Woman's Hour - Reshma Saujani, Wendy Mitchell, Fern Champion

Episode Date: March 11, 2019

We speak to author Reshma Saujani about the idea that girls and women are brought up to be perfectionists while boys are expected to be brave. Wendy Mitchell was diagnosed with young on-set dementia at just 58 years old. Before the diagnosis she was known for her sharp mind and organisational skills, both at work and as a single mum to two daughters. She talks to Jane about how she copes with the disease which steals her memories and why she wanted to write her memoir Somebody I Used to Know for the woman she once was and as an affirmation of the woman dementia has seen her become.A woman who was raped three years ago has decided to waive her anonymity so she can call on the government to provide more support to people like her. Fern Champion has set up a petition and written to Theresa May saying that rape counselling must be available to anyone who needs it, wherever they live. When Fern wanted support she couldn’t even get on a waiting list. She was told a funding shortfall was stopping her getting the help she needed.About one in everyone one thousand women experiences Post Partum Psychosis - the rare but very serious mental illness that can occur in the first few days after having a baby. Claire and Aiden, from Leicestershire, have two children and after both births Claire had Post Partum Psychosis. We hear how it affected them as a couple.Presenter: Jane Garvey Producer: Helen Fitzhenry Interviewed guest: Reshma Saujani Interviewed guest: Wendy Mitchell Interviewed guest: Fern Champion

This BBC podcast is supported by ads outside the UK. I'm Natalia Melman-Petrozzella, and from the BBC, this is Extreme Peak Danger. The most beautiful mountain in the world. If you die on the mountain, you stay on the mountain. This is the story of what happened when 11 climbers died on one of the world's deadliest mountains, K2, and of the risks we'll take to feel truly alive. If I tell all the details, you won't believe it anymore. Extreme, peak danger. Listen wherever you get your podcasts.

BBC Sounds. Music, radio, podcasts. Hi, this is Jane Garvey and this is the Woman's Hour podcast from Monday the 11th of March 2019. On the podcast today you'll hear from Wendy Mitchell, both at the start of the programme and at the end of the podcast as well. Wendy has early onset dementia and she has a memoir called Somebody I Used to Know. She's a brilliant

brilliant speaker and you will really enjoy her wisdom today i promise you also on the pod white girls need to take more risks and learn to fail this is all about women in tech or the lack of them really and how all of us need to be prepared to fail perhaps in public because it will make us better people and ultimately more successful. That's the theory. You'll hear more about that later. And we also have one man's view of a terrifying condition, his partner's postpartum psychosis. That's all in the podcast a little later. So to Wendy Mitchell, welcome to you, Wendy. Thank you. So lovely to chat to you. Now, you were diagnosed with early onset dementia when

you were just 58. That's right. At the time you were an NHS manager and a mum to two daughters as well and I know that your daughters have been absolutely brilliant and a huge help. Yeah I'm very biased but yes they have. You can be biased that's all right. Now your memoir is called Somebody I Used to Know and I've got to ask this. People will be thinking, how has somebody with dementia written a memoir? So how have you been able to do that, Wendy? Well, with the wonderful help of the writer, Anna Wharton, people had often asked me to write a book before. And I'd always said, well, I couldn't write it on my own because I'd write the same thing on every page. So with Anna's help, she taught me so much about writing. And we worked our way over a year through to writing the book. Now, when you first began to notice that you were

changing, what was it like for you? It must have been a terribly confusing time. Well, dementia never entered my head because like so many other people, I thought it only affected older people. And so I thought maybe I had a brain tumour or something drastic like that. So when dementia was first mentioned, that was a bolt out of the blue.

But strange enough, when I did get that diagnosis, I was actually relieved because it finally put an end to all the ifs, the buts, the maybes, and I could start planning my future and I knew what I was dealing with. But when you were still working, the passages in your book about that period of your life, from my perspective, they're very frightening, because you were doing your best to fight against it, weren't you, to carry on? Well, I was also hiding it. You'll often find that people with dementia are very good at hiding things

because I didn't understand then how much life I still had. So it was very difficult to solve everything around dementia as well as working it was like a overload of information coming at me you would put your computer on every day as we all do when we get to work and you'd look at it and you'd think no this isn't making that's right, That was very frightening. And again, I used to hide it because I used to go in very early to give myself time to simply log on, which sounds crazy.

But those were the lengths I went to, to try and hide what was happening to me. Now, in a way, your diagnosis of dementia has, it's had a profound impact on your personality because I gather you were not a particularly outgoing individual. No, I wasn't. My daughters just laugh their socks off when they hear all the things I'm doing because I was an immensely private person. I would never have done this in a million years back then. But I was so,

I was so shocked at the lack of awareness and the lack of understanding. And dementia actually helped me to become this gregarious alien that I am now compared to the person that I was. Can we acknowledge though just how frightening it can be when that fog descends on you? Oh absolutely. I know I come over as very positive and always look at the good things, the positive things but it's a bummer of a diagnosis to get. And when the fog descends, nothing around you makes any sense. All your surroundings are alien. The time is alien. The people are alien. And my motto is always never to panic because if you panic the distress gets ten times worse

and I just sit and wait for that fog to clear. But where might you be? Oh, I could be anywhere. When I was at work it happened when I walked out of my office and i didn't know where i was who all the people were who the voices belonged to that were actually my team and so i simply hid in the washroom for several minutes knowing those words ringing true in my ear and not to panic. And are those fogs happening more frequently now?

They happen differently because as the disease has progressed there are different challenges every day. But I always look at it a bit like a game with dementia and I don't like losing so I try and play this game with dementia that I'll outwit you first before you throw anything else at me Can that mean on a practical level things like post-it notes and little guides to getting up and when you should eat

That's right, people forget and little guides to getting up and when you should eat and all that. That's right. People forget. People think that I just turn up out of the blue to places like this. Well, yes, exactly. But the immense organisation that goes into getting anywhere, I call it all my Sudoku because it keeps my brain challenged to different environments different conversations and i truly believe that that has prevented me from progressing more quickly just just to nail

down exactly let's take you through the experience of getting here today then yeah because here you are you're you and i are live now we're in a room on our own on national radio. I can't believe that you've been able to do this. How have you got here today? Well, I have the help of wonderful people to sort out tickets and things like that for me, the practicalities. But I always print out pictures of where I'm going I always print out what stations

I'm going through so I know that I'm on the right train when I forget am I on the right train and and I have alarms going off all day long telling me time to get up, time for the taxi, time for etc. So I'm very lucky because I was always highly organised before dementia and that has enabled me to cope with dementia far better than if I was not an organised person. I haven't had to learn that new skill. Now I know that you also live alone and you were a single parent for many years so you were used to well a ferocious independence actually that was that was your sort of watch words your ways of living. That's right and I'm

still that independent person but I just have more support now from my daughters outside of my home. Does it help to be single at this time in your life? Well, I always say, again, I'm so lucky to live on my own because I don't have to worry about upsetting someone else, about someone else, a husband, seeing me turn into someone that I he didn't marry and because that must be very hard for couples but also it means that I have to find a way whereas if you're in a couple the the wife for instance will often do things for the husband for the kindest of reasons.

But actually, if we don't do something every day, we forget very quickly. And then you have to do that one thing for all time. So I always think it's better. What does it matter if I take an hour to put on my coat if I can still put on my coat that means you can do something else in that time and your home is it um is it dementia proofed in some way well I try I make adaptions every time dementia throws something at me so when I first moved in I I couldn't work out which house was my house. So I'd go up my neighbour's path and try and let my...

That's how I met them. One way to make friends, isn't it? Yes. But they've been wonderful since they found out. Now, I was going to ask you about this. On the whole, how have... Let's talk about strangers. How do strangers treat you?

Well, until I had my walking stick, strangers are very cruel because we have an invisible disability. We look, we can look totally normal. And so people don't understand if we're holding them up in a queue because we can't work out the money. They don't understand if we can't get through a door quick enough because there's a black mat that looks like a hole. So people simply don't see that there's anything wrong. And bizarrely, as soon as I got my stick, because I now have such a wobble,

people have been immensely helpful because they've seen that practical thing next to me. But I know that you, for example, your local cab firm... Oh, yes. I know, and I for example, your local cab firm. Oh, yes. I know. And I'm a, I don't totally relate to this. You'd worry a bit if the cab didn't turn up. Oh, yes. But you've just gone in now and you've told them, look, I've got dementia. Yes. I, I, they, they used to sigh. I used to hear the sigh on the other end of the phone every time I rang because I didn't know if I'd forgotten to book it.

So I went armed with goodies and chocolate biscuits and goodness knows what for them and explained why. And then since then, they've been wonderful. And they always help me if my train is late and things like that. So as long as you talk to people and tell them, then they know how they can help you. And you work for the Alzheimer's Society. Yes, I'm their ambassador. You're an ambassador, as people are learning. And I'm looking at our Twitter feed, Wendy, and people are loving hearing from you. You are a wonderful speaker. And I have learned such a lot just from hearing you describe the way you operate.

You are going to carry on doing this work, aren't you? Oh, yes. I'd rather die of exhaustion than dementia. And I know you've also said, and so it's painful for people to hear this, but you have said this and it's in the book that you want to donate your brain. Oh, yes. Because there is something truly miraculous about your brain clearly well you know why i always think why wouldn't i because if it can help future generations not have this inevitability that a diagnosis currently brings

how wonderful would that be for future generations? It's been fantastic to learn from you, Wendy, and I'm delighted to tell everybody that you are going to stay and you'll be in the Women's Hour podcast, which we'll do in about 45 minutes. So you and I can have a longer chat then. And I'm looking at the tweets. People really have enjoyed hearing from you. That's very kind. Thank you so much. And I know, I think, Wendy, you'd be happy to answer questions, wouldn't you? Oh, yes. If people have just got a question they are burning to ask somebody who's got dementia and speaks as clearly and as brilliantly as Wendy, please do ping them into us now on Twitter at BBC Women's Hour. And Wendy and I will talk through them in the podcast available later. Thank you so much, Wendy. Thank you. Now, to a young woman who very sadly was the victim of rape three years ago,

and she's waived her anonymity to call on the government to provide more support for people like her. Fern Champion was attacked when she was abroad, and when she got back home, she tried to get specialist help but couldn't even get on a waiting list. She was told there was a funding shortfall. Now, nearly 128,000 people have signed Fern's petition calling on the government to provide rape counselling to anybody who needs it. I spoke to Fern this morning and to Rebecca Hitchen who works for End Violence Against Women. She's the campaign manager there. Before that she had worked for Rape Crisis. Fern told me what had happened when she initially tried to get help. I was told that I wasn't able to access any support. I first tried to in August 2017 when I first returned to the UK. I tried to

access a rate crisis and they just said that they weren't able to help, that their waiting lists were closed. I tried a few different centres and it was the same story every time I tried, over a period of eight months. What did they say exactly? They were very kind on the phone, but they just said that their waiting lists were closed and they encouraged me to try again in a couple of months and they would hope that the situation would be different, but each time I did

try it was the same story. And you say tried it can't be easy to pick up the phone and ring up an organisation like that and ask for help that's that's a tough thing to do. Yeah absolutely not and I want I think it's important to to state as well that I spent my year in New Zealand on a waiting list as well like I tried to access help as soon as I got there as well that I spent my year in New Zealand on a waiting list as well like I tried to access help as soon as I got there as well so I had spent the entire time since my attack trying to access help in one way or another and each time being told that I wasn't able to access it um what what happens if you go to your GP for example i did try that as well um and they were directed me to the same the same services that i was already trying to access so it didn't really

matter which avenue i was going down everyone was telling me the same thing that they weren't able to help because the funding wasn't there now in your case um help came from an unlikely source in some ways explain Explain what happened. So the last time I tried to access a rate crisis service was around this time last year. And for me, that was when I hit my rock bottom. I felt like I'd been... That was the last time I was turned away.

And by that point, I just felt like I'd been going on too long by myself and everything just kind of, of like crashed in on me. Just explain what life was like, if you don't mind. So by that point, it'd been nearly two years since my attack. Up until relatively close to that point, I felt like I'd been coping relatively well, you know, like to the outside while I was relatively relatively like high functioning like I was still like maintaining jobs like friendships relationships but each time I was denied help it was like my mental health started to spiral

a little bit more because it was becoming more and more apparent to me that there was no help available but I needed specialist help I was under extreme stress I wasn't sleeping very well I was having nightmares and like these nightmares started to creeping into like my waking hours as well you know I was having flashbacks I was experiencing symptoms very similar to PTS or PTSD I didn't know that at the time but that's why I was reaching out to these rate crisis services. So in March last year, when I tried for the last time to access this help and I was told that I couldn't get it, that's when, for me, I just plummeted. I didn't know where I was supposed to turn. It was a really, really scary time.

And luckily for me, I did feel comfortable to confide in my employer, not to ask for help, but because I just didn't know what else to do. My migraines were... I've always had quite severe migraines, but these were beyond manageable. Like, I was having them weekly and having to have quite a lot of time off work sick for them, so I knew I had to say something because I was too terrified to leave the house. So I just said to my boss at work, I was just like, look, this...

You said or you spoke or you... I emailed, I just emailed my boss and I was just like, look, I can't... I knew I had to be honest, but I just didn't know what else to say. So I just said the truth. I was like, look, this is what happened to me. This is what I've been trying to do ever since and I don't know what to do anymore I don't know where to turn I've just spoken to rate crisis again and they're telling me they can't help me I don't know what to do luckily for me she was kind and compassionate but she went above and beyond that and put me in touch with

a private trauma therapist and arranged for my employer to pay for that because that's something else that um people need to understand as well is that um and I have had some like a small amount of backlash since um since this campaign's kind of come out in the last couple of days of people being like well why couldn't you just go to a private trauma therapist yourself and i i couldn't do that and so like my employer doing that for me was just so much more than i ever expected and how much of a difference has that counselling made to you a huge amount and in the long term know, it's enabled me to kind of carry on with all of this. Actually, there is no way that you'd be able to take charge of this campaign.

But this isn't easy. I'm sure it isn't easy. And of course, you shouldn't be here doing this because it should never have happened to you in the first place. And I think that's a point we all need to acknowledge. But we know, Rebecca, from the figures that I think your organisation has assembled, that there are thousands of people waiting for counselling. Why? Why are there so many? It's over 6,000. Yes, it is. I think in March of last year, there were around 6,350 survivors on waiting lists across England and Wales.

And how many are being counselled? I'm not sure of those figures. But what I do know is that specialist sexual violence and abuse support services like Rape Crisis have been asking for more funding for an incredibly long time. Historically, they've been extremely, extremely underfunded. Where does that funding or where should that funding come from? So there are various sources and this is one of the things that we wanted to highlight in this campaign. We did a survey last year, a YouGov survey that revealed that the majority of people think that there is a readily available access to specialist support. They just make that assumption. Yeah and that's understandable but actually when it comes to it, as Fern has sadly discovered,

because there is this failure to fund services, it means that provision is quite inconsistent and patchy across the country. So they are scrabbling around, in effect, pulling on different funding sources. What are those funding sources? The Ministry of Justice provides some core funding, but that's set to change and it's set to be devolved. Police and crime commissioners sometimes give some funding. Sometimes there's funding from clinical commissioning groups,

charitable trusts, foundations give some, and local authorities as well provide some. So a lot of centres will be just trying to pull in as much as they can from different sources. But that isn't enough. And we've seen this huge sort of movement of survivors feeling maybe more able to talk about their experiences and try and access support. And they deserve to. They have that right to specialist support.

We're seeing reporting to police go up year on year. I think last year there was a 15% increase in reported rapes to the support. We're seeing reporting to police go up year on year. I think last year there was a 15% increase in reported rapes to the police. But we shouldn't be in a situation where victims of rape like Fern have to go public and actually she has to come here and talk to me about it. We shouldn't be here. Absolutely not.

And I think it's just testament to Fern's strength and courage that she's able to. And she has advocated for herself such an incredible amount to access any form of support and be here today and most survivors aren't able to do that when we think about more marginalized survivors who are out there unable to access the support because of failure to fund. You heard there from Rebecca Hitchen of the campaign to end violence against women and also from the very brave Fern Champion and I think she's doing a really good job and if you need support with any issues relating to what was discussed there go to the Woman's Hour website bbc.co.uk slash womanshour.

Tomorrow, we're going to focus on LBT Women's Health Week. This is about raising awareness about lesbian, bisexual and trans women's health inequalities. And on Wednesday, we've got a parenting conversation for you, as usual. This week, it's about what you do if your child struggles to keep or acquire friends. That can be really tricky if you know your child's having a tough time in the playground or indeed these days on social media. How do you cope? How do you help them?

That's on Wednesday's edition of the programme. Now to Reshma Sojani. Welcome to the programme, Reshma. A phenomenal woman, the founder of Girls Who Code, which is working to close the gender gap in tech. That's right, isn't it? That's right. The author of a book called Brave Not Perfect. We'll talk about that in a minute.

And the first Indian-American woman to run for Congress in 2010. We don't have a huge amount of time. You've got a lot of important stuff to say. So we'll just say that when you ran for Congress, you didn't win. No, I didn't. In fact, you lost fairly spectacularly. But what is brilliant about it and what's brilliant about you is that you've owned it. Yes, it was the best thing that ever happened to me.

It was the first time that I was brave. You know, before that, I had done everything right, went to the right schools, you know, worked at the right places. And I was miserable. I would come home every day in the fetal position. And I remember my best friend called me and she said, just quit. And I did. And I decided to run for Congress. I lost miserably. I was broke. I was humiliated. People were laughing at me. But the first thing I thought when I woke up the next morning was, I'm not broken. I am not broken. And it was the beginning of living my life brave, not perfect, and not living a life of perfection and unlearning it. Now, your theory is that girls and boys are brought up differently, are treated differently,

that girls are encouraged to achieve absurd heights of perfectionism. Boys are encouraged from a very early age to take risks. Now, why do you believe this to be the case? Well, look, I think that we are always trying to protect our girls. Be careful, honey. Don't swing too high. Your shirt's dirty. Give that toy back. Don't be mean. And all of that, you know, coddling and protection makes us addicted to perfection. And we start giving up before we even try. You know, studies will show that women will drop out of a major if they get a B instead of an A, whereas boys are like, I got a B, that's amazing.

And you see all this perfectionism as women, it's making us unhappy. We are twice as likely to be depressed than men. And secondly, it's making us feel like we have to be perfect until we lead. And you look at the representation, whether it's in Wall Street or Silicon Valley or in Congress, right? You're not seeing this.

And there's a quote that I talk about in my book, like, if life were one long grade school, girls would rule the world. But in the real world, it's bravery that matters. This is the interesting thing. So in this country, for a long time now, girls have outperformed boys in the exam system. But you're right.

Then they enter the real world on equal pay, for example. Sometimes tough for women to get promoted. Then they will insist on having kids as well, a lot of women. And that can have a massive impact. Absolutely, because we have so much mommy guilt. Everything has to be perfect. I can't buy store-bought cookies to my child's birthday party. I can't take a moment for myself to go for a walk or to exercise because my baby needs me.

So some of this we're doing to ourselves, or is society making us? Oh, I think society has set the standards of how women should behave, and we're falling for it. And I think that we have to take our control back of our own lives. The Girls Who Code organization is all about, and it's much needed in this country, as I said at the beginning, it's about trying to close the gender gap in tech. But I looked at the statistics for girls taking computer science A-level, and they are only 10% of the total taking it. And this is in 2018, 2019. It's huge.

I mean, less than 20% of the technology workforce is female. It's actually the numbers are worse here than they are in the United States, which is crazy. And it's also happening at a time where so many people in this country desperately need good paying jobs. And it's technology jobs that are the future, right? And these are the opportunities that women are going to use to kind of code the future and build the future. So I think it's an enormous opportunity to teach girls how to code in the UK. We are bringing Girls Who Code to the UK, which I am so excited about. When's that happening? Well, we are in the process of it. We were launching about 50 clubs. We are bringing Girls Who Code to the UK, which I am so excited about. When's that happening?

Well, we are in the process of it. We were launching about 50 clubs. We want to launch hundreds, thousands. And we have so many wonderful partners that we're going to be working with. And the coding, I mean, in a really simple, simple terms, coding is what? Telling a computer what to do. Simplest form. And kids pick it up at school or will be taught it routinely well see oftentimes we're teaching our kids microsoft word right instead of instead of telling a computer what to do and so we are trying to like push that every child learns how to code at school the way that we're going to be operating here in the uk is by launching after-school programs so girls will get

together still are available already, I should say. Yes, absolutely. And, you know, so, but there is something about girls coming together and learning together and failing together. It goes back to my book. So many girls think, well, coding, that's hard. I can't do it. I'm not good at math. I'm not good at science.

And so to be able to be in a collective of girls and be able to fail together, to be able to ask questions together. You know, one of the things I talk about in my book is that a computer science teacher told me that when boys are struggling with a computer science assignment, they'll come into his office hours and they'll say, the computer's broken. The computer's broken. Not me. It's the computer. And women will come in and they'll say, I'm broken. Because we always think that, you know, we are not good enough, right?

That we can't do something. And that's why I think that I'm on the mission to build bravery. Bravery is a muscle. It is literally a muscle. And we have to practice it. I would say you can't be, you know, you can't be brave if you're tired. We need to rest. We need to practice imperfection. We need to do things that we're mediocre in. We need to just start. Yeah, but one of my sayings for ages has been, let's get more mediocre women to the top. I couldn't agree more. I hope to be one of them.

But you talk too, and I think this is important, about being liked. And it's a relatively brief reference in your book, but I think this is really important. Men don't really care whether they're liked or not. No. Women, not the same. No. I mean, has your husband or your partner ever come home and be like, Jerry doesn't like me? But you know what it is? And this is why I always say

there's so much, we also have so much drama amongst us as women, because oftentimes there's things that we want to do, right? Maybe a business we wanted to start, maybe a second kid we didn't want to have. And we convince ourselves out of it. And then we see someone else doing the very thing that we told ourselves that we cannot do, and we are left with regret and envy. So I always say to women, go to where your regret is. Go to where your envy is. That is where you need to live. And when you don't have that, when you don't have a life full of regrets, right, you are so much more open and generous with your contacts, with your relationships, with the way that you feel about one another. And that's how men live, quite frankly. They do the things that they want to do. They don't tell themselves that they aren't good enough, that they are not strong enough, that they're not smart

enough. And society doesn't tell them that either. No, that's really important. Reshma, thank you very much. I hope you can do some do some filming for us us and we'll put it on Instagram because I think we need some of these nuggets out there for everybody to enjoy. Absolutely. Thank you so much, Jane. Really great pleasure. Thank you. Reshma Sajjani. And if you don't follow us on Instagram, you need to start doing it. It's at BBC Women's Hour. Loads of good stuff for you there. Now, almost one in a thousand women experiences postpartum psychosis. This is such a serious mental illness that can occur in the very first few days after you've had a child. Now we have discussed in the past the experience of postpartum psychosis on the women involved but what about the rest of the

family? Claire and Aidan are from Leicestershire, they have two children and after both her children's births Claire had postpartum psychosis. Now when she had her first child Claire had had a long labour, she had an emergency caesarean section and then her son was taken to the neonatal ward with an infection. Here she is telling Henrietta Harrison how she felt when she first came out of the operating theatre. I actually believed that I was being wheeled off into heaven. I thought I'd died because I'd had such a frightening traumatic experience and when I was in the recovery room and nurses were coming up to me I would see their faces would become really distorted and very scary.

I was having hallucinations so I could see things moving across the room. The medical staff had convinced Aidan that he should go home, get a shower and come back again. But I think the fact that he wasn't there and that obviously my baby wasn't there for that period, due to the psychosis, was really, really scared me as well, that I didn't have anyone with me. Aidan, so what do you remember of that time? I literally nipped home had a shower come straight back and I remember when I came back being quite alarmed at how she was and that she was starting to say things I can't remember exactly what but I remember questioning what she was saying and that she wasn't quite sure where Raphael was where you know what happened to the baby what was going on, why he wasn't there, whether she'd had the baby, whether she was still pregnant.

So alarm bells were ringing at this point. So what happened next? So there was very much this kind of watching brief of we want to eliminate that there's a physical cause for these thought disorders. So there wasn't any treatment initially and that kind of rumbled on for quite some time really so Raphael was upstairs in the in the neonatal unit looking three times the size of all the prem babies because he was huge nearly nine pounds and actually you know I think you did say that kind of played into your psychosis as well that he looked so yeah that was part of my psychosis so we went to see him and then part of my psychosis was, because he was obviously in his incubator,

that I believed that he was like growing and growing and becoming this like enormous and giant baby in comparison to all the other little prem babies that were in there. And obviously a lot of the psychosis beliefs are very, very strange, but that's obviously one of the ones that we look back and laugh about, I guess. So you'd been going to the NCT classes, you'd been planning a home birth or a water birth. I mean, this obviously bore no resemblance to the expectations that you had. So how were you feeling, Aidan?

There was a number of things that were difficult, really, because, you know, I was constantly having discussions with psychiatrists and sort of begging them really to admit her. I wasn't really able to see my son a great deal in that week and obviously I was really scared of what was happening to Claire and one time I had to restrain her and no one else would restrain her, they wouldn't be allowed to, and that went on for quite a long time. And eventually, whilst I was restraining her, they got consent to administer some medication.

But then that had the kind of almost opposite effect and she was left in quite a kind of zombie-like state and to completely remove. So it was all quite frightening. And there was only really a couple of times when I'd seen our son in all of this time, really. But every time I did, I went over once and sort of changed his nappy, held his hand and sort of sat with him for a bit and talked to him,

which was really lovely and it's kind of all I wanted to do. But as soon as I sort of came out of the ward, because it's on the other side of the hospital, I turned my phone on and it's full of messages saying, you need to get back here, Claire's smashing everywhere up, she's calling out for you and wondering where you are and all those things. When did you finally get to be in the ward that you should have been in? It got worse before it got better, really, I guess.

I mean, so eventually all kind of physical, possible physical causes for Claire's thought disorders were ruled out and she was admitted into a psychiatric unit, which is a different hospital. At that point, she was so poorly and so volatile that they said she wasn't able to be admitted into the mother and baby unit. There were other babies on that unit,

and they were fearful that, you know, there might be some harm. And then the psychiatrist in the end sort of stuck her neck out and said, the only thing that's going to work for her is the mother and baby unit. So after two weeks, she was then admitted to the mother and baby unit and Raph was brought to her. And I remember that moment that when he first came in, I first brought him in and she'd been in the mother and baby unit being settled.

And she really did kind of instantly, you saw it all sort of pouring out of her that she instantly calmed and kind of just had him on her knee and sat with him. And it just made such a huge difference. It would be impossible to kind of overstate the value of being able to have that concept, because essentially she'd had two weeks where she'd hardly seen him. Do you remember that moment, or not? I remember when he was brought to me in the mother and baby unit, and how everything kind of made sense from there, really,

and just the kind of relief made sense from there really and they're just the kind of relief at being reunited with him and that kind of feeling of okay I have my baby I'm reunited with my baby I know what I need to do now and then I was able to focus on Rafi and his needs and Aidan teaching me you know what it was that he needed and at what times and of the day and showing me all of that the the opportunity to be in that mother and baby unit and have the care that I needed just meant considering the the severity of my postpartum psychosis the recovery was extremely quick. Presumably second time around after you'd given birth to Gabriella the hospital were much better at knowing what you needed. So this is what you would assume but unfortunately

this isn't what we experienced. So initially following the birth I felt really relieved that it had all gone to plan and that I seemed to be fine and then three days after the birth when my milk came in I began to be so anxious that I didn't get any sleep at all and it was at this point that I said to the midwives I need to see a psychiatrist I think that the postpartum psychosis is returning and I remember really clearly one of the midwives kind of patting me on the shoulder and saying they're there and I assumed from that conversation that she had gone on and she was following this up but it then unfortunately got to the weekend and it became clear to us that no action had had been taken. It must have felt like the second time round,

it just shouldn't have happened. I was less stressed and anxious and emotional about it the second time for myself. I just, it was more, here we go again, we've got to do all this again. And, you know, what we've understood, I guess, perhaps from engaging with action on postpartum psychosis since is that that kind of early intervention is really key, you know,

and actually, probably, we don't know, but probably what Claire needed, it seems, is antipsychotic drugs very quickly after both births, and actually the course of the psychosis would have been a lot better. That's what we understand. Who did you used to talk to? Because you obviously couldn't talk to Claire. Yeah, and that's a big loss, really. You're kind of used to your partner being the one that you talk to Claire yeah and that's the big loss really you kind of used to your partner being the one that you come to with with all of life's problems and then and and then you know you obviously have to be mindful of her hope and experience and

not burden her with how you're feeling I don't know who I did just talk to if I'm honest I'm not sure I talked enough I think you know I've found ways to talk since, but, yeah. Were you afraid that your children were in danger? Yeah, I guess, and I was, and it's... And, you know, Claire would never hurt the children, of course, but she was so volatile, I guess, you know, it's always a thought that you have. And, as I say, Rafi seemed to kind of roll with it really well,

but I was certainly worried at the time that it was difficult for him to see his mum like that. You know, he'd had a three year relationship with her when she'd been, you know, this wonderful mum and everything that you'd expect. And then suddenly she was saying all kinds of odd things and behaving in erratic and strange ways. You know, I was worried that that would knock him, really. So you felt like the prime carer, you felt like the responsible one in those early days. Yeah, night shift was always my shift. And, you know, it was very much, you know, I walked through the door and it's like,

thank goodness you're back, I need to go to sleep. And I totally understood that. The medication that Claire was on was quite significant. It was causing her to need a lot of sleep in the day and sleep all through the night. You know, there was quite a limited period when she was able to kind of function at all, let alone look after children. It's quite interesting because you actually talk about the psychosis really as being the hardest part. But actually, it's often when you're back home and actually things have settled down. Yeah.

But the medication is having a huge effect on on family life yeah that's right it did it had a really huge impact and it had an impact on my self-esteem as well and on my confidence of of being a mother and I didn't feel like a normal mum I felt like it was something extremely different and you know going along to my local mother and baby group where everyone's talking about breastfeeding and losing their baby weight and you know I'd put three stone on after the birth because of the anti-psychotic drugs and that was what I was having to deal with and I think actually the second time round we made the decision after a couple of months that I was going to stop my antipsychotic

medication completely and for me it meant that I could have a really enjoyable maternity leave and that my maternity leave was about enjoying Gabriella and that special time that we had together rather than it being about me just recovering from the postpartum psychosis yeah we had a nice year in the end funnily enough I was only working four days a week so it was lovely to kind of have that family time really in the end you do through all this experience kind of it pulled you all together as a unit definitely I mean as I said even even having Christmas day in a psychiatric unit kind of has its own kind of bonding quality, really. I'd like to think it's, as it's a fairly hopeful story, ultimately,

you know, it was rough and choppy around the times of the birth, but, you know, Claire recovered well, you know, she's a fab mum now and, you know, we have a good family unit. It's all as we would want it to be now. That's Aidan, and you also heard from Claire, and the reporter was Henrietta Harrison. Now, Claire is a regional representative for Action on Postpartum Psychosis, an organisation which gets funding from Comic Relief.

So to donate to Comic Relief, you can go to bbc.co.uk forward slash rednoseday. Now, Wendy Mitchell is still with us, and thank you so much, Wendy Mitchell is still with us. And thank you so much, Wendy. I know you've got a really busy day of other interviews, haven't you? That's right, yeah. And so one of my additional questions really is, how exhausting is this for you? Oh, yes, it will be very exhausting.

And I'll have a banging headache at the end of it. But, you know, what's the alternative? Just sat at home with dementia as company? I don't think so. So I always make sure, or I try and make sure that the following day,

which tomorrow is, is just a day where I have an empty day. Because I will be a bit like a zombie. Right. Okay. Well, I think you're justified in having an empty day because I will be a bit like a zombie Right, okay I think you're justified in having an empty day tomorrow. Can I just put some of our additional questions, or mine

and some of them from the listeners as well As I say, an enormous wave of huge support and love for you Oh, that's very kind of people I'm afraid people on the whole, I say afraid we're simply not used to hearing from people with dementia. That's right, yeah.

People, when they hear that word, dementia... It's terrifying, isn't it? They do think of the end. And so there's this immense fear and immense misunderstanding, almost. They have a very tunnel vision of what dementia means. And as you say in your book, it has to start somewhere. That's right. Even everybody in the late stages must have had a beginning. You might not just have realised it was the beginning then. Well, can I put one up? Because a listener is very keen to ask you,

and I understand why, when did you first notice that you weren't operating in quite the same way as normal? Can you remember? And what were the signs? I can very clearly because I used to be renowned

for having this mega brilliant memory. I never forgot. I used to remember the most random things. And then it suddenly began to let me down badly. And I'd forget the simplest of words and the names of people that I'd worked with for years. And so that was my first inkling that something really wasn't right.

And also, I used to be a runner. I used to run every other day. You were actually a very fit, active person. We need to emphasise this, don't we? I was. I couldn't have been any fitter. Non-smoker? Non-smoker, non-drinker. Not all my life.

Very early on, as probably most people. Young people, yeah. I used to drink, used to smoke, but haven't for years. And so it just goes to show how dementia doesn't discriminate against sex, against intelligence, against wealth. If it's going to get you, it will. But it's just by doing the right things, you're at least giving yourself the best chance. And so when I was out running, my legs and my brain stopped talking to one another and I'd fall flat on my face. So I just knew there was something going on that wasn't right and that's when I went to the doctor. And when you went to the doctor, were you immediately taken seriously?

Oh no, no. I was a woman of a certain age. I was stressed at work which i never am um and it was all the usual things that came back but i was you know i'm a very resilient person very persistent and i was saying but this isn't normal this isn't normal stress this isn't normal aging. This isn't normal aging. One listener wanted to know if you were on medication. Yes, I am. I'm on Danezipil, Aracet, as people might know it. And sadly, there hasn't been any new medication developed for over 20 years, which just goes to show how far behind we are in treating dementia. And this doesn't reverse dementia, it doesn't make you better, but the medics say that it can help stabilise you for longer.

And I'll be taking Aricept for as long as i can tolerate it because why wouldn't you take something that is your only chance of staying stable are there side effects oh yes yes um it affects your sleep yeah i was going to ask you about sleep you don't sleep don't no no so what do you do Wendy, in the small hours of the week? I've learnt to switch off and relax. Again, I'm just so lucky in that I'm the sort of person that can cope with not sleeping. I don't get up and worry.

I don't sit up in bed and think of whatever. I'm very good at simply lying with my eyes closed. So my eyelids are closed, but my eyes behind there are wide open. But it just means that I can relax. Do you listen to music? No, no, I can just while away the time. As I say, I'm just very lucky that I can do that. A lot of people will have seen the film Still Alice.

And in fact, I read the book and then I saw the film and interviewed Julianne Moore, who's a lovely woman. And I know that you've met her too, haven't you? I did, I had a cup of tea with her at the premiere of Still Alice. Yes. That was very surreal. Again, I mean, you could never, all those years, plugging away in the NHS in York, you can never imagine that you'd be hobnobbing with Hollywood royalty.

I always call these things the advantages of dementia because you have to see the positives in such a cruel disease. So I see, just like being here today, I would never have been here today if I didn't have dementia. I would never have written a book if I didn't have dementia. So I grasp every positive I can just to make coping with the cruel disease easier. At the moment, I hope you don't mind me asking this, at the moment you know you have dementia.

Yes. That there will be a time when you won't know, will you? Well, the thing is no one knows how dementia will affect every person and when. That's the cruelty of it. We never know when we will tip over that edge. And has anybody, have you asked your doctors, how much longer will I be able to do the incredible work that you do? No, I always think that medics are the least educated about dementia.

And my doctor, my own GP, has learned so much from me through me simply talking to her. And she treats me so much differently. She was always lovely, but she treats me so much differently now since reading my book because she understands the little things more. It's the little things that can make so much difference. Give me an example of one of those little things. Well, when I go to the doctor, I like to go on my own because then I don't have to concentrate on someone else being

with me and all the conversation so my doctor if we decide things at the end now writes it in the little notepad that I take with me and then I can just show my daughters what she said so I don't have to remember anything which would be very stressful so she never used to do that but she knows now that it will help yes yeah so just tiny things like that and your daughters I know they're obviously hugely supportive oh yes but it must have been a shock to them this diagnosis diagnosis. Absolutely. When I got the diagnosis, or when anybody gets a diagnosis, the whole family gets that diagnosis. It's not just me.

And that's why I always say how it's the whole family, the close family, that need support and education, not just me. Because they need to know how to care for me. You know, they need to know what changes there might be. And yet we're not told anything like that on diagnosis. I know you've been a single parent for a long time so um that's not not a simple undertaking it's it can be a tough call but you were uber competent yeah and the girls i'm sure are very protective of you do you think They do worry about you? Oh, absolutely, yes, without doubt.

Really, we're just like anyone else. You know, daughters worry about their mums as well as mums worrying about their daughter. So do they nag you a bit? Oh, yes, absolutely. But they now... We now talk so much more than we ever did before. So, for instance, on Saturday, last Saturday, I was supposed to be doing a skydive. Yes.

The weather. I know, it wasn't good enough. The weather wasn't good enough, sadly. But when I told them I was doing that, they now just roll their eyes because they know that I do these things. Wendy, I can't say I'm surprised that they roll their eyes, really, in all fairness. And by the way, if my mother's listening, I do not want you to do a skydive. Thank you so much, because I don't know about anybody else. I have learned so much from just being with you this morning.

I've had a lovely time. Thank you so much. I'm delighted to hear it. Thank you so much, Wendy. And the best of luck to you and the fantastic work that you do, because it's so, so important. Thank you so much. I'm delighted to hear it. Thank you so much, Wendy. And the best of luck to you and the fantastic work that you do because it's so, so important. Thank you. Wendy Mitchell, who I think has all our admiration. Get there in the end. She has all our admirations, which almost makes sense.

We'll be back tomorrow with the programme and the podcast. Hello, I'm Greg Foot and I'm hosting a new Radio 4 podcast called The Best Things Since Sliced Bread. Have you ever wondered what's fact and what's fad when it comes to wonder products? Face creams, activated charcoal, kombucha, turmeric shots. That's what I'm trying to find out with the help of leading scientists and special guests.

If you want to separate benefits from bunkum, subscribe to The Best Things Since Sliced Bread on BBC Sounds. Everybody. Every doula that I know. It was fake. No pregnancy. And the deeper I dig, the more questions I unearth. How long has she been doing this? What does she have to gain from this? From CBC and the BBC World Service, The Con, Caitlin's Baby. It's a long story, settle in. Available now.