Pippa Kelly …

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 a 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.

Pippa: Thank you Sue.

I caught a thought-provoking interview on Radio 4’s Today programme yesterday between Nola Leach and John Humphrys.  I missed the introduction so initially didn’t know the reason for it; all I heard was Nola Leach talking about her husband Tony who died a couple of years ago, having been diagnosed with Alzheimer’s disease in 2014.  

Nola acknowledged that Tony’s dementia was brutal but told Humphrys that though it might sound strange, when her husband was diagnosed the pair of them looked on it as “another adventure we were having together”.

Her words reminded me of the first time I met Suzy Webster.  At a London conference this Chepstow-based woman described how her parents had moved in with her and her young family so that they could all share her mum’s “dementia adventure together”.  It was simply put, yet behind the words lay endless reserves of love and courage.

And I also remember Jan Inman who, in the raw, grief-stricken days after her husband died of Lewy Body dementia, described caring for him as a privilege and told me that while nursing Ron in the last three months of his life she fell in love with him all over again.  I blogged about Jan here. 

What strikes me about these women is their extraordinary response to what many might see only in negative terms.  Nola told us that during her husband’s last years as well as experiencing terrible pain (when it all became too much she would run to the loo and sob – how well I remember doing just that when my mum succumbed to the condition), there were also some “incredibly precious” times.

She described how on one occasion, when it seemed as though Tony had completely lost his ability to communicate, he suddenly said, “I love you so much”.  In a wonderfully British way she apologised for the personal illustration – which, for me, only made the whole thing more touching.

During Tony’s last 36 hours, on their 49^th wedding anniversary, he had an hour of lucidity.  They sang together and, somehow realising that he sounded funny, he started to giggle – “and there was a twinkle in his eye that was the twinkle that he always used to have”.  Again, just a few words had me welling up.  I knew just what Nola meant. 

In fact, as I later discovered, she was being interviewed ahead of tomorrow’s parliamentary debate on assisted dying.  Given her experiences, she was not in favour of changing the law, under which someone who helps a loved one to die is regarded as a criminal. 

It turned out that the previous day Humphrys had interviewed the widow of Geoff Whaley, a retired accountant who developed motor neurone disease and, before he died, wrote an open letter to MPs denouncing the current law for robbing him of control over his death. 

Ann Whaley accompanied her husband to the Dignitas clinic in Switzerland where he ended his own life – in so doing she broke the law, leaving herself liable to 14 years in prison. 

Ann made it quite clear during her interview with Humphrys that the decision to end Geoff’s life was entirely his.  She added that, ironically, Geoff was forced to die two or three months before he needed to because to use Dignitas he had to be capable of travelling and swallowing (those using the clinic must be able to take the lethal cocktail unaided). 

Quizzed by Humphrys as to how she felt about breaking the law Ann said though she felt some guilt she believed it wasn’t her that was wrong, but the law for taking away her husband’s control over his own end.   Ann’s view of current legislation is therefore at odds with that of Nola Leach.

But this blog isn’t about the rights and wrongs of assisted dying – a debate so nuanced, personal, complex and controversial that even I would fear to wade in – but about human connections.  As with Nola, the overriding emotion governing Ann’s actions and her beliefs was a deep love for her husband. 

“I have no regrets whatsoever,” she told Humphrys.  “My darling husband – I had him to the end.  He had a good death, in my arms, peacefully surrounded by family and friends”.   

Life can be good.  It can also be unbearably tough – something I really don’t need to tell any family carers.  But even in the bleakest, darkest, most miserable times we occasionally glimpse a flicker of light, feel a smidgen of warmth – a few invaluable words here, a twinkle in the eye we never thought we’d see again, the faintest touch of skin on skin – and we remember what it is to be human, what it is to love.

In my second vlog I share my passion for music and dementia with my childhood friend and distinguished broadcaster Sue Saville.   Join us as we chat about the final precious moments I shared with my mum, why music has such power to connect with people even when their dementia is very advanced and how wonderful organisations and projects are springing up to enhance the lives of those with the condition and their families through music.   I loved talking about this topic – and once again the video is best watched in full screen by clicking on the small four arrow icon, bottom right.   The full transcript is set out below. 

PIPPA: Hello, I’m Pippa Kelly. Some of you may know me through my dementia blogs and articles and in this series of podcasts I’d like to talk to you about what’s happening in the dementia world; I’m going to focus on very best practice and some of the inspirational individuals and organisations I meet along the way.

Today I’m really pleased because I’m going to be talking about one of my great passions: the power of music to connect with people in even the most advanced stages of dementia, and I’m delighted once again to introduce my friend Sue Saville, who’s here to talk to me today. Sue is a very old friend of mine – we’ve known each other for far too many years to mention. She’s also a very respected and distinguished journalist and broadcaster and was for many years ITN’s health correspondent.  So Sue, it’s over to you to ask me some questions about this, one of my really great passions, music and dementia. 

SUE: Well Pippa, it’s lovely to be here with you again and particularly to hear about this passion you have for music and dementia. I understand there’s a personal story behind that?

PIPPA: Yes. Absolutely.  And once again it relates to my mum, who lived with dementia for the last decade of her life. My mum died on Christmas Day a few years ago now and on the Christmas Eve, I received a call to say that she was very ill in her nursing home in Dorking and I should come down from London to see her.   It was Christmas Eve, I was really busy and to be perfectly honest, I nearly didn’t go.  Of course I did go and as I was driving down to Surrey I suddenly remembered that we could listen to the Service of Nine Lessons and Carols from King’s College, Cambridge together. This was probably one of my mum’s favourite things, ever. She loved Christmas.  I arrived in time and turned on the radio. 

Anyone who knows this service will know that it always starts with Once In Royal David’s City, with a lone chorister singing the first verse.   By then, my mum had, for about two months, been lying in bed, immobile, sleeping the whole time, with her eyes shut.  But as the first notes of Once In Royal David’s City came onto the radio she opened her eyes. That’s all she did. She just looked at the white, painted ceiling of her nursing home room but it was very powerful for me. It was very moving because there was a definite connection.   Something definitely happened deep inside her.  We sat there for the hour and listened to the service together and then the following day, Christmas Day, I received a call quite late to say that I needed to come down again.  I drove down as quickly as I could but I arrived just a few minutes too late. My mum had already died, which was terrible. But at least I had this fantastic memory of the time we’d spent together the day before, which was so powerful.  And I’m eternally grateful for that.  Of course at the time I didn’t realise that, quite unwittingly, I’d done a very good thing by listening to music that meant so much to my mum. I had no idea. It was just by luck.

SUE:  Why do you think that this great connection is made with music when other connections in the brain have been lost?

PIPPA:  Well, it’s very interesting Sue.   Two years after my mum died I set up my blog and I began to become far more immersed in the dementia world.  And actually it was thanks to you Sue – I don’t think you know this – because the first outing I had as a blogger was to an event at the House of Lords where Sally Magnusson (the daughter of the late Magnus Magnusson, former presenter of Mastermind) was launching her book, “Where Memories Go”.  In it she talks about her mum Maimie Baird who always loved to sing and the fact that, right up to the very end of her life with dementia Maimie she was able to sing all the words of the songs.  Sally researched why this was and in her book (which is a beautifully written memoir of her mum) she talks about going to visit the late Oliver Sacks, who puts it very well.  He says that the past, which is irrecoverable in any other way, is embedded in music as if in amber, which is a wonderful way of putting it. 

There are a number of reasons why music connects so powerfully.  It’s a bit like a tip-of-the-tongue moment because music connects to various different parts of the brain and there are so many different elements of music – there’s the rhythm, the cadence, the lyrics, the tone etc.  And because of all these different elements, various parts of the brain are used,many neurons are firing and then a connection is made, as it is when you’re thinking of a name and people are firing questions at you – and suddenly that tip-of-the-tongue moment will come and you remember.  And that is what happens with music.  In addition, music connects to the bits of the brain that are the last to be destroyed in somebody with dementia, so they are still working. 

SUE:  And others have taken up this theme of music and its benefits for those with dementia, I believe?  And you’ve come across some of those and work with them?

PIPPA:  Yes, several actually.   One that springs to mind is called Turtle Key Arts.   They use all the arts but they have one sector that is Turtle Song, and I went along to see how it works.  It’s extraordinary because really high level musicians are involved.  They work in collaboration with English National Touring Opera and with the Royal College of Music – so at extremely high levels – and these musicians join with people with dementia and their families and carers, and over the course of 10 weeks they work in collaboration to create a song.  They choose a topic such as holidays, summer, winter or Christmas – but whatever the topic is they all work altogether.  They meet and create a song and then over the 10 weeks they will refine it and then they perform it in front of quite a big audience.  I couldn’t really get my head around the idea until I saw it in action, but it is absolutely collaborative.   The people with dementia contribute just as many ideas about what should be put in the song and the way it should go as the musicians.

SUE: Now, I understand you have a bit of a mission yourself to use music in a way that can really bring benefit to those with dementia and perhaps also other older people, via the radio?

PIPPA:  Yes. Well, this wasn’t my idea. It was at another event at the House of Lords (I don’t spend my entire life at the House of Lords!)  But this was another dementia event to do with music and dementia, and the guest speaker this time with the soprano Leslie Garrett, who gave a wonderful speech. She is patron of a dementia and music charity called The Lost Chord (her auntie Joan had dementia) and at the end of her speech (which was brilliant, she kept bursting into song), as a throwaway remark, Lesley asked if anybody present remembered Singing Together, a radio programme on the BBC. 

SUE:  Which we are far too young to remember ourselves!

PIPPA: Yes, quite.  But, well sadly, I’m not too old and I did remember it.   It was before we met Sue.  I was about eight or nine and I was at school at a convent.  I’ve researched this – I couldn’t remember all about it – but it turns out that on a Monday morning at about 11 o’clock the nun would tell us that we were all going to listen to Singing Together, and she would turn on the radio.  The presenter at the time was William Appleby and he would say a bit about the song (the songs tended to be simple songs with rousing choruses), then he’d sing a couple of bars and tell us to sing it.  So we all sang it – and I can really remember doing that.   And the point was that the programme was introduced way back in September 1939 at the very outbreak of World War II on the BBC’s Schools Service to bring together children who’d been evacuated at the beginning of the war.  The idea was – as the title says – singing together would bring together evacuated children who had been displaced from their families.  Of course, I knew none of this at the time, when I was just eight or nine, but I do remember that sense of community, that you felt that you were all singing together and that all over the country children your age were singing the same words of the same song at the same time.  There was something very sort of “coming together” about it.  And Lesley Garrett’s idea was the BBC should reintroduce the radio program, this time for older people and those with dementia, and I thought that it was a brilliant idea.  Its brilliance lies in its simplicity and I love the echoes of people being sort of displaced from their homes into care homes with the evacuee children during the war. 

SUE:  And they would be the generation who remembers that of course?

PIPPA: The might well be, absolutely.  But the other great thing about the idea is that because it’s a radio programme it doesn’t have to apply to just one sector of the community.   Anybody could listen – it’s for all generations. All you’ve got to do is lean out and press the button on a radio.   Many care homes don’t have very good Wi-Fi and Lesley’s idea is just so simple.  You could have groups coming together, you could have an activities coordinator in a care home making sure that everybody listens or you could just have an old man in his home who wants to listen to the radio and puts his radio on, or you could have mum in a kitchen with a young child who wants to sing at the same time, and they might know that granny up in Derbyshire, who is in a care home or in her home, is also listening. It’s a fantastic connector. 

SUE: And perhaps those benefits could be brought to a wider community, perhaps through something called social prescribing?

PIPPA:  Yes. It’s absolutely social describing.   And this is particularly relevant to dementia because of course, there is no cure. So despite the fact that pharmaceutical companies have spent billions of pounds trying to find a cure, there’s not been much progress, even in terms of mitigating the symptoms.  For some people at some points of dementia, some drugs might just slow it down a little bit, but there’s no cure so dementia is a condition for which social prescribing is absolutely brilliant – whether it be through gardening, the arts, poetry or reminiscence work, but particularly music because there are these neurological reasons why music is such powerful connector. So I’m very pleased that in the current Health Secretary Matt Hancock we do seem to have somebody who believes in social prescribing, who understands the value of other ways of going about things that don’t involve drugs, which is great in terms of dementia.  And yes, if we can push forward and use music in a way that will really help people with dementia I think that will be absolutely wonderful.  We do seem, hopefully, to be doing this, which is absolutely great.   The Government have some other distractions on their mind at the moment but I’m really hopeful about this because I do think that traction is being gained now, so that’s very good.

SUE: Well if I know you Pippa, perseverance is your middle name and with you behind this, the idea should really get some traction. I saw that perseverance when you’ve got your book Invisible Ink through to publication and I’m sure you’ll take this all the way.   It’s been absolutely lovely hearing about this passion and there are others you’d like to talk about as well. I understand?

PIPPA:  Yes. Absolutely. There’s so much to talk about.  For my next podcast I’m going to talk about some of the inspirational individuals I meet along the way with my dementia work.  It’s interesting because often, when people hear what I do, they think it must be very depressing, but actually it’s quite the reverse.  My work can be very uplifting and inspirational – and that’s what I’m going to talk about next time.

SUE: I really look forward to hearing about those individuals. Thank you so much.

Welcome to my very first video podcast – or vlog!  It’s the introductory episode of an occasional series and in it I chat to my childhood friend, distinguished broadcaster and journalist Sue Saville, about my family’s dementia story.   (Best viewed, if you can bear it, in full screen, by clicking on the four small arrows to the left of the word “Vimeo” in bottom right hand corner). 

And once you’ve watched it, do feel free to leave me a comment or suggest who or what (in the way of dementia organisations, charities, social enterprises etc) you might like me to talk to, or about, in future. 

And here is the transcript of my chat with Sue: 

PIPPA: Hello, my name is Pippa Kelly and some of you may know me through my dementia blogs and articles and in this series of podcasts I’d like to talk to you about what’s going on in the dementia world, about best practice,and some of the really inspirational and uplifting stories that I cover in my blogs and articles.

I know that it’s extremely sad that, despite the fact that Alzheimer’s was actually discovered well over a hundred years ago, and despite the fact that pharmaceutical companies have spent millions of pounds trying to find a cure for dementia, as yet very little progress has been made and there is very little medication that  slows down the symptoms of dementia – or, there are one or two drugs that do so if taken at certain times by certain individuals.   But – and this is important and this is the good news – there are so many ways in which the lives of those with dementia and their loved ones can be enhanced, and it’s those ways that I’m going to concentrate on in my podcasts.

For the first one I’d like to tell you a little bit of background about myself and why I became so interested in dementia, which was because of my mum Kay Kelly who for the last decade of her life lived with vascular dementia. 

I’m delighted to say that here today to talk to me about my mum and my family, and all the experiences that we went through with mum’s dementia – and what set me off on this journey – is a very old friend of mine called Sue Saville.  Sue is a distinguished journalist and broadcaster; she worked as ITN’s medical correspondent for many years.  But today she’s here because she’s a very old friend of mine and she knew my mum, my family and the house, Robinwood, where we all grew up, which is very integral to my mum’s dementia story  Sue is here today to put me on the spot, talk to me a bit and fire questions at me.  So, hello Sue and thank you very much for coming. 

SUE: Thank you Pippa.  I’m delighted to join you, and having known you all these years and known your family, it’s been quite a journey for you and for your writing.  I was delighted when you won an award for your dementia writing.  And so, it all started with your mum?

PIPPA: Yes, it started with mum and it really began in the early 1990s when her behaviour – she’s always been slightly eccentric I expect you remember Sue – but this eccentricity started to become much more pronounced.  The main thing was that mum refused to move from our house, Robinwood.  Mum came from a very poor background and she loved this house; it was, much to her delight, detached, though it was very modest, with three bedrooms.  But mum refused to move even when it became apparent that because of dad’s health – he had a triple heart bypass aged 78 – that they had to move.  The house was built on a very steep slope with gardens that pitched down to the River Mole.  But mum just refused.   I have two older siblings and when dad became so ill that it was dangerous for him to remain at Robinwood, we children decided it was time to take matters into our hands and come up with a plan to get our parents out of the house.  It was a heart-breaking plan and because I had Power of Attorney, I had to do the wicked deed.   The plan was that I would have to sell mum’s adored Robinwood without her consent or knowledge – I had to sell the house from under her.

SUE: That must have been heart-breaking for yourself, for your whole family, but particularly for you.

PIPPA: It was shockingly terrible.  The sale of Robinwood was to be the beginning of ten really difficult years for me and my family, but the weekend that I’m about to tell you about was hardest of all. 

We decided that my sister would invite our parents down to stay with her and her family in Somerset – something we knew mum that would be only too happy to do.  But the sting in the tail was that when my sister brought our parents back up, she would drive them not to Robinwood but to this new, much more appropriate flat for them which, again using my Power of Attorney, I had bought in nearby Dorking.  

So it was that my sister picked up our parents one Thursday morning, then phoned me to say that the coast was clear and I could come down.  I drove down from London and – I remember this very well Sue – I walked through the front door of Robinwood and the house was still warm, my mum’s coffee cup was still on the kitchen table because of course she thought she was coming back.  I felt heavy with guilt – I remember this feeling of not being able to move virtually.   The only way to cope was to cut off my emotions and get on with what I had to do, which was to pack up this house which had been my home in our teenage years.  You remember it well Sue, we used to swim in the river in our teenage summers.  I had to pack up the house in a matter of hours.  So I just chucked into black bin bags – unlooked at, unopened – the contents of drawers, cupboards and wardrobes.  I resent the fact that I had to do this because I later realised that dementia robbed me not only of my mum but of a chance to say a proper goodbye to my childhood home.  My brother arrived from Ireland later that day to help me.  The following morning the removal lorries arrived and took what furniture would fit into the new flat, which – on the doctor’s advice – we set up to look as familiar and comforting as we could for mum, to make it as easy as possible for her to make this difficult transition.

SUE: That must have been a really horrible scar for your family and desperately painful for your father, your family, yourself and your siblings?

PIPPA: It was, and when mum came back to that flat she refused to go in, she had a sort of hysterical breakdown or, to put it another way, her dementia, until then staved off by being in a familiar home for 38 years, tipped her over the edge and she ended up having to go into hospital – this is very common with dementia if there is a sudden shock such as the death of a spouse or moving home.  Mum’s admission to hospital was itself very traumatic for us as a family, particularly for me.  Because, by chance, mum already had a consultant’s appointment booked for the Monday and I warned him in advance of all that happened over the weekend.  He, in turn, warned me that if mum refused to be admitted to hospital voluntarily, he would have to use the Mental Health Act to section her. 

Mum and I entered the consultant’s room and to begin with mum seemed okay.  But when the consultant started to reason with her that she needed to leave Robinwood she began to get very agitated again, and when he said that he was stepping out to fetch a colleague I knew that this was his signal to me and he was about to section mum in front of my eyes.

SUE: Gosh, that must have been very frightening.

PIPPA:  It was, and I burst into tears.  I’d had a very difficult 72 hours.  Then an extraordinary thing happened because mum saw this and she said quite clearly.  “Well, I will go into hospital then because I can’t upset my baby”.  She always called me her baby because I was by far the youngest of her three children. 

SUE: So the tables were turned and she went back to looking after you.

PIPPA:  She did.  And it was the last time she did that because from then on I had to look after her – and dad. Mum went into hospital for six weeks and then she lived out the rest of her life (eight years) in two nursing homes. So that was how it all began for me and my family.

SUE: So why have you felt the need to write about this, to campaign as you have done so eloquently?

PIPPA:  I think because it became very apparent that what we had been through as a family was terrible, it was very scarring.  We’re an educated family, I’m an educated woman; luckily I had the time to do all of this and I knew that as a trained journalist I could – hopefully – write about it.  I thought about what had happened and I realised, looking back, that I had run a gamut of emotions over that terrible weekend – and as events unfolded.  The emotions that you go through as you look after someone with dementia are many, including terrible grief, which I’ve heard described as the never-ending grief of the dementia carer.  That’s a very good way of putting git because you watch the person you love disappearing, or changing, before your eyes.  Also there is frustration and anger because you can’t do anything to help these people you love – and also because people with dementia have different ways of doing things and it can be quite frustrating and you get angry and irritated and then, looking back, you feel guilty.  You feel guilty about everything.  Another, little-spoken of emotion, which I have talked about publicly is that of resentment.  Because your normal everyday life – in my case with my husband who has his own company so is very busy, my then very young daughter Emily, my writing as a freelance journalist, my socialising – was skewed out of its normal context because I was spending more and more time looking after my elderly parents. 

SUE: You’ve been very honest about those emotions.  When you spoke about it publicly what sort of feedback did you get from other people?

PIPPA:  They were thankful, I think.  They thanked me for saying that I felt resentful because they had never wanted to admit it even to themselves.  I realised when I set up my blog – blogging is a much more personal way of writing than writing for national newspapers – that I had to be honest.  There was absolutely no point writing about all this if you were going to paper over the cracks or pretend that everything was alright when it wasn’t.  You had to be quite brutally honest about it.

SUE: But you could perhaps only do all this once your mother had eventually passed away because then the grief that you described, when she was disappearing before your eyes, was fading and you were finally able to have that closure and move on with the writing?

PIPPA: Yes, there was a two-year gap.  My mum died in 2012 and I set up my blog in 2014.  It may be different for other people but I think I needed that barrier between this very raw emotion that I was experiencing – you are in the middle of a maelstrom of emotion – and it probably wouldn’t have been great to try to write about it then.  But with a little bit of distance you can begin to gain a bit of perspective, you can start to extrapolate and think what actually was going on at the time.  A lot of people who are caring for relatives say that they can’t really see beyond the next hour or two – that’s the way it goes when you’re caring for people.  With a bit of distance, I was able to write, and the two things – being a trained journalist and having this real passion because I had been through so much – came together and this connected with people.

SUE: Do you think there’s been some progress, that things may have become better?

PIPPA:  Yes, it’s very interesting because I realised that I was an ingenue to all of this. I entered the scene when I set up my blog – which wasn’t intended to be all about dementia by the way, it was just that it quickly became apparent that people wanted to read about dementia – I was always well aware that I had stumbled into this world and others had been in it, through social care or whatever, for twenty or thirty years, for their whole career.  Whereas I was an upstart who had really only started to write about the subject because of my mum.  So I would ask people if they agreed that there seemed to be a shift going on in the whole social care around dementia.  And they did.    That was 2014.  In 2013 the first dementia summit was held in London and there was the whole dementia friends programme.  A lot of people feel that this is a bit tokenistic but these are important movements and it takes a long time to achieve social change.  Then there is the soft power of culture – suddenly virtually every radio and TV programme had a dementia storyline, often very well done and properly researched.  So I saw that things were changing all around me, as well as in dementia care itself, with the sort of things that were being done.  As soon as I realised this I made it my job to seek out these positive stories.  People would often ask me whether it wasn’t depressing writing and talking about dementia and I would tell them it wasn’t – that actually it can be very inspirational and humbling to learn about what people are doing.  Often individuals who have been personally affected by dementia in some way decide to set up charities or social enterprises to make life better for those with the condition and their families.  I saw that a lot was being done and a lot of progress has been made in the last few years – very late in the day – but it’s being made.

SUE: You’ve got a lot to talk about.  You’re going to do some more podcasts.  Could you touch on some of the areas that you want to develop and talk about in future.

PIPPA: Yes, anyone who knows me in the dementia sector will not be surprised to know that the next thing I’m going to talk about is a great passion of mine and that is the great power of music to connect with people even when they are in the very advanced stages of dementia.  Again, there is a personal story involving me and my mum that I will talk about.  But I knew nothing about the power of music for those with dementia when this poignant experience occurred with me and mum.  But I do now and there are neurological reasons for that, which I shall talk about.   Also, there’s a campaign that I am still pursuing, which is to get the old BBC radio programme, Singing Together (which was for schoolchildren), put back on the airwaves, this time for older people and those with dementia – or for anybody.  The whole joy is that it could be for anybody, but I think it would be hugely beneficial for older people who are often lonely and for people with dementia.  

SUE: With that passion and that determination I think there are great things to talk about there.  Thank you so much Pippa.

PIPPA: Thank you Sue – it’s been great.