Who Will Take Care of Us? Mum, Dad, Alzheimer's & Me (Alzheimer's Disease Documentary) | Only Human

Summary

The documentary "Who Will Take Care of Us? Mum, Dad, Alzheimer's & Me" by Only Human delves into the struggles of Alzheimer’s care in the UK, narrated through personal stories, highlighting gaps in healthcare and social systems. Through the lens of Fiona Phillips's family story, it spotlights the emotional, physical, and financial burdens faced by families caring for those with Alzheimer’s. The documentary sheds light on the inadequate support and resources, emphasizing the urgent need for a cohesive system to support both sufferers and their families.

Highlights

• Fiona Phillips shares her personal journey with her dad’s Alzheimer’s, shedding light on the emotional rollercoaster of caregiving. 🎢
• Families are often unprepared for the financial and emotional toll of Alzheimer’s care. 💔
• Visiting old family homes can lead to painful realizations about a loved one’s decline. 📷
• Personal accounts reveal the inadequacy of home care and the reliance on unpaid family members. 🤦‍♀️
• The documentary critiques delayed government action on Alzheimer’s care and highlights the need for immediate solutions. 🚨

Key Takeaways

• Alzheimer's care often falls on families, posing emotional and financial burdens. 🏠
• Early diagnosis is crucial yet hard to obtain, affecting the course of treatment and care. 🕒
• A postcode lottery in the UK affects access to proper treatment and care for Alzheimer's sufferers. 🎲
• There is a critical need for integrated services between health and social sectors to support Alzheimer's care. 🤝
• Many carers experience isolation and stress due to the lack of systemic support. 😟
• Government strategies for Alzheimer’s care have been delayed, impacting future preparedness. 🏛️

Overview

Fiona Phillips takes viewers on an emotional journey through her family’s experiences with Alzheimer’s, highlighting the shortcomings of the UK’s health care system. As she navigates the challenges of caregiving for her father, insights into the everyday struggles of carers reveal a pressing need for systemic changes.

The documentary unravels the heartbreaking reality of living with Alzheimer’s—impacting both the sufferers and their families. It showcases the enormous commitment required from families, often stretching them thin financially and emotionally, as they strive to provide quality life while battling against bureaucratic inefficiencies.

As Fiona and other featured families grapple with the uncertainty of Alzheimer’s progression, they also contend with the fragmented support system. This narrative puts forth a strong call for a more integrated approach to elderly care in the UK, urging for better training for health professionals and streamlined services between health and social care sectors.

Chapters

• 00:00 - 05:00: Introduction and Fiona's Story Fiona Phillips introduces the topic of Alzheimer's disease and its impact on nearly half a million people in Britain. She shares her personal connection to the subject through her family's story, starting with her father, whose name is Nora.
• 05:00 - 15:00: Fiona's Father and Family Care Challenges Fiona's family faces challenges in caring for her father, Phil Dick, who recently moved into a flat closer to his children. Previously living in Wales, which required a 7-hour travel one way, the family decided to relocate him to a more convenient location in London to ensure regular visits. The chapter touches on family dynamics, their responsibilities, and efforts to maintain a connection despite busy lives and jobs. It also mentions past experiences related to the Fleet Air Arm, implying a background in naval service.
• 15:00 - 25:00: Barry and Yvonne's Story The chapter details the narrator's realization of their dad's Alzheimer's condition, acknowledging a late recognition of the symptoms. This prompted the narrator to relocate him from his home in Wales to an independent living flat for the elderly in Portsmouth. The father shows a unique habit of using a toaster to light cigarettes, highlighting a quirky behavior in his new living environment.
• 25:00 - 35:00: Early Diagnosis and Treatment Challenges The chapter titled "Early Diagnosis and Treatment Challenges" highlights the experiences of a typical Alzheimer's caregiver in the UK. The speaker shares their personal story of commuting every weekend from London to tend to their father who is suffering from Alzheimer's disease. This narrative is a reflection of the countless unpaid caregivers across the UK, with over half a million individuals in similar situations. The responsibility of care typically falls upon family members, as it has with the speaker's father. While the speaker is not present, their uncle, Barry, assists by visiting three times a week, exemplifying the family reliance and shared burden in caregiving.
• 35:00 - 40:00: Fiona's Visit to Her Father's Past Home Fiona visits her father's past home and reminisces about the difficulties her father now faces in his everyday tasks. Simple activities like making a cup of tea have become challenging for him. It reflects on the passage of time and the changes in responsibilities within family dynamics.
• 40:00 - 50:00: Diagnosis and Drug Prescription Issues The discussed chapter focuses on the challenges associated with making accurate diagnoses and ensuring appropriate prescription of drugs. It addresses common issues such as cognitive difficulties (e.g., 'brain trouble') and the metaphorical use of phrases like 'switching the fridge' which might imply confusion or errors. The mention of food poisoning and fish could indicate an example scenario used to illustrate these points. The overall content seems to revolve around the potential mistakes or misunderstandings in the medical diagnostic and prescription process.
• 50:00 - 60:00: Carers' Isolation and Challenges The chapter discusses the various challenges and feelings of isolation often faced by carers. It highlights how daily routines and small actions can become overwhelming. The specific mention of mixing beverages humorously illustrates the chaos and exhaustion in a carer's day. The narrative captures the emotional and physical strain through repetitive exclamations and fragmented thoughts, emphasizing the theme of how carers often struggle to maintain their own sense of order and sanity amidst their responsibilities.
• 60:00 - 75:00: Peggy and Alex's Story The chapter titled 'Peggy and Alex's Story' focuses on the evolving situation as a disease takes hold. It describes how, despite the gravity of the situation, laughter is still possible. However, it quickly becomes evident that concerns are mounting. Attention is drawn to unusual pills found on the kitchen worktop, hinting at unknown or unfamiliar medical treatments that are now part of their lives. This discovery ties into the broader theme of uncertainty and how they are coping with the challenges posed by the disease.
• 75:00 - 80:30: National Dementia Strategy and Conclusion This chapter addresses the national dementia strategy and concludes with final thoughts. It appears to involve a dialogue regarding treatment or medication adherence related to dementia care. The conversation hints at individuals (possibly caregivers or healthcare professionals) discussing the importance of taking prescribed medications regularly and the apparent issues with adherence or lack of supervision. This is indicated through a conversation about taking medication ('you’re supposed to take one every day') and the evident concerns ('not been taking on every day').

Who Will Take Care of Us? Mum, Dad, Alzheimer's & Me (Alzheimer's Disease Documentary) | Only Human Transcription

• 00:00 - 00:30 [Music] I'm Fiona Phillips tonight on dispatches I'm going to show you how Britain is failing the nearly half a million people without timers this is my family story [Music] [Music] this is my dad's his name is never but
• 00:30 - 01:00 you like to be known as Phil dick - right yeah and he's been in this flat for I guess about six weeks now yeah and we took a decision as a family to move him down here he did live in Wales which was taking us seven hours one way seven hours back my brothers and I've got family jobs all that sort of thing so we wanted to move dad near and I was in the Fleet Air Arm you were in the fleet around the freeter we shoulders back there now and that's why it's important in London and we sailed down but every many every weekend to see you do make
• 01:00 - 01:30 sure you're okay I first realized my dad had Alzheimer's about a year ago to be honest he's probably been ill for a lot longer but I just didn't pick up the signs when I finally understood how ill he had become I moved him from his house in Wales to this flat for elderly independent living in Portsmouth you like you're using the toast there but not for toes for lighting your cigarettes huh hopefully they're unique
• 01:30 - 02:00 one of my little birds that I've been coming down every weekend from London to look after my dad my situation reflects the stories of more than half a million unpaid Alzheimer's carers in the UK the burden of looking after someone usually falls squarely on the family and that's what's happened to us [Music] when I'm not here the care of my dad is taken up by his younger brother my uncle Barry he pops around three times a week
• 02:00 - 02:30 to check up on him so John can I tell you something yeah my dad now finds the everyday tasks difficult even making a cup of tea can be a struggle
• 02:30 - 03:00 now you got a little brain trouble you can't switch in the fridge um so don't let me just mean when you're in Wales because you're switching the fridge now if you had food poisoning there's a fish
• 03:00 - 03:30 fish their dad has just put tea coffee and fruit juice in the same Cup coffee coffee iced coffee tear-stained together quickly get out I like oh man oh oh oh man oh man I think I'm gonna have
• 03:30 - 04:00 something rather less exotic if you can find you I'm glad we can still have a laugh but as the disease takes hold the worries aren't funny I spot some pills I haven't seen before on the kitchen worktop you know I just notice this town is just lying around I don't know they were up together there's only one
• 04:00 - 04:30 out then what are they for the ponies the fluid on the legs moving on this is mixed swollen up have you been taking them yeah not too many though yeah anima nice nice to take them I'll tell you somewhere I do it whether one two three four you're supposed to take one every day on so you've not been taking on every day no and no supervision at all shouldn't
• 04:30 - 05:00 just be flying around [Music] as well as uncle Barry I've organized a package of care for my dad a nurse comes once a week I pay for a hot meal to be delivered at lunchtime and a care worker from Social Services comes around to make sure he eats it but we're gradually finding out that dad needs a lot more care than we can provide Barry has noticed that my dad's personal hygiene is beginning to slip
• 05:00 - 05:30 it's the other things they've got he needs you know like making sure he shaves and make sure he has a bath it is still not at a house and sadly when did you ever buy it well when did you ever in that's what happened next I think the shower surprised he didn't it I went up there sat down and all bloody hell there what room is there there it was hot
• 05:30 - 06:00 it was hot you burn yourself that's why skins and wrinkle don't I'm also concerned that my dad sometimes gets lost in the local area so I've written his address on cards that's why we've left AGC to put in your coat pocket yeah so if you get lost again then you know people know where you are there's one in your wallet as well isn't there you're happy here aren't you yeah
• 06:00 - 06:30 more often than not the burden of care falls on the family dispatches asked you Gulf to carry out a survey of over 750 people who care for relatives with Alzheimer's we found that 80 percent said they were dependent on families for help when I'm not around I've relied on Uncle Barry to check up on my dad but now there's a
• 06:30 - 07:00 crisis Barry's going abroad for a major family reunion we're going to South Africa Johannesburg for three months and all the family are going out there as well of course Barry's worried about leaving my dad we will be thinking about him all the time because you know he does need full-time care he needs somebody going in there every day take him out get his shop and things like that because he cannot cope on his own he
• 07:00 - 07:30 survives but that's about all so I'm going round to see Barry just before he flies to Africa your favorite knee did you ever see yourself in that situation where you do you'd be actually looking after your own older brother no no definitely not but because there's just not like air available we were having - well it's the basic things that
• 07:30 - 08:00 everyone takes for granted that most people can do go to the bank draw the money to go shopping or anything we can't do any of that on his own son this is gonna be a major problem while we're away yeah we're going to have to try and get some of these services in if we can get them in well we've already got as many as we can in haven't we but we don't quite the consistency doesn't seem to be there it's really difficult considering the future isn't it really cuz I really can't bear the thought of
• 08:00 - 08:30 him going into a home I think it's inevitable he will have to go into some kind of home most people can cope with the initial stage of Alzheimer's and but as it progresses along then it's very very difficult especially like you with two young children as well you know it can break up families the thoughts of putting my dad into residential care is very upsetting I'm determined to try and keep him living independently for as
• 08:30 - 09:00 long as possible I've already experienced this dilemma my mum and dad were living in Wales when my mum developed early onset Alzheimer's in her late 50s she spent her dying days in a care home two years ago she passed away her ashes are buried at a local crematorium in Wales the cruel thing about my mum's experience abouts homers is she was a lot younger I mean when we
• 09:00 - 09:30 look back now she was definitely showing signs of it in her late 50s and she was diagnosed with early onset in her early sixties I just remember in the last few months of my mum's illness nice to come down every other weekend on this long journey down to Wales and I remember walking into the home and hearing this awful awful scream and I just thought oh my gosh he's that and it was actually my mum move them
• 09:30 - 10:00 my mum was one of the 15,000 people in the UK to develop Alzheimer's before the age of 65 early onset Alzheimer's is a horrible disease the rate of decline is often rapid Yvonne Saunders is 60 years old she developed early onset
• 10:00 - 10:30 Alzheimer's in her mid 50s her husband Barry is 62 he's an architectural designer and runs his own business in Gillingham to be able to look after him Vaughn full time he's built an office at the end of his garden looking after his wife is very stressful he's not had a full night's sleep for the last five years when you caring for someone that
• 10:30 - 11:00 means you've got to literally get them up dress them wash them feed them so it was a question of trying to adapt the home to suit the need really and that that gave me one hell of a hangover I've got a mortgage that I would one of my time life when this all started off one of the things everyone said was that she did more mere pour into a care home and and I don't want that time ever I'm
• 11:00 - 11:30 fighting for that I get more that's why we can don't we now we're carry on for as long as it takes and if I crack up a crack up Barry and Yvonne have been married for 40
• 11:30 - 12:00 years they were childhood sweethearts they had a traditional marriage Yvonne ran the house while Barry ran the business since Yvonne became ill Barry has received 20 hours of respite care a week but he now works full-time and runs the house put them on the table for me their son push that don't get a bag push never bring them back yeah you can put
• 12:00 - 12:30 em on that little table all right let's go we've got them down on the table god I just put them on the table from the very beginning I've taken on all of the household chores it was a big learning curve what you can
• 12:30 - 13:00 do in the kitchen is is now very very limited and sometimes I'll see that interface you know can I do this can I do that you know to have to say no I'll do it wasn't a very nice feeling and I wasn't very nice feeling you want some pays done it yeah yeah kindly I'll get you down here what you got there darling on there this
• 13:00 - 13:30 one what's this you know what these are I don't think what's this what you there fish what is it Hey all right let's do one of it at a time yes it yeah let's just shoot it that bit first on just a little bit at time that's it yeah - I don't know hold on let me do know I'm struggling
• 13:30 - 14:00 that around you [Music] Yvonne and Berry's daughter Claire also helps out YouGov survey conducted on behalf of dispatches found that almost a
• 14:00 - 14:30 quarter of carers of people with Alzheimer's were under the age of 40 [Music] one of the problems with Alzheimer's is it can take years to get a formal diagnosis if Vaughn is no exception without a diagnosis there's no access to drugs and it could mean that your decline is far more rapid by the time
• 14:30 - 15:00 yvonne received a diagnosis and was offered dementia drugs it was too late this year has been the hardest year it's gotten very quickly declining and the change in her personality it's been very rapid it's just having my mom around being able to talk now you've got problems or got worries I can't sit and talk to her and get advice I could use to you sort of you've got an ongoing grieving the person that's if they're in
• 15:00 - 15:30 body but not in mind anymore that's very difficult is the hardest thing for me like my mum back no we're going to happen a bit today so that's a yeah that's them the most it cook for me you just sort of change roles as opposed to a certain degree it's good in a certain way because I know that I can be there and help and support her and house for Dad but sometimes sometimes you just need your mom thank you and that's what I miss very very much
• 15:30 - 16:00 [Music] and I think the time we've got left is around five six months and hopefully it won't be sooner but that was hard enough to accept it's only going to be that amount the time that I think you know
• 16:00 - 16:30 she's aware but I think if it carries on as rapidly as its carriage on this year and that's all we're looking at a lot of things we need to get prepared and talk about [Music]
• 16:30 - 17:00 when I go around see the family I really want to talk to Claire we both know what it's like to have a mum with Alzheimer's if you were diagnosed without time with do you think you'd be able to I would want to I would want to end it you know I would want to get to a certain point where your life does start changing and I wouldn't want to go on I remember one instance when I was in my mum's room with her on her own and she
• 17:00 - 17:30 was she was just really really suffering even her breathing was labored everything she's just lying there and I really felt like putting a pillow look ahead well I don't it what stopped me actually but I knew it was wrong for a start but I felt it would have been right watching your mother disappear is awful but Claire's dad Barry is losing his wife did any doctor ever tell you how the disease would progress and what you'd have to face at the time we were
• 17:30 - 18:00 told first it would be 9 to 15 years a year later that went down to 7 to 12 years this is life expectancy life expectancy through the through the illness then all of a sudden the only part this year it was just if is if Yvonne had dropped off the graph her abilities and the things that she could do and couldn't do double incontinent
• 18:00 - 18:30 everything went in such a short space of time that it took your breath away you know it it always has reminded me of having a helpless child really or a baby but with none of the joy associated with that and none of the help actually because when you've got baby you get a district health nurse coming round and you get all the help you need your GP will always see you she has gone back to her childhood you know she'll come chuffing out up to me he like this like
• 18:30 - 19:00 a child you know and she'll she'll look she looked right down at me me I might be sitting down and then she'll just go I love you and that finishes me you know because obviously respond we'd be married 40 years and and you think she's saying that she has no concept of it anymore you know because the person that you are laying next to a night isn't your wife anymore you know I'm
• 19:00 - 19:30 laying there looking at the ceiling thinking what the hell am i doing we would we would do all the things that a normal married couple would do unfortunately at very early stage sexually in doubt and that hurt a lot how often do you walk into here and just cry I think you do cap times a week I think you can't help it sometimes caught you just catching me
• 19:30 - 20:00 out there sometimes you get to the point anything Christ one how do I go on it is a day-to-day struggle yeah it'd be nice if someone from high up realized that there's something missing they had no right I've got it nowhere near right and they need to listen to carers next what to do about my dad is
• 20:00 - 20:30 his health deteriorates and I see for myself how we're failing both sufferers and carers I've recently moved my dad into an elderly Independent Living complex in Portsmouth after he became ill with Alzheimer's I was sharing the majority of care with my uncle Barry
• 20:30 - 21:00 but since he flew to Africa for a family reunion all the care is left to me I'm juggling looking after my dad with working full-time and two young children as the disease progresses my dad finds reading increasingly difficult this saddens musi used to be a prolific reader photograph albums have replaced his books [Music]
• 21:00 - 21:30 we have 11 yes this is well horn isn't it - oh they'll Fleet him yeah dad was in the Fleet Air Arm throughout the 1950s he married my mum in March 1960 and they had three children do you remember meeting them where you met her
• 21:30 - 22:00 yes she was smiling yeah you were saying that yeah and she trotted away another wall she won't be here again okay she did yeah for 40 odd years she was Oh Tony 40 and where was it he met her a dance didn't you yeah sorry where we may be going to same power dance I said oh no I didn't I didn't say I did hey who's that is it good
• 22:00 - 22:30 I've just pointed to a picture of me taken only a couple of years ago I just seen it and said it and then it goes again yeah that's me [Music] I only moved my dad to Portsmouth two months ago he'd been living in the
• 22:30 - 23:00 family home in Wales but I wanted him closer to me I'm going back there to collect some of the possessions he left behind on a very familiar route on my way to Wales which I used to do every other weekend it wasn't so much the drive there although sometimes it did take hours and hours just what I was going fine when I got there and not always had to stay in the hotel because dad wouldn't let me in
• 23:00 - 23:30 the house I don't know looking back on it now I don't know how I did it I mean I did I did get very very rundown I had shingles and I just never stopped though this doesn't bring back both fond memories everything after a long 300 mile drive I'm exhausted and increasingly nervous about what state dad's house will be in this is the first time I've been for this house since I moved my dad out oh gosh dude freezing this is the
• 23:30 - 24:00 kitchen which is always immaculate my mother would turn over in her grave doors off the covers is dirty he's shaving in the kitchen sink it's just complete chaos this is quite poignant when I saw this actually he's always always ready to always got books everywhere he's come master your memory oh gosh and that's well my goodness
• 24:00 - 24:30 maybe he knew something was going on and he didn't know picking up dad's mail in the hallway is just another reminder of the constant battle you face as a carer I've got most of his mail redirected there this is how difficult it is they wouldn't redirect the mail unless I prove that I had enduring power of attorney which I did it means a huge long time to try and get
• 24:30 - 25:00 his mail directed so now what have they done they sent they've got my name on his checkbook but they're still sending it here people just don't get it what if or someone without time instead of elderly partner he was dealing with all this and this is the living room which my mum always kept so immaculate lean it just looks like it's been the patient's been living there for my dad was just sleeping on that old mattress and it was
• 25:00 - 25:30 filthy I've played all the bedding off there it was absolutely filthy and it's just I don't know it's just like a life that's over that's confused look at that it's just a complete disarray in this odd little thing that he's done it here will just be bricked I don't know this is really upsetting that I'm just glad he's out of here [Music]
• 25:30 - 26:00 my dad was living in squalor I assumed he had depression because of my mum's death but thinking back he probably had the early stages of Alzheimer's for me it's highlighted the importance of an early diagnosis in our survey more than a quarter of carers said those they looked after remained undiagnosed for at least three years where you live determines how quickly you receive a
• 26:00 - 26:30 formal diagnosis if you're fortunate to live near a memory clinic you're likely to be diagnosed faster I didn't realize that I had that much of a problem but having been told that I had then I've got to accept here in Southampton the memory clinic is one of the leading centres in Europe for dementia research it was set up by dr. David Wilkinson copy these shapes to me first of all the these shapes here without a diagnosis
• 26:30 - 27:00 you can't get drugs but then there's another problem you're unlikely to get drugs until you're in the later stages of the disease the Department of Health's drugs advisory body nice told dispatches that it recommends prescribing certain drugs only when people reach the moderate stage of the disease this is because they consider them neither cost not medically effective at an earlier stage some clinicians like dr. David Wilkinson have
• 27:00 - 27:30 adopted a less stringent interpretation of the guidelines how effective is aricept and drugs like Harris have in your opinion I think they're very effective I mean they make a clear impact on probably about 60% of people you give them to and what we've demonstrated in the last few years that drugs like our set and also a Bitzer memantine they prevent the decline in those people are declining what do you think of nicest decision to advise
• 27:30 - 28:00 against prescribing aricept and dementia drugs for the early stages of Alzheimer's or dementia oh well it's it's up there with him some of the worst decisions I think I I there is no question in my mind and I think the mind of anybody who is involved in the use of these drugs that they do have a significant benefit in the earliest stages of the disease and the characterization of patients with early disease as mild I think is also pretty
• 28:00 - 28:30 pretty scandalous because there's nothing mild about the early stages of Alzheimer's disease certainly a lot of people don't know what treatments are available and never told what treatments are available I think the service is very patchy and we do know there's a lot of postcode differences in the UK in terms of the provision of services and also for the prescription of drugs at the moment how much on a daily basis does it would it cost to prescribe aricept in you know in the scheme of things it's not that expensive it's
• 28:30 - 29:00 around about 900 pounds a year so it's about to power 50 a day something like that obviously in terms of things like cancer therapies I mean it's a tiny price to pay but even until very recently even some of the indigestion medicines were more more expensive than this and I think that you know there are many other conditions like epilepsy and multiple sclerosis and Parkinson's disease which also have expensive treatments and and I don't think people quibble about that dr. wilkinson memory clinic in
• 29:00 - 29:30 Southampton is prescribing drugs to people in the early stages of the disease Mike Richardson is 75 years old and was diagnosed with Alzheimer's eight months ago when he developed the disease he became depressed and started to lose the ability to read this is a male but a photograph for 40 years yeah but I'm originally what Dad worker
• 29:30 - 30:00 and he can't work out what they are so I thought that that one was simpler to read no it was like it very much but it's it's better than nothing for him mike has been prescribed aricept by the Southampton clinic since he was first diagnosed and it's had a dramatic effect on the quality of his life it's been a big difference as absolutely like I don't know what would have happened later I really don't know I think I'd
• 30:00 - 30:30 have gone right down at home no it was good you're happier now oh yeah I I mean I'm I'm not um high mobility problems are told he doesn't look very problems so a safety problem we're just so very lucky that he was able to because frankly because there are many of it come in the back of my mind I can't help
• 30:30 - 31:00 wondering where the dad might not have had such a rapid decline if he'd been given drugs as it is I have to do his main weekly shop there have been a few times in the past I've been in a supermarket and seen someone elderly looking a bit disorientated well now that elderly person is my dad um the thing I have to remember when I'm shopping for that is I can't buy anything that he might need to cook he can't cook basically it's too dangerous
• 31:00 - 31:30 so bananas are brilliant because that I know that he's getting some vitamins but then otherwise really you know I'm getting stuff like Scotch eggs lots of drills which I never normally bully him but you don't need to cook them and that's why I have to get unpaid carers are saving the government just over six billion pounds a year the burden of caring for a spouse or family member is a draining frustrating and often very
• 31:30 - 32:00 isolating experience our survey underlined just how isolated in stressful carers lives can become 41 percent said that they rarely or never had any rest bite more shockingly 20% said they sometimes or often feel threatened by the person they're caring for usually the only lifeline is a carers group I've joined one in Portsmouth run by the outs himer society what is the
• 32:00 - 32:30 hardest part do you think of obeying carer giving up your own life everything's put on hold you don't have a life to yourself I mean the first year you're screaming you're shouting you're crying in that you're trying to make them do what you want them to do in that and it suddenly dawns on you I can't do this I've got to change sometimes the person that the ill person is violent towards their own relatives one lady was
• 32:30 - 33:00 almost strangled and she her husband actually tried to break her on this doesn't come up in any of the literature any of searches you do it's always the carer being the aggressor but that isn't the case if you're the only carer caring for somebody you do feel very alone I'd get up in the middle of the night go and see to mum settle her come back go back to bed and my husband didn't even know I'd gone I was the carer for my mother she died
• 33:00 - 33:30 about four and a half years ago now nearly five years ago I went in with a friend one day and my mother was standing at the front door in a little trouser suit with a few bras on top of her back so loads bare feet a cold hot-water bottle the doors were wide open and it was wintertime there was a pot an empty pot boiling on the stove and she was totally bewildered
• 33:30 - 34:00 every single week without fail I cried because I don't think people who have never have been touched by it really understand it and I think there's so many misconceptions about what it is if you went to your doctor with cancer they don't say to you go away and when you can't breathe come back and I'll help you but if you got it early stages dementia and well there's not a lot we can do you know when it's really bad then we'll see if we can help you you know I can say with so many of you actually the journeys you've heard that is left you full of emotion even years
• 34:00 - 34:30 on because of the a few days later my dad is found wandering the streets in the early hours of the morning I'm finding the burden of being the sole carer is taking its toll I got a phone call from Portsmouth Police saying that my father had been found in the middle of the town centre at 1:30 in the morning absolutely on the
• 34:30 - 35:00 verge of freezing to death so I've got down here as soon as I can and he's fine and I've just left him and had stayed dad I've got a ghost I've got to get home to the children I felt terrible saying that to him but when I came out this morning I felt awful saying to the children I'm going to see granddad and I honestly I just feel like screaming sometimes I never seem to give a hundred percent for anything and there is going to come a time when something has to give and I'm not quite sure what that is at the moment I really really really don't want to put my dad in a home for
• 35:00 - 35:30 me that would be the biggest biggest defeat and also a huge burden of guilt so um I don't know I'm gonna have to think of a solution once things calm down a bit but I can't see when they will it and then but I can't ignore dad's deterioration even switching on the TV is a problem come back
• 35:30 - 36:00 good God look at that well well Oh rainy [Music] he wanders from room to room [Music] okay soon [Music]
• 36:00 - 36:30 what it somewhere I hope so [Music] photographs are a lifeline to a past that's slipping away he's a mine my lovely lady she had Alzheimer's so she did important to me
• 36:30 - 37:00 yeah beautiful it was so nice and you know I'd do anything to bring her back unfortunately we can't do that [Music]
• 37:00 - 37:30 next what should the government be doing
• 37:30 - 38:00 to help Alzheimer's sufferers and their carers a few nights ago my dad was found by the police wandering around Portsmouth in the early hours shivering with cold it's obvious living independently he's becoming a risk I feel terribly guilty but moving him
• 38:00 - 38:30 nearer to me in London would disorientate him further and I know he doesn't want to go into a care home so I'm really torn I've got your mug shot now at the police station they found me up they say we've got you dead here in the police station like many carers I've got to find my way to a confusing system to get home help for my dad public money for Social Care is very tight to help me clarify things I've decided to visit my dad's medical team which is
• 38:30 - 39:00 headed up by consultant dr. Carol Trotter I think in the last few years there seems to be even tighter budgets and rationing occurring which leaves these people that your father and others in the mild to moderate stages of dementia without much input it's only those people with very severe behavior problems or very very complex needs that are funded by health why is that the diagnosis the treatment and the care
• 39:00 - 39:30 about Simon was so disparate I mean at one point it when you go to get a diagnosis it's NHS you go into the care system and suddenly you're being means-tested when it's actually an illness I think this is this is the crux of the whole problem if you have a physical illness you're treated under the health system if your care is deemed to be social it comes under a separate budget from social services and they
• 39:30 - 40:00 local affair caring for them because they have the design exam so why don't I if you have dementia and you can't remember how to wash and dress yourself you have to pay for that care if you have the means whereas if you have a stroke and you need a lot of care in a nursing home you are funded by health the level and quality of home care can vary according to where you live the
• 40:00 - 40:30 decision as to where the outside most sufferers receive home care or not is down to a postcode lottery in our survey of carers fewer than half 49% said they got help from social services nearly two-thirds of councils only fully fund care when elderly people are at substantial risk Peggy McNab has severe Alzheimer's her main carer is her 83 year old husband Alex they've been married for nearly 60
• 40:30 - 41:00 years and they have three children in the last few months Peggy has stopped walking oh honey you know evening the patient suffering with Alzheimer's does end up bedouin you know because they're completely unable to walk completely unable to help themselves chew or drink
• 41:00 - 41:30 and it becomes extremely difficult in you know for people on myself and just to try and kind of feed her get her to drink and she just you know digit it tell you it's a little left where's that gonna go oh I'm gonna that's it that's
• 41:30 - 42:00 good I think the whole process of this disease really is very upsetting you're just watching every week in every month where peg gets worse [Music] you understand a 4-meter loosen the cotton icon to give Alex some respite he
• 42:00 - 42:30 takes Peggy to a day care center three times a week it's run by a charity the Alzheimer's Society this is funded by Social Services but Alex also has to pay fifty pounds a month normally go down by 10 and then I'm picking it up between three and half pounds it doesn't give you a great deal of time in between to do all the chores that's necessary time just seems to fly here we
• 42:30 - 43:00 go hello peg hello how are you today as Peggy's at the severe end of the spectrum she also qualifies for two hours of care a day again this is provided by a charity but paid for by social services Peggy is unable to get upstairs she now sleeps in a bed in the kitchen the next morning
• 43:00 - 43:30 Julie Alex and Peggy's daughter is worrying about her dad just as much as she is about her mum there's going to come a point when dad will not be able
• 43:30 - 44:00 to cope to do this on a 24-hour seven-day-a-week basis that's 83 now he will be 84 in March so obviously and he's got high blood pressure so you've got to think about his health needs as well yeah this money to do assembling a package of care is complicated many families say they struggle to find
• 44:00 - 44:30 a pathway through the different organizations I think there should be some kind of setup where the agencies actually work together to support that one person with Alzheimer's social services and the NHS are working together the government is about to announce a new National dementia strategy saying the care of Alzheimer's sufferers would be a priority a key improvement will be the training of GPS
• 44:30 - 45:00 so that they can spot the first signs of dementia it also wants people to be able to stay in their homes for longer he was caught in Croydon is the kind of Center the government wants to roll out across the country here NHS clinicians work alongside social workers under the same roof creating a one-stop Alzheimer's shop what we attempted to do is offer a service approach rather than simply a clinic we'll do the assessment if
• 45:00 - 45:30 possible make a diagnosis and then help people meet their needs from this team so we don't pass people on to other services who are offering a seamless service if the psychologist or the psychiatrist or the occupational therapist comes back and says all this lady needs to have meals on wheels or perhaps some help with personal care or whatever then they can do that that doesn't mean that somebody else from that disciplinary social work has to go out and ask all the same questions check
• 45:30 - 46:00 it all out right and then decide that it can happen so it's much better for the clients as well don't you think they've made this place for gladly now we're all quite happier Croydon is offering a joined up service but the outsider society has predicted it would cost an extra six hundred million pounds to roll it out across the country to facilitate the strategy being rolled out and actually upon we would hope that each local authority each health authorities got responsibility providing services will
• 46:00 - 46:30 get extra finance from the Department of Health critics of the National dementia strategy have said it's been postponed twice in any way without money it won't work but we need an urgent solution in 15 years time there will be over a million dementia patients in the UK without a long-term care and funding commitment from the government I'll continue finding it hard to cope but
• 46:30 - 47:00 like thousands of other carers I'll carry on because I love my dad since he was found by the police he's stopped wandering late at night so for now he'll stay in his flat humanity all right there good god yeah I take a walk is and get lost sometimes sometime what the hell have I done where is it I know you could that not you that in December actually and the
• 47:00 - 47:30 police found you were freezing yeah do you remember I was walking up there and Lois I thought god I'm going to freeze here I think I nearly did thank you and what about the flat we have him stainless oh well I don't know I often think of that it's a nice place and quickly when you're in is 0.5 and I go I
• 47:30 - 48:00 probably probably end up by going somewhere else you think so it just depends where I'm dreading what my dad will go through in the future and the decisions we're going to have to make as a family for now I just want to enjoy the quality time we have left [Music]
• 48:00 - 48:30 you