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Imagine forgetting where everything is... | 0:00:02 | 0:00:04 | |
-Where are you going? -Toilet. | 0:00:10 | 0:00:12 | |
Down that corridor. | 0:00:12 | 0:00:14 | |
..being confused by a kettle... | 0:00:15 | 0:00:17 | |
There's smoke coming from here. | 0:00:17 | 0:00:19 | |
..and getting lost in your own home. | 0:00:23 | 0:00:25 | |
For 55-year-old Chris Roberts, | 0:00:30 | 0:00:33 | |
this is the reality of life with dementia. | 0:00:33 | 0:00:36 | |
It's fine like that, isn't it? | 0:00:36 | 0:00:39 | |
The person I miss most is me. | 0:00:39 | 0:00:41 | |
For the last 18 months, Chris and his family | 0:00:41 | 0:00:45 | |
have opened up their lives to the cameras. | 0:00:45 | 0:00:48 | |
People say, "Oh, it's like losing somebody. | 0:00:48 | 0:00:50 | |
"It's losing little bits of them all the time." | 0:00:50 | 0:00:53 | |
It doesn't feel like that for me. | 0:00:53 | 0:00:54 | |
It feels to me like he's leaving me. | 0:00:54 | 0:00:57 | |
And there's nothing I can do about it. | 0:00:57 | 0:01:00 | |
'I wouldn't say I was frightened of what might happen, | 0:01:06 | 0:01:10 | |
'but it just the forgetting me.' | 0:01:10 | 0:01:13 | |
Him not knowing who I am. | 0:01:13 | 0:01:15 | |
-Happy Christmas! -Happy Christmas! | 0:01:15 | 0:01:17 | |
CCTV and video diaries... | 0:01:17 | 0:01:20 | |
Dad? Do a cheers! | 0:01:20 | 0:01:22 | |
..give a rare and intimate insight | 0:01:22 | 0:01:25 | |
into a family adapting to dementia. | 0:01:25 | 0:01:29 | |
Oh, yes. | 0:01:32 | 0:01:33 | |
Put I would rather not die at home. | 0:01:33 | 0:01:36 | |
So, what if you're at home when you become ill? | 0:01:36 | 0:01:38 | |
I'd rather not die here. | 0:01:38 | 0:01:40 | |
I may have dementia, | 0:01:40 | 0:01:43 | |
but it doesn't have me...yet. | 0:01:43 | 0:01:46 | |
HE YELLS | 0:01:46 | 0:01:48 | |
I'd just like to say | 0:01:52 | 0:01:54 | |
to all my family, I love you all. | 0:01:54 | 0:01:55 | |
I always will. | 0:01:55 | 0:01:57 | |
For the days that I, um... | 0:01:57 | 0:01:59 | |
..maybe can't say it. | 0:02:02 | 0:02:03 | |
And it's in gear! | 0:02:16 | 0:02:17 | |
We got pegs? All the way around. | 0:02:17 | 0:02:20 | |
Right, you need to thread the poles in where the colours are. | 0:02:20 | 0:02:23 | |
Chris Roberts and his family arrive for their annual camping trip | 0:02:23 | 0:02:28 | |
on the North Wales coast. | 0:02:28 | 0:02:30 | |
It's always important to get the family together and make memories. | 0:02:31 | 0:02:34 | |
It's nice, cos when you think about people, | 0:02:34 | 0:02:36 | |
you think about the good times. | 0:02:36 | 0:02:37 | |
So the more good times you can have, the better you think of people | 0:02:37 | 0:02:40 | |
and the more you remember it. | 0:02:40 | 0:02:43 | |
It's a chance for teenager Kate | 0:02:43 | 0:02:45 | |
to catch up with her brothers and sisters. | 0:02:45 | 0:02:47 | |
She's the youngest of five. | 0:02:47 | 0:02:49 | |
It's been nice, all of us actually being together for a change. | 0:02:50 | 0:02:53 | |
Just doing what we used to do. | 0:02:53 | 0:02:56 | |
Chris and Jayne have been married for two decades. | 0:02:56 | 0:02:59 | |
It's a welcome break from life at home. | 0:02:59 | 0:03:02 | |
Not too far because... | 0:03:02 | 0:03:03 | |
Part of the fun of it is, when it's raining and it's bad weather | 0:03:03 | 0:03:06 | |
and then the sun comes out. | 0:03:06 | 0:03:08 | |
They're just out there having fun, like they should be. | 0:03:08 | 0:03:11 | |
Like an ordinary, normal family. | 0:03:11 | 0:03:13 | |
So it's good. It's nice. | 0:03:13 | 0:03:16 | |
So I'm hoping that they'll remember all that stuff, | 0:03:16 | 0:03:19 | |
rather than what's going to happen later on. | 0:03:19 | 0:03:22 | |
This family has been living with dementia for five years. | 0:03:22 | 0:03:27 | |
I'm surprised we got that up. | 0:03:27 | 0:03:29 | |
Tiring for anyone, isn't it? | 0:03:29 | 0:03:32 | |
But it makes me...makes me cloudy, makes my dementia worse. | 0:03:32 | 0:03:35 | |
Do you want a trolley? | 0:03:46 | 0:03:47 | |
We've been filming with the Roberts family | 0:03:47 | 0:03:49 | |
from Rhuddlan in North Wales for more than 18 months, | 0:03:49 | 0:03:53 | |
as Chris's dementia progresses. | 0:03:53 | 0:03:55 | |
I'm actually shaking. | 0:03:55 | 0:03:58 | |
Everything's pronounced. | 0:03:58 | 0:03:59 | |
Everything's exaggerated. | 0:03:59 | 0:04:01 | |
All the noises, just the open spaces. | 0:04:01 | 0:04:04 | |
It's forced them all to come up with ways to adapt and cope. | 0:04:04 | 0:04:08 | |
I've learnt to keep my eye on her | 0:04:08 | 0:04:10 | |
and then I won't forget where I am. | 0:04:10 | 0:04:12 | |
She reminds me that I'm here for a purpose, | 0:04:12 | 0:04:14 | |
otherwise I can forget where I am. | 0:04:14 | 0:04:16 | |
I can go wandering off. | 0:04:16 | 0:04:19 | |
Right, this one's quiet. | 0:04:19 | 0:04:20 | |
They began noticing changes in Chris three years earlier. | 0:04:20 | 0:04:24 | |
-Am I going too fast for you? -No. | 0:04:24 | 0:04:26 | |
He was just becoming more and more unusual. Not himself. | 0:04:26 | 0:04:30 | |
Sometimes, he can get a bit short with us. | 0:04:32 | 0:04:35 | |
Just get very angry. Very, very cross. | 0:04:35 | 0:04:38 | |
Shouting at them, blaming them for things. | 0:04:38 | 0:04:40 | |
And, um...it was totally out of character. | 0:04:40 | 0:04:42 | |
Peas! I do need peas. | 0:04:42 | 0:04:44 | |
We'd started to bicker, and we've never rowed. We never argued. | 0:04:44 | 0:04:48 | |
I still put it down to changes that were going on | 0:04:48 | 0:04:51 | |
and not being able to cope. | 0:04:51 | 0:04:54 | |
You know, maybe it was a coping strategy. Shout! | 0:04:54 | 0:04:57 | |
All done, all done. Let's go. | 0:04:57 | 0:04:59 | |
I was a bit shocked for a moment | 0:05:00 | 0:05:02 | |
because where I thought he was going to sit, he went straight past. | 0:05:02 | 0:05:05 | |
I thought he'd gone wandering off. | 0:05:05 | 0:05:07 | |
So I got that slight anxiety of, where is he? | 0:05:07 | 0:05:11 | |
Like you would with a child. | 0:05:12 | 0:05:14 | |
Chris has had to stop driving. It was a tough decision. | 0:05:18 | 0:05:22 | |
Everyone seemed to be honking their horns. | 0:05:23 | 0:05:26 | |
Nothing was automatic any more. | 0:05:26 | 0:05:27 | |
And unknown to me, I was concentrating so much on driving, | 0:05:27 | 0:05:31 | |
I wasn't... Junctions were mine, roundabouts were mine. | 0:05:31 | 0:05:34 | |
I was driving straight across. | 0:05:34 | 0:05:36 | |
So this is where all the honking of the horns came in. | 0:05:36 | 0:05:39 | |
They were actually honking at me. | 0:05:39 | 0:05:40 | |
I'd pull over in the car because I couldn't remember where I was going. | 0:05:40 | 0:05:43 | |
And this is a lot of stuff that even the family didn't know. | 0:05:43 | 0:05:47 | |
Chris ran a custom motorcycle build-and-repair shop. | 0:05:49 | 0:05:52 | |
He was a keen biker. | 0:05:53 | 0:05:55 | |
One minute, you're going out with all your biker friends on a Sunday | 0:05:56 | 0:05:59 | |
and then you don't live the same any more. | 0:05:59 | 0:06:02 | |
My life completely changed the day I gave up my licence. | 0:06:02 | 0:06:05 | |
Completely changed. | 0:06:05 | 0:06:08 | |
-What year are we in? -2015. -OK. | 0:06:12 | 0:06:16 | |
I've been saying '14 for some time. | 0:06:16 | 0:06:18 | |
-You said '14 last time, as well, but it's OK. -Oh, right. | 0:06:18 | 0:06:21 | |
Chris has volunteered to be tested every six months | 0:06:21 | 0:06:24 | |
as part of a research project to assess | 0:06:24 | 0:06:27 | |
how well he's living with his dementia. | 0:06:27 | 0:06:30 | |
When you get given a diagnosis, the only thing you can cling to | 0:06:30 | 0:06:32 | |
is a little bit of hope. And research gives you that hope. | 0:06:32 | 0:06:36 | |
What I'm going to do now is give you three words | 0:06:36 | 0:06:38 | |
-which I'm going to ask you to remember. -Mm. | 0:06:38 | 0:06:40 | |
So the words are "lemon", "key", "ball". | 0:06:40 | 0:06:43 | |
Lemon, key, ball. | 0:06:43 | 0:06:45 | |
OK, good. So try to remember those. | 0:06:45 | 0:06:47 | |
Chris was given a similar test when Jayne took him to see his GP. | 0:06:48 | 0:06:52 | |
It was "apple", "table", "penny". | 0:06:52 | 0:06:55 | |
Repeat them back. So Chris repeated them back three times, | 0:06:55 | 0:06:58 | |
then she said a few more questions, | 0:06:58 | 0:07:00 | |
then she came back to, "What were those three objects?" | 0:07:00 | 0:07:03 | |
And he could only get one. | 0:07:03 | 0:07:05 | |
And alarm bells are screaming at the back of my head | 0:07:05 | 0:07:07 | |
because two years later... | 0:07:07 | 0:07:10 | |
..I can remember those objects. | 0:07:13 | 0:07:15 | |
And in the space of five minutes, | 0:07:17 | 0:07:19 | |
he was unable...unable to remember the objects. | 0:07:19 | 0:07:22 | |
Can you remember those three words I asked you to remember? | 0:07:23 | 0:07:26 | |
-Lemon. -Good. | 0:07:29 | 0:07:30 | |
-There's two more. -No. | 0:07:34 | 0:07:35 | |
-No? -No. -OK. | 0:07:35 | 0:07:37 | |
Chris was diagnosed with vascular dementia | 0:07:37 | 0:07:40 | |
and young-onset Alzheimer's aged 50. | 0:07:40 | 0:07:45 | |
So what I'm going to ask you to do next | 0:07:45 | 0:07:46 | |
is to draw me a clock face with numbers on it | 0:07:46 | 0:07:49 | |
and then put the hands at ten past five. | 0:07:49 | 0:07:52 | |
-Um...clock. -Yep. | 0:07:52 | 0:07:54 | |
They say to you, "Draw a clock," and then I'm stumped. | 0:08:08 | 0:08:11 | |
Like, what do I do first? | 0:08:11 | 0:08:12 | |
Do I do the dot first, do I do this first, do I do that first? | 0:08:12 | 0:08:15 | |
And what about the hands? Do you want to put the hands in now? | 0:08:33 | 0:08:36 | |
-At what time? -Ten past five. | 0:08:36 | 0:08:38 | |
-No, I can't do that. -OK. No worries, no worries. Thank you. | 0:08:40 | 0:08:44 | |
It sounds such a simple thing to do, but it's a very hard process. | 0:08:44 | 0:08:48 | |
Right, thanks very much, Anthony. | 0:08:51 | 0:08:52 | |
I'm a bit relieved now it's all over. Whoof! | 0:08:52 | 0:08:55 | |
I like Anthony, but I'm always glad to see the back of him. | 0:08:55 | 0:08:58 | |
The best thing you can do after your diagnosis is read up about it. | 0:09:02 | 0:09:06 | |
Find out all you can. | 0:09:06 | 0:09:08 | |
It's the unknown that scares us. | 0:09:08 | 0:09:11 | |
Dad, do you want to grab the end of that? | 0:09:15 | 0:09:17 | |
Life goes on despite dementia. | 0:09:17 | 0:09:20 | |
-Do you need, um...? -No. | 0:09:20 | 0:09:22 | |
-..books, or something? -CHRIS AND KATE: No. | 0:09:22 | 0:09:25 | |
But increasingly, Chris is on a short fuse. | 0:09:25 | 0:09:28 | |
You're just annoying me. | 0:09:28 | 0:09:30 | |
'It's much less easy now than it was six months ago. | 0:09:30 | 0:09:34 | |
'Some days, it doesn't matter what I do, it's not going to be right.' | 0:09:34 | 0:09:37 | |
This is square on this. | 0:09:37 | 0:09:40 | |
Yes, we've walked all the way around it | 0:09:40 | 0:09:41 | |
and it's the same all the way around. | 0:09:41 | 0:09:43 | |
-This gap is the same all the way around. -Sorry. | 0:09:43 | 0:09:46 | |
I don't know what you don't understand about what I just said. | 0:09:46 | 0:09:50 | |
'I can't do right for doing wrong. | 0:09:50 | 0:09:53 | |
'That's not my Chris, that is the Alzheimer's. | 0:09:53 | 0:09:55 | |
'That's very, very hard, being criticised constantly.' | 0:09:55 | 0:10:00 | |
Without the diagnosis, we probably would be this close to divorce now. | 0:10:01 | 0:10:05 | |
And we love each other dearly. | 0:10:05 | 0:10:07 | |
-It goes right over, does it? -It does. I can actually fold it... | 0:10:07 | 0:10:10 | |
-Right, yeah, well, don't. -And then it... | 0:10:10 | 0:10:12 | |
I'm a teenager, that can be hard, not arguing back. | 0:10:16 | 0:10:19 | |
But I just got on with it and learnt to not bite. Huh! | 0:10:19 | 0:10:25 | |
Kate was 14 when her dad was diagnosed. | 0:10:27 | 0:10:31 | |
'I wouldn't say I was frightened of what might happen, | 0:10:31 | 0:10:35 | |
'but just him not knowing who I am. | 0:10:35 | 0:10:38 | |
'That's the only thing, really.' | 0:10:38 | 0:10:40 | |
I don't mind helping him if he can't do anything any more, | 0:10:40 | 0:10:43 | |
when he needs a drink and I'll have to give it to him | 0:10:43 | 0:10:46 | |
or if he needed to brush his teeth, I can do that, | 0:10:46 | 0:10:48 | |
but it's just the forgetting me. | 0:10:48 | 0:10:50 | |
It says at the front, if you get confused, ring IKEA. | 0:10:53 | 0:10:56 | |
CHRIS AND JAYNE CHUCKLE | 0:10:56 | 0:10:58 | |
It does say that, though. | 0:10:58 | 0:11:00 | |
Right, stand it on there. | 0:11:00 | 0:11:01 | |
It's a bit big, isn't it? | 0:11:03 | 0:11:04 | |
-The job's nearly done. -Huge. | 0:11:04 | 0:11:06 | |
But for a DIY expert like Chris, it's not as simple as it used to be. | 0:11:06 | 0:11:11 | |
I've got absolutely everything in here. | 0:11:12 | 0:11:14 | |
It's just remembering what's what. | 0:11:14 | 0:11:17 | |
I don't know what half the stuff is, so it just gets... | 0:11:17 | 0:11:20 | |
W-What is this? So it just gets put on one side, | 0:11:20 | 0:11:23 | |
put on one side and put on one side. | 0:11:23 | 0:11:25 | |
Nothing gets hung up any more, nothing's arranged any more. | 0:11:25 | 0:11:28 | |
By chance, he finds what he's looking for. | 0:11:29 | 0:11:32 | |
DRILL WHIRS | 0:11:32 | 0:11:34 | |
Well, that's good. | 0:11:34 | 0:11:35 | |
I'm...I'm nervous as hell now. | 0:11:35 | 0:11:38 | |
Stressed, anxious about the whole thing. | 0:11:38 | 0:11:41 | |
Even starting it, I was. | 0:11:41 | 0:11:43 | |
I could quite easily have gone, | 0:11:43 | 0:11:45 | |
"Do you know what? Let's get someone in." | 0:11:45 | 0:11:47 | |
But I know, with the help of the others, I can get this done. | 0:11:47 | 0:11:51 | |
And then it's... You've got the satisfaction afterwards. | 0:11:51 | 0:11:54 | |
It makes you feel good again. | 0:11:54 | 0:11:56 | |
It makes you feel worthy again. | 0:11:56 | 0:11:58 | |
'I've always been a master blagger. | 0:12:03 | 0:12:05 | |
'And I want to present as normal as I can. | 0:12:05 | 0:12:07 | |
'I want to remain as normal as I can for as long as I can. | 0:12:07 | 0:12:11 | |
'And I'm becoming quite good at that. I'm becoming very good at it.' | 0:12:11 | 0:12:14 | |
Is that it? | 0:12:14 | 0:12:15 | |
Yeah, very happy. | 0:12:15 | 0:12:17 | |
I'll make you a coffee now. | 0:12:17 | 0:12:20 | |
It's nice for us to get out, isn't it? | 0:12:25 | 0:12:27 | |
-Just to make sure you get home. -Yeah. | 0:12:27 | 0:12:29 | |
The only driving Chris does now is his mobility scooter. | 0:12:29 | 0:12:34 | |
I want a bigger and a faster one now, though! | 0:12:34 | 0:12:36 | |
I don't go out much. | 0:12:36 | 0:12:39 | |
I tend to look about two or three foot ahead of me | 0:12:39 | 0:12:41 | |
because I'm always looking for steps and kerbs | 0:12:41 | 0:12:43 | |
and inclines and things like that that affect my balance. | 0:12:43 | 0:12:46 | |
I think it's quite sad when your 16-year-old daughter's | 0:12:49 | 0:12:51 | |
turned into her father's carer. | 0:12:51 | 0:12:53 | |
I don't see it as caring, though, I see it more as, like... | 0:12:53 | 0:12:56 | |
Looking after your dad. | 0:12:56 | 0:12:57 | |
-Just keeping an eye. -Yeah. | 0:12:57 | 0:12:59 | |
Kate's left school, giving her more time to "keep an eye" on her dad. | 0:12:59 | 0:13:04 | |
'I'm the only one of his children living here now, | 0:13:06 | 0:13:08 | |
'so I get all the time with him.' | 0:13:08 | 0:13:09 | |
I have to have someone with me all the time, 24/7, | 0:13:09 | 0:13:12 | |
because I don't understand sometimes | 0:13:12 | 0:13:14 | |
about the dangers of going outside and being on my own. | 0:13:14 | 0:13:18 | |
Um...I can forget to leave the cooker on. | 0:13:18 | 0:13:20 | |
It is a lot safer if someone's here all the time. | 0:13:20 | 0:13:23 | |
Do you want chicken, or chicken and mushroom? | 0:13:23 | 0:13:26 | |
Er... | 0:13:26 | 0:13:28 | |
-Erm...chicken, please. -OK. | 0:13:28 | 0:13:30 | |
I find it very difficult making decisions. | 0:13:30 | 0:13:34 | |
So it's a lot easier if she shows me. | 0:13:34 | 0:13:37 | |
Because I can see exactly what she wants me to make the decision about, | 0:13:37 | 0:13:40 | |
rather than trying to remember, "What did she say first?" | 0:13:40 | 0:13:44 | |
So I usually end up going for whatever they said second. | 0:13:44 | 0:13:47 | |
And we've...we've learnt that ourselves. | 0:13:47 | 0:13:50 | |
-Do you want any bread? -No, thank you. | 0:13:50 | 0:13:52 | |
So, you had some bread, then? | 0:13:57 | 0:13:59 | |
-Did I say no? -Yeah. | 0:14:01 | 0:14:03 | |
Everyday tasks are becoming more challenging | 0:14:05 | 0:14:08 | |
as Chris's vision and co-ordination are impaired. | 0:14:08 | 0:14:11 | |
It takes a lot of thought to peel a potato. | 0:14:11 | 0:14:14 | |
It takes a lot of thought process to hold the potato, | 0:14:14 | 0:14:18 | |
move your hand alternately to what the other hand wants to do. | 0:14:18 | 0:14:23 | |
It's quite a struggle to peel a potato. | 0:14:23 | 0:14:26 | |
You're going to have to peel them. I'm struggling to peel. | 0:14:26 | 0:14:30 | |
'People don't realise that you don't see so well any more with dementia. | 0:14:30 | 0:14:35 | |
'I don't see potatoes very well. | 0:14:35 | 0:14:37 | |
'And I know in care homes, they've started using coloured crockery now | 0:14:37 | 0:14:40 | |
'to show up the potatoes, to show up the cauliflower cheese. | 0:14:40 | 0:14:44 | |
'And people are eating better.' | 0:14:44 | 0:14:46 | |
I'm done now, anyway. | 0:14:46 | 0:14:49 | |
Yeah, it's quite enough for me. | 0:14:49 | 0:14:50 | |
I don't eat much these days. | 0:14:52 | 0:14:53 | |
Some people try and hide from their dementia. | 0:14:59 | 0:15:02 | |
Hiding is easier than facing up to it sometimes. | 0:15:02 | 0:15:07 | |
But you can only run for so long. | 0:15:07 | 0:15:09 | |
Dementia WILL catch you up. | 0:15:09 | 0:15:11 | |
You WILL have to face it. | 0:15:11 | 0:15:13 | |
You WILL have to live with it. | 0:15:13 | 0:15:15 | |
Chris is one of 850,000 people living with dementia in the UK. | 0:15:22 | 0:15:27 | |
-It's in the car, isn't it? -It's miles to walk. | 0:15:27 | 0:15:29 | |
One of the first things he did after diagnosis | 0:15:29 | 0:15:32 | |
was to choose his own care home. | 0:15:32 | 0:15:34 | |
Today, he's going in for some respite care, | 0:15:35 | 0:15:38 | |
for him AND the family. | 0:15:38 | 0:15:40 | |
I've looked for a care home, I've made the decision | 0:15:40 | 0:15:44 | |
and it's my choice. | 0:15:44 | 0:15:46 | |
This is entirely my plan. | 0:15:47 | 0:15:48 | |
-But I have got dementia! -HE LAUGHS | 0:15:50 | 0:15:52 | |
HANDLE RATTLES | 0:15:56 | 0:15:57 | |
Locked, isn't it? | 0:15:59 | 0:16:01 | |
-See you later. -See you later. | 0:16:01 | 0:16:02 | |
-Ta-ra. -What time? -I don't know. -OK. | 0:16:03 | 0:16:05 | |
Whatever time you want to come and get me. | 0:16:05 | 0:16:08 | |
Jayne is finding the prospect | 0:16:09 | 0:16:11 | |
of leaving him in a care home overwhelming. | 0:16:11 | 0:16:13 | |
SHE SOBS | 0:16:15 | 0:16:17 | |
I struggle with it. | 0:16:25 | 0:16:27 | |
(Sorry.) | 0:16:27 | 0:16:29 | |
There are more than 40,000 people under 65 in the UK with dementia. | 0:16:36 | 0:16:41 | |
I'm 53. I was diagnosed with dementia about three years ago. | 0:16:41 | 0:16:45 | |
I've got vascular damage and Alzheimer's. | 0:16:45 | 0:16:47 | |
Chris and Jayne have thrown themselves | 0:16:47 | 0:16:50 | |
into raising awareness of the disease. | 0:16:50 | 0:16:52 | |
Folk who are not prepared at this time can suffer a lot of shock | 0:16:52 | 0:16:56 | |
and anxiety. I know I did. | 0:16:56 | 0:16:59 | |
'It actually makes us a team again. It brings us closer together. | 0:16:59 | 0:17:02 | |
You can fall through the net quite easily, | 0:17:02 | 0:17:06 | |
and that's why I decided to give dementia a voice. | 0:17:06 | 0:17:10 | |
Thank you. | 0:17:10 | 0:17:11 | |
-Thanks very much. -That was excellent. -Thank you. | 0:17:14 | 0:17:16 | |
Tiring, but good. I think it went well. | 0:17:16 | 0:17:19 | |
We got a nice round of applause, so that's an indicator. | 0:17:19 | 0:17:22 | |
If it went badly, we wouldn't get anything. | 0:17:22 | 0:17:24 | |
-SHE LAUGHS -Yeah. | 0:17:24 | 0:17:26 | |
Chris finds night-time journeys particularly challenging, | 0:17:26 | 0:17:29 | |
so he wears sunglasses. | 0:17:29 | 0:17:31 | |
My sunglasses - because, then, the lights aren't as bright | 0:17:33 | 0:17:36 | |
and so I don't get as scared. | 0:17:36 | 0:17:38 | |
I'm not looking out of the front window. | 0:17:38 | 0:17:41 | |
The lights look like they're coming straight towards you. | 0:17:41 | 0:17:44 | |
It's just quite scary. | 0:17:44 | 0:17:45 | |
DO BARKS | 0:17:47 | 0:17:49 | |
Home at last. | 0:17:49 | 0:17:51 | |
Jayne locks up for the night. | 0:17:51 | 0:17:53 | |
I've closed the curtain, but I've also put the alarm on. | 0:17:56 | 0:17:58 | |
If Chris does get up in the night, | 0:17:58 | 0:18:00 | |
the curtains have so far stopped him | 0:18:00 | 0:18:02 | |
seeing the door and going through it, | 0:18:02 | 0:18:04 | |
but there is an alarm in case he does go through the curtains, | 0:18:04 | 0:18:06 | |
and it should hopefully wake one of us up | 0:18:06 | 0:18:08 | |
and alert us to Chris going out. | 0:18:08 | 0:18:10 | |
With the dementia mind, if you can't see the door, | 0:18:10 | 0:18:12 | |
you don't know to go through it. | 0:18:12 | 0:18:15 | |
Chris was once discovered walking in the street in his dressing gown | 0:18:15 | 0:18:18 | |
at 4.00 in the morning. | 0:18:18 | 0:18:20 | |
Luckily, this policeman found him and brought him back. | 0:18:20 | 0:18:23 | |
I went down and I was, like, | 0:18:23 | 0:18:25 | |
"Are you OK?" And he was, like, "Get away from me!" | 0:18:25 | 0:18:27 | |
Like he didn't who anybody was. | 0:18:27 | 0:18:29 | |
He didn't know where he was in the house, or anything. | 0:18:29 | 0:18:32 | |
I've just got up. No-one's in the house. | 0:18:36 | 0:18:38 | |
Wandered around, shouting, | 0:18:40 | 0:18:42 | |
searching. Can't find anybody. | 0:18:42 | 0:18:44 | |
Trouble is, I don't know whether I'm dreaming or not. | 0:18:45 | 0:18:48 | |
Can't find any notes. | 0:18:48 | 0:18:51 | |
It's really strange when you don't know what's real and what isn't. | 0:18:55 | 0:18:58 | |
The family has allowed us to install seven cameras in their home. | 0:19:06 | 0:19:10 | |
They capture the impact on family life behind closed doors... | 0:19:20 | 0:19:24 | |
..as things become more confusing for Chris. | 0:19:30 | 0:19:33 | |
I can get lost in my own house. | 0:19:37 | 0:19:39 | |
I can walk into a room and nothing is familiar about it. | 0:19:39 | 0:19:43 | |
I don't know where anything is in the house any more. | 0:19:48 | 0:19:51 | |
It's like someone's moved you out for a couple of years | 0:19:51 | 0:19:54 | |
and moved you back in again. | 0:19:54 | 0:19:56 | |
I just have no memory of where things live any more. | 0:20:00 | 0:20:03 | |
I have to open all the drawers and cupboard doors | 0:20:03 | 0:20:06 | |
and search for everything these days. | 0:20:06 | 0:20:08 | |
Instead of hanging his coat up, Chris puts it in a kitchen cupboard. | 0:20:25 | 0:20:29 | |
He was, like, "All right, OK." | 0:20:29 | 0:20:32 | |
And he was sat there with me, went through... | 0:20:32 | 0:20:34 | |
Two days later... | 0:20:35 | 0:20:37 | |
Night-times can be a problem for Chris. | 0:20:57 | 0:20:59 | |
PIANO NOTES PLAY | 0:21:03 | 0:21:04 | |
The curtains across the front door are doing their job... | 0:21:09 | 0:21:13 | |
..but he tries every other door that he finds. | 0:21:16 | 0:21:18 | |
I find it very difficult to sleep now. | 0:21:25 | 0:21:27 | |
It's really confusing when you get lost in your own house. | 0:21:29 | 0:21:32 | |
And it looks so different at night-time. | 0:21:32 | 0:21:35 | |
-Chris? -Mm? | 0:21:47 | 0:21:49 | |
It's 7.45. We've got to get up. | 0:21:49 | 0:21:51 | |
Today, Chris is going for another day's respite in the care home. | 0:21:54 | 0:21:58 | |
-I've got coffee here for you. -Thank you. | 0:21:59 | 0:22:01 | |
But mornings are often a challenge for him. | 0:22:01 | 0:22:05 | |
Saturday morning, I woke up and wasn't sure | 0:22:05 | 0:22:07 | |
if it was Jayne next to me or not. | 0:22:07 | 0:22:09 | |
But then I thought, "No, it has to be. Don't be silly." | 0:22:09 | 0:22:11 | |
And then she spoke, so I realised it was. | 0:22:11 | 0:22:14 | |
Can you take the coffees? | 0:22:14 | 0:22:15 | |
Could you take them both? It's burning me. | 0:22:17 | 0:22:20 | |
Take that one first. | 0:22:20 | 0:22:22 | |
Sit up. | 0:22:22 | 0:22:23 | |
'When you wake up, first of all, | 0:22:25 | 0:22:27 | |
'you've got to remember what comes next.' | 0:22:27 | 0:22:29 | |
I've actually laid there and I've had to be prompted to get out of bed | 0:22:32 | 0:22:35 | |
because Jayne's come in, "Oh, you're awake". | 0:22:35 | 0:22:37 | |
"Yeah, I've been awake for some time." | 0:22:37 | 0:22:39 | |
"Well, why didn't you get up?" "I didn't think to." | 0:22:39 | 0:22:41 | |
-Are you taking a coat? -No. | 0:22:43 | 0:22:44 | |
-Do you not think you need one? -No. | 0:22:45 | 0:22:48 | |
-Give me two ticks. -Why? You can have that when you come back. | 0:22:48 | 0:22:50 | |
-I don't need any money, do I? -You're just taking me down the road. | 0:22:50 | 0:22:53 | |
'I used to be a very patient man.' | 0:22:53 | 0:22:56 | |
I would hardly ever, ever, ever lose my temper. | 0:22:56 | 0:22:59 | |
But now I lose it quite, quite daily. | 0:22:59 | 0:23:02 | |
-You ready? -Yeah. -Huh! | 0:23:02 | 0:23:04 | |
I am looking forward to having a day off. It's been a very hectic month. | 0:23:06 | 0:23:10 | |
So I'm looking forward to it. | 0:23:10 | 0:23:12 | |
No-one's going to be asking me any questions, | 0:23:12 | 0:23:15 | |
no-one's going to be asking | 0:23:15 | 0:23:16 | |
if I want a coffee or something to eat or... | 0:23:16 | 0:23:19 | |
They're just going to leave me alone, which is nice. | 0:23:20 | 0:23:23 | |
-All right, I'll see you later. -All right. Ta-ra. | 0:23:25 | 0:23:28 | |
Chris has been coming to this care home | 0:23:28 | 0:23:30 | |
on occasional day visits for seven months. | 0:23:30 | 0:23:32 | |
I was having trouble dropping my husband off for day respite, | 0:23:34 | 0:23:38 | |
but now, actually, it does us both good. | 0:23:38 | 0:23:41 | |
I'm much better about it now | 0:23:41 | 0:23:43 | |
because he's that bit much more advanced. | 0:23:43 | 0:23:46 | |
It also gives me that time off from treading on the eggshells. | 0:23:46 | 0:23:50 | |
Dropping him off, him going through the doors, I breathe. | 0:23:50 | 0:23:55 | |
'It's relaxing. | 0:23:57 | 0:23:58 | |
'No dog, no wife, no children. | 0:23:58 | 0:24:02 | |
'And it works. | 0:24:02 | 0:24:04 | |
'I need to come here more often. Definitely.' | 0:24:04 | 0:24:07 | |
But the disease is taking its toll on their relationship. | 0:24:10 | 0:24:13 | |
'There's a distance between us that wasn't there before. | 0:24:13 | 0:24:16 | |
'There is no physical affection between us any more. | 0:24:16 | 0:24:21 | |
'I think that could be because I've stopped trying.' | 0:24:21 | 0:24:24 | |
You know, I'll kiss him at night in bed, | 0:24:24 | 0:24:26 | |
but I'm kissing a cheek that isn't even offered to me. | 0:24:26 | 0:24:29 | |
We don't have that intimacy that was going six months, | 0:24:30 | 0:24:34 | |
but at least it was still there. | 0:24:34 | 0:24:36 | |
That's very difficult. | 0:24:36 | 0:24:38 | |
'While Jayne's away, I try and think about what she looks like | 0:24:41 | 0:24:45 | |
'and I have no recollection. I can't get the image in my head. | 0:24:45 | 0:24:48 | |
'All I get is how she sounds, more than a picture. | 0:24:48 | 0:24:51 | |
'And that doesn't take long. | 0:24:53 | 0:24:55 | |
'She can just be gone an hour and I think to myself, | 0:24:55 | 0:24:57 | |
' "What does Jayne look like?" ' | 0:24:57 | 0:24:59 | |
It's the end of the day and time to pick Chris up. | 0:25:01 | 0:25:04 | |
I've had a good day. | 0:25:05 | 0:25:06 | |
I don't know if you can hear it in my voice. | 0:25:06 | 0:25:08 | |
Yeah, some me time. | 0:25:08 | 0:25:11 | |
When I go in, I have to almost introduce myself, if you like, | 0:25:11 | 0:25:16 | |
rather than him not recognising me or not being sure who I am, | 0:25:16 | 0:25:21 | |
or any embarrassment like that. | 0:25:21 | 0:25:22 | |
I just go in and let him know it's me. | 0:25:22 | 0:25:25 | |
Chris? | 0:25:25 | 0:25:26 | |
-Hiya. It's me. -Hiya. -You all right? -Yeah. | 0:25:28 | 0:25:31 | |
Kate knows her dad is struggling to recognise her, too. | 0:25:32 | 0:25:36 | |
It was a shock, because your parent doesn't forget who you are. | 0:25:40 | 0:25:44 | |
I'm getting to know the face he does when he doesn't remember me now, | 0:25:46 | 0:25:49 | |
which is quite upsetting. | 0:25:49 | 0:25:51 | |
If there is a face that he, like, does when he forgets who people are, | 0:25:51 | 0:25:55 | |
I shouldn't recognise it for being me that he's forgotten, | 0:25:55 | 0:25:58 | |
it should be people he doesn't see. | 0:25:58 | 0:26:00 | |
-You getting in the front? Do you know who I am now? -Yeah. | 0:26:02 | 0:26:05 | |
-THEY LAUGH -Yeah. | 0:26:05 | 0:26:07 | |
That insight, that remnant of me, is becoming less. | 0:26:08 | 0:26:11 | |
It's definitely becoming less and less. | 0:26:11 | 0:26:14 | |
I'm becoming a new me, which I don't particularly like. | 0:26:14 | 0:26:17 | |
The person I miss most is me. | 0:26:18 | 0:26:20 | |
Mum's back on Saturday, not Friday. | 0:26:28 | 0:26:30 | |
Oh, OK. How do you know? | 0:26:30 | 0:26:32 | |
-I texted her. -OK. | 0:26:32 | 0:26:34 | |
Kate's in charge for the next few days while Jayne has some time off. | 0:26:34 | 0:26:38 | |
Chris quickly accepts life without her. | 0:26:39 | 0:26:41 | |
I'm not bothered. | 0:26:44 | 0:26:46 | |
I know Jayne was ready for a break. | 0:26:46 | 0:26:48 | |
I'm not emotional like that any more. | 0:26:50 | 0:26:52 | |
Yeah. It hasn't bothered me in the least, | 0:26:52 | 0:26:55 | |
which is not a very nice thing to say, but there you go. | 0:26:55 | 0:26:58 | |
That's what it's like. | 0:26:58 | 0:27:00 | |
Two, please. | 0:27:02 | 0:27:04 | |
Each time Jayne goes away, | 0:27:04 | 0:27:06 | |
she fears what might await her when she returns. | 0:27:06 | 0:27:09 | |
One of the downsides to having a week off | 0:27:10 | 0:27:13 | |
is that you come back full of it | 0:27:13 | 0:27:16 | |
and then nothing's changed. | 0:27:16 | 0:27:18 | |
In fact, it might have progressed a little bit more. | 0:27:18 | 0:27:21 | |
People say, "Oh, it's like losing somebody. | 0:27:22 | 0:27:24 | |
"It's losing little bits of them all the time." | 0:27:24 | 0:27:26 | |
It doesn't feel like that for me. | 0:27:26 | 0:27:28 | |
It feels to me like he's leaving me. | 0:27:28 | 0:27:31 | |
I don't let things like that... | 0:27:33 | 0:27:35 | |
I try and be indifferent to them, because that's my coping mechanism. | 0:27:35 | 0:27:39 | |
Being indifferent to it. | 0:27:39 | 0:27:41 | |
So it's not that I'm losing all my emotions, | 0:27:41 | 0:27:44 | |
I'm having to lose them, as well. | 0:27:44 | 0:27:47 | |
The saying around here is, "That's your problem, not mine." | 0:27:47 | 0:27:49 | |
-I've got enough problems of my own. -SHE CHUCKLES | 0:27:49 | 0:27:52 | |
And that's just it. | 0:27:52 | 0:27:53 | |
If somebody is leaving you, it's your problem and... | 0:27:53 | 0:27:57 | |
..they just leave you. They can't comfort you better | 0:27:58 | 0:28:00 | |
because they're making the choice to leave you. | 0:28:00 | 0:28:03 | |
I know this isn't Chris's choice... | 0:28:03 | 0:28:05 | |
-..but that's how it makes me feel. -Mm. | 0:28:06 | 0:28:08 | |
And there's nothing I can do about it. | 0:28:10 | 0:28:12 | |
I may have dementia, but it doesn't have me...yet. | 0:28:30 | 0:28:36 | |
It's Chris and Jayne's 21st wedding anniversary. | 0:28:45 | 0:28:49 | |
-Is that all right? -CHRIS CHUCKLES | 0:28:49 | 0:28:51 | |
She hasn't got me one because she thought I'd forgotten. | 0:28:53 | 0:28:56 | |
He didn't have a clue when I said happy anniversary to him. | 0:28:56 | 0:29:00 | |
As good as he was at covering it, I could see he didn't know. | 0:29:00 | 0:29:04 | |
So that shows an advancement to me. | 0:29:04 | 0:29:08 | |
I did get Jayne a card. | 0:29:08 | 0:29:10 | |
My daughter texted me this morning and reminded me - card. | 0:29:10 | 0:29:13 | |
So I sent my other daughter out for a card. | 0:29:13 | 0:29:16 | |
Cos I don't go out on my own these days, I'm not very good with money. | 0:29:16 | 0:29:20 | |
In fact, I don't even carry money these days. | 0:29:20 | 0:29:22 | |
She'll open it thinking it's yours! | 0:29:25 | 0:29:27 | |
And I know for a fact she hasn't got me one. | 0:29:27 | 0:29:30 | |
Because she thinks I'll forget and I won't get one, which is great. | 0:29:30 | 0:29:35 | |
That gives me a lot of satisfaction. | 0:29:35 | 0:29:37 | |
Remind me afterwards. Remind me. | 0:29:39 | 0:29:41 | |
Just for once, I've got the edge on the memory thing, which is great. | 0:29:43 | 0:29:48 | |
Makes me feel like I haven't got dementia at all. I'm cured today! | 0:29:48 | 0:29:51 | |
Chicken chow mein? | 0:29:51 | 0:29:53 | |
-Yes, please. -That's what I usually have. | 0:29:53 | 0:29:56 | |
That looks really nice. | 0:29:56 | 0:29:58 | |
I'm like that, so I can get the sound into my ears! | 0:30:00 | 0:30:04 | |
It works! | 0:30:04 | 0:30:05 | |
Just go like that and then you hear better. | 0:30:05 | 0:30:10 | |
He's chosen his favourite Chinese restaurant for a reason. | 0:30:10 | 0:30:14 | |
'I'm not very good at cutting my food up these days. | 0:30:15 | 0:30:17 | |
'I can't use a knife and fork any more. | 0:30:17 | 0:30:19 | |
'I've problems coordinating my hands. | 0:30:19 | 0:30:23 | |
'So I usually try and choose something that's already chopped up | 0:30:23 | 0:30:26 | |
'and not having to pass my plate to someone else for them to do it. | 0:30:26 | 0:30:29 | |
'It spoils the atmosphere when people see that.' | 0:30:29 | 0:30:33 | |
But as the evening wears on, Chris is finding it hard. | 0:30:35 | 0:30:39 | |
'It can be very difficult to keep up with people's conversations. | 0:30:41 | 0:30:44 | |
'I tend to just quieten off, to be honest, | 0:30:44 | 0:30:47 | |
'because I can't hear anybody. | 0:30:47 | 0:30:49 | |
'You end up just retiring, and keeping to yourself. | 0:30:49 | 0:30:52 | |
'Being on your own in a crowded room.' | 0:30:54 | 0:30:57 | |
Back home, Jayne finally gets her card. | 0:30:59 | 0:31:03 | |
Brownie points all round! | 0:31:03 | 0:31:06 | |
Excellent, I can still do some things right! | 0:31:06 | 0:31:08 | |
"Trust" has become quite a big word in my vocabulary at the moment. | 0:31:13 | 0:31:17 | |
I'm having to trust. | 0:31:17 | 0:31:20 | |
Trust that today is Friday, trust when I'm told I'm taking my tablets. | 0:31:20 | 0:31:25 | |
Trust when a fact I believe in hasn't actually happened. | 0:31:25 | 0:31:29 | |
So "trust" is a huge word at the moment. | 0:31:29 | 0:31:33 | |
-You want anything to eat? -No. | 0:31:33 | 0:31:36 | |
-Have you had your tablets? -No. | 0:31:36 | 0:31:38 | |
Are you sure? | 0:31:45 | 0:31:47 | |
-I put them there. Did you just move them? -I don't know. | 0:31:47 | 0:31:50 | |
It's Friday, no, you haven't. | 0:31:52 | 0:31:54 | |
-SHE LAUGHS -It's Thursday! | 0:31:56 | 0:31:58 | |
Chris, I think you've already had them. | 0:31:58 | 0:32:01 | |
-What? -Yeah! -SHE LAUGHS | 0:32:01 | 0:32:03 | |
As Chris's dementia symptoms increase, | 0:32:06 | 0:32:09 | |
life at home becomes more demanding for Jayne. | 0:32:09 | 0:32:12 | |
'I forget to eat and I actually don't get hungry any more either, | 0:32:32 | 0:32:36 | |
'so I'll eat when it's given me, | 0:32:36 | 0:32:38 | |
'because I have no recollection of when I ate at all. | 0:32:38 | 0:32:41 | |
'If it wasn't for Jayne or Kate, I'd probably be in a care home now. | 0:32:44 | 0:32:48 | |
'There's no way I could look after myself.' | 0:32:49 | 0:32:51 | |
With Jayne taking more and more responsibility, | 0:33:02 | 0:33:05 | |
difficult decisions have to be made. | 0:33:05 | 0:33:08 | |
You can put I would rather not die at home. | 0:33:08 | 0:33:12 | |
"I would prefer not to die at home." | 0:33:13 | 0:33:15 | |
Put that in. | 0:33:15 | 0:33:17 | |
Chris is writing his Lasting Power of Attorney, | 0:33:17 | 0:33:20 | |
for when he can no longer decide for himself. | 0:33:20 | 0:33:23 | |
So what if you're at home when you become ill, | 0:33:23 | 0:33:26 | |
if you haven't already gone into a nursing home? | 0:33:26 | 0:33:28 | |
-What? -Would you be happy to stay here or want to go into hospital? | 0:33:30 | 0:33:34 | |
HE SNIFFS | 0:33:34 | 0:33:36 | |
I'd rather not die here. | 0:33:36 | 0:33:38 | |
'I've got no control over my death. I haven't chosen a death.' | 0:33:39 | 0:33:43 | |
That's what little control I have. | 0:33:43 | 0:33:46 | |
I've chosen what little control I have over it. | 0:33:46 | 0:33:49 | |
And the more decisions I make, | 0:33:49 | 0:33:51 | |
the less decisions my family have to make, | 0:33:51 | 0:33:53 | |
so it's protecting them, really. | 0:33:53 | 0:33:56 | |
That's why I make a lot of decisions. | 0:33:56 | 0:33:58 | |
So if you were in a...seriously ill, it would be right | 0:33:58 | 0:34:03 | |
-to let you go to hospital? -Yeah, yeah. Why not? | 0:34:03 | 0:34:07 | |
I was asking, that's all. | 0:34:07 | 0:34:09 | |
They're not the sort of questions I would have thought of. | 0:34:09 | 0:34:12 | |
But then I don't want treatment either, so... | 0:34:13 | 0:34:16 | |
-So we would have to... -Tell them. | 0:34:22 | 0:34:25 | |
'I think it's better if I don't die at home. | 0:34:30 | 0:34:33 | |
'Then there's not a room where I died. | 0:34:35 | 0:34:38 | |
'And I know what Jayne is like, and I think | 0:34:38 | 0:34:40 | |
'she'd cope with it a lot better if I died somewhere else.' | 0:34:40 | 0:34:43 | |
This has made him think even more seriously about a longer stay | 0:34:47 | 0:34:52 | |
at his care home. | 0:34:52 | 0:34:53 | |
Not just during the day, but overnight, too. | 0:34:55 | 0:34:58 | |
I think no more denying the fact I've got Alzheimer's | 0:35:21 | 0:35:25 | |
or pretending everything's going to be OK. | 0:35:25 | 0:35:27 | |
I really just have to get used to this new life. | 0:35:31 | 0:35:34 | |
Stop yearning for the old one. I must try and live in the now. | 0:35:35 | 0:35:40 | |
'Make the now as good as possible.' | 0:35:42 | 0:35:45 | |
Is it down there? | 0:35:45 | 0:35:46 | |
Yours is staying up now. | 0:35:50 | 0:35:53 | |
'It's getting worse now, my memory is starting to fail a lot. | 0:35:53 | 0:35:56 | |
'It's just difficult because I know that I'm progressing. | 0:35:56 | 0:36:01 | |
'I'm getting to maybe another stage, and then that means I'm not far | 0:36:01 | 0:36:05 | |
'away from other stages which I don't want to think of yet.' | 0:36:05 | 0:36:08 | |
It's day two of the family holiday in Llanbedr, North Wales. | 0:36:09 | 0:36:13 | |
Student Sadie admits her dad's diagnosis hasn't quite sunk in. | 0:36:15 | 0:36:20 | |
'I've not really got upset about it yet, I'm just living in the moment.' | 0:36:20 | 0:36:26 | |
Yesterday's homecoming felt bittersweet. | 0:36:26 | 0:36:28 | |
Her dad didn't recognise her. | 0:36:28 | 0:36:31 | |
I've been in uni and I haven't come home for ages | 0:36:31 | 0:36:33 | |
and I turned up as a surprise. | 0:36:33 | 0:36:35 | |
And she run in the room, put her stuff down, "Hiya!" | 0:36:35 | 0:36:38 | |
and I thought, "Be polite!" | 0:36:38 | 0:36:41 | |
"Hello." | 0:36:41 | 0:36:42 | |
"Hiya." | 0:36:42 | 0:36:44 | |
And he was like, "Just come in." | 0:36:44 | 0:36:46 | |
And she went, "It's Sadie," | 0:36:46 | 0:36:48 | |
because I think it dawned on her and I went, "Yeah, I knew." | 0:36:48 | 0:36:51 | |
He wasn't expecting me or didn't know I was there. | 0:36:51 | 0:36:54 | |
But it wasn't really much, it was just like, "Why's she here?" | 0:36:54 | 0:36:57 | |
I had no idea, no idea. | 0:36:57 | 0:37:00 | |
Which is sad. It's always sad. | 0:37:00 | 0:37:02 | |
It gets to my heart every time that happens, every time. | 0:37:02 | 0:37:06 | |
And it happens a lot. | 0:37:06 | 0:37:07 | |
Don't forget the children. | 0:37:09 | 0:37:10 | |
The children also need to know what's going on. | 0:37:12 | 0:37:15 | |
They might come up with all kinds of ideas, | 0:37:15 | 0:37:18 | |
they might even be upset without you even realising. | 0:37:18 | 0:37:21 | |
Don't forget the children. | 0:37:21 | 0:37:24 | |
'I was a bit sad today, watching them. | 0:37:25 | 0:37:28 | |
'I don't enjoy things any more. But it's good to see them doing it.' | 0:37:28 | 0:37:32 | |
I'm probably the lucky one in all this because I'll forget. | 0:37:33 | 0:37:36 | |
They won't have that luxury. | 0:37:36 | 0:37:37 | |
Do you light it in all the corners? Whoo! | 0:37:40 | 0:37:43 | |
-KATE: -'It's been nice, all of us actually being together | 0:37:44 | 0:37:46 | |
'for a change. | 0:37:46 | 0:37:48 | |
'He's had a good sleep last night so he's really himself today. | 0:37:48 | 0:37:51 | |
'So it's not like we've had a holiday and had to look after him.' | 0:37:51 | 0:37:54 | |
It's like we've had a holiday with his old self. | 0:37:54 | 0:37:57 | |
'I probably shouldn't drink at all, really. | 0:37:59 | 0:38:01 | |
'It makes me more confused, it has more of an effect on me nowadays, | 0:38:01 | 0:38:06 | |
'but it's the last thing I've got left in life. | 0:38:06 | 0:38:09 | |
'It's the last vice I have!' | 0:38:09 | 0:38:11 | |
Eldest son Christian is still coming to terms with his dad's diagnosis. | 0:38:15 | 0:38:19 | |
'Very big shock, it's not nice to hear. | 0:38:21 | 0:38:24 | |
'You don't think it's going to happen to your own family, | 0:38:24 | 0:38:26 | |
'especially at his age, as well.' | 0:38:26 | 0:38:29 | |
He's kind of turning into someone else. It's... I don't know, | 0:38:29 | 0:38:33 | |
he's not the guy he was before, I don't think, now. | 0:38:33 | 0:38:37 | |
It's changed him, as a person, a lot. | 0:38:37 | 0:38:41 | |
When you look at him, you see he's different. Like he's somebody else. | 0:38:41 | 0:38:45 | |
'I think get-togethers are important, | 0:38:47 | 0:38:49 | |
'spend time together as much as we can.' | 0:38:49 | 0:38:51 | |
Cos obviously things are only going to get worse. | 0:38:51 | 0:38:54 | |
'And I love him to bits.' | 0:38:55 | 0:38:57 | |
Dementia doesn't exist here. Which it doesn't - look. | 0:39:07 | 0:39:11 | |
They're all having a nice time, they're playing card games. | 0:39:11 | 0:39:14 | |
That's how it should be. | 0:39:14 | 0:39:16 | |
For Jayne, the holiday has brought home how much | 0:39:16 | 0:39:19 | |
she needs a break away from Chris's dementia. | 0:39:19 | 0:39:22 | |
I'm on edge a lot at home, all the time, | 0:39:23 | 0:39:27 | |
so it's... That's how I know it's time. | 0:39:27 | 0:39:29 | |
I need respite, and I didn't think I'd ever say that. | 0:39:29 | 0:39:33 | |
He wants to go in and have respite overnight for himself. | 0:39:33 | 0:39:38 | |
I'm not ready to let him do that, | 0:39:38 | 0:39:40 | |
and one of my biggest worries is that... | 0:39:40 | 0:39:43 | |
I won't want him to come home. | 0:39:43 | 0:39:45 | |
I might like him being there. | 0:39:45 | 0:39:47 | |
So I... I can't risk him going in for week | 0:39:51 | 0:39:55 | |
and me not wanting him back. | 0:39:55 | 0:39:58 | |
And that's how it is. | 0:40:00 | 0:40:02 | |
Well, the seasons are progressing. | 0:40:06 | 0:40:09 | |
Autumn's here. Appeared very quickly. | 0:40:09 | 0:40:12 | |
Didn't even see the signs. Just went dark overnight. | 0:40:13 | 0:40:18 | |
Same as dementia does, really. My dementia is progressing. | 0:40:18 | 0:40:22 | |
Sometimes it goes dark, literally, overnight. | 0:40:22 | 0:40:25 | |
OK, when I hold it like that... | 0:40:27 | 0:40:29 | |
Kate has hit a landmark birthday. | 0:40:32 | 0:40:35 | |
But there's no escaping her dad's dementia, even on her special day. | 0:40:36 | 0:40:42 | |
THEY SING Happy Birthday | 0:40:42 | 0:40:46 | |
So how did you feel about last night? | 0:40:49 | 0:40:51 | |
It was all right, but towards the end, it was more like... | 0:40:51 | 0:40:55 | |
I'm not being selfish, but... More keeping an eye out on Dad. | 0:40:55 | 0:41:00 | |
Chris got lost in the restaurant. | 0:41:01 | 0:41:03 | |
I stood up because we were on the second level and I waved at him | 0:41:04 | 0:41:08 | |
and he looked at me, but then I don't know | 0:41:08 | 0:41:12 | |
if he just didn't see me, or if he saw me and didn't know. | 0:41:12 | 0:41:15 | |
When he doesn't know who I am and I'm actually there, I'm a bit upset | 0:41:16 | 0:41:20 | |
about it, but when it does click in, it's like he's still there. | 0:41:20 | 0:41:24 | |
It takes the upset away. | 0:41:24 | 0:41:26 | |
Yeah. But later on, it's just like, why us? | 0:41:26 | 0:41:30 | |
Yeah. | 0:41:30 | 0:41:32 | |
When you're talking to your friends, or...? | 0:41:32 | 0:41:34 | |
I don't talk to them about it. | 0:41:34 | 0:41:36 | |
Not at all? What about Ashley? | 0:41:36 | 0:41:38 | |
-That's the bottom, isn't it? -Yeah. -Plug the next bit into it, please. | 0:42:01 | 0:42:05 | |
I want to put that bit in there. | 0:42:05 | 0:42:07 | |
It won't go in there because the wires won't let you. | 0:42:07 | 0:42:09 | |
-It was never this hard last year. -You've never done it before. | 0:42:09 | 0:42:12 | |
-I'm sure I did last year. -You didn't. | 0:42:12 | 0:42:14 | |
Chris is becoming increasingly agitated. | 0:42:14 | 0:42:18 | |
What are these bits, Dad? | 0:42:18 | 0:42:20 | |
We don't need them. | 0:42:20 | 0:42:22 | |
'I'm just very anxious at the moment. | 0:42:23 | 0:42:25 | |
'I'm not in a good place.' | 0:42:25 | 0:42:26 | |
You haven't tightened the bottom, have you? | 0:42:26 | 0:42:29 | |
I can see it wobbling. | 0:42:29 | 0:42:31 | |
Over the last two, three months, | 0:42:31 | 0:42:32 | |
it's got progressively worse. I'm not in a good place at all. | 0:42:32 | 0:42:35 | |
Probably one of the worst places I've ever been. | 0:42:36 | 0:42:39 | |
And one day, tempers reach boiling point... | 0:42:39 | 0:42:42 | |
..in a row about jobs around the house. | 0:42:52 | 0:42:55 | |
That evening, Chris tries to make sense of what's happened. | 0:43:11 | 0:43:16 | |
Then the argument flares up again. | 0:43:35 | 0:43:37 | |
HE YELLS | 0:44:04 | 0:44:07 | |
'We heard Chris let out a yell and went in, and he just dissolved.' | 0:44:09 | 0:44:13 | |
So overwhelming for him that he just cried for help. | 0:44:25 | 0:44:29 | |
That is the only time that he's ever been unable to deal with it. | 0:44:40 | 0:44:44 | |
And then, after the event, life goes back to normal. | 0:44:54 | 0:44:58 | |
All these need folding out. | 0:45:21 | 0:45:23 | |
-Do you want to help? -No. | 0:45:23 | 0:45:25 | |
-Are you looking forward to Christmas? -No. | 0:45:26 | 0:45:29 | |
It's just stressing me. | 0:45:29 | 0:45:31 | |
I don't know why. It's just stressing me. | 0:45:31 | 0:45:33 | |
If I had my way, I'd cancel it. | 0:45:33 | 0:45:37 | |
It's all the decorations and the cats jumping around | 0:45:37 | 0:45:40 | |
everywhere, and mess and hassle | 0:45:40 | 0:45:45 | |
and change. | 0:45:45 | 0:45:46 | |
It's just...nightmare. | 0:45:48 | 0:45:49 | |
Nightmare. | 0:45:49 | 0:45:51 | |
Having to change what you're doing and where you're sitting | 0:45:51 | 0:45:55 | |
-and... -Well... -..getting ready and putting things together and wrapping | 0:45:55 | 0:46:02 | |
-and... -You don't have to wrap. | 0:46:02 | 0:46:04 | |
No, it's all just... It's just mithering me. | 0:46:04 | 0:46:06 | |
-Thinking about it? -Yeah. | 0:46:06 | 0:46:08 | |
You will make the effort on the day, won't you? We've got guests. | 0:46:13 | 0:46:17 | |
Well, I'll have to, won't I? | 0:46:17 | 0:46:19 | |
DOORBELL RINGS | 0:46:49 | 0:46:52 | |
-GUESTS: -# We wish you a merry Christmas and a happy New Year! # | 0:47:00 | 0:47:03 | |
LIVELY CHATTER | 0:47:05 | 0:47:07 | |
LOUD POP | 0:47:09 | 0:47:11 | |
Christmas actually didn't turn out as a bad as I thought. | 0:47:24 | 0:47:27 | |
I wasn't really in mood to eat, so I left most of my dinner, | 0:47:29 | 0:47:33 | |
but quite enjoyed just being sat there, watching everybody else | 0:47:33 | 0:47:36 | |
enjoying themselves. | 0:47:36 | 0:47:38 | |
Quite enjoyed it, actually, | 0:47:39 | 0:47:41 | |
considering all the fuss I made. | 0:47:41 | 0:47:43 | |
So...didn't turn out so bad, at all. | 0:47:45 | 0:47:48 | |
New Year - | 0:47:52 | 0:47:54 | |
not doing so much this year. | 0:47:54 | 0:47:56 | |
Keep it a bit tighter, I think, | 0:47:56 | 0:47:58 | |
and see how things go. | 0:47:58 | 0:48:00 | |
I must stop rocking, Jayne. | 0:48:08 | 0:48:09 | |
I know. I didn't want to tell you, though. | 0:48:09 | 0:48:12 | |
I've got an irritating habit... habit of rocking now. | 0:48:13 | 0:48:16 | |
It...it...it calms me down. | 0:48:16 | 0:48:19 | |
Chris is entering a new phase in his dementia. | 0:48:20 | 0:48:23 | |
We're a bit disappointed the way things are moving | 0:48:25 | 0:48:28 | |
so quickly, and I'm becoming less able to do anything now. | 0:48:28 | 0:48:32 | |
So, I'm glad I did what I've done. I've tried to stay in control of it, | 0:48:32 | 0:48:37 | |
but dementia is... is getting a grip now. | 0:48:37 | 0:48:41 | |
It's becoming much harder for him to process information. | 0:48:44 | 0:48:47 | |
Jayne says, "I'm sure your hearing's going." | 0:49:07 | 0:49:10 | |
And it's not that I don't hear it - I don't understand her. | 0:49:10 | 0:49:13 | |
So, I have to ask again | 0:49:13 | 0:49:15 | |
and then I can sort of understand. | 0:49:15 | 0:49:17 | |
The dementia symptoms are more pronounced. | 0:49:54 | 0:49:57 | |
We know we only have a window of time, | 0:49:57 | 0:50:00 | |
before it all goes pear-shaped. | 0:50:00 | 0:50:02 | |
There is one thing Jayne's pleased Chris HAS forgotten. | 0:50:08 | 0:50:11 | |
He did want to go in and have a rest overnight, and now | 0:50:11 | 0:50:16 | |
that overnight respite seems to have been put back. | 0:50:16 | 0:50:20 | |
He hasn't mentioned it for a while and, you know, | 0:50:20 | 0:50:23 | |
I'm not going to remind him. | 0:50:23 | 0:50:25 | |
I'm actually starting to notice my symptoms less, to be honest. | 0:50:27 | 0:50:30 | |
I haven't got the same insight as I used to have. | 0:50:30 | 0:50:35 | |
I've got the easier part of the illness now, I think, to come. | 0:50:35 | 0:50:40 | |
Took a big hit this year when I realised I was starting | 0:50:43 | 0:50:47 | |
to struggling with my reading. That really got me down. | 0:50:47 | 0:50:50 | |
Um... Nearly as bad as losing my driver's licence. | 0:50:50 | 0:50:53 | |
But it's just another thing, isn't it? | 0:50:53 | 0:50:56 | |
Just got to move on and concentrate on what you can do. | 0:50:56 | 0:51:00 | |
But these days, it's getting...not a lot. | 0:51:00 | 0:51:03 | |
The whole experience is getting difficult. | 0:51:05 | 0:51:08 | |
I think you can live with dementia, | 0:51:08 | 0:51:10 | |
but I'm not sure about living well any more. | 0:51:10 | 0:51:13 | |
I was diagnosed, when I was 50, with Alzheimer's and vascular dementia. | 0:51:16 | 0:51:19 | |
I'm now 54... | 0:51:19 | 0:51:21 | |
Chris has come to a big decision. | 0:51:23 | 0:51:26 | |
He is going to bow out of the conference circuit. | 0:51:26 | 0:51:28 | |
..So, this is probably my last formal speaking engagement, | 0:51:28 | 0:51:34 | |
but I will carry on with committees and research groups | 0:51:34 | 0:51:37 | |
and Dementia Friends. I will carry on for as long as I can. | 0:51:37 | 0:51:41 | |
I'm feeling quite relieved, cos I don't have to do that again. | 0:51:43 | 0:51:47 | |
I am going to carry on doing something or other. | 0:51:47 | 0:51:49 | |
I have to, otherwise I'd be doing nothing | 0:51:49 | 0:51:53 | |
and I think nothing will then increase | 0:51:53 | 0:51:55 | |
the progression even more. | 0:51:55 | 0:51:58 | |
But our story is not finished yet. | 0:51:58 | 0:52:00 | |
We do know how it will end, and it will not be a happy ending. | 0:52:00 | 0:52:05 | |
'Jayne has turned into a brilliant speaker. | 0:52:05 | 0:52:08 | |
'We need to get her out doing it more.' | 0:52:08 | 0:52:10 | |
We, after all, know how precious time is - and our clock is ticking. | 0:52:10 | 0:52:15 | |
Thank you. | 0:52:15 | 0:52:16 | |
'So, that's what I want to do now. I want to travel with Jayne!' | 0:52:16 | 0:52:19 | |
I can sit back and watch HER do some speaking. | 0:52:21 | 0:52:23 | |
DANCE MUSIC PLAYS | 0:52:29 | 0:52:31 | |
-Why have you got your fingers in your ears? -I can't hear. | 0:52:31 | 0:52:34 | |
'On Friday, we went to a wedding - my cousin's. | 0:52:38 | 0:52:42 | |
'And it was nice to see Dad chatting a bit, | 0:52:42 | 0:52:44 | |
'cos his balance is not very good at all any more. | 0:52:44 | 0:52:48 | |
'He didn't want to dance at all. | 0:52:48 | 0:52:50 | |
'So, I had to sit down and be with Dad for a little bit.' | 0:52:50 | 0:52:53 | |
The father of the bride was doing a speech about the old times | 0:52:55 | 0:52:59 | |
and it got me quite upset, because I think maybe my dad | 0:52:59 | 0:53:01 | |
won't be able to give me away. | 0:53:01 | 0:53:03 | |
Or if he's even here. | 0:53:03 | 0:53:05 | |
12 hours later... | 0:53:12 | 0:53:13 | |
Woke up, really, really... | 0:53:20 | 0:53:23 | |
um...erm...poo...poo...poorly. | 0:53:26 | 0:53:30 | |
Really bad head. | 0:53:30 | 0:53:33 | |
Nauseous. | 0:53:33 | 0:53:35 | |
I couldn't swallow properly | 0:53:35 | 0:53:38 | |
and had trouble with speech. | 0:53:38 | 0:53:42 | |
His speech is dreadful - very difficult to get out. | 0:53:48 | 0:53:53 | |
Yeah, I know what... what to say...say, | 0:53:54 | 0:53:58 | |
but I can't.... can't do...do it...it. | 0:53:58 | 0:54:02 | |
With Chris admitted to hospital, it's a tense time. | 0:54:07 | 0:54:10 | |
It's brought it home to me just how fragile life is. | 0:54:11 | 0:54:17 | |
We'd had a fabulous family wedding. | 0:54:17 | 0:54:20 | |
Within three hours, your life's changed - again. | 0:54:20 | 0:54:23 | |
Providing Chris is going to be OK, everything else can be sorted out. | 0:54:25 | 0:54:28 | |
And Chris WILL be OK. | 0:54:28 | 0:54:30 | |
Um...he always is. | 0:54:30 | 0:54:32 | |
After four days, Chris is back home. | 0:54:39 | 0:54:41 | |
I think I had a mild stroke... | 0:54:41 | 0:54:46 | |
and...affected area that's already damaged. | 0:54:46 | 0:54:52 | |
My first thoughts were, | 0:54:55 | 0:54:58 | |
"What now?" | 0:54:58 | 0:54:59 | |
HE LAUGHS | 0:54:59 | 0:55:01 | |
"What now? What's being thrown at me now?!" | 0:55:01 | 0:55:04 | |
'Speech getting better... so we're on the up. On the up.' | 0:55:07 | 0:55:12 | |
Just another...another hurdle. Another obstacle. | 0:55:13 | 0:55:17 | |
Where are we going? | 0:55:25 | 0:55:26 | |
I'm thinking Ilkley Moor, | 0:55:26 | 0:55:28 | |
because I took the dog on Ilkley Moor before, | 0:55:28 | 0:55:31 | |
but the problem with the moor was the dog fell in a bog! | 0:55:31 | 0:55:33 | |
LAUGHTER | 0:55:33 | 0:55:36 | |
A month later and they are back on the road. | 0:55:37 | 0:55:41 | |
-Ooh, Worcester sauce! -Throw it by here, Kate, | 0:55:41 | 0:55:43 | |
so it goes on the floor. That's it. | 0:55:43 | 0:55:46 | |
Whatever dementia throws at them, Chris and his family | 0:55:46 | 0:55:50 | |
are determined to enjoy life together... | 0:55:50 | 0:55:53 | |
for as long as they can. | 0:55:53 | 0:55:55 | |
I really hope that the programme helps people | 0:55:55 | 0:55:58 | |
and doesn't scare them. | 0:55:58 | 0:56:00 | |
I haven't done this to scare anybody. | 0:56:00 | 0:56:03 | |
So, go like that. | 0:56:03 | 0:56:05 | |
'You've seen that I still live. I still have a life.' | 0:56:05 | 0:56:10 | |
Yeah. | 0:56:10 | 0:56:12 | |
Just different quality. | 0:56:12 | 0:56:14 | |
-I'll just make sure you get home. -Yeah, yeah. | 0:56:14 | 0:56:16 | |
It is all changing. It's changing quickly, but... | 0:56:16 | 0:56:21 | |
..what can you do? | 0:56:24 | 0:56:26 | |
Ah! | 0:56:26 | 0:56:27 | |
We have so many laughs. Like, we don't laugh at Dad, | 0:56:29 | 0:56:32 | |
we laugh WITH Dad. But there is so many things that have happened | 0:56:32 | 0:56:35 | |
because of it, which have, like, given us extra memories. | 0:56:35 | 0:56:38 | |
So, it's not ALL doom and gloom. | 0:56:39 | 0:56:41 | |
-Have we been...? -We've been across the valley before. When Kate... | 0:56:44 | 0:56:47 | |
'It is so, so important to make the very best of the time | 0:56:47 | 0:56:51 | |
'that we have got, and we HAVE to enjoy ourselves,' | 0:56:51 | 0:56:53 | |
because otherwise, we are going to be sad... | 0:56:53 | 0:56:56 | |
We're definitely going to be sad later on. | 0:56:56 | 0:56:58 | |
Let's not be sad now and bring it too early. | 0:56:58 | 0:57:01 | |
Is your hair...darker? | 0:57:03 | 0:57:06 | |
-Yeah, I coloured it with a dye. -It looks different. | 0:57:06 | 0:57:08 | |
Don't be scared. Don't be scared. Live life. | 0:57:10 | 0:57:15 | |
Take it by the danglies... and run with it. | 0:57:19 | 0:57:22 | |
I bet that doesn't get shown! | 0:57:26 | 0:57:28 |