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.