'She's a fighter, an absolute fighter': Fiona Phillips' husband Martin Frizell on her life with Alzheimer's

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0:56Camilla: What's it like to live with somebody who is suffering from early onset Alzheimer's? Fiona Phillips, star of GMTV and Strictly Come Dancing, has written this extremely moving book about her diagnosis at the age of 61. Martin Frizzell her husband joins me here to talk through what the last five years have been like and we'll be discussing the book in this special edition of The Daily Tea. Martin Frizzell you join me in The Daily Tea studio to discuss your book with your wife Fiona Phillips it's called Remember When My Life with Alzheimer's and we should just have a little disclaimer here that we do know each other because you used to be the editor of This Morning I appear on This Morning on Morning View and on other matters.

1:38Camilla: So we've known each other for quite some time. And I actually remember, I don't know if you do, you saying to me, because I said, how's everything at home? How's Fiona? And you sort of leaned in and said, she's not great, actually. No, and I don't know when that was because I'm very trusting and I obviously trusted you, but I didn't tell many people at all. And first of all, apologies. She would love to have been here herself. It's her book. It's not my book. I know. But, you know, she's not in the best place. And so I agreed that I would go and spread the message, spread the word. Your chief carer and chief publicist for this book, which I've read over the weekend.

2:15And I said to you when you came into the studio, it's so eminently readable.

2:21Camilla: It's compelling. It's great to hear her voice. I mean, I remember growing up and Fiona being on the GMTV sofa alongside Eamon Holmes. And she was quite an inspiration. I mean, all women of that slightly older generation to me as I was rising through the ranks, seeing her sitting alongside Eamon and then actually when he left taking full command of that show was quite emboldening. I thought this is a journalist who knows her own mind. And I suppose what is what immediately struck me about this book is you explain to me how it's been written. But there are moments of absolute and complete lucidity in this, which I would imagine was Fiona at the beginning of this process.

3:01Camilla: she talks about how she got into journalism and being the LA correspondent for GMTV but then I'm imagining that you had to fill in a lot of gaps as the book progressed how did you actually write it with Fiona having been diagnosed and now not necessarily in a fit state to come in here and discuss this well she'd already written a book about her parents who both got it and died from it and so she had that kind of hinterland and so there was that to sort of help it through but as it's been about a year and a half or so in the process the book and a lot of it you're right is her lucid periods which she still has you know she still amazes me whereby you'll think you know it's just another wretched day then you'll be watching something or talking about something and she will come out with stuff that is absolutely of the moment or it's in her memory is better than mine in terms of five years ago things that would happen or if i'm saying let's put some music on shown other lyrics, absolutely, you know, down to the most detailed syllable.

4:03But we got help from Alison Phillips, who was, and again, talking about the trust element here, Alison Phillips was the editor of the Daily Mirror. And Fiona's biggest enjoyment in journalism has been not just being the Hollywood reporter and covering the earthquake and then all the big stars and various things and being a presenter on television and doing some panoramas. Because, you know, her biggest achievement, she believes, and I keep agreeing with her, was being a columnist for more than 10 years. And you know what it's like in a daily newspaper. You know, I think that's through four or five different editors.

4:37Piers Morgan was the first one who hired her as a daily columnist. And she went through several iterations of it since then. But I keep saying to her, for you to, I don't know of any other, apart from Routledge and Kevin Maguire, I don't know if anyone else who's still there hanging on, clinging on, you know, through different editors. Little John, maybe. It's amazing you can do it. And so she knew Alison Phillips from The Daily Mirror, of course, who was her editor, her last editor. And I confided in Alison quite early on once we had the diagnosis. And it's a big risk. I mean, much as I like Alison, really respect her.

5:11It's a tabloid editor you're telling this news to and no one else really knew. and to give her due, Alison sat on that for a year and more and there wasn't a whisper that ever went out to the press, certainly from her. And when Fiona did decide to come out and say, I've got this and please all talk about it because that's what we need, it was Alison who did the interview and it was so beautifully done. So beautifully done that not just the mirror gave it big licks, but the Times lifted it word for word, literally word for word and put it into their edition. and so when we came to think about you know doing a book Alison seemed to be the perfect person I wouldn't even call her a ghost writer because a lot of it is Fiona's words but Alison was someone that we trusted and so we brought her into the fold and she came to see us many times in addition Neil who was Fiona's producer in Los Angeles came in for a reason in Bali now he flew in and I didn't know but all during the time that she'd been in Los Angeles he'd been taking pictures this is the days before mobile phones really but he had a whole kind of library gallery of fabulous pictures of of the two of them doing things and also the stars they met and the stories they covered so he was involved as well and then I I wrote I was asked do you want to contribute something I thought it'll be a few paragraphs and it's her book mainly I ended up doing 24 ,000 words why because I started off about what a great woman she is and just how horrible it is and dreadfully unlucky that, you know, she is the latest in the long line of her family to get it.

6:49But then I just got very angry as to what support there is. I think it was, we might come on to this, but the day that we went to UCLH, University College Hospital London, to see our consultant, the result of tests. And he said, I'm sorry, but it's, I believe it's Alzheimer's. And it's like, gulp and he says I'll go and get you a cup of tea and have a read of this here's some reading for you and he pushes across a leaflet across the table and it was on the front cover it was an old couple with a Zimmer frame basically saying how to live well with Alzheimer's.

7:29Camilla: Yeah and you make the point you're sitting next to your wife who's 61 she's in skinny jeans and some nice leather boots this isn't someone you look at and you think Alzheimer's it just doesn't relate to you and you then realize that actually there's about 70 ,000 people like you who you know have early onset Alzheimer's a million or so roughly in the country who have Alzheimer's full-time who are older and you bit by bit realize that there's not a lot of support if any support at all for people like that. And I'm not saying what support would there be, because you just kind of certainly, as a family, we just kind of get through it.

8:11And at some point, we will need support. But you just realize there's just nothing really, there's no reading matter that really kind of, you know, helps you apart from the Alzheimer's that people get in old age. And it's not an old person's disease, you can get disease, I read today, there's someone at 19, who's the world's youngest Alzheimer's patient, sufferer, victim, you can get it at any age, but predominantly, people do get it later in life. But there just was not a lot of help out there. And it just got me thinking, all right, because as a journalist, I've done so many stories about illness.

8:42And how many stories have we done on cancer? And cancer literally just, you know, soaks up all the attention, soaks up most of the money. It's sexier disease than Alzheimer's. And I get that. But it just seem that you know here we are again Alzheimer's back of the queue and then when you read into it it's Britain's biggest killer.

9:04Camilla: It's also because I think people are quite scared of it and scared of people with it. Well that's when you come down to and again I'd been starting to realise that before I put words onto paper is that you become invisible almost. Explain that to me. Well once you've got it in the family if you're a sociable couple now listen we didn't go to lots of dinner parties, but we went to a few. They all dry up. What, even really close friends? Yes. Well, we still have some close friends who do, which is great. But generally, those kind of invites dry up. And I try to work out why is it? Is it because people think, oh gosh, Fiona, maybe she doesn't look the same, or they don't know what to say, or it brings into sharp focus their own mortality.

9:53Crikey, we could get this. And so it's just, you know, let's not bother them, you know, which is a shame, but it does make you feel isolated. And a lot of the problem that people have with Alzheimer's and dementia is isolation. And of course, the doctors and consultants will tell you the best thing for it is to be as sociable as possible. So it's kind of a vicious kind of circle. How do I do it if no one really wants to come and talk about it and one of the worst occasions or saddest occasions I suppose was I remember being at a place where we would go quite frequently and Fiona knew these people from the past and she hadn't been around for a while and then I managed to get her out and we went to this place and we're having a coffee or something and at the end of this big empty table were two people that we knew from the past and we said hello and then got up and moved outside.

10:42no tell me why is that is it was just because it was a nice day it wasn't it was in the winter why would you want to go outside or I think it was and I'm not blaming them I think it was they just didn't want to face up to it or try and work out what to say or if she repeats herself and she doesn't repeat herself all the time but if she repeats herself do you take notice of it that's just it people don't know how to approach or to converse with people who have dementia

11:09Camilla: And that plays into your point about invisibility, because basically you're being ignored because it's more socially convenient for other people to look the other way. I mean, you're saying to me because you came in here and before we started recording, you're like, this isn't about me. This is about Fiona. And I totally appreciate that. But why I am interviewing you, not least because she cannot be with us at this present time, is because I think people do need to hear from you, which is why you've contributed to this book, how it has been to cope with and what life has been like. And I'm sensing that you're slightly questioning how unvarnished the truth is in this book.

11:48Well, yeah, when they sent the manuscript through, I didn't want to read it. And I still haven't read the whole thing because it's very difficult because we're living with grief on a daily basis. Literally, it's 24 hours. Each 24 hours, it's like someone has passed because bit by bit, she's not there or a bit will come back and then another bit will go it's really tough and so I didn't particularly want to read it all and just refresh my memory again because it's there thank you I even get and I hate to admit this but it happens people will contact me and they'll say look my partner has got Alzheimer's as well and it's great that Fiona is raising awareness of it is there any way you could give me some advice and whatever it is and I have to say no I can't my well, my capacity to do those things has run dry.

12:32You know, I'm just getting on with what I do myself. So we're doing the book and putting in what we can in there. And if there's any sort of, you know, hints or tips or sharing or whatever it is, then that's in there. But I actually don't have, you know, a well of extra help to give to people. Sounds awful.

12:49Camilla: No, why would you? But also, Camilla, what comes through is the horrible phrase of being selfish. And I always thought that if I took a half hour off or I went to work and through a lot of this, I was working every day. I don't know how you were working. Because it was respite, because going into work and running a team of 100 people and putting out a big network daily live show was, you know, your mind kind of drifts into just being focused on what you're doing. So that's kind of respite for you. But when she was diagnosed and people find out, they say, and how are you? And I'd say, well, listen, don't worry about me.

13:25I'm not the one that's got Alzheimer's. I mean, we have to worry about her. But now I know what they meant, especially these are medical professionals who are saying, and how are you? I think, why are you asking me all these things? Do I look as if I'm kind of crazy or stressed out? But now I know what they do mean, because you do have to be, I still think it's selfish, but the doctors say, don't say that. It's not. You do have to find time for yourself. You do have to sort of get that escape route that gives you a chance just to sort of, you know you know charge your batteries for the next bit that comes down otherwise you wouldn't be able to look after her no i know let's go back to the beginning because i mean it's part of the kind of

14:04Camilla: tragedy of the book really i hadn't realized that your romance with her had been so rapid and that you proposed within four weeks of knowing her well i'd known her for a while though that's the point you know I'd known her for a while and we'd kind of um bumped into each other through various times uh and first kind of got to know her when she was the Hollywood correspondent and I was the senior correspondent and oh you know what it's like what a wheeze I'll just go and cover the bureau for a bit you know it's not as if I'm going to Kiev or I'm going to Tehran guess what I'm going to Los Angeles for a few weeks that's great someone's got to do it right yeah so we kind of ships that passed in the night we sort of had dinner and off she went but we'd really We got to know each other over that dinner.

14:49And then she came back to present full time on the sofa. I think Anthea Turner left GMTV and there was talk about who's going to replace her. And Fiona didn't think for a second she was in with a chance. But yeah, they chose her to sit alongside Eamonn. And so she came back and we just got to know each other a bit more. Then we went to Ascot one day to cover, as you do in daytime television, the fashion, the races, the stories, whatever it is. And we came back after that, went for a bit of late lunch, and that was it, really.

15:20Camilla: What do you mean, that was it? 20-odd years later, 25, 26, 27 years later. What was it about her that made you think, after four weeks of dating, that this is the woman I'm going to marry? Well, she's the nicest person I've ever met, absolutely. Now, I've met a lot of nice people, but in the kind of catty, kind of backstabbing, tough old world of journalism that we grew up in, not everyone's nice but she was not just a journalist but she was honestly the nicest person she never heard a bad word about anyone she used to infuriate me because she would take as much time as was needed to say hello to people you know you couldn't just go anywhere because she'd always be stopping being stopped in the street and she would take time to do it you know I was less less generous with time shall we say and so just getting anywhere doing anything was always you know very time consuming but she was she was lovely and she's great she looked great she dressed well and part of the heartache now is that you know in our house uh in Wandsworth is that she's got this um dressing room pretty much four wardrobes full of the most amazing clothes she had great style what I always loved about her was she had great style still has but she hardly gets to wear any of those things she's this horrible disease means basically she's more than happy just wearing the same t-shirt same trousers the same thing day in day out doesn't really have you know much appetite for all those fabulous things in her wardrobe so i love that she just she looked great and she was stylish and she was a great journalist too but most importantly she was just the nicest nicest person but those little domestic details are what doesn't get discussed about this because people want to talk about it in a more macro sense you're living with this day-to-day and also I was just reflecting on what I had read and there's a part in there where you say and you've spoken to it with regard to your lack of socialising how lonely and isolating it is for the person with Alzheimer's but also the person caring for them and with the greatest respect to Fiona she is forgetting her diagnosis and she is forgetting things on a regular basis you're not forgetting anything you're living it all and you know exactly what's going on which does make it very very hard for you and it helps her get through it by forgetting about it you know we talk about it in the book but she's got to the stage now where if you do bring up the word alzheimer's or dementia it does i can see you know she's obviously always thinking about it subconsciously but it brings it to the front and it's upsetting because she knows listen she was an ambassador for alzheimer's charities both parents died from it she knows the way it's going and she knows too that you know there is currently if ever no pill out there no magic pill that's going to stop it when you talk about her being such a lovely lady there's a massive degree to which she was so relatable because of what she went through with her parents because she spoke about it a lot on the telly she wrote about it in her columns intriguingly and i hadn't realized until i read the book that there's some columns where she talks about the fact that She thinks she's slightly losing her mind, forgetting things.

18:36Camilla: She's putting it down to the menopause. She's very open. But her having very selflessly actually stepped back from her career, looking after mum and then eventually dad, that prelude to what then she ends up being diagnosed with. I mean, does that all make it more tragic and difficult? She got up close and personal with the two most important people in her life, apart from you and Nat and Mackenzie. saw it all happened it is now living it like do you ever think why has this happened to us this is well well no the why me thing we try not to do it doesn't really help going you know why me why ours and I did ask the consultant I said is it genetic and he said I'm glad you asked that because we do need to do a test because we need to find out if it is genetic what are the consequences for your children.

19:29And, you know, touch wood, my family, I'm not aware of any kind of history of it on my side. And so it was all through her side. So we did, I mean, as if, you know, finding out that you have a dementia, Alzheimer's diagnosis wasn't bad enough. You then have to wait another two weeks for a blood test result to come through to see whether your children are going to get it. Literally. And luckily, the consultant said, the good news is, it's negative. It's not a gene It's not hereditary, he says, so your children don't have to worry about that. I said, well, how do you explain her parents and her?

20:06And basically he uses the phrase, she was just predisposed to it. So what, bad luck? I mean, I still don't understand what it means.

20:13Camilla: I don't understand that. And you use the comparison with Chris Hemsworth, the Thor actor who has been told he's predisposed and he's taken a step back from work, fearful that he might be diagnosed early as well. is there any evidence at all to suggest that the pressure she was under she paints this picture frankly that many working women can identify with to a point but I think actually the life she was leading at the time where she's getting up at 3 30 in the morning she's got two young boys she's then having to commute to Wales and back to look after mum in swift succession she's then looking after dad she's under so much pressure she had such a difficult period didn't she between becoming the helm at gmtv and everything she was dealing with with her parents you know we then see depression and anxiety creep in because she was juggling a lot like is have you ever thought has she got this because she had to nurse her parents through it um it could be i mean stress but she was always very fit.

21:22She was always, I mean, part of some of the causes, they would say, I never quite know what the cause is, but some of the sort of bad habits you have that could lead to Alzheimer's. Yeah, we did those, you know, hands up. We did a lot of wine, you know. I don't know about you, but in our younger days, I know you've got issues with it in the family, but in our younger days, we would do a bottle of wine a night each. Yeah. That's all gone.

21:46Camilla: Well, it's the journo's way. Exactly, that's all gone now. So, yeah, we can have lived life, not to the extremes, but we lived well. But no, I never really thought. And if I, do you know what, Camilla, I don't really want to spend too much time on it, because then I just feel guilty myself and that I should have done more. But I was busy doing stuff too. But do you know what? You don't think at the time. You just get on doing what we're doing. Also, with respect, Martin, it's very much reflected in her words in this book that she is a stubborn and independently minded woman who was extremely career focused.

22:14Camilla: She was the one who was saying she couldn't turn down work offers. she literally says that she's like I needed to do Strictly Come Dancing like a hole in the head but I said yes because I felt I should take any offer that was made to me because she's a grafter and you're also a workaholic I mean I'm a workaholic most people at the top level of journalism are. Let's hand down just just quick interlude there just on saying you know why I loved her because she's she's so nice but when she was doing Strictly Come Dancing and she was pretty rotten at it, let's face it. But she managed to stay in for six weeks or so until after Guy Fawkes night.

22:49And it was her and Dennis Taylor who were the two worst ones. And I remember her saying, you know, there's two of them left. She said, please vote for Dennis because, you know, he really wants it more than I do type of thing. And guess what? They all voted for Dennis and she got kicked out. But that's what she's like.

23:05Camilla: Yes, indeed. Kind of selfless, really, even if it's to her own detriment. Going back to that fateful day where she's diagnosed, the book seems to suggest that she's quite surprised even though deep down she probably knows what were your emotions on that day because you have a lovely Italian holiday for two weeks before where she's like back to you don't say old Fiona you say young Fiona yeah and it's really quite straightforward and simple and understanding why she'd feel that because just before we went away just for that break. Now, she'd already had a brain scan where the consultant said, and they say these things to you because they're not going to sort of sugarcoat it.

23:47They say, it looks to me like your brain is smaller than I would like it to be. Well, not much I can do about that. And then she had blood tests. She had different scans and she had the cognitive test quite regularly. And again, this is what makes me angry about Alzheimer's and why I've done so much in the book about it the cognitive test is 50 years old yeah they say it's fairly reliable but it's not a definitive marker of it and it's things such as what's your name what's the day what's the season take seven from 100 then seven from you know 93 draw two rectangles it's that um so we'd had lots of those things and then the final one he said he said look I really can't you know I can't diagnose it yeah and we're thinking well this is good he said I can't really diagnose it maybe it's something else he said but let's get a lumbar puncture it's the final test it's spinal fluid spinal tap we will know from that that's basically after all these years you know that's still the kind of the cruel crazy way they do it um so painful as well yeah exactly so um she went in for that and um she was there on her own she didn't want me around and she came home all smiling saying well the doctor who took the um the fluid and was really pleased.

25:02He said, wow, that's a really good sample. He said, oh, that's so clear. And she thought, wow, wow, that's a really good sign. And I didn't want to Google it, what it means. And so we went off and had a great time in Italy, and she genuinely thought she didn't have it. She thought that kind of clear result was, well, it's not polluted with anything, so I probably don't have it. And what it really meant was he was saying it's great because we can really sort of, you know, take this apart.

25:31Camilla: It's literally a clear sample. We can study this and that's really going to help us. So back to that appointment. I mean, what do you remember of that day, that moment?

25:44For some reason, I think we were dressed in black. That was subconscious, didn't plan to. But we went in and it was May time and sitting in the consultant's office and another thing about Alzheimer's is yes it's part of the NHS but the money that's spent it's it's a drab kind of place to go to when you do go there they do their best but there's no money that's been spent on it it's bare walls it's old furniture you're sitting there and he came straight out with it I presume he's used to telling people there's bad news and he said you know hello I'm afraid I've got some bad news for you it's Alzheimer's and you just you gulp you just take in a I kind of knew it was coming but you just take in I think Fiona was still hanging on to the um the test the lumbar puncture test but she probably knew the writing is on the wall why did you know it was coming I just I just thought that you know I'd seen her decline and it had to be more than brain fog, menopause, whatever else it was.

26:55It had to be that kind of thing, a change in behaviour, mood swings. It had to be something that was quite big. And so, yeah, I kind of knew it was coming to a degree. But even when it does come, it's still awful.

27:08Camilla: Also, I don't think people would be familiar with the idea of some of the symptoms being a degree of agoraphobia, real quite serious depression she before she was diagnosed has what you described as crippling anxiety just tell me a bit about that because you were actually witnessing her personality change and trying to figure out what was going on I know and it's for someone who was very gregarious uh life and saw the party I mean had she had no off switch which is the thing I loved de Butler as well. It could be frustrating and infuriating at times, but she'd stay there till the end of anything.

27:50And she'd drink everything until the end of it. And she really lived for life and loved life. And gradually to see this person becoming more withdrawn and then just being frightened about the slightest thing or getting really worked up about, you know, small, immaterial type matters, which had never happened before, was really upsetting for all of us. And again, as I say, initially, I put it down to menopause.

28:19Camilla: There's also this moment where she suggests that she wants to clear out the loft, where a light bulb goes off in your head. Just explain that. Yeah. I mean, listen, I don't know about you, but our loft is just full of stuff from the last house. So is everyone. That was 21 years ago. It's still in boxes up there because, you know, the new house doesn't fit what the old house had in terms of its look. Thanks, Fiona. So it's still curtains and everything are still up there. Spent a lot of money in those things, but they're still up there. And yeah, she came up with this, where we've got to clear out the loft.

28:49And I didn't understand what she meant because that's a big old job. And I said, well, what, do you want to sort of build into it? Do you want to put a bedroom in there? What is it? She said, no, just we don't want to leave it for the children. All that mess, all our kind of stuff, we should clear it out. And I couldn't really get to the bottom of why at that point, why then she was worried about what the children might have to do. Because we still had, you know, as far as I was concerned, you know, many years of not having to worry about the children. But now thinking back, that to me is a sign of some kind that, you know, she was, and it's amazing what the brain does.

29:23That's a sign that, you know, she had planned or was thinking or was forecasting or, you know, had some sort of insight into, you know, what may be coming down the line.

29:33Camilla: Her mum Amy was diagnosed and she passed away in 2006. Then dad Philip is diagnosed. He passes away in 2012. And Fiona herself recalls the moment her mother was diagnosed with the words, mum had left me. She was never, ever coming back. Did you feel like that when Fiona was diagnosed? No, because she was still present. And to this day, she's still present for periods and is still physically present. And I'd argue for anyone to meet her in the street on a good day, she'll look just the way she was and still is. I mean, Alzheimer's causes all sorts of extra issues. So secondary complications come in.

30:14And that meant for the past year or so, she's been in quite a lot of pain. And so that adds to the confusion. So if anything, if I work out, maybe I saw the first signs of it, say, five years ago. just the past 12 months where it has been particularly difficult, not just for her, but for us as well, trying to, you know, find a way through what's causing the pain for her. And just trying to, and with pain comes delirium, and even more kind of psychotic kind of episodes that are frightening for all of us. And so we just want to sort of bit by bit, day by day, as I'm saying, just reduce the pain, sort that out.

30:52And then let's see where the confusion, what level the confusion is at once we get that done. So for many years, four, first four years of those five years, she was still very present and here with us. And so I didn't feel that I was losing her from day one. Absolutely not, no.

31:10Camilla: You say we have not once discussed her illness since her diagnosis. Really? She doesn't like to talk about it. I think it's her way of coping. And when I was talking to her about voicing some of this and the word Alzheimer's came up. I mean, it's almost like it's a constant recurring theme that's just going on on a conscious level that she doesn't talk about, but it's always there. And you just have to trigger it. And she gets really upset because her way of coping is by trying to block it out and just not accept that it's there. That's the way that she gets through. And almost if there's pain, if there's something else going on, she'd much rather have that probably than the Alzheimer's diagnosis.

31:59Camilla: How have your sons Nat and Mackenzie been? Because again, you don't like to make it about you. I think the children of people who suffer with Alzheimer's don't like to make it about them either. But this must have taken an extraordinary toll on them as young men. Yeah, I don't like to talk about them because they are their own individuals. But they've been fantastic. They've been a great support. And we couldn't have done it without both of them. Nat's in the army and the Royal Engineers. He's a soldier and a plumbing and heating vent engineer, which I will use at some point. Yeah, handyman to know.

32:30Camilla: I'll have his number later, please. Absolutely. And Mackenzie's into fashion. He's been to fashion college and he's kind of starting out in the road to fashion. He's buying and selling clothes and packing off stuff to Bogota, I think legitimately. Jackets and various things, but around the world he's buying and selling stuff. But he lives at home and he helps me a lot. You know, we get through. We have had someone who came in to help with Fiona for a while, but she's still very switched on and kind of, I said it was a housekeeper, but she knows. And she just said, no, I don't need that help, thank you.

33:02Camilla: But that's hard and lots of people will identify with that. You know that you need help. The person who needs help won't accept the help. There's even a line from her in the book about going into care and she says, I didn't then and I still don't. so this is now very very tricky because you are trying to advocate for somebody who can't advocate for themselves and I'm sure you know deep down Martin that you will not be able to cope with her as her symptoms get worse and we're still quite a way away from that so it's not I mean literally it's I'm living for the day that's our way of getting through it other people might have a different method of coping with it my way of coping is just living for the day maybe a week at a time.

33:47I don't look further forward to that. I don't know when my next holiday is, if I ever have a holiday. I have taken, again, selfishly, to going away for a few nights, as many nights as the children can sort of accommodate, maybe two, maybe three nights maximum, just myself, just for some respite, just to get on. I've had to learn how to not find myself so boring and dull as I think I am.

34:09Camilla: Well, you said when you first went away by yourself after 24 hours, you felt guilty and wanted to come home. I know. This is this guilt. This guilt is all consuming as a carer, isn't it? Well, but it is. But again, you have to learn to not believe it's selfish. So I will do those things. And the children help me with that. And I'm quite sure Fiona, you know, in her lucid moments, and she has been aware. So we don't hide things from her. We will say, I've got to do this and I'll bring a present back or so. And she will, she'll hold that present, you know, for the next few weeks or months until I have another present.

34:43But the day-to-day thing is, I don't know if we'll ever have a holiday again together. I don't know. I'd love to think we can get a better to go and do that. I can't plan, you know, autumn, Christmas, next year. Don't know. We just literally, what day is it today? Today's Monday. I'm just thinking of what I have to do on Tuesday.

35:02Camilla: You write so honestly about how hard it is to deal with on a day-to-day basis. One particular quote, anyone who thinks they could endlessly explain the same thing over and over again without ever becoming frustrated or losing their patience just needs to try it. Not once, not now and again, but every single day. Now, there is this other myth around all this that suddenly you turn into Florence Nightingale. You have no medical training. You're meant to be dealing with somebody who I would imagine at times, as much as you love them, can be infuriating. Frankly, spouses can be infuriating when they're not ill, let alone when they are.

35:46Camilla: Is that the reality? Yeah, I think when I left this morning, I think the press had it always leaving to care for his wife. I made it quite obvious to anybody who wanted to listen, I'm not going to be the Mother Teresa of Wandsworth as such. I'm not, you know, the Archangel Gabriel and all those things. I have my moments. And yeah, it's frustrating. And sometimes once you've realized, you know, you're reaching the limit, I take myself off into another room and I'll almost feign, it's interesting, I'll almost feign being ill myself and say, I'm sorry, I really don't, I really feel awful now. I've got to lie down.

36:20And all of a sudden there's this empathetic kind of well that she has kicks in. And she says, all right, how can I help you? This maternal thing kicks in. How can I help? What do you need? And she will leave me. She'll then, in her mind, she'll then go off and do something else. But she will leave me. So she'll see that, you know, crikey, yes, this person needs help. What can I do? So it's not just, it almost kind of breaks her kind of whatever line she was going on that was frustrating you in the first instance, you know, to turning around. And it's pretty much it's back to the old Fiona again.

36:53And so that's why it's such a clever, clever piece of kit, this organ that's up there. I mean, all the talk of the world is going to be run by AI. You're never, ever, ever going to replace that and what it does. And then that comes down to the whole kind of question of research, funding. What are we doing to sort this out? How much or have we just given up because we're never going to crack this? So we actually just given up because we just have to accept quietly we'll never do it. And should we maybe put our efforts into social care for caring for people who do have it?

37:33Camilla: Well, we'll talk about some of the treatments that are or aren't available in just a second. Just back to you mentioning this morning, you're coping with all this in secret at the time where the show is blowing up. You've got press outside because of the Phil and Holly haven't queued for the Queen thing. then both of them leave the show I mean maybe it was a distraction at the time how did you cope with all that because it wasn't the easiest time of your professional career and then you've got everything going on in the background no I don't want to talk too much about it because it's it's kind of few in the story less mine I was only concerned at the time because she was still going out and she would still go to the shops get a paper or go for a coffee or something and she was chased down the road by journalists asking about me.

38:19What did I know about stuff? And she didn't know, but she was confused about it and it didn't help. So that's the one thing. All the rest of it is kind of part of the job. And that's partly the reason why I couldn't do the job anymore. I just couldn't do seven days a week, constant calls about what's in the press, what's not in the press or telling the truth. Let's just get the truth out there. so I had to take some time off from that to where I am now. But it was a moment, it was a time, it's just part of the gig.

38:50Camilla: Part of the colourful scheme of life. On to the treatment, she did the drugs trial initially for that year. I think it worked. Yes. Well, explain that because she could have been on the placebo but she could have been on the drugs. And we still don't know. Just explain what the trial was briefly and you were injecting her three times a day. The trial was still based on plaques in the brain that basically take over the brain and, you know, clog it up and, you know, close you down. And they reckon that the plaques may be generated by the liver in the bloodstream. And so this trial in particular was putting a serum of some kind into her stomach area three times a day with an injection, which gets close to the liver, which then, you know, goes up there, up to the brain, and hopefully reduces the amyloid plaques in there.

39:38And, yeah, we don't know whether it was placebo or whether it was the genuine drug or not, But I definitely think there was a difference in her. Now, this could have been because it was two years ago and there was hope. In fact, one of the doctors during the trial said to me, the most amazing thing of, you know, whether it's placebo or drug, what people don't add is the third one, which is hope. Yes. You may well be in the placebo, but the hope has got you through. And so maybe it was that, I don't know. But I definitely think life was better then, but that could be because that's just the progress of the disease.

40:09Camilla: Yeah. But what medication is available to her now? Well, again, if we talk about the Alzheimer's test being 50 years old, then she's on the same medicine her mum was offered. And that's pretty much it. And I looked into that one. That was first kind of created 40 years ago. So the main medicine is 40 years old for a disease that is Britain's biggest killer. Now, what does that say? That just says, for whatever reason, governments of every colour just don't want to know about it. Because I reckon if you really put the money and the investment into it, well, I know, it would bankrupt the NHS. Yes.

40:52We can't afford it.

40:53Camilla: So what are you saying? The NHS is like, bad luck. There are restrictions on the drugs that are available via NICE, probably a postcode lottery. If you get on a trial, then lucky you. But I'm sorry, we can't do much for you. Well, we have choices. Don't we have choices? do you want to spend a billion pounds a mile on HS2? Do you want to, just today as we speak, do you want to spend millions, many, many millions, on fat jabs, manjaro? God, that must be frustrating by comparison. Well, I understand people will need that, and obesity is a massive problem too. But then guess what? So is Alzheimer's.

41:27Or how much money are you putting into research? I've looked, trying to find out how much the Labour government is actually spending on Alzheimer's. Boris Johnson, just about the last thing he did was have a meeting with Barbara Windsor's widower to say, yeah, we're going to up spending to$160 million a year on research. I can't find where that is now. I'll bet it's not there. But Alzheimer's is costing the NHS$42 billion a year. $42 billion. And we're only talking even tops$160 million. I think, hang on, guys. But it's the poor relation to cancer. Because cancer is getting twice as much money than Alzheimer's does.

42:06Cancer gets, I'd argue, probably maybe five times as much or even more, maybe ten times as much coverage in the press on television than Alzheimer's gets. And I get it. It's tough to do Alzheimer's. Once you get it, it's a decline pretty much. You haven't got people going out there, being great, doing selfies, whatever it is. It's a tough story to cover, which we tried to do in this morning, my final sort of months and year there. But I get that. So it's not a sexy disease as some of the other ones are. But that's no excuse just to sort of, you know, push it into, not even just the long grass, let's just forget about it.

42:43I mean, let's not even talk about social care. When is that? Well, that's 2028. We'll find out about social care.

42:49Camilla: Nobody's talked about social care. It's too late. It didn't even feature in the last election campaign, apart from Lib Dems. It's too late for Fiona or people at her stage in life. 2028 is a long way away I hope they all get to see 2028 a lot of them won What do you think you've learned about yourself in this whole process? I'm not as boring as I thought I was I'm probably still a bit boring I'm not as bad as I thought I was I've learned that I've got two fabulous children I've learned that you're on your own you can't rely on the state to help you out. After all those years of, God, we've paid a lot of taxes, but you're still pretty much on your own.

43:34And we're lucky that, you know, we worked hard. Fiona's been working since the age of 11. So I was working since the age of 13. So we've worked hard. We've saved a bit. We've invested well. So we'll be all right. But it's other people who, you know, again, labor of taking the cap off of social care. So pretty much you'll sell your house now to pay for your own care. So what is there from the state for you when these dreadful diseases come around? Almost nothing. So you just have to basically, you know, s*** happens, you just get on with it.

44:05Camilla: And what have you learned about Fiona? That she's stronger than I ever thought she was, which makes it even more harder and hurtful when she's frightened, as she does get with these things. And that really worries me. I mean, she was a woman who, for her second child, Mackenzie came so quickly she didn't even get any drugs so she was a drug-free birth natural birth so when Fiona says she's in pain you better believe she's in pain so she's she's riding this wave of that just now and we're helping as best we can but she's a fighter an absolute fighter and the worst thing is that I know no matter what we do or any kind of noise we make about this it is going to come too late for her.

44:54And sadly for many, many people, I think they're working on numbers where children born today, one in three of them are going to get Alzheimer's. They're going to die from Alzheimer's. They're going to get a terminal disease if nothing is done between now and by the time they get into Sniper's Alley.

45:12Camilla: What do you hope the book will achieve? Just keep the conversation going. If the conversation's started at all, and I don't think it has, I think people hopefully will just take one piece of advice that I would give them and I don't think is in the book so this is an exclusive for Telegraph listeners readers viewers is get yourself a hobby no matter how invested in work you are career person get yourself a hobby because that's exactly what you need the one thing that would help you through would have helped her through more I mean I sail a bit I'm lucky to have done a bit of that and I've got a few more things than she has but she's pretty much just worked all her life so when people come and they say and bless her vicky mcclure was on this morning a couple of years ago with her star of line of duty just to with her dementia choir and i remember going home to fiona and by that point it hadn't been public but we knew and i remember saying to her i'm saying to myself how am i going to broach this i'll just go for that anyway i said oh we had vicky mcclure on the town on the show today oh yeah yeah line of duty yeah yeah i'm just wondering have you ever thought of joining a choir i dread to think what the reaction to this was she said right off but it's but and then and then and then you and then you say when you say what about jigsaws and she just looks at you with sort of you know incredulity jigsaws or watercolors but the point is if she had something it would actually just would help her through so my advice to confirm for people unfamiliar with this does she have the cognitive ability to hyper focus on something like that it's the patience but then i don't think she's ever had patience to do those kind of things but yeah it's finding something that she would really like to do i mean she's always like fashion but i don't know how you to turn it into a hobby as such but my advice to anybody is just hopefully you're never going to, you know, dementia is never going to visit your doorstep.

47:09But just in case it does, or for lots of other reasons, have a hobby, have some interest that you can take with you from where you are right now to the grave. And that will help you get through all these things. Certainly with Alzheimer's, it will help you get through.

47:25Camilla: You said you weren't going to be doling out advice. What I was going to ask you was not for your advice to people who are also going through this, but I was so struck at the beginning of the conversation about you having felt so socially isolated what advice can you give to people who aren't going through it directly but have friends who are because clearly friends have been found wanting here and people out in the street you know literally turning the other way how should people try and engage with people who have got Alzheimer's and their families Well, just recently, Richard E. Grant, who of course lost his wife a few years ago, he posted something that was really interesting and I kind of agree with him on this.

48:08And he got it from Nigella Lawson. He said during the time that she lost her husband and her family were grieving, people would say, look, can I come round? And she said, I'd rather not, thanks. So what people did was they would make batch cooking. They'd make food and they would leave it on the doorstep, ring the bell and then just go. whether you want it or not. Yeah. And Richard E. Grant said she did that for him. She actually dropped these things on the doorstep.

48:35Camilla: Lucky thing. Had Nigella doing his batch cooking. I know, but just anyone, because I do find, and Fiona hasn't cooked for two years, I am the cook, God help everyone. Yes. And so it is my kind of repertoire of student recipes. And I wasn't even a student. I went straight into work, so I haven't even got student recipes. So it's pretty much the same kind of things. Or God help us. it's a lot of Marks and Spencer, but you've got to try and keep people as healthy as you can. So that would have been a great help. Less so now, we don't really need that help. But my advice or my suggestion would be, if you know someone who's going through it, food is the thing that they could really do with a bit of extra leg up on, so they don't have to, at the end of a frustrating, tiring day, then think about either the shopping or cooking.

49:23It's just there to heat up.

49:24Camilla: really good advice Martin thank you very very much indeed for your candle both in this book Fiona Phillips remember when my life with Alzheimer's and please send our love to Fiona I will do thank you

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