Cure the Care System: our new short film
- Thread starter HarrietD
- Start date
I watched the film and it was very good but I'm not sure it goes far enough. People who do not know about dementia just thinks it is a memory problem. Where I live day care is at a care home for which you have to pay (plus transport charge) respite is also getting difficult to get and if you want home carers forget it as there aren't enough to go round. As usual it is cheaper for the government to let the relatives to do the caring.
My mum is now in residential care with advanced vascular dementia. She can't walk or do anything for herself without constant support from the brilliant carers and nurses. She doesn't even remember who her husband was or her children. The cost of her care is extortionate but we, like many, many others have no choice but to pay. I'm afraid this and previous governments simply don't care about those with dementia, their families or those caring for them. It's much easier and cheaper to do absolutely nothing and wait for the person with dementia to die rather than treat them with the respect they deserve. The current government will do little to address this funding problem because it's far easier to turn a blind eye and spout nonsense about future plans to sort the problem than force the Treasury to cover all the costs. If you had cancer your care would be fully funded but if you are unlucky enough to get dementia, you are on your own. It's an utter disgrace and one I hope this government pays for dearly at the ballot box. Sorry for the rant but these things need to be said.
Spot-on! I too am living the UTI from hell - who knew it was physically possible to talk continuously for 12hrs? I don't need a "supporting" voice at the end of the phone, I need someone to sit with her, so I get a break from the lunacy.
It's quite mild really. We've gone four years and are only now getting access to care, though it must all be paid for. I'm caring for one with dementia and one with Downs Syndrome and I couldn't manage without my son with DS. The system is unfair, if you can get access to it; if you were careful and saved then you pay for everything. If you were careless you get everything paid for (I have no problem with genuine need). How can that be fair? We recently had a two week break by paying for a care home, cost of £2200, our first break in over two years, it took me 10 days to relax. I'm fully aware that I can't go on in this way, it's going to kill me, I never envisaged a retirement like this.
I totally agree with all comments. The film was affecting, but poorly lit and confusing in places in that it was not always clear who was speaking. People have said it isn’t hard hitting enough, but that’s perhaps a bit unfair bearing in mind what can be shown in a fairly short time frame. I do think that sadly, it will not get a wide audience and will definitely not reach those that most need to see it.
The sad truth is that there will never be any political will to change the status quo because it will simply cost too much money. We, as carers, must face the fact that governments and perhaps wider society do not give a flying fig about us and our PWDs and I doubt very much if that will change in my lifetime.
I don’t wish to be negative, but dementia isn’t an ‘attractive’ or ‘sexy’ cause to espouse. Most people don’t understand it or want to deal with it. The medical profession backs off because it doesn’t know how to handle it, leaving sole untrained family carers to battle on as best they can. The financial implications of dementia are horrific, with families bankrupted by the cost of keeping loved ones alive in care homes that are not always as fit for purpose as they should be.
Until society comes to terms with the fact that dementia is a bigger pandemic than COVID will ever be, we will never make progress. We all need to accept that as people are living longer, mental illness may well become the leading cause of death, if it is not already. We MUST find a way to deal with this; in a civilised world it should not be impossible.
I agree with Seaholly and others; there is a massive gulf between ‘support’ and ‘help’. The former is well meaning, but often useless, the latter non-existent because even the professionals don’t have a clue most of the time. The one person in the world who knows the most about dementia is not the person who has it: it’s the exhausted, beaten-down 24/7 carer, to whom nobody is listening.
The sad truth is that there will never be any political will to change the status quo because it will simply cost too much money. We, as carers, must face the fact that governments and perhaps wider society do not give a flying fig about us and our PWDs and I doubt very much if that will change in my lifetime.
I don’t wish to be negative, but dementia isn’t an ‘attractive’ or ‘sexy’ cause to espouse. Most people don’t understand it or want to deal with it. The medical profession backs off because it doesn’t know how to handle it, leaving sole untrained family carers to battle on as best they can. The financial implications of dementia are horrific, with families bankrupted by the cost of keeping loved ones alive in care homes that are not always as fit for purpose as they should be.
Until society comes to terms with the fact that dementia is a bigger pandemic than COVID will ever be, we will never make progress. We all need to accept that as people are living longer, mental illness may well become the leading cause of death, if it is not already. We MUST find a way to deal with this; in a civilised world it should not be impossible.
I agree with Seaholly and others; there is a massive gulf between ‘support’ and ‘help’. The former is well meaning, but often useless, the latter non-existent because even the professionals don’t have a clue most of the time. The one person in the world who knows the most about dementia is not the person who has it: it’s the exhausted, beaten-down 24/7 carer, to whom nobody is listening.
I have recently lost my wife through dementia. She was first diagnosed with frontotemporal dementia in March 2019. The film brought home to me the beautiful moments we shared, but also the trauma of seeing a loved one disappear gradually before your eyes.
Whilst there are many wonderful people working in the NHS and care system, my experience was that the whole emphasis and discussion in our last months together was about who pays for the care support. There seemed to be a constant argument between the NHS and social care about funding. I even received a letter a few days before Brenda passed away advising me that we did not qualify for the NHS Fast Track Funding, as Brenda's condition had improved and unlikely to deteriorate in the foreseeable future.
Why is dementia not seen as an illness and treated the same way as any other illness under the NHS? It seems that treatment under the NHS is free at the point of delivery, except for dementia. Why do people with dementia and more so, their carers, have the added concern about finding the funds to pay for care?
The whole care system is broken and needs to be fixed. It is about time that the Government addressed the issue of social care funding and introduced a fair system.
Whilst there are many wonderful people working in the NHS and care system, my experience was that the whole emphasis and discussion in our last months together was about who pays for the care support. There seemed to be a constant argument between the NHS and social care about funding. I even received a letter a few days before Brenda passed away advising me that we did not qualify for the NHS Fast Track Funding, as Brenda's condition had improved and unlikely to deteriorate in the foreseeable future.
Why is dementia not seen as an illness and treated the same way as any other illness under the NHS? It seems that treatment under the NHS is free at the point of delivery, except for dementia. Why do people with dementia and more so, their carers, have the added concern about finding the funds to pay for care?
The whole care system is broken and needs to be fixed. It is about time that the Government addressed the issue of social care funding and introduced a fair system.
Hello @FG1974 Please accept my condolences on the loss of your wife. It`s dreadful to think her final days for you were spoilt by financial disagreement.
My husband was granted CHC two days before he died. There wasn`t even enough time to get it processed.
During the time my husband had dementia, one of my friends whose husband was in the same condition was granted CHC because she was determined to break the application code and had the strength and knowledge to know where to go for help with her application.
My husband was granted CHC two days before he died. There wasn`t even enough time to get it processed.
During the time my husband had dementia, one of my friends whose husband was in the same condition was granted CHC because she was determined to break the application code and had the strength and knowledge to know where to go for help with her application.
Hello - Thank you for your kind words. I have some wonderful memories of simply holding hands and looking into Brenda's eyes and telling her how much I loved her. I sometimes saw fear or confusion in her eyes, but there were also wonderful moments when I saw a response of recognition in her eyes. I will always remember those moments.
It was not so much a financial disagreement, as I had never actually applied for any funding. It was just that it seemed the system (not the wonderful caring individuals in it) seems to place a greater emphasis on the question of funding, rather than the needs of the individual. That is what frustrated me.
I had cared for Brenda at home, but due to me basically facing carer burnout , we both ended up in hospital in September and were then diagnosed with covid, fortunately without any severe symptoms.. I was discharged after about three weeks, but because of my "breakdown", they initially transferred Brenda to a nursing home, where she received no care whatsoever. In response to a question from my daughter as to why her mum needed 24 hr care, the home manager said she did not know, but "it made them a lot of money". This to me sums up the problem of care being run as a business - at the end of the day, it is all about making a profit.
Fortunately, with the invaluable support of a local community nurse and a social worker, we brought Brenda home in the week before Christmas , where she received the love and support she needed and deserved for the remaining four 4 months of her life.
I want to give any support I can to the campaign to get the Government to review the way people with dementia and their carers are treated.
I steeled myself to watch this, knowing it would bring back memories (well. let's face it, they have never really gone away) and feel just so sad, but at the same time relieved that this is an honest portrayal of how things can be. People really have no idea what it can be like to care for someone with dementia (nor the impact that it can have on processing the grief after the loved one with dementia has died). I really hope it will reach a wide audience. I do agree with what DennyD says about staff training.
Hard hitting? Not in my experience. Where's the aggression, the violence the dangerous behavior? This man seems compliant, calm. The film really only shows a Carer looking for help, at the edge of breakdown. It does show that she is struggling...making it all about her. It does not show what dementia can really look like. Perhaps next time you could make a film that shows a behavioral dementia. Perhaps Frontotemporal dementia and the strength that Carers need to live on the edge of attack, trying to keep themselves and their loved ones safe? The film does not show someone lashing out, fighting, punching kicking screaming in the face of their Carer-and worse when anything becomes a weapon. It does not show the total lack of empathy or understanding or the angry swearing when the Carer tries to dress them or bathe them or get them up out of bed to try and give normality to their day. It doesn't show what the Carer has to do to get them to their appointments beginning with putting on their socks to having that steering wheel whipped out of their hands because your loved ones thinks the way to the hospital is 'over that way!' hand brake pulled on, taking off of seat belt (car seat-belt alarm blaring), anger or non compliance to get out of the car, sit in the wheelchair or walk from the car park, only to arrive a few minutes late which is noted into the letter which arrives 6 weeks later. It doesn't show anything about the diagnosis journey...that's a whole message on it's own! Hard hitting Bah humbug!! It made me cry as I felt sorry for another Carer bowed down by the weight of dementia, who has forgotten who she is and who she was. She just knows that she has to keep going for the love of a man who is no longer the man he used to be. And pleeeeease don't mention the 'living well with dementia'...who the heck came up with that? Aaaaargh!
after my experience the professionals that havent a clue whats involved and having to educate social worker who at remember loss as symptom but nothing else eg. logic, reasoning, reacting. she thought he was just forgetful. and there are different presentations im wondering what they get taught in regards any dementia. i had to explain host mode to a consultant of OPMH and a lady from OPMH who did not grasp anything. all in common is they DONT listen.
I send my sincere condolences on the loss of your wife and I was so sorry to hear that a few days before her passing you received such a letter. You make important salient points in your post. Thank you!...big gentle hugs.
I find people willing to listen but few HEAR ...maybe I have to get into an online course to help me articulate so that those with more qualification than I, truly hear me and then know how to implement the changes that will help.
Sixty bed Surrey care home. Annual fees £70,000. Understaffed - of course. Annual profit £1,600,000. Nice staff but would I have my loved one in there if there was a viable alternative. NO!!!
I'm 59 and diagnosed with young onset dementia back in 2019' .
I'm still in the relatively early stage, this short but hard hitting mini movie is really good. Duevto my dementia ( undiagnosed atvthevtime) , I was forced to leave twojobs in succession so I switched roles with my wife who hadn't worked for 12 years andwas carerv for my heavily dependent disabled son,.
,We have been trying to get daily support for my son.
Unfortunately as theveffecs of my dementia, I am struggling more each week to properly supp him and his social worker has been less than useless.
Currently my biggest fear is that as I further deteriorate, that she needs to support me
Shenow works full time.
It is way past time that the government should start to make a concerted long term effort to ensure that people get the supp theybneed
I'm still in the relatively early stage, this short but hard hitting mini movie is really good. Duevto my dementia ( undiagnosed atvthevtime) , I was forced to leave twojobs in succession so I switched roles with my wife who hadn't worked for 12 years andwas carerv for my heavily dependent disabled son,.
,We have been trying to get daily support for my son.
Unfortunately as theveffecs of my dementia, I am struggling more each week to properly supp him and his social worker has been less than useless.
Currently my biggest fear is that as I further deteriorate, that she needs to support me
Shenow works full time.
It is way past time that the government should start to make a concerted long term effort to ensure that people get the supp theybneed
Exactly.
We can worry about upsetting or frightening people, with the reality of dementia, but denying the truth doesn't change it. Until the wider world understands that it isn't just a slightly forgetful, dotty old dear, research funding won't increase and social care won't change. As I think @canary said, society is happy to judge carers and find them wanting, without understanding the job they expecting us to do.
The profit for the last year for which financial statements have been lodged at companies house, was £1.7 million AFTER all running costs, so pure profit apart from income tax which can be reduced to negligible with a tax advisor. We have a profit centred care system.
