"Imagine forgetting where everything is..." " Where are you going?" " Toilet." "Down that corridor." "..being confused by a kettle..." "There's smoke coming from here." "..and getting lost in your own home." "For 55-year-old Chris Roberts, this is the reality of life with dementia." "It's fine like that, isn't it?" "The person I miss most is me." "For the last 18 months, Chris and his family have opened up their lives to the cameras." "People say, "Oh, it's like losing somebody." ""It's losing little bits of them all the time."" "It doesn't feel like that for me." "It feels to me like he's leaving me." "And there's nothing I can do about it." "'I wouldn't say I was frightened of what might happen, 'but it just the forgetting me.'" "Him not knowing who I am." " Happy Christmas!" " Happy Christmas!" "CCTV and video diaries..." "Dad?" "Do a cheers!" "..give a rare and intimate insight into a family adapting to dementia." "Oh, yes." "Put I would rather not die at home." "So, what if you're at home when you become ill?" "I'd rather not die here." "I may have dementia, but it doesn't have me...yet." "HE YELLS" "I'd just like to say to all my family, I love you all." "I always will." "For the days that I, um... ..maybe can't say it." "And it's in gear!" "We got pegs?" "All the way around." "Right, you need to thread the poles in where the colours are." "Chris Roberts and his family arrive for their annual camping trip on the North Wales coast." "It's always important to get the family together and make memories." "It's nice, cos when you think about people, you think about the good times." "So the more good times you can have, the better you think of people and the more you remember it." "It's a chance for teenager Kate to catch up with her brothers and sisters." "She's the youngest of five." "It's been nice, all of us actually being together for a change." "Just doing what we used to do." "Chris and Jayne have been married for two decades." "It's a welcome break from life at home." "Not too far because..." "Part of the fun of it is, when it's raining and it's bad weather and then the sun comes out." "They're just out there having fun, like they should be." "Like an ordinary, normal family." "So it's good." "It's nice." "So I'm hoping that they'll remember all that stuff, rather than what's going to happen later on." "This family has been living with dementia for five years." "I'm surprised we got that up." "Tiring for anyone, isn't it?" "But it makes me...makes me cloudy, makes my dementia worse." "Do you want a trolley?" "We've been filming with the Roberts family from Rhuddlan in North Wales for more than 18 months, as Chris's dementia progresses." "I'm actually shaking." "Everything's pronounced." "Everything's exaggerated." "All the noises, just the open spaces." "It's forced them all to come up with ways to adapt and cope." "I've learnt to keep my eye on her and then I won't forget where I am." "She reminds me that I'm here for a purpose, otherwise I can forget where I am." "I can go wandering off." "Right, this one's quiet." "They began noticing changes in Chris three years earlier." " Am I going too fast for you?" " No." "He was just becoming more and more unusual." "Not himself." "Sometimes, he can get a bit short with us." "Just get very angry." "Very, very cross." "Shouting at them, blaming them for things." "And, um...it was totally out of character." "Peas!" "I do need peas." "We'd started to bicker, and we've never rowed." "We never argued." "I still put it down to changes that were going on and not being able to cope." "You know, maybe it was a coping strategy." "Shout!" "All done, all done." "Let's go." "I was a bit shocked for a moment because where I thought he was going to sit, he went straight past." "I thought he'd gone wandering off." "So I got that slight anxiety of, where is he?" "Like you would with a child." "Chris has had to stop driving." "It was a tough decision." "Everyone seemed to be honking their horns." "Nothing was automatic any more." "And unknown to me, I was concentrating so much on driving," "I wasn't..." "Junctions were mine, roundabouts were mine." "I was driving straight across." "So this is where all the honking of the horns came in." "They were actually honking at me." "I'd pull over in the car because I couldn't remember where I was going." "And this is a lot of stuff that even the family didn't know." "Chris ran a custom motorcycle build-and-repair shop." "He was a keen biker." "One minute, you're going out with all your biker friends on a Sunday and then you don't live the same any more." "My life completely changed the day I gave up my licence." "Completely changed." " What year are we in?" " 2015." " OK." "I've been saying '14 for some time." " You said '14 last time, as well, but it's OK." " Oh, right." "Chris has volunteered to be tested every six months as part of a research project to assess how well he's living with his dementia." "When you get given a diagnosis, the only thing you can cling to is a little bit of hope." "And research gives you that hope." "What I'm going to do now is give you three words" " which I'm going to ask you to remember." " Mm." "So the words are "lemon", "key", "ball"." "Lemon, key, ball." "OK, good." "So try to remember those." "Chris was given a similar test when Jayne took him to see his GP." "It was "apple", "table", "penny"." "Repeat them back." "So Chris repeated them back three times, then she said a few more questions, then she came back to, "What were those three objects?"" "And he could only get one." "And alarm bells are screaming at the back of my head because two years later..." "..I can remember those objects." "And in the space of five minutes, he was unable...unable to remember the objects." "Can you remember those three words I asked you to remember?" " Lemon." " Good." " There's two more." " No." " No?" " No." " OK." "Chris was diagnosed with vascular dementia and young-onset Alzheimer's aged 50." "So what I'm going to ask you to do next is to draw me a clock face with numbers on it and then put the hands at ten past five." " Um...clock." " Yep." "They say to you, "Draw a clock," and then I'm stumped." "Like, what do I do first?" "Do I do the dot first, do I do this first, do I do that first?" "And what about the hands?" "Do you want to put the hands in now?" " At what time?" " Ten past five." " No, I can't do that." " OK." "No worries, no worries." "Thank you." "It sounds such a simple thing to do, but it's a very hard process." "Right, thanks very much, Anthony." "I'm a bit relieved now it's all over." "Whoof!" "I like Anthony, but I'm always glad to see the back of him." "The best thing you can do after your diagnosis is read up about it." "Find out all you can." "It's the unknown that scares us." "Dad, do you want to grab the end of that?" "Life goes on despite dementia." " Do you need, um...?" " No." " ..books, or something?" " CHRIS AND KATE:" "No." "But increasingly, Chris is on a short fuse." "You're just annoying me." "'It's much less easy now than it was six months ago." "'Some days, it doesn't matter what I do, it's not going to be right.'" "This is square on this." "Yes, we've walked all the way around it and it's the same all the way around." " This gap is the same all the way around." " Sorry." "I don't know what you don't understand about what I just said." "'I can't do right for doing wrong." "'That's not my Chris, that is the Alzheimer's." "'That's very, very hard, being criticised constantly.'" "Without the diagnosis, we probably would be this close to divorce now." "And we love each other dearly." " It goes right over, does it?" " It does." "I can actually fold it..." " Right, yeah, well, don't." " And then it..." "I'm a teenager, that can be hard, not arguing back." "But I just got on with it and learnt to not bite." "Huh!" "Kate was 14 when her dad was diagnosed." "'I wouldn't say I was frightened of what might happen, 'but just him not knowing who I am." "'That's the only thing, really.'" "I don't mind helping him if he can't do anything any more, when he needs a drink and I'll have to give it to him or if he needed to brush his teeth, I can do that," "but it's just the forgetting me." "It says at the front, if you get confused, ring IKEA." "CHRIS AND JAYNE CHUCKLE" "It does say that, though." "Right, stand it on there." "It's a bit big, isn't it?" " The job's nearly done." " Huge." "But for a DIY expert like Chris, it's not as simple as it used to be." "I've got absolutely everything in here." "It's just remembering what's what." "I don't know what half the stuff is, so it just gets..." "W-What is this?" "So it just gets put on one side, put on one side and put on one side." "Nothing gets hung up any more, nothing's arranged any more." "By chance, he finds what he's looking for." "DRILL WHIRS" "Well, that's good." "I'm..." "I'm nervous as hell now." "Stressed, anxious about the whole thing." "Even starting it, I was." "I could quite easily have gone," ""Do you know what?" "Let's get someone in."" "But I know, with the help of the others, I can get this done." "And then it's..." "You've got the satisfaction afterwards." "It makes you feel good again." "It makes you feel worthy again." "'I've always been a master blagger." "'And I want to present as normal as I can." "'I want to remain as normal as I can for as long as I can." "'And I'm becoming quite good at that." "I'm becoming very good at it.'" "Is that it?" "Yeah, very happy." "I'll make you a coffee now." "It's nice for us to get out, isn't it?" " Just to make sure you get home." " Yeah." "The only driving Chris does now is his mobility scooter." "I want a bigger and a faster one now, though!" "I don't go out much." "I tend to look about two or three foot ahead of me because I'm always looking for steps and kerbs and inclines and things like that that affect my balance." "I think it's quite sad when your 16-year-old daughter's turned into her father's carer." "I don't see it as caring, though, I see it more as, like..." "Looking after your dad." " Just keeping an eye." " Yeah." "Kate's left school, giving her more time to "keep an eye" on her dad." "'I'm the only one of his children living here now, 'so I get all the time with him.'" "I have to have someone with me all the time, 24/7, because I don't understand sometimes about the dangers of going outside and being on my own." "Um..." "I can forget to leave the cooker on." "It is a lot safer if someone's here all the time." "Do you want chicken, or chicken and mushroom?" "Er..." " Erm...chicken, please." " OK." "I find it very difficult making decisions." "So it's a lot easier if she shows me." "Because I can see exactly what she wants me to make the decision about, rather than trying to remember, "What did she say first?"" "So I usually end up going for whatever they said second." "And we've...we've learnt that ourselves." " Do you want any bread?" " No, thank you." "So, you had some bread, then?" " Did I say no?" " Yeah." "Everyday tasks are becoming more challenging as Chris's vision and co-ordination are impaired." "It takes a lot of thought to peel a potato." "It takes a lot of thought process to hold the potato, move your hand alternately to what the other hand wants to do." "It's quite a struggle to peel a potato." "You're going to have to peel them." "I'm struggling to peel." "'People don't realise that you don't see so well any more with dementia." "'I don't see potatoes very well." "'And I know in care homes, they've started using coloured crockery now 'to show up the potatoes, to show up the cauliflower cheese." "'And people are eating better.'" "I'm done now, anyway." "Yeah, it's quite enough for me." "I don't eat much these days." "Some people try and hide from their dementia." "Hiding is easier than facing up to it sometimes." "But you can only run for so long." "Dementia WILL catch you up." "You WILL have to face it." "You WILL have to live with it." "Chris is one of 850,000 people living with dementia in the UK." " It's in the car, isn't it?" " It's miles to walk." "One of the first things he did after diagnosis was to choose his own care home." "Today, he's going in for some respite care, for him AND the family." "I've looked for a care home, I've made the decision and it's my choice." "This is entirely my plan." " But I have got dementia!" " HE LAUGHS" "HANDLE RATTLES" "Locked, isn't it?" " See you later." " See you later." " Ta-ra." " What time?" " I don't know." " OK." "Whatever time you want to come and get me." "Jayne is finding the prospect of leaving him in a care home overwhelming." "SHE SOBS" "I struggle with it." "(Sorry.)" "There are more than 40,000 people under 65 in the UK with dementia." "I'm 53." "I was diagnosed with dementia about three years ago." "I've got vascular damage and Alzheimer's." "Chris and Jayne have thrown themselves into raising awareness of the disease." "Folk who are not prepared at this time can suffer a lot of shock and anxiety." "I know I did." "'It actually makes us a team again." "It brings us closer together." "You can fall through the net quite easily, and that's why I decided to give dementia a voice." "Thank you." " Thanks very much." " That was excellent." " Thank you." "Tiring, but good." "I think it went well." "We got a nice round of applause, so that's an indicator." "If it went badly, we wouldn't get anything." " SHE LAUGHS" " Yeah." "Chris finds night-time journeys particularly challenging, so he wears sunglasses." "My sunglasses - because, then, the lights aren't as bright and so I don't get as scared." "I'm not looking out of the front window." "The lights look like they're coming straight towards you." "It's just quite scary." "DO BARKS" "Home at last." "Jayne locks up for the night." "I've closed the curtain, but I've also put the alarm on." "If Chris does get up in the night, the curtains have so far stopped him seeing the door and going through it, but there is an alarm in case he does go through the curtains, and it should hopefully wake one of us up" "and alert us to Chris going out." "With the dementia mind, if you can't see the door, you don't know to go through it." "Chris was once discovered walking in the street in his dressing gown at 4.00 in the morning." "Luckily, this policeman found him and brought him back." "I went down and I was, like," ""Are you OK?" And he was, like, "Get away from me!"" "Like he didn't who anybody was." "He didn't know where he was in the house, or anything." "I've just got up." "No-one's in the house." "Wandered around, shouting, searching." "Can't find anybody." "Trouble is, I don't know whether I'm dreaming or not." "Can't find any notes." "It's really strange when you don't know what's real and what isn't." "The family has allowed us to install seven cameras in their home." "They capture the impact on family life behind closed doors..." "..as things become more confusing for Chris." "I can get lost in my own house." "I can walk into a room and nothing is familiar about it." "I don't know where anything is in the house any more." "It's like someone's moved you out for a couple of years and moved you back in again." "I just have no memory of where things live any more." "I have to open all the drawers and cupboard doors and search for everything these days." "Instead of hanging his coat up, Chris puts it in a kitchen cupboard." "He was, like, "All right, OK."" "And he was sat there with me, went through..." "Two days later..." "Night-times can be a problem for Chris." "PIANO NOTES PLAY" "The curtains across the front door are doing their job..." "..but he tries every other door that he finds." "I find it very difficult to sleep now." "It's really confusing when you get lost in your own house." "And it looks so different at night-time." " Chris?" " Mm?" "It's 7.45." "We've got to get up." "Today, Chris is going for another day's respite in the care home." " I've got coffee here for you." " Thank you." "But mornings are often a challenge for him." "Saturday morning, I woke up and wasn't sure if it was Jayne next to me or not." "But then I thought, "No, it has to be." "Don't be silly."" "And then she spoke, so I realised it was." "Can you take the coffees?" "Could you take them both?" "It's burning me." "Take that one first." "Sit up." "'When you wake up, first of all, 'you've got to remember what comes next.'" "I've actually laid there and I've had to be prompted to get out of bed because Jayne's come in, "Oh, you're awake"." ""Yeah, I've been awake for some time."" ""Well, why didn't you get up?" "I didn't think to."" " Are you taking a coat?" " No." " Do you not think you need one?" " No." " Give me two ticks." " Why?" "You can have that when you come back." " I don't need any money, do I?" " You're just taking me down the road." "'I used to be a very patient man.'" "I would hardly ever, ever, ever lose my temper." "But now I lose it quite, quite daily." " You ready?" " Yeah." " Huh!" "I am looking forward to having a day off." "It's been a very hectic month." "So I'm looking forward to it." "No-one's going to be asking me any questions, no-one's going to be asking if I want a coffee or something to eat or..." "They're just going to leave me alone, which is nice." " All right, I'll see you later." " All right." "Ta-ra." "Chris has been coming to this care home on occasional day visits for seven months." "I was having trouble dropping my husband off for day respite, but now, actually, it does us both good." "I'm much better about it now because he's that bit much more advanced." "It also gives me that time off from treading on the eggshells." "Dropping him off, him going through the doors, I breathe." "'It's relaxing." "'No dog, no wife, no children." "'And it works." "'I need to come here more often." "Definitely.'" "But the disease is taking its toll on their relationship." "'There's a distance between us that wasn't there before." "'There is no physical affection between us any more." "'I think that could be because I've stopped trying.'" "You know, I'll kiss him at night in bed, but I'm kissing a cheek that isn't even offered to me." "We don't have that intimacy that was going six months, but at least it was still there." "That's very difficult." "'While Jayne's away, I try and think about what she looks like 'and I have no recollection." "I can't get the image in my head." "'All I get is how she sounds, more than a picture." "'And that doesn't take long." "'She can just be gone an hour and I think to myself," "' "What does Jayne look like?" '" "It's the end of the day and time to pick Chris up." "I've had a good day." "I don't know if you can hear it in my voice." "Yeah, some me time." "When I go in, I have to almost introduce myself, if you like, rather than him not recognising me or not being sure who I am, or any embarrassment like that." "I just go in and let him know it's me." "Chris?" " Hiya." "It's me." " Hiya." " You all right?" " Yeah." "Kate knows her dad is struggling to recognise her, too." "It was a shock, because your parent doesn't forget who you are." "I'm getting to know the face he does when he doesn't remember me now, which is quite upsetting." "If there is a face that he, like, does when he forgets who people are," "I shouldn't recognise it for being me that he's forgotten, it should be people he doesn't see." " You getting in the front?" "Do you know who I am now?" " Yeah." " THEY LAUGH" " Yeah." "That insight, that remnant of me, is becoming less." "It's definitely becoming less and less." "I'm becoming a new me, which I don't particularly like." "The person I miss most is me." "Mum's back on Saturday, not Friday." "Oh, OK." "How do you know?" " I texted her." " OK." "Kate's in charge for the next few days while Jayne has some time off." "Chris quickly accepts life without her." "I'm not bothered." "I know Jayne was ready for a break." "I'm not emotional like that any more." "Yeah." "It hasn't bothered me in the least, which is not a very nice thing to say, but there you go." "That's what it's like." "Two, please." "Each time Jayne goes away, she fears what might await her when she returns." "One of the downsides to having a week off is that you come back full of it and then nothing's changed." "In fact, it might have progressed a little bit more." "People say, "Oh, it's like losing somebody." ""It's losing little bits of them all the time."" "It doesn't feel like that for me." "It feels to me like he's leaving me." "I don't let things like that..." "I try and be indifferent to them, because that's my coping mechanism." "Being indifferent to it." "So it's not that I'm losing all my emotions," "I'm having to lose them, as well." "The saying around here is, "That's your problem, not mine."" " I've got enough problems of my own." " SHE CHUCKLES" "And that's just it." "If somebody is leaving you, it's your problem and... ..they just leave you." "They can't comfort you better because they're making the choice to leave you." "I know this isn't Chris's choice..." " ..but that's how it makes me feel." " Mm." "And there's nothing I can do about it." "I may have dementia, but it doesn't have me...yet." "It's Chris and Jayne's 21st wedding anniversary." " Is that all right?" " CHRIS CHUCKLES" "She hasn't got me one because she thought I'd forgotten." "He didn't have a clue when I said happy anniversary to him." "As good as he was at covering it, I could see he didn't know." "So that shows an advancement to me." "I did get Jayne a card." "My daughter texted me this morning and reminded me - card." "So I sent my other daughter out for a card." "Cos I don't go out on my own these days, I'm not very good with money." "In fact, I don't even carry money these days." "She'll open it thinking it's yours!" "And I know for a fact she hasn't got me one." "Because she thinks I'll forget and I won't get one, which is great." "That gives me a lot of satisfaction." "Remind me afterwards." "Remind me." "Just for once, I've got the edge on the memory thing, which is great." "Makes me feel like I haven't got dementia at all." "I'm cured today!" "Chicken chow mein?" " Yes, please." " That's what I usually have." "That looks really nice." "I'm like that, so I can get the sound into my ears!" "It works!" "Just go like that and then you hear better." "He's chosen his favourite Chinese restaurant for a reason." "'I'm not very good at cutting my food up these days." "'I can't use a knife and fork any more." "'I've problems coordinating my hands." "'So I usually try and choose something that's already chopped up 'and not having to pass my plate to someone else for them to do it." "'It spoils the atmosphere when people see that.'" "But as the evening wears on, Chris is finding it hard." "'It can be very difficult to keep up with people's conversations." "'I tend to just quieten off, to be honest, 'because I can't hear anybody." "'You end up just retiring, and keeping to yourself." "'Being on your own in a crowded room.'" "Back home, Jayne finally gets her card." "Brownie points all round!" "Excellent, I can still do some things right!" ""Trust" has become quite a big word in my vocabulary at the moment." "I'm having to trust." "Trust that today is Friday, trust when I'm told I'm taking my tablets." "Trust when a fact I believe in hasn't actually happened." "So "trust" is a huge word at the moment." " You want anything to eat?" " No." " Have you had your tablets?" " No." "Are you sure?" " I put them there." "Did you just move them?" " I don't know." "It's Friday, no, you haven't." " SHE LAUGHS" " It's Thursday!" "Chris, I think you've already had them." " What?" " Yeah!" " SHE LAUGHS" "As Chris's dementia symptoms increase, life at home becomes more demanding for Jayne." "'I forget to eat and I actually don't get hungry any more either, 'so I'll eat when it's given me, 'because I have no recollection of when I ate at all." "'If it wasn't for Jayne or Kate, I'd probably be in a care home now." "'There's no way I could look after myself.'" "With Jayne taking more and more responsibility, difficult decisions have to be made." "You can put I would rather not die at home." ""I would prefer not to die at home."" "Put that in." "Chris is writing his Lasting Power of Attorney, for when he can no longer decide for himself." "So what if you're at home when you become ill, if you haven't already gone into a nursing home?" " What?" " Would you be happy to stay here or want to go into hospital?" "HE SNIFFS" "I'd rather not die here." "'I've got no control over my death." "I haven't chosen a death.'" "That's what little control I have." "I've chosen what little control I have over it." "And the more decisions I make, the less decisions my family have to make, so it's protecting them, really." "That's why I make a lot of decisions." "So if you were in a...seriously ill, it would be right" " to let you go to hospital?" " Yeah, yeah." "Why not?" "I was asking, that's all." "They're not the sort of questions I would have thought of." "But then I don't want treatment either, so..." " So we would have to..." " Tell them." "'I think it's better if I don't die at home." "'Then there's not a room where I died." "'And I know what Jayne is like, and I think 'she'd cope with it a lot better if I died somewhere else.'" "This has made him think even more seriously about a longer stay at his care home." "Not just during the day, but overnight, too." "I think no more denying the fact I've got Alzheimer's or pretending everything's going to be OK." "I really just have to get used to this new life." "Stop yearning for the old one." "I must try and live in the now." "'Make the now as good as possible.'" "Is it down there?" "Yours is staying up now." "'It's getting worse now, my memory is starting to fail a lot." "'It's just difficult because I know that I'm progressing." "'I'm getting to maybe another stage, and then that means I'm not far 'away from other stages which I don't want to think of yet.'" "It's day two of the family holiday in Llanbedr, North Wales." "Student Sadie admits her dad's diagnosis hasn't quite sunk in." "'I've not really got upset about it yet, I'm just living in the moment.'" "Yesterday's homecoming felt bittersweet." "Her dad didn't recognise her." "I've been in uni and I haven't come home for ages and I turned up as a surprise." "And she run in the room, put her stuff down, "Hiya!"" "and I thought, "Be polite!"" ""Hello."" ""Hiya."" "And he was like, "Just come in."" "And she went, "It's Sadie,"" "because I think it dawned on her and I went, "Yeah, I knew."" "He wasn't expecting me or didn't know I was there." "But it wasn't really much, it was just like, "Why's she here?"" "I had no idea, no idea." "Which is sad." "It's always sad." "It gets to my heart every time that happens, every time." "And it happens a lot." "Don't forget the children." "The children also need to know what's going on." "They might come up with all kinds of ideas, they might even be upset without you even realising." "Don't forget the children." "'I was a bit sad today, watching them." "'I don't enjoy things any more." "But it's good to see them doing it.'" "I'm probably the lucky one in all this because I'll forget." "They won't have that luxury." "Do you light it in all the corners?" "Whoo!" " KATE:" " 'It's been nice, all of us actually being together 'for a change." "'He's had a good sleep last night so he's really himself today." "'So it's not like we've had a holiday and had to look after him.'" "It's like we've had a holiday with his old self." "'I probably shouldn't drink at all, really." "'It makes me more confused, it has more of an effect on me nowadays, 'but it's the last thing I've got left in life." "'It's the last vice I have!" "'" "Eldest son Christian is still coming to terms with his dad's diagnosis." "'Very big shock, it's not nice to hear." "'You don't think it's going to happen to your own family, 'especially at his age, as well.'" "He's kind of turning into someone else." "It's..." "I don't know, he's not the guy he was before, I don't think, now." "It's changed him, as a person, a lot." "When you look at him, you see he's different." "Like he's somebody else." "'I think get-togethers are important, 'spend time together as much as we can.'" "Cos obviously things are only going to get worse." "'And I love him to bits.'" "Dementia doesn't exist here." "Which it doesn't - look." "They're all having a nice time, they're playing card games." "That's how it should be." "For Jayne, the holiday has brought home how much she needs a break away from Chris's dementia." "I'm on edge a lot at home, all the time, so it's..." "That's how I know it's time." "I need respite, and I didn't think I'd ever say that." "He wants to go in and have respite overnight for himself." "I'm not ready to let him do that, and one of my biggest worries is that..." "I won't want him to come home." "I might like him being there." "So I..." "I can't risk him going in for week and me not wanting him back." "And that's how it is." "Well, the seasons are progressing." "Autumn's here." "Appeared very quickly." "Didn't even see the signs." "Just went dark overnight." "Same as dementia does, really." "My dementia is progressing." "Sometimes it goes dark, literally, overnight." "OK, when I hold it like that..." "Kate has hit a landmark birthday." "But there's no escaping her dad's dementia, even on her special day." "THEY SING Happy Birthday" "So how did you feel about last night?" "It was all right, but towards the end, it was more like..." "I'm not being selfish, but..." "More keeping an eye out on Dad." "Chris got lost in the restaurant." "I stood up because we were on the second level and I waved at him and he looked at me, but then I don't know if he just didn't see me, or if he saw me and didn't know." "When he doesn't know who I am and I'm actually there, I'm a bit upset about it, but when it does click in, it's like he's still there." "It takes the upset away." "Yeah." "But later on, it's just like, why us?" "Yeah." "When you're talking to your friends, or...?" "I don't talk to them about it." "Not at all?" "What about Ashley?" " That's the bottom, isn't it?" " Yeah." " Plug the next bit into it, please." "I want to put that bit in there." "It won't go in there because the wires won't let you." " It was never this hard last year." " You've never done it before." " I'm sure I did last year." " You didn't." "Chris is becoming increasingly agitated." "What are these bits, Dad?" "We don't need them." "'I'm just very anxious at the moment." "'I'm not in a good place.'" "You haven't tightened the bottom, have you?" "I can see it wobbling." "Over the last two, three months, it's got progressively worse." "I'm not in a good place at all." "Probably one of the worst places I've ever been." "And one day, tempers reach boiling point..." "..in a row about jobs around the house." "That evening, Chris tries to make sense of what's happened." "Then the argument flares up again." "HE YELLS" "'We heard Chris let out a yell and went in, and he just dissolved.'" "So overwhelming for him that he just cried for help." "That is the only time that he's ever been unable to deal with it." "And then, after the event, life goes back to normal." "All these need folding out." " Do you want to help?" " No." " Are you looking forward to Christmas?" " No." "It's just stressing me." "I don't know why." "It's just stressing me." "If I had my way, I'd cancel it." "It's all the decorations and the cats jumping around everywhere, and mess and hassle and change." "It's just...nightmare." "Nightmare." "Having to change what you're doing and where you're sitting" " and..." " Well..." " ..getting ready and putting things together and wrapping" " and..." " You don't have to wrap." "No, it's all just..." "It's just mithering me." " Thinking about it?" " Yeah." "You will make the effort on the day, won't you?" "We've got guests." "Well, I'll have to, won't I?" "DOORBELL RINGS" " GUESTS:" " # We wish you a merry Christmas and a happy New Year!" "#" "LIVELY CHATTER" "LOUD POP" "Christmas actually didn't turn out as a bad as I thought." "I wasn't really in mood to eat, so I left most of my dinner, but quite enjoyed just being sat there, watching everybody else enjoying themselves." "Quite enjoyed it, actually, considering all the fuss I made." "So...didn't turn out so bad, at all." "New Year - not doing so much this year." "Keep it a bit tighter, I think, and see how things go." "I must stop rocking, Jayne." "I know." "I didn't want to tell you, though." "I've got an irritating habit... habit of rocking now." "It...it...it calms me down." "Chris is entering a new phase in his dementia." "We're a bit disappointed the way things are moving so quickly, and I'm becoming less able to do anything now." "So, I'm glad I did what I've done." "I've tried to stay in control of it, but dementia is... is getting a grip now." "It's becoming much harder for him to process information." "Jayne says, "I'm sure your hearing's going."" "And it's not that I don't hear it" " I don't understand her." "So, I have to ask again and then I can sort of understand." "The dementia symptoms are more pronounced." "We know we only have a window of time, before it all goes pear-shaped." "There is one thing Jayne's pleased Chris HAS forgotten." "He did want to go in and have a rest overnight, and now that overnight respite seems to have been put back." "He hasn't mentioned it for a while and, you know," "I'm not going to remind him." "I'm actually starting to notice my symptoms less, to be honest." "I haven't got the same insight as I used to have." "I've got the easier part of the illness now, I think, to come." "Took a big hit this year when I realised I was starting to struggling with my reading." "That really got me down." "Um..." "Nearly as bad as losing my driver's licence." "But it's just another thing, isn't it?" "Just got to move on and concentrate on what you can do." "But these days, it's getting...not a lot." "The whole experience is getting difficult." "I think you can live with dementia, but I'm not sure about living well any more." "I was diagnosed, when I was 50, with Alzheimer's and vascular dementia." "I'm now 54..." "Chris has come to a big decision." "He is going to bow out of the conference circuit." "..So, this is probably my last formal speaking engagement, but I will carry on with committees and research groups and Dementia Friends." "I will carry on for as long as I can." "I'm feeling quite relieved, cos I don't have to do that again." "I am going to carry on doing something or other." "I have to, otherwise I'd be doing nothing and I think nothing will then increase the progression even more." "But our story is not finished yet." "We do know how it will end, and it will not be a happy ending." "'Jayne has turned into a brilliant speaker." "'We need to get her out doing it more.'" "We, after all, know how precious time is - and our clock is ticking." "Thank you." "'So, that's what I want to do now." "I want to travel with Jayne!" "'" "I can sit back and watch HER do some speaking." "DANCE MUSIC PLAYS" " Why have you got your fingers in your ears?" " I can't hear." "'On Friday, we went to a wedding - my cousin's." "'And it was nice to see Dad chatting a bit, 'cos his balance is not very good at all any more." "'He didn't want to dance at all." "'So, I had to sit down and be with Dad for a little bit.'" "The father of the bride was doing a speech about the old times and it got me quite upset, because I think maybe my dad won't be able to give me away." "Or if he's even here." "12 hours later..." "Woke up, really, really... um...erm...poo...poo...poorly." "Really bad head." "Nauseous." "I couldn't swallow properly and had trouble with speech." "His speech is dreadful - very difficult to get out." "Yeah, I know what... what to say...say, but I can't.... can't do...do it...it." "With Chris admitted to hospital, it's a tense time." "It's brought it home to me just how fragile life is." "We'd had a fabulous family wedding." "Within three hours, your life's changed - again." "Providing Chris is going to be OK, everything else can be sorted out." "And Chris WILL be OK." "Um...he always is." "After four days, Chris is back home." "I think I had a mild stroke... and...affected area that's already damaged." "My first thoughts were," ""What now?"" "HE LAUGHS" ""What now?" "What's being thrown at me now?" "!"" "'Speech getting better... so we're on the up." "On the up.'" "Just another...another hurdle." "Another obstacle." "Where are we going?" "I'm thinking Ilkley Moor, because I took the dog on Ilkley Moor before, but the problem with the moor was the dog fell in a bog!" "LAUGHTER" "A month later and they are back on the road." " Ooh, Worcester sauce!" " Throw it by here, Kate, so it goes on the floor." "That's it." "Whatever dementia throws at them, Chris and his family are determined to enjoy life together... for as long as they can." "I really hope that the programme helps people and doesn't scare them." "I haven't done this to scare anybody." "So, go like that." "'You've seen that I still live." "I still have a life.'" "Yeah." "Just different quality." " I'll just make sure you get home." " Yeah, yeah." "It is all changing." "It's changing quickly, but... ..what can you do?" "Ah!" "We have so many laughs." "Like, we don't laugh at Dad, we laugh WITH Dad." "But there is so many things that have happened because of it, which have, like, given us extra memories." "So, it's not ALL doom and gloom." " Have we been...?" " We've been across the valley before." "When Kate..." "'It is so, so important to make the very best of the time 'that we have got, and we HAVE to enjoy ourselves,' because otherwise, we are going to be sad..." "We're definitely going to be sad later on." "Let's not be sad now and bring it too early." "Is your hair...darker?" " Yeah, I coloured it with a dye." " It looks different." "Don't be scared." "Don't be scared." "Live life." "Take it by the danglies... and run with it." "I bet that doesn't get shown!"