punchy films highlighting his love for music and his passion for bringing it to those with dementia. One of the most moving involves yet another Ian. In his mid 60s, he has progressive supranuclear palsy which means he can no longer communicate verbally.
Big Ian visited him at Landermeads care home in Nottingham and, hearing that his namesake used to enjoy Paul Young, decided to play his guitar and coax him to sing a duet.
“It was astonishing,” says Big Ian. “He had the room in tears. By the end he was leading the song – there were parts where he came in before me and then, at the end, when he sang ‘Every time you go away, you take a little part of me,’ he tugged at his shirt and motioned at me”. I’ve watched it and warn you now: you may need a hanky.
Big Ian is right. Dementia is a team game. If we all join in it makes a difficult situation better. At the beginning of the year I wrote a blog about togetherness which struck a cord with readers. Musing on the way we humans invariably think in terms of “them and us” rather than “we” – those living with dementia versus us or those who are old versus us – I concluded that this division helped breed stigma.
Before my mum was diagnosed with dementia I knew very little about it – I metaphorically crossed the road to avoid it. Once she developed the condition, my view of it altered irrevocably and very much for the better.
I wrote in my blog:
“She was my mum. So, she happened to have dementia. She was still my mum, with her big heart, her eccentric ways and her numerous faults. At a stroke my attitude changed and any notion of dementia existing somewhere else, over there, in other people’s lives, evaporated. We are all in this together”.
My words echo Big Ian’s philosophy. The man’s a musician. He’s also a showman with a massive heart. He knows the power of music to break down barriers and connect – hence his impromptu choir.
As he tells me, “If we all join in no one feels uncomfortable. If we’re all ridiculous, no one’s ridiculous. It’s like if you and three mates start dancing, then it’s alright because somebody has broken the seal”.
Immediately I’m transported to the uni bar. It’s a Friday night circa 1981 and I’m grooving round my rucksack of books to Kim Carnes’ Bette Davis Eyes. Of course I am. So is everybody else. Aren’t they? If they’re not, they should be.
My graduation from Southampton University in 1982, with mum & dad
I’ve always had a soft spot for John Humphrys, who retired from R4’s Today programme this week after 32 years in the role. Perhaps it’s because he’s a Welshman and I undertook my postgraduate journalistic training in Cardiff or it could be that, like him or not, he’s undoubtedly a persistent and skilled interviewer. As many of those paying tribute to him said, in canine terms he’s more of a terrier than the Rottweiller label he’s so often given.
But I think what’s really endeared him to me in these last few years is to hear the hard man of the airwaves reveal sensitivity when interviewing people with dementia and their loved ones. It’s always more moving when someone you don’t expect to have a soft side, shows it publicly. Mr Humphrys did so at the end of his final Today programme, his voice cracking as he gave his thanks to the great British public for putting up with him for so long. It was as unusual as it was moving to hear the great man struggling for words.
Earlier in the programme, the BBC’s director general Tony Hall also mentioned this unexpected, sensitive aspect of his colleague. The DG wondered aloud if it was down to the haunting impact on Humphrys of the 1966 Aberfan disaster in which 116 children and 28 adults were killed when a colliery waste tip slid down the mountain side onto the village school. It must have done: the young Humphrys was the first reporter on the scene and he’s subsequently said that throughout his decades of covering wars and disasters all over the world, Aberfan remains the worst.
Pam Schweitzer, founder of the European Reminiscence Network, in action at a Remembering Yesterday, Caring Today event
Listening to Lord Hall’s words about the retiring interviewer (I’ve just realised the wonderful irony in that phrase), I was reminded of an interview that Humphrys conducted with Denise Stevens, a woman caring for her husband with dementia.
The interview was unusual from the start. Humphrys began by reflecting on his own father’s dementia and the way, towards the end, he had “turned his face to the wall” and died. This personal note set the tone for a radio item that had the feel of a conversation between two people with a shared experience, on which we listeners were eavesdropping.
Throughout the piece Humphrys displayed nuanced understanding of the complexities of Denise’s life as someone caring for a loved one with dementia. He said that of all the voices he’d heard on the subject hers was the most compelling, and that her experience gave her a moral authority. The interview was five years ago; it moved me to such an extent that I blogged about it here https://pippakelly.co.uk/2014/09/the-unending-grief-of-the-dementia-carer/.
When dementia touches you personally it changes your attitude towards it. I mentioned this in my essay on stigma in the latest Alzheimer’s Disease International report, launched yesterday (see p95 of the report).
Questioning whether the media’s role is a help or a hindrance when it comes to diminishing stigma, I argued that the dementia community and the press could benefit each other. I said it was up to those in the dementia sector to provide the media with strong, human interest stories to inform the general public about the condition and thus help to diminish stigma (which springs from a toxic combination of silence, ignorance and fear).
“Once a condition such as dementia is given a human face, your attitude towards it changes. Gone is the stigma and fear: mum may be behaving in an unusual way, she may be incontinent or unable to speak properly, but she’s my mum.” I went on to explain that this phenomenon accounted for the power of celebrities in combatting stigma. The public think, bizarrely, that they know them.
Which is just one of the reasons why John Humphrys’ interview with Denise Stevens, conducted as it was in front of 7 million listeners, was so important.
Earlier this week I spoke about the power of compelling human stories to bring about change at a health and care leadership event. Anyone who knows me will be all too familiar with my love of stories (or rambling on, as some might put it). Preparing for my talk, I thought about why the telling and retelling of human experiences resonates so much with other people and how we might most effectively use this connection to help deliver positive changes, whether in the health and care sectors, the dementia community, or broader society more generally.
We humans connect to each other through our emotions. As I said to health and care leaders at Frimley leadership and improvement academy, the most common reaction to the talks I give about caring for my parents is, quite simply, thank you. (My mum had dementia, my dad had a series of strokes that left him bedridden, immobile and being fed by a tube in his stomach). I think I articulate, and reflect back to them, my audiences’ and readers’ own attitudes and responses to the difficult times they are, or have been, going through.
It’s my skills as a journalist, a communicator, that allow me to do this. And in so doing I hope to bring about small changes in the way we all think about those with dementia and older people, and how we care for them as a society.
In my early blogs I often used to muse about “joining the dots” – by which I meant discovering people’s stories, making connections and writing them up. This week, for me, has been all about links: from the BBC’s retiring, irascible, yet sensitive inquisitor and his deep, somewhat surprising empathy for Denise Stevens, to the audiences and readers who express gratitude to me simply because I’ve told them openly, truthfully (and hopefully fluently) about what my family and I went through.
We humans are a sociable, tribal breed. We love sharing stories. We love to connect. All I do is to tap into this natural human desire and then ramble on about it.
Of course dementia is terrible – it’s cruel and so far incurable; it’s the condition that those over 55 fear most. But as a campaigner and writer I feel lucky because the people I meet – those living with dementia, their families and carers, and others involved in the sector – are often so inspirational. I am humbled by their resilience, their cleverness, their passion, determination and skill. In my third vlog I pluck out just a few names from the scores upon scores I could mention (to those who don’t feature, huge apologies – but I hope I can interview some of you in future films). Speaking of which, if there is someone or something – an organisation, charity, drama or enterprise – you think worthy of a vlog, do let me know.
But for now, here are a few of my inspirations and below, as ever, is the transcript. Once again, the best way to view the podcast is to click play and then click on the four small arrows bottom right to go to full screen.
Hello, I’m Pippa Kelly and some of you may know me through my dementia blogs and articles. In this series of podcasts I’m going to tell you a bit about what’s happening in the dementia world, and I’m going to focus on the very best practice and some of the inspirational people I’ve met along the way. I’m delighted to say that once again, I’m with my old friend Sue Saville, who has very kindly come along to talk to me about the inspirations, both people and organisations, I’ve met through my work.
Sue: It’s great to be with you again. Some people might think that your work with dementia, and writing about this condition, might be quite depressing, but you’ve not always found it so, have you?
Pippa: No, it can be depressing and I don’t like to try and sugarcoat the pill. You’ve got to be honest about what it is and it’s a really cruel and nasty condition, but I’m always very keen to emphasize that there is a life after dementia. It may be a different life and perhaps a limited life, but there is certainly life after a dementia diagnosis. And the people I meet, who I’m going to talk about today, are people who, for me, show this really well in all sorts of different ways. I’ve broken down the people I’m going to talk about into three categories.
There could only be one choice for the first category and that is of course the people with dementia themselves, the people we’re here to talk about – they are everything that we are here for. The second category is that of people who are affected by dementia indirectly, so that might be a family, or carers – and I’m not only talking about what they do to support the person with dementia, but how sometimes those people will decide that they want to use their experience and do something to make life a bit better for other people with dementia and their families and carers going forward. And then the third category is a cohort of people who I’ve talked about before, and these are the little-known army of people called Admiral Nurses, who are specialist dementia nurses.
Sue: So what about those people, who’s inspired you?
Pippa: Actually, I should preface this whole podcast by giving my apologies to those people I don’t mention because it’s always a bit invidious to pick out certain characters. I have met several people with dementia – we all have of course – but through my writing (and I think perhaps because I am a writer myself) the one person I’m going to choose (and this might be slightly controversial because she’s been in the news already a lot recently) is Wendy Mitchell.
Wendy Mitchell was diagnosed with Alzheimer’s at the age of 58, a young age. Like so many people I meet with dementia she is doing everything she can to show others that there is a life after diagnosis, and she’s telling it as it is too. She has lots of attributes that I think are really important. She uses humour; she uses truth. She wrote a best-selling memoir – it is extraordinary that somebody with dementia is now a best-selling author! Who would have thought that? So, at a stroke, Wendy is diminishing the stigma that still clings to dementia. Stigma comes from people being frightened about something, and ignorant about something, and because they are frightened they don’t talk about it – so the ignorance remains, and then a vicious circle breeds, which leads to stigma. Just by being themselves and putting themselves out there, people like Wendy Mitchell, and so many others I could mention, reduce that stigma. That’s absolutely brilliant.
Sue: Does it in some way break down the fear that the rest of us might have – that there but for the grace of God go our loved ones or go ourselves? Does meeting someone like Wendy break down the fear of what can happen with dementia? She gives you a little light shining inside the reality?
Pippa: Oh absolutely. She gives you tremendous hope but, as I say, without being too “apple pie” about it – she’s very truthful. Her memoir is called Somebody I Used To Know, which is a very clever title. She talks you all the way through her journey with dementia – from the very first inklings that something is wrong (when she trips over a couple of times on her runs) to the practical steps she takes to be able to deal with it once she’s given up work. She describes what she did around the home – taking doors off cupboards, labeling things, using iPhones and iPads as really good reminders, and setting pingers and timers. So in all those very practical ways she provides support for other people. She also reveals the extent to which her daughters were huge in her life and very helpful. This is often the way of course with family members.
But she also talks about two really important things. One is – as in the title of the book – that occasionally, not too much, but through the book, she has conversations with her younger, pre-dementia self, “somebody I used to know”. And that’s where you see that, for all that it takes away from you (she can no longer go for her runs, she can no longer work – it is a sort of succession of losses), at the same time it gives to you. For example, Wendy used to be a very, very busy person. She worked in the NHS all her life and had her two daughters; she did all sorts of things and lived life at full tilt, very fast – just like lots of us do – with no time to stop and think, and just dwell in the moment. Now that she finds herself with dementia, she talks about that. She says that now, “I stop. And I think. And I live in the moment”. We very rarely do that, and there’s something about that – there is something very positive about that.
And I relate to Wendy as a writer because what she decided to do fairly early on was to write a daily blog. Now, I know because I’m a blogger (my blogs seem to get sparser and sparser!) that daily blogging takes a lot of effort. And of course because Wendy has dementia her blog has become her paper memory. She wrote her wonderful memoir with a journalist who, when I spoke to her (the journalist, Anna Wharton) she told me that without Wendy’s blog there was no way in the world that they could have written the memoir because, of course, Wendy wouldn’t remember.
So, for all those reasons, I chose Wendy. She’s a very articulate woman and she’s a very, very good writer. But also, in her book, she tells you about the the fear. She doesn’t shy away from that. There is one very strong passage describing how Wendy became so busy that she didn’t blog for two weeks. She has a way of sort of talking through her fingers. Even now, when her speech is a little slower than it was once, she has a wonderful way of talking through her fingers on the laptop. But because she hadn’t blogged for two weeks, when she went back to it, she had completely forgotten what to do. She sat there in front of her laptop and didn’t know what to do. Eventually, she typed something with her fingers and then she saw the envelope icon and a name she vaguely remembered – I think it was Sheila – and she sent an email. The friend who received it saw a lot of gobbledygook so she emailed Wendy back and said Wendy, this is gobbledygook. Wendy then emailed the friend back but what she wrote was still gobbledygook. So the friend had the foresight to tell Wendy to copy what she typed, which she did and then, slowly, the skill came back to Wendy, but she realized that she could never stop doing it again. And in that lies the seeds of what it’s like for everybody with dementia. Because it is such hard work. At one point Wendy says that you have a choice in a way: you can sit at home on your own and just let it all completely overwhelm you and give up, or you can get on with life. And okay, it’s going to be a different life and there is no cure, but you can still have a very full, rewarding life.
Sue: So it sounds like there are lessons to be learnt then from someone like Wendy that might apply to all of us – life lessons, mental health lessons involving routines, and things we can all do with regards to living in the moment.
Pippa: I think so – very much so. It is this way in which – especially with iPhones and things – we do seem to spend a lot of our life just not enjoying the time, the moment, as it is. Often we’re taking a photograph of the moment as it is, rather than actually living the moment as it is.
I think it’s also something to do with facing our own mortality. I remember once writing about a man who discovered he’d only got six months to live but said that in a weird way this was a sort of gift. It sounds odd to say that. But the knowledge made him stop and think. He’d been a very high level executive and he realised that he hadn’t had lunch with his wife for about seven years. And he just thought, hang on a minute, I now know that I have a finite period (which of course we all have, but in his case it was put in sharp contrast). So he decided that he was going to spend his time with his wife, his immediate family – the first inner circle – then the broader family, then the friends and colleagues, and so on. The moments that he cherished – I think he called them golden moments or precious moments – were very, very simple. They involved doing things like rowing across a lake or something, they weren’t dashing about and not living in the moment. I do hear that from quite a lot from people with dementia.
Sue: That’s an interesting point, that none of us gets out of this alive, this life.
Pippa: Yes, it’s finite.
Sue: And that, actually, perhaps we all need to be reminded of that sometimes, and that’s a very beneficial thing.
Pippa: Yes, and another person I did want to mention who lives with dementia, and who will be remembered, is a chap called Chris Roberts. Together with his wife Jayne (and I often talk about people with dementia and their family carers as being like two sides of one coin because they’re almost inextricably linked, and it can be really tough as well for family members) this couple allowed into their home, for a year, a Panorama crew (a cameraman) and that took immense courage. It really draws on your reserves to allow that to happen. There were several moments during the hour-long documentary when you just thought wow – imagine doing that! So, for example, Chris is a lovely person with a great sense of humour, he is very down-to-earth (very like Wendy actually) and when he was asked what he would advise other people to do in his situation he said, “Take life by the danglies and run with it”. It was by far the best quote of the programme. And that kind of sums up Chris – that’s brilliant.
But at the same time there were some really difficult moments to watch. For example, in the night, when Chris was railing against the disease that he has. And you saw Jayne his wife having to barricade the door so that Chris didn’t wander out in the night. Another really strong recollection I have of the programme is when Jayne and Chris go off in their camper-van. Their camper-van, a sort of Winebago, is great because the surroundings are familiar for Chris, which is very helpful, and the two of them tour all over the place in it, going to conferences and all sorts of things – they are both great ambassadors. Anyway, Jayne is asked by somebody off camera whether she’s thought about taking respite care for her or Chris and she says she has but she doesn’t want Chris to go into any sort of home or anywhere just for a week or something. I remember thinking that that was probably because Jayne thought Chris wouldn’t receive such good of care as she gave him at home, or something like that, which is what I commonly hear. But she didn’t say that; she said she didn’t want to do it because she was worried that if Chris went into respite care she wouldn’t want him to come back. She says this on national television.
Sue: That’s very honest.
Pippa: Yes, you’ve got to be truthful. And I think I’ve said this before to you Sue, if you’re going to do something like this, you’ve got to be honest otherwise there’s really no point. But I thought that was searingly honest and took a lot of courage on both their parts.
Sue: And then that brings us to the carers, fundamental really in the support of those with dementia. How important are they?
Pippa: The person I’m thinking of has become a friend of mine actually: she’s Zoe Harris. Her husband Geoff had dementia and she looked after him at home – they had two teenage daughters and it was all very difficult. Then, towards the end, Geoff went into a care home, and Zoe realized that the carers in the care home didn’t know Geoff’s preferences, his likes and dislikes. This was nothing to do with the medical side of his care; it was to do with small things which normally you would just tell somebody. But of course when you’re getting to that stage of dementia, you can’t communicate so well. So, for example, Geoff liked to have his tea black, without milk, but the carers kept changing and they didn’t know that and because Geoff couldn’t communicate, over one weekend he became so dehydrated that he literally couldn’t walk across the room. This was just because it wasn’t known that he took his tea black. It was so simple. And they didn’t know that he liked his chair up against a wall for some reason, otherwise he became agitated. Whatever it might be, they didn’t know these little foibles, or peccadilloes, or preferences, or tastes – how you like to live your life – people don’t know about these things. And so, at a very simple level, with her husband in the care home, Zoe put a chart on the wall with little facts about Geoff, and the care home thought that it was really useful. They asked Zoe if they could replicate the charts and then, before you knew it, Zoe decided to set up something called Care Charts UK, which were simple charts. Then that became an online version and the idea has grown into an organisation called MyCareMatters which involves creating an online profile of the person with dementia. I know that the latest thing Zoe is doing with her MyCareMatters is to enable people to do advanced care planning, moving towards the very end of life. Of course that is also extremely important for people and it really helps everyone, including the family, those who are left behind. It’s very good to plan the way you want to live your final time.
So, you can see that there are all sorts of people who have been affected by dementia – often through a family member – who then decide that they want to make things better.
Sue: And that’s fantastic, when people share best practice which then brings those benefits to the wider audience. And of course, there’s enormous benefit and support from professionals, and you’ve found out much more about this and done some work with some of these professionals who are absolutely central to the care of some of these people.
Pippa: Yes, absolutely. I haven’t worked with them but I’ve written about them. Often, when I ask people if they have heard of these specialist dementia nurses called Admiral Nurses they look at me and I realise that they haven’t and they don’t know that they’re out there and they can provide so much help – it’s unbelievable.
I wrote a piece about Admiral Nurses a while ago and all the families I interviewed – a good 10 or so families I interviewed in depth – told me that these nurses were Godsends, miracle-workers, lifesavers – but the sad fact was that for a long time there weren’t very many specialist dementia nurses (Admiral Nurses) in this country. To put that in context there are four-and-a-half thousand Macmillan nurses in this country, who have sort of the equivalent role in cancer care, and for a long time there were only about one hundred Admiral Nurses. That was for various reasons.
The important thing about Admiral Nurses is that they focus a lot on the family of the person with dementia, not just on the individual with dementia, and they bring with them a variety of skills. They are really everything from navigators through the journey to really highly qualified nurses – it’s very important that they are nurses, they nearly always have some sort of psychiatric background and a geriatric background. And they are also counselors and advisors. They have so many different roles within what they do. This makes them quite expensive and I think this is partly why their numbers didn’t grow. But a few years ago, some really good evaluation was carried out on the role of Admiral Nurses and it was found that if a family has one of these nurses it reduces the number of acute hospital admissions, so in doing so they save the state money.
Sue: So the health economics kick in.
Pippa: They kick in and then of course, hey-ho, surprise surprise, suddenly their numbers are going up almost exponentially. Having stuck at around one hundred for about 26 years, within the last two or three years they’ve more than doubled – because now their value, not just in human terms, which this was always realised by those who use them, but in economic and financial terms, to the country, is being realised. One of the evaluations took place in Sutton and it was discovered that over the course of one year, one Admiral Nurse saved £300,000. As one council leader (I think it was Sutton Council) said, now that this is known, it is a no-brainer – it is helping at a human level and it saves us money: what not to like?
Sue: To hear about the value that those Admiral Nurses bring is fantastic, and to hear about all the people who inspire you too. But you must have other topics that you’d like to talk about in future podcasts?
Pippa: I have, absolutely, and I’d like to take this opportunity to say to everyone that I’ve done a few podcasts now, they’re out there, and I hope that you’ve enjoyed watching them. Now I’d love to know what you’d like me to talk about going forward. So do put comments on social media or on my own blog and let me know what you’d like me to talk about and who you’d like me to talk to.
Sue: I look forward to those Pippa. Thank you so much.
The Longest Farewell is a hard book to read. It is also an important book with a profound and, against all the odds, ultimately hopeful message.
An envelope arrived in the post the other day from Southampton university. In it was a map – a Map of the Tracks. Intrigued, I unfolded the purple and pink paper to be met by names and places that swept me back to my uni days.
At 49, Liz chose all the music for her funeral. This was very important: the family were able to respect her wishes because they knew what they were – so often loved ones are left guessing. Whenever a song Liz liked came on the radio, she would say she wanted it at her funeral. “I used to joke that her funeral would be like Live Aid with a box!” Ian tells me.
I’ve always had a soft spot for 
Questioning whether the media’s role is a help or a hindrance when it comes to diminishing stigma, I argued that the dementia community and the press could benefit each other. I said it was up to those in the dementia sector to provide the media with strong, human interest stories to inform the general public about the condition and thus help to diminish stigma (which springs from a toxic combination of silence, ignorance and fear).