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0:00:00 > 0:00:05- Beti George cared for her partner - David Parry-Jones for eight years.
0:00:05 > 0:00:08- David suffered - from Alzheimer's disease.
0:00:18 > 0:00:20- While caring for David...
0:00:20 > 0:00:25- ..Beti campaigned - for a better status for carers.
0:00:35 > 0:00:38- David died in April 2017.
0:00:39 > 0:00:43- But Beti's campaign continues.
0:00:47 > 0:00:50- I'm certain in my mind - that I'm doing the right thing.
0:00:50 > 0:00:55- I won't be telling people - today what I'm going to do.
0:00:55 > 0:00:59- Instead, I'll be asking them - what needs doing.
0:00:59 > 0:01:01- Right.
0:01:01 > 0:01:05- If I'd tried to fight for provision - for my mother in her own language...
0:01:05 > 0:01:08- ..it would have been the end of me.
0:01:08 > 0:01:10- I know that.
0:01:10 > 0:01:14- In terms of support services - for you as a carer...
0:01:14 > 0:01:16- ..where are they?
0:01:17 > 0:01:19- I could ask you that.
0:01:20 > 0:01:25- I wonder what will happen - if the same thing happens to me.
0:01:26 > 0:01:31- Emrys has me to take care of him. - I'm glad I can do that.
0:01:32 > 0:01:34- Do you think about the future?
0:01:34 > 0:01:36- Do you think about the future?- - Yes. I'm afraid of the future.
0:01:40 > 0:01:42- I'm afraid.
0:01:43 > 0:01:47- People have already asked me - if I'll carry on campaigning.
0:01:48 > 0:01:52- Some have asked whether I'll still - have the drive to campaign...
0:01:53 > 0:01:54- ..after David's death.
0:01:55 > 0:01:59- At the moment, I feel - more determined than ever.
0:01:59 > 0:02:03- Things really need to change.
0:02:04 > 0:02:06- Subtitles
0:02:27 > 0:02:32- The emptiness is terrible.
0:02:33 > 0:02:35- That chair is empty.
0:02:35 > 0:02:39- The house is empty. - It's a big house.
0:02:39 > 0:02:41- It's so quiet.
0:02:44 > 0:02:47- He would sit there. - He'd fall asleep and he'd snore!
0:02:47 > 0:02:51- It was some sort of comfort - at the time.
0:02:52 > 0:02:56- Sometimes I would escape - to the kitchen...
0:02:56 > 0:02:58- ..to have a cuppa on my own.
0:02:59 > 0:03:01- I'd read the paper or something.
0:03:02 > 0:03:06- Within about ten minutes, - I'd hear "Bet! Bet!"
0:03:06 > 0:03:11- I'd have to go back - to keep him company.
0:03:12 > 0:03:16- The place felt full.
0:03:16 > 0:03:20- It's all gone. It's empty.
0:03:31 > 0:03:37- My friends have been tremendous.
0:03:39 > 0:03:41- I didn't realize - I had so many friends.
0:03:43 > 0:03:44- And of course, the family.
0:03:45 > 0:03:47- Iestyn has, well...
0:03:49 > 0:03:51- ..he's grown up.
0:03:51 > 0:03:53- My baby.
0:03:53 > 0:03:59- He's been... - I can't thank him enough.
0:04:24 > 0:04:26- He was David until the very end.
0:04:28 > 0:04:34- I felt so angry - when one social worker said...
0:04:34 > 0:04:37- .."But you lost him years ago."
0:04:37 > 0:04:41- I hadn't lost him at all. - He was still there to the very end.
0:04:43 > 0:04:45- He went in to the hospice.
0:04:48 > 0:04:53- The hospice was what everyone - should have when they're ill.
0:04:53 > 0:04:58- It was clean. It was so comfortable.
0:04:59 > 0:05:00- It was such a warm place.
0:05:00 > 0:05:03- The staff were fantastic.
0:05:04 > 0:05:05- Hi!
0:05:06 > 0:05:07- How are you?
0:05:07 > 0:05:08- How are you?- - OK.
0:05:09 > 0:05:11- Eurgh... yes.
0:05:11 > 0:05:13- I've had a bad week actually.
0:05:13 > 0:05:16- For some reason - but that's what they tell me.
0:05:16 > 0:05:18- It's up and down, up and down.
0:05:32 > 0:05:35- You couldn't wish for better care.
0:05:36 > 0:05:38- He would sit in his chair.
0:05:38 > 0:05:41- They would get him up - and he would look out.
0:05:42 > 0:05:46- There were big windows - with a view over to Somerset.
0:05:46 > 0:05:50- He could see people walking below. - He loved it.
0:05:54 > 0:05:58- Because he loved seeing people - walking with their dogs.
0:05:58 > 0:06:01- He would get very excited - if he saw a dog.
0:06:01 > 0:06:05- Or kids, you know. Dogs and kids.
0:06:05 > 0:06:08- He was getting so excited when he...
0:06:08 > 0:06:10- He did smile at the odd rugby song.
0:06:11 > 0:06:12- I tried my best!
0:06:13 > 0:06:15- Just a few times. Singing.
0:06:16 > 0:06:18- I'd prepared for so many things.
0:06:18 > 0:06:23- We could have turned the lounge - into a bedroom if we'd needed to.
0:06:23 > 0:06:26- He could have looked out - at the garden.
0:06:27 > 0:06:29- But he went quickly in the end.
0:06:30 > 0:06:33- His brothers had been to see him...
0:06:33 > 0:06:37- ..and he was quite well - when they were there.
0:06:37 > 0:06:42- By Saturday, I could see - that he wasn't quite as well.
0:06:42 > 0:06:46- On Sunday, he wasn't responding.
0:06:46 > 0:06:48- He died on Monday morning.
0:06:50 > 0:06:52- It was a shock.
0:06:53 > 0:06:56- I've got a present for you.
0:06:56 > 0:07:00- I've been collecting money - from friends.
0:07:01 > 0:07:06- You gave me a list - of things that you need.
0:07:08 > 0:07:14- So I don't know. What do you need? - Because I have a cheque for 2,000.
0:07:14 > 0:07:17- So, there you are.
0:07:18 > 0:07:19- Thank you very much.
0:07:19 > 0:07:21- That's very kind.
0:07:21 > 0:07:22- That's very kind.- - Thank you.
0:07:26 > 0:07:27- Baited breath.
0:07:31 > 0:07:32- The crossbar!
0:07:35 > 0:07:40- There's the try. - Roy Bergiers is the happy man.
0:07:40 > 0:07:46- Dear friends, if you can take - your seats. We're about to start.
0:07:47 > 0:07:50- Find out where you're sitting.
0:07:51 > 0:07:56- I felt I needed to hold an evening - to remember David.
0:07:57 > 0:08:03- At this event at the club in Cardiff - everyone will be remembering him.
0:08:03 > 0:08:06- But also, the campaign continues.
0:08:07 > 0:08:11- All the money raised on the night...
0:08:11 > 0:08:15- ..will go towards dementia research.
0:08:16 > 0:08:20- Thank you so much to all of you - for coming tonight.
0:08:20 > 0:08:23- It's an evening to remember David.
0:08:23 > 0:08:26- But it's also a chance - to share memories.
0:08:26 > 0:08:29- I think there'll be - quite a bit of nostalgia...
0:08:29 > 0:08:32- ..going around tonight.
0:08:33 > 0:08:36- It's bound to be a lively night.
0:08:36 > 0:08:39- David wouldn't have wanted it - any other way.
0:08:39 > 0:08:41- His life was all about having fun.
0:08:46 > 0:08:50- Selling then at 325 for the - All Blacks World Cup winning ball.
0:08:51 > 0:08:53- 325.
0:08:53 > 0:08:56- We have an auction - of valuable objects.
0:08:56 > 0:09:00- People have been so generous.
0:09:00 > 0:09:04- Dinner, bed and breakfast at the - Harbourmaster in Aberaeron. 125.
0:09:04 > 0:09:06- 125 in front here.
0:09:06 > 0:09:07- 150 from Jan.
0:09:08 > 0:09:12- 275 I'm bid. At 275. 300. - Ruth's in again.
0:09:12 > 0:09:15- 300 I'm bid from Ruth Jones.
0:09:15 > 0:09:18- 325. He's in, sir.
0:09:18 > 0:09:19- At 325, he's in.
0:09:20 > 0:09:23- 325 I'm bid. Closing at 325.
0:09:23 > 0:09:25- Thank you, sir. It's yours.
0:09:26 > 0:09:27- Wonderful.
0:09:27 > 0:09:32- The Centre for Ageing and Dementia - Research at Swansea University.
0:09:32 > 0:09:34- What a wonderful cause that is.
0:09:37 > 0:09:41- Players had respect for him - and they trusted him.
0:09:41 > 0:09:44- They didn't mind David - interviewing them.
0:09:44 > 0:09:46- They knew he was straight-talking.
0:09:46 > 0:09:49- He was a rugby man - through and through.
0:09:49 > 0:09:54- Last Friday, I was in Blaenau - rugby club. I get all the best gigs.
0:09:55 > 0:10:00- We were reminiscing on a Q&A session - and to a man, they all said...
0:10:01 > 0:10:07- .."David Parry-Jones was the - soundtrack to our lives in rugby."
0:10:07 > 0:10:10- He was the man, - he was the voice in 1972...
0:10:10 > 0:10:15- ..which was the launch - of Max here's career.
0:10:15 > 0:10:19- That was DPJ. Unmistakably DPJ.
0:10:19 > 0:10:22- He was the one we all aspired to be.
0:10:22 > 0:10:25- We were never going to sound - like Bill McLaren, were we?
0:10:26 > 0:10:30- It's clear from the buzz - that people are enjoying themselves.
0:10:31 > 0:10:34- I have to thank people - like Phil Steele...
0:10:34 > 0:10:38- ..who's just been doing - the auction - he was fantastic.
0:10:38 > 0:10:41- Eddie Butler and Alan Wilkins too.
0:10:42 > 0:10:46- I can relax somewhat now. - But I'll feel better tomorrow.
0:10:48 > 0:10:51- I think she's probably - looking around her.
0:10:51 > 0:10:53- Or at least I hope she is.
0:10:53 > 0:10:57- There are about 150 people - here tonight.
0:10:57 > 0:10:59- They've come to support her...
0:10:59 > 0:11:03- ..to remember David - and to support the cause.
0:11:04 > 0:11:09- How many people from all over Wales - couldn't be here tonight...
0:11:09 > 0:11:12- ..but feel the same - for the cause that she supports?
0:11:13 > 0:11:16- I don't think - there's a solution really.
0:11:16 > 0:11:18- It's about increasing awareness...
0:11:18 > 0:11:21- ..and raising money, - like we're doing tonight.
0:11:24 > 0:11:26- My David Parry-Jones coat. - I still have it.
0:11:28 > 0:11:29- I saw DPJ wearing the coat...
0:11:29 > 0:11:32- ..and I thought to myself - I'd like to have one.
0:11:32 > 0:11:38- Grandstand phoned me. Wales were - playing England at the Arms' Park.
0:11:38 > 0:11:40- I decided I had to buy a coat.
0:11:41 > 0:11:43- Frank Bough - was going to interview me.
0:11:44 > 0:11:46- I had to buy a coat.
0:11:46 > 0:11:51- So there I was on the halfway line - talking to Frank Bough.
0:11:51 > 0:11:56- The crowd starting singing Hymns - and Arias for the first time ever.
0:11:56 > 0:11:59- I phoned my mother and asked - if she'd seen Grandstand.
0:11:59 > 0:12:03- I asked what she thought and she - said, "Your coat looked lovely."
0:12:06 > 0:12:10- Before he died in April, in the - Marie Curie Hospice in Penarth...
0:12:10 > 0:12:14- ..we'd show him Max at Treorchy - on the iPad.
0:12:14 > 0:12:17- He would still smile and appreciate.
0:12:17 > 0:12:21- So, Max, thank you so much - for being here tonight.
0:12:22 > 0:12:26- And yes, David would have enjoyed - being with us here. Thank you.
0:12:32 > 0:12:32- .
0:12:34 > 0:12:34- Subtitles
0:12:34 > 0:12:36- Subtitles- - Subtitles
0:12:39 > 0:12:43- I'm preparing for tonight, - which is going to be a big night.
0:12:44 > 0:12:46- There's a big conference in Swansea.
0:12:46 > 0:12:50- It's the British Society - of Gerontology conference.
0:12:50 > 0:12:54- They study and work with - the elderly.
0:12:54 > 0:13:00- This is a UK-wide conference.
0:13:00 > 0:13:02- What am I going to tell them?
0:13:05 > 0:13:09- Good evening. It's a real honour - to be here tonight.
0:13:10 > 0:13:13- If someone had told me 10 years ago - I'd be guest of honour here...
0:13:14 > 0:13:16- ..I'd have said "You're bonkers".
0:13:17 > 0:13:21- It's an honour to be honest because - it's obviously very important.
0:13:22 > 0:13:23- We will have already eaten.
0:13:24 > 0:13:28- I'm speaking - between the dinner and the dessert.
0:13:28 > 0:13:33- I'm only speaking - for five to seven minutes.
0:13:34 > 0:13:38- To be honest, that's more of - a challenge. I have so much to say.
0:13:38 > 0:13:41- Older people don't have rights.
0:13:41 > 0:13:45- We need to campaign - to give them rights.
0:13:45 > 0:13:49- Yes, yes. - People are more interested nowadays.
0:13:50 > 0:13:52- People agree with me.
0:13:53 > 0:13:57- I think what they appreciate is that - you stand up and speak in public.
0:13:57 > 0:14:00- Not everyone feels - they are able to do that.
0:14:00 > 0:14:04- That's why I consider myself - to be the voice of people out there.
0:14:05 > 0:14:09- There are thousands of people - in Wales without a voice.
0:14:13 > 0:14:16- If somebody had told me - ten years ago...
0:14:16 > 0:14:18- ..that I'd be the guest of honour...
0:14:19 > 0:14:21- ..with the British Society - of Gerontology...
0:14:22 > 0:14:24- ..I would have said, - "You're bonkers".
0:14:25 > 0:14:29- But then, a year later, - dementia struck.
0:14:30 > 0:14:33- And my life and world - were turned upside down.
0:14:35 > 0:14:36- And I started to rant.
0:14:36 > 0:14:41- But then, it has been proven that - ranting is better for the digestion.
0:14:44 > 0:14:48- Every three seconds, someone - in the world develops dementia.
0:14:48 > 0:14:53- One in three people over 65 - will die with a form of dementia.
0:14:54 > 0:14:59- In Wales, there are over 45,000 - currently living with dementia.
0:15:00 > 0:15:02- 55,000 by 2021.
0:15:03 > 0:15:07- Statistics go on and on. - What I want to see is action.
0:15:07 > 0:15:11- Now - before the huge wave - overtakes us.
0:15:17 > 0:15:22- I feel that policy makers - are like rabbits...
0:15:22 > 0:15:25- ..caught in the headlights - of a car.
0:15:26 > 0:15:29- They don't really know - how to cope with this...
0:15:29 > 0:15:33- ..and it's been called the most - discriminated against disease.
0:15:34 > 0:15:37- Dismissed as social - rather than medical.
0:15:38 > 0:15:42- Social carers for people with - dementia must be given respect...
0:15:43 > 0:15:45- ..and professional status...
0:15:46 > 0:15:50- ..and paid not 7.50 an hour - but a decent living wage.
0:15:50 > 0:15:53- It's one of - the most difficult jobs going.
0:15:58 > 0:16:03- The only people who get it are - those who've been through it 24/7.
0:16:04 > 0:16:08- Thank you for listening. - And now you can enjoy your pudding.
0:16:08 > 0:16:10- Thank you.
0:16:16 > 0:16:22- It's an audience of 350 - academic gerontologists...
0:16:22 > 0:16:24- ..practitioners, policy makers.
0:16:24 > 0:16:27- They're involved with these issues - day in and day out.
0:16:27 > 0:16:32- I've never seen a standing ovation - at one of our dinners before.
0:16:37 > 0:16:43- People realize that I'm campaigning - for better dementia care.
0:16:44 > 0:16:50- I receive many letters in the post.
0:16:51 > 0:16:54- One of them came from John Phillips.
0:16:55 > 0:16:58- He used to be Chief Executive - of Dyfed County Council.
0:17:01 > 0:17:03- Jenkins was a Unitarian...
0:17:03 > 0:17:06- ..but basically - he was a very religious man.
0:17:07 > 0:17:10- His wife, Bethan, - is the author of many books...
0:17:11 > 0:17:14- ..but she now has Alzheimer's.
0:17:15 > 0:17:19- She started showing symptoms...
0:17:19 > 0:17:23- ..of being a little scatty - and forgetful.
0:17:24 > 0:17:28- I've attended three church services - today...
0:17:28 > 0:17:30- ..and listened to two sermons.
0:17:30 > 0:17:36- During the years that followed, I - was more or less a full-time carer.
0:17:42 > 0:17:44- DOORBELL
0:17:49 > 0:17:52- Bethan now lives in a care home.
0:17:53 > 0:17:56- The carers there are very good.
0:17:56 > 0:17:59- Many of them are from Poland.
0:18:00 > 0:18:01- They must be worried.
0:18:01 > 0:18:06- They're worried about - what will happen in future.
0:18:06 > 0:18:08- I go to see Bethan twice a week.
0:18:08 > 0:18:12- She can't talk and she can't walk.
0:18:12 > 0:18:16- She can't eat solids.
0:18:17 > 0:18:22- I sit with her. Sometimes - there'll be a hint of a smile.
0:18:24 > 0:18:26- But she won't say anything.
0:18:26 > 0:18:32- With dementia, you're not sure - what her brain is registering.
0:18:33 > 0:18:38- It sounds as if Bethan - needs intensive nursing care.
0:18:39 > 0:18:43- Yes, in the opinion of anyone - trying to interpret the term...
0:18:43 > 0:18:45- ..continuing healthcare.
0:18:45 > 0:18:47- But it's not that simple.
0:18:47 > 0:18:51- They've drawn up - about twelve guidelines.
0:18:53 > 0:18:57- When you're assessed, - you go through each one.
0:18:57 > 0:19:03- You have to achieve a high score - in enough different elements.
0:19:03 > 0:19:05- For example, - she's unable to feed herself.
0:19:06 > 0:19:08- Right, let me tell you about that.
0:19:10 > 0:19:15- I thought that would mean she would - get a high score for nutrition.
0:19:15 > 0:19:18- But no, she hasn't lost - enough weight yet.
0:19:19 > 0:19:20- Right?
0:19:21 > 0:19:27- I've been told that if Bethan - was more aggressive...
0:19:28 > 0:19:31- ..that might benefit us.
0:19:33 > 0:19:36- How can a person who is unable to - express herself or do anything...
0:19:37 > 0:19:38- ..be aggressive?
0:19:38 > 0:19:42- The other thing of concern...
0:19:42 > 0:19:45- ..in case people think - that only wealthy people pay.
0:19:46 > 0:19:52- People should understand that - anyone with assets over 24,000...
0:19:52 > 0:19:56- ..including the value of your home, - has to pay.
0:19:58 > 0:20:00- That means most people.
0:20:01 > 0:20:02- And you're not poor.
0:20:03 > 0:20:04- I'm not poor.
0:20:04 > 0:20:09- I have enough information - to know about the system.
0:20:10 > 0:20:13- But it's a matter of principle.
0:20:13 > 0:20:20- Some people would be in danger - of losing their home.
0:20:20 > 0:20:21- Losing everything.
0:20:22 > 0:20:26- For example, - someone might want to decide...
0:20:27 > 0:20:30- ..to leave their home - to their children.
0:20:31 > 0:20:34- If the council can prove...
0:20:34 > 0:20:39- ..that they did that - to avoid paying...
0:20:39 > 0:20:42- ..they are still able - to go after it.
0:20:42 > 0:20:47- Politicians have to start - taking this issue seriously.
0:20:48 > 0:20:50- This will be a big problem - in the future.
0:20:51 > 0:20:55- Where are the politicians - who are willing to raise the issue?
0:20:55 > 0:21:00- Jenkins was a deep thinker - and a contemplative man.
0:21:01 > 0:21:05- Having intelligence - and creativity...
0:21:05 > 0:21:09- ..do not mean - you'll avoid dementia.
0:21:09 > 0:21:11- It can happen to anyone.
0:21:13 > 0:21:15- Dementia.
0:21:16 > 0:21:18- "Under the clouds, sunshine lingers
0:21:18 > 0:21:21- "A smile is trapped in the tears
0:21:23 > 0:21:26- "The passion of past summers
0:21:26 > 0:21:30- "Comes to mind, then disappears"
0:21:35 > 0:21:38- I have to sign in here.
0:21:39 > 0:21:40- What's my name?
0:21:42 > 0:21:45- A week. Which isn't much.
0:21:45 > 0:21:46- A week. Which isn't much.- - No.
0:21:47 > 0:21:51- This interview tonight - is a sort of advert...
0:21:51 > 0:21:55- ..for the meetings - taking place in the Eisteddfod.
0:21:55 > 0:22:01- I know there are so many people out - there in the same situation as me.
0:22:02 > 0:22:04- I hope they come to speak to me.
0:22:08 > 0:22:10- The world has changed for me.
0:22:11 > 0:22:14- But it's there all the time.
0:22:19 > 0:22:24- It's wonderful to welcome - broadcaster Beti George...
0:22:24 > 0:22:27- ..and singer Casi Wyn to the studio.
0:22:29 > 0:22:33- You're using the National Eisteddfod - as a platform next week.
0:22:33 > 0:22:35- What exactly is the appeal?
0:22:35 > 0:22:39- Do you want people who are going - through to come to see you?
0:22:40 > 0:22:44- Yes, because I know that they are - going through the same experience.
0:22:44 > 0:22:46- I want them to come to speak to me.
0:22:46 > 0:22:50- How do Welsh people respond - generally?
0:22:50 > 0:22:53- We're reluctant to talk, aren't we?
0:22:53 > 0:22:56- We don't want cause a fuss. - We don't want to complain.
0:22:56 > 0:22:58- But if we don't complain...
0:22:58 > 0:23:00- Well, it's not really complaining.
0:23:00 > 0:23:04- We're just demonstrating - that things need to change.
0:23:04 > 0:23:06- Unless we discuss this matter...
0:23:06 > 0:23:10- ..and tell the authorities - that they must do something...
0:23:11 > 0:23:13- ..nothing is going to change.
0:23:13 > 0:23:15- I can't change things alone.
0:23:16 > 0:23:19- Beti, thank you very much for coming - and good luck next week.
0:23:20 > 0:23:25- It's good to have the opportunity - to tell people about next week.
0:23:25 > 0:23:30- Heno has - quite a good viewing audience.
0:23:30 > 0:23:33- I hope people will have seen it.
0:23:33 > 0:23:37- I hope people will come.
0:23:37 > 0:23:37- .
0:23:41 > 0:23:41- Subtitles
0:23:41 > 0:23:43- Subtitles- - Subtitles
0:23:46 > 0:23:51- Carers for people with dementia - often feel they are alone.
0:23:53 > 0:23:57- I felt like that sometimes.
0:23:57 > 0:24:00- I could spend hours...
0:24:00 > 0:24:04- ..trying to persuade him - to go to bed.
0:24:05 > 0:24:10- It wasn't easy, it wasn't easy to...
0:24:11 > 0:24:13- He wanted to keep his dignity.
0:24:13 > 0:24:17- It wasn't easy for me to take off - his trousers and so on.
0:24:35 > 0:24:39- I've been reading quite a bit - about what's happening in Scotland.
0:24:39 > 0:24:44- The impression I get - - I don't know if this is right...
0:24:44 > 0:24:48- ..is that they're way ahead - of the situation in Wales.
0:24:48 > 0:24:51- I went to Scotland last year.
0:24:52 > 0:24:54- I managed to get some idea...
0:24:55 > 0:24:58- ..of what people with dementia - have to deal with.
0:24:58 > 0:25:02- It's the sensory deprivation - we hear about.
0:25:02 > 0:25:06- They lose every ability - to understand things.
0:25:06 > 0:25:11- In Scotland, - they're addressing these issues.
0:25:11 > 0:25:14- During the exercise, - you'll be in that room...
0:25:14 > 0:25:18- ..and you'll have been asked - to complete a range of tasks.
0:25:18 > 0:25:20- What's important for us...
0:25:20 > 0:25:25- ..is that any time you feel that - you've had enough that you say stop.
0:25:25 > 0:25:26- Everything will stop.
0:25:26 > 0:25:27- OK.
0:25:28 > 0:25:31- If you could put these in your shoes - please.
0:25:35 > 0:25:37- I'm just wondering how they know...
0:25:38 > 0:25:42- ..that this is what happens - to people with dementia.
0:25:42 > 0:25:45- I can't see anything now. - What am I supposed to do?
0:25:46 > 0:25:49- Ooh. As if there's water bubbling - somewhere or other.
0:25:50 > 0:25:54- Well, I don't understand. - I don't remember what she told me.
0:25:55 > 0:25:58- There was so much noise in my ears.
0:25:58 > 0:26:01- More noise in my ears.
0:26:02 > 0:26:04- I heard something fall.
0:26:06 > 0:26:08- There are people talking - in the background.
0:26:09 > 0:26:12- Well, that's not. I can't. - What about the scarf?
0:26:17 > 0:26:22- Now I understand. I'm like Cyclops. - I can only see through one eye.
0:26:23 > 0:26:24- OK. Stop.
0:26:24 > 0:26:26- OK. Stop.- - What was that like for you?
0:26:27 > 0:26:29- Exhausting actually.
0:26:29 > 0:26:31- I feel so tired.
0:26:31 > 0:26:34- Things didn't happen - in the right sequence.
0:26:34 > 0:26:36- The last thing - you were asked to do...
0:26:37 > 0:26:40- ..was put on your coat and gloves - and leave the room.
0:26:40 > 0:26:42- You actually put these on - quite early...
0:26:43 > 0:26:46- ..which then made all the other - tasks really difficult to do.
0:26:46 > 0:26:49- You were trying to do them - with a pair of mitts on.
0:26:49 > 0:26:53- That's a very common experience - for people to lose the thread...
0:26:53 > 0:26:56- ..in terms of the sequence - of doing something.
0:26:56 > 0:27:00- Whether that's getting dressed, - getting ready to go out...
0:27:00 > 0:27:02- ..making a cup of tea.
0:27:02 > 0:27:06- If you break it down, there's quite - a lot to the everyday things we do.
0:27:08 > 0:27:13- In 2007, the government here...
0:27:13 > 0:27:15- ..made dementia a priority.
0:27:16 > 0:27:19- One thing that's interesting...
0:27:19 > 0:27:22- ..is that they appoint - what they call a link worker.
0:27:27 > 0:27:29- You're the link worker.
0:27:29 > 0:27:31- Linked to Helen.
0:27:31 > 0:27:34- When Helen's husband - went along to the memory clinic...
0:27:34 > 0:27:36- ..to get his diagnosis.
0:27:36 > 0:27:39- Post-diagnostic support - would have been discussed...
0:27:39 > 0:27:41- ..with Helen and her husband.
0:27:42 > 0:27:46- I almost guide them through the year - following the diagnosis.
0:27:46 > 0:27:50- They just take quality time - to listen to how I'm doing.
0:27:50 > 0:27:52- How are you today?
0:28:06 > 0:28:08- It's Tuesday at the Eisteddfod.
0:28:09 > 0:28:11- Every day I've been here...
0:28:11 > 0:28:15- ..so many people have stopped me - to say thank you.
0:28:17 > 0:28:23- They tell me they appreciate - what I'm trying to do so much.
0:28:23 > 0:28:29- Obviously there are people out there - who are suffering.
0:28:29 > 0:28:34- They just say the services - are not what they should be.
0:28:36 > 0:28:36- Talking to people.
0:28:36 > 0:28:38- Talking to people.- - People come to me. I hope.
0:28:39 > 0:28:43- Carers. Most of them are women.
0:28:44 > 0:28:46- Come to talk to me.
0:28:48 > 0:28:52- Many people who are carers - have told me...
0:28:53 > 0:28:57- ..they would like - one place to phone.
0:28:57 > 0:29:01- You could tell them what you want - to know and they would find out...
0:29:01 > 0:29:05- ..and phone you back later that day - to give you the information.
0:29:05 > 0:29:06- That's not how it works.
0:29:07 > 0:29:11- In Scotland, they have - what they call link workers.
0:29:11 > 0:29:14- Yes. In Scotland they're spoilt.
0:29:14 > 0:29:19- Well, not spoilt because everyone - should receive that kind of service.
0:29:19 > 0:29:22- In Wales, we're so far behind that.
0:29:22 > 0:29:27- I don't think the government - really understands this illness.
0:29:27 > 0:29:33- Lynwen and Nain. - Nain lost her husband recently.
0:29:35 > 0:29:38- How difficult was it?
0:29:38 > 0:29:42- In my mind, no-one could take - my place and do what I was doing.
0:29:42 > 0:29:44- Or not as well as me maybe.
0:29:45 > 0:29:49- I was tired but we managed...
0:29:49 > 0:29:55- ..in our life within the house.
0:29:56 > 0:29:57- What we found useful...
0:29:58 > 0:30:01- ..was the Alzheimer's Society - dementia helpline.
0:30:01 > 0:30:06- If there was anything not quite - right, we'd send a little email.
0:30:07 > 0:30:09- But what would be more helpful...
0:30:10 > 0:30:14- ..rather than having someone - on the other end of a screen...
0:30:14 > 0:30:18- ..would be to have someone - like a one-to-one support worker...
0:30:19 > 0:30:21- ..like they have in Scotland.
0:30:21 > 0:30:24- It's a 24-hour job.
0:30:24 > 0:30:30- He might get up at night and he - won't remember where the toilet is.
0:30:30 > 0:30:33- He doesn't answer the phone.
0:30:33 > 0:30:37- If someone calls round, he prefers - not to answer the door...
0:30:37 > 0:30:39- ..in case he doesn't know them.
0:30:40 > 0:30:43- Our friends - understand the situation.
0:30:43 > 0:30:46- My friends and family - are very supportive.
0:30:47 > 0:30:49- Aren't you lucky?
0:30:49 > 0:30:55- I'm very lucky of that. - Otherwise I wouldn't be here today.
0:30:55 > 0:30:59- This is my holiday. The same thing - happened in Abergavenny last year.
0:31:00 > 0:31:03- That's what happens - more often than not.
0:31:04 > 0:31:07- They feel they are alone - and don't know where to turn.
0:31:09 > 0:31:14- I'd like someone to come in - and tell me what they can offer.
0:31:14 > 0:31:16- They could start tomorrow!
0:31:16 > 0:31:19- But there was nothing.
0:31:19 > 0:31:20- This is us on our wedding day.
0:31:21 > 0:31:22- Wow.
0:31:22 > 0:31:24- In Alltwen chapel.
0:31:26 > 0:31:30- He hasn't changed much. - I've changed completely.
0:31:30 > 0:31:33- This is him with our grandson.
0:31:33 > 0:31:35- He loves Joshua. He's changed now.
0:31:35 > 0:31:38- He hasn't got much patience - with children now.
0:31:38 > 0:31:41- He hasn't got much patience - with anyone.
0:31:42 > 0:31:44- He's 81 this month.
0:31:44 > 0:31:47- Some days, he thinks he's 40.
0:31:48 > 0:31:51- Another day he thinks he's 90. - It's funny.
0:31:52 > 0:31:54- It's hard, I have to say.
0:31:54 > 0:31:58- The old Rhodri has been replaced - by someone else...
0:31:58 > 0:32:00- ..and it's like having a child.
0:32:00 > 0:32:03- You have to remind yourself - that he's your husband.
0:32:03 > 0:32:06- Some people, because they see - a smile on my face...
0:32:07 > 0:32:09- ..they think there's nothing wrong.
0:32:09 > 0:32:11- But I could cry some days.
0:32:13 > 0:32:17- Sometimes I think I could put him - in a room and lock him in.
0:32:17 > 0:32:21- But I wouldn't do it. I try my best - to take him wherever I go.
0:32:22 > 0:32:26- I'm his kingpin.
0:32:26 > 0:32:29- He looks for me.
0:32:29 > 0:32:32- I get up from the chair - and he asks where I'm going.
0:32:32 > 0:32:35- I say I'm going to the toilet. - He asks why!
0:32:35 > 0:32:38- And you just think - what's wrong with him!
0:32:39 > 0:32:43- But it's so difficult to believe - that he's the same man.
0:32:48 > 0:32:52- Mam was the heart and soul - of the family.
0:32:52 > 0:32:55- She asked me how the boys were.
0:32:55 > 0:32:58- I don't have children.
0:32:59 > 0:33:00- That's the day I realized.
0:33:01 > 0:33:05- I kept talking to her but burst into - tears when I put the phone down.
0:33:05 > 0:33:07- I realized my life had changed.
0:33:07 > 0:33:11- From that second on. - I had to start looking after her.
0:33:11 > 0:33:15- The most difficult thing for us...
0:33:15 > 0:33:20- ..was when Mam realized - she was forgetting things.
0:33:21 > 0:33:23- That was awful.
0:33:23 > 0:33:27- If I had tried to fight - for provision for Mam in Welsh...
0:33:27 > 0:33:30- ..it would have been the end of me.
0:33:30 > 0:33:32- I know that.
0:33:32 > 0:33:38- There was no understanding - of her human rights per se...
0:33:38 > 0:33:40- ..let alone linguistic rights.
0:33:41 > 0:33:45- When he was in hospital, - he had wonderful care.
0:33:45 > 0:33:50- The nurses did fantastic work.
0:33:51 > 0:33:55- But it was as if they didn't - quite understand the condition.
0:33:55 > 0:33:57- It was little things.
0:33:57 > 0:34:00- At home, - if he didn't want to eat lunch...
0:34:00 > 0:34:04- ..at the same time as everyone else, - the food was left on the table.
0:34:04 > 0:34:07- It would just be a sandwich - or something.
0:34:07 > 0:34:12- You'd hear his little feet shuffling - towards the kitchen later to eat it.
0:34:12 > 0:34:16- In hospital, if you don't eat - between 12 and 1, the food is gone.
0:34:16 > 0:34:20- So he didn't eat - when he was in hospital.
0:34:20 > 0:34:22- Little things like that.
0:34:22 > 0:34:26- You can't deny that doctors - and nurses do their best...
0:34:26 > 0:34:27- ..for the patients.
0:34:28 > 0:34:32- But personally, I think they need - to be much more flexible.
0:34:37 > 0:34:39- What is needed to support carers?
0:34:40 > 0:34:43- They need to stop paying - for Trident.
0:34:43 > 0:34:46- They need to stop paying for wars.
0:34:46 > 0:34:49- They need to open out the cake - properly.
0:34:49 > 0:34:53- They then need to distribute - the cake more sensibly to Wales.
0:34:54 > 0:35:00- They need to stop the ridiculous - bureaucratic walls...
0:35:00 > 0:35:03- ..between health and education.
0:35:03 > 0:35:06- They need to invest - in proper resources.
0:35:07 > 0:35:09- That has to change.
0:35:10 > 0:35:14- It's just crumbs left - and the crumbs are diminishing.
0:35:19 > 0:35:21- Do you think about the future?
0:35:21 > 0:35:23- Do you think about the future?- - Yes. I'm afraid of the future.
0:35:27 > 0:35:29- I'm afraid.
0:35:32 > 0:35:35- I don't want to think - about the future.
0:35:35 > 0:35:37- The future.
0:35:50 > 0:35:52- The future scares me.
0:35:55 > 0:35:59- I'd prefer if he had a heart attack - and went in his sleep...
0:36:00 > 0:36:02- ..than continue on this journey.
0:36:10 > 0:36:10- .
0:36:11 > 0:36:11- Subtitles
0:36:11 > 0:36:13- Subtitles- - Subtitles
0:36:21 > 0:36:24- I'm glad I came to Samos. - I wasn't sure.
0:36:25 > 0:36:29- I've arrived today. - It's the day after his birthday.
0:36:29 > 0:36:33- I decided to travel on his birthday.
0:36:34 > 0:36:37- The idea was I would be - concentrating on something else...
0:36:38 > 0:36:40- ..rather than him and his birthday.
0:36:44 > 0:36:46- It's a second home to me.
0:36:47 > 0:36:50- It was a second home to us.
0:36:51 > 0:36:54- It's odd to come here without him.
0:37:03 > 0:37:07- I have very mixed feelings.
0:37:07 > 0:37:12- I see David in everything I see.
0:37:15 > 0:37:19- David would want me to come anyway.
0:37:30 > 0:37:32- Beti! Beti!
0:37:35 > 0:37:38- Vaso has lost Prepos, her husband.
0:37:39 > 0:37:41- That was some years ago.
0:37:41 > 0:37:46- As Vaso said, Prepos and David will - be having fun somewhere together!
0:38:04 > 0:38:08- They are so warm. I'm one of them.
0:38:08 > 0:38:11- I'm family, as they say!
0:38:12 > 0:38:18- Meeting Vaso again after all these - years was a fabulous experience.
0:38:19 > 0:38:22- There's such a warm welcome.
0:38:23 > 0:38:27- Nafsika is Vaso's sister. - She's also a very good friend.
0:38:27 > 0:38:30- She says I'm a member of the family.
0:38:30 > 0:38:33- I'm their sister. - They loved David as well.
0:38:40 > 0:38:46- I'll see at the end of my stay - whether I feel it was worth coming.
0:38:47 > 0:38:50- I wasn't sure - if it was a sensible thing to do.
0:38:50 > 0:38:55- So soon after losing David.
0:38:58 > 0:39:03- I find comfort in the fact - that I managed to look after him...
0:39:03 > 0:39:07- ..and that he did appreciate - what I was trying to do.
0:39:08 > 0:39:11- Also that he was able - to stay at home...
0:39:11 > 0:39:13- ..until the end.
0:39:14 > 0:39:16- There you are. Good.
0:39:17 > 0:39:21- Will I continue to campaign - after David dies?
0:39:23 > 0:39:26- At the moment, I feel - more determined than ever.
0:39:30 > 0:39:33- Come on then.
0:39:43 > 0:39:45- When David was diagnosed...
0:39:46 > 0:39:49- ..no-one really knew - much about dementia.
0:39:50 > 0:39:54- People hadn't really heard much - about dementia and Alzheimer's.
0:39:55 > 0:40:01- Now, I can't think of anyone - who hasn't heard of this disease.
0:40:02 > 0:40:06- The people I spoke to - at the Eisteddfod.
0:40:06 > 0:40:10- People like Eirlys, - Gaynor and Megan.
0:40:10 > 0:40:14- Their experiences - were heartbreaking.
0:40:16 > 0:40:21- It's very common. Those are - the experiences people have.
0:40:21 > 0:40:25- There are people - who get in touch regularly.
0:40:26 > 0:40:30- I have very strong views. - Our politicians must listen.
0:40:31 > 0:40:36- You hear them saying there have been - developments in cancer care.
0:40:37 > 0:40:40- And I think that's great. But!
0:40:40 > 0:40:44- They must also now turn - their attention to dementia.
0:40:44 > 0:40:51- They must find the sort of care - provided to people with cancer.
0:41:02 > 0:41:06- I've come to the Senedd - this evening.
0:41:06 > 0:41:09- I'm here to meet the Members.
0:41:09 > 0:41:12- I hope they turn up.
0:41:12 > 0:41:17- I want them to hear - people's experiences.
0:41:18 > 0:41:20- There is always talk. - It's never-ending.
0:41:21 > 0:41:25- But nothing seems to be done - about it.
0:41:26 > 0:41:29- I don't feel nervous at all.
0:41:29 > 0:41:34- I'm very glad that one member - in particular, Eluned Morgan...
0:41:34 > 0:41:38- ..is very supportive - of what I'm trying to do.
0:41:38 > 0:41:40- ..for a long time.
0:41:40 > 0:41:44- I'm particularly glad - to see the Minister...
0:41:45 > 0:41:49- ..responsible for ensuring - that we do more for carers.
0:41:49 > 0:41:51- Welcome, Huw.
0:41:51 > 0:41:55- First of all, I'd like to welcome - Beti George to the stage.
0:41:55 > 0:41:59- Thank you very much for all the work - you've done over the years.
0:42:00 > 0:42:01- Thank you, Eluned.
0:42:04 > 0:42:05- Why am I here?
0:42:06 > 0:42:12- Why am I still preaching about - the need for better dementia care...
0:42:12 > 0:42:15- ..and more support for carers?
0:42:16 > 0:42:20- I often ask myself - the same question.
0:42:21 > 0:42:25- To be honest, - it's too late for David and me.
0:42:26 > 0:42:28- But speaking to people - at the Eisteddfod...
0:42:29 > 0:42:33- ..who are going through the same - experience made me want to carry on.
0:42:33 > 0:42:37- The truth is that many - of today's Assembly Members...
0:42:37 > 0:42:40- ..will suffer from dementia one day.
0:42:40 > 0:42:45- I don't think they'd be happy - with the current care services.
0:42:46 > 0:42:50- It is a national disgrace that - sufferers are so badly treated...
0:42:51 > 0:42:55- ..in the lack of support given to - those who love and care for them.
0:42:55 > 0:42:59- One consistent theme that came out - of my chats at the Eisteddfod...
0:42:59 > 0:43:04- ..was "once the diagnosis was given, - we were sent home to get on with it.
0:43:05 > 0:43:08- "We had no idea who to turn to."
0:43:09 > 0:43:13- What they all want is a key worker - to be linked with them...
0:43:13 > 0:43:15- ..right from the beginning.
0:43:15 > 0:43:18- And stay with them right to the end.
0:43:18 > 0:43:22- With a little bit of reorganization - and goodwill...
0:43:22 > 0:43:25- ..this could get off the ground - right now.
0:43:25 > 0:43:29- Let's do something. - Let's get cracking.
0:43:29 > 0:43:32- And now, I'd like you to watch - a very short film...
0:43:33 > 0:43:37- ..that includes clips of people - I spoke to at the Eisteddfod.
0:44:14 > 0:44:20- You rightly remind us, Beti. - We must talk about dementia more.
0:44:20 > 0:44:24- We must also do more.
0:44:25 > 0:44:27- We need to act more - as well as talking about it.
0:44:27 > 0:44:32- It's interesting that the government - is doing something now.
0:44:32 > 0:44:34- There are several things - we're doing now.
0:44:35 > 0:44:39- For example, imminently we are - launching a Carers' Strategy.
0:44:40 > 0:44:45- Carers are not just valued - but are invaluable.
0:44:45 > 0:44:49- If they were replaced with - front line professional workers...
0:44:49 > 0:44:51- ..I think it would break the bank.
0:44:51 > 0:44:55- I noticed in the video it mentioned - the aspect of the fear...
0:44:56 > 0:44:59- ..of certain people over the impact - on them of what will be...
0:44:59 > 0:45:03- ..their only asset going forward, - which is normally their home.
0:45:03 > 0:45:08- Of course, only this week we signed - off the commitment in April...
0:45:08 > 0:45:11- ..to lift that limit to 40,000 - not 24,000.
0:45:13 > 0:45:17- Thank you, Beti, for raising - the prominence of this issue...
0:45:17 > 0:45:20- ..and reminding us of some - of the practical impacts...
0:45:20 > 0:45:22- ..on people's lives - that this brings.
0:45:23 > 0:45:26- And of the urgency of dealing - with this within government.
0:45:26 > 0:45:28- Keep on making it uncomfortable - for us.
0:45:29 > 0:45:30- That's what will drive change.
0:45:31 > 0:45:33- It's 100,000 in two years.
0:45:33 > 0:45:36- He can afford it, as he says, - but it's the principle.
0:45:37 > 0:45:44- The Minister, Huw Irranca-Davies, - was there. He was keen to listen.
0:45:47 > 0:45:50- I think I got the message through.
0:45:51 > 0:45:56- He told me to carry on battling.
0:45:56 > 0:46:00- But there's so much work - still to be done.
0:46:05 > 0:46:11- Now, what I remember is him, - the pleasure of caring for him...
0:46:12 > 0:46:14- ..and the smile.
0:46:14 > 0:46:18- They say that the grief never goes.
0:46:19 > 0:46:21- It never disappears.
0:46:27 > 0:46:32- I think we spent some of our - happiest moments together...
0:46:33 > 0:46:35- ..on this island.
0:46:38 > 0:46:44- We were both under pressure - in our chosen careers.
0:46:48 > 0:46:53- I'd come home really tired.
0:46:53 > 0:46:56- David as well, of course.
0:46:58 > 0:47:04- But here, we were very close.
0:47:06 > 0:47:08- Very often, - we'd ask, "Do we have to go back?"
0:47:09 > 0:47:12- Of course, we had to.
0:47:12 > 0:47:17- The sunset here - is the best you could see...
0:47:17 > 0:47:19- ..anywhere in the world.
0:47:52 > 0:47:54- S4C Subtitles by Testun Cyf.