Cure the Care System: our new short film

[canary]

Im not sure that it is intended as scare tactics @AwayWithTheFairies . I saw it as showing what dementia (especially advanced dementia) is really like. The general public seems to just see dementia as being forgetful and is unaware of the half of it. If people are more aware there will be more funding for research and also, perhaps we wont come in for as much stick when our person with dementia needs respite and/or placement. The general perception is that we aught to look after them right up to end and that just heaps all the more guilt onto us when we cant.

 

[JC51]

Maybe a documentary featuring six months or more of caring for a loved one at home would be better. Hidden cameras and microphones could be used, as they do in other stupid reality programmes. It needs to show what the day to day effect of being one to one with a PWD is like, no editing, just the bare facts. I don't think anyone in TV would have the bottle to do it.
Show it as it is for us in reality, not a staged advert.

 

[MaryMac54]

As mentioned above, here's the video. The actress herself, Kate Dickie, has personal experience of dementia and wanted to be part of telling this story.

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What do you think?

We wanted to give you a space to share your thoughts on the film. Does it reflect your own experience? We'd like to hear what you think, and your honest feedback would be really valuable.

Watching this just drained me in a couple of minutes. The impact on unpaid carers is immense and nothing get's done until there is a crisis and a carer's idea of a crisis and the authorities idea of a crisis don't match. Carers are simply ignored, worn out, sleep-deprived, have no freedom, anxious, feeling guilty and feel helpless. They have little energy left to deal with the authorities who it seems take full advantage of this. It is budget first and people second. The Care Act is so woolly! It should be that when someone gets a diagnosis of Dementia they should and their carers should be in the system and looked after thus avoiding crisis situations. Unfortunately, our current PM only gives it lip service. Actions speak louder than words and there is a deathly silence. My husband went into care last November and I am still recovering.

 

[Lone Wolf]

If the care system provided more support to at home carers from the start and for the duration of their dementia experience, then I am sure that many more would choose to keep their PWD at home rather than have almost no alternative to placing them in a care home. Having seen the quality of care provided in even a good care home, I certainly would have chosen to keep my PWD at home with appropriate assistance from the care system. I know that not everyone would be in a position to do this but with the right support many more would be than is currently the case. The biggest issue for many at home carers is the total lack of support, more so than the (difficult) issues of caring for someone with dementia. The willingness to continue caring at home is there, if only the support was available. And surely the overall costs of care are so much cheaper to society if a PWD can remain at home.

 

[AwayWithTheFairies]

No one seems to be able to understand a broken brain and society hopes if they ignore it, the issue will disappear. Instead the problem is getting bigger and bigger!

 

[Seaholly]

The message to MPs is really incredibly simple - but I've dumbed it down a bit more, just for them!

1) We are not waving: we are drowning
2) We are not frittering away the hours in the company of slightly dotty old dears: we are providing hands-on care to people with a serious and terminal illness, with no qualifications, prior experience or regard for our own health
3) We don't want 'support' or 'signposting': we want real, tangible help and clear, practical advice
4) We don't actually give a flying fig about which party 'broke' the care system: we just wan to know who will fix it.

Is that clear enough?

 

[kindred]

The message to MPs is really incredibly simple - but I've dumbed it down a bit more, just for them!

1) We are not waving: we are drowning
2) We are not frittering away the hours in the company of slightly dotty old dears: we are providing hands-on care to people with a serious and terminal illness, with no qualifications, prior experience or regard for our own health
3) We don't want 'support' or 'signposting': we want real, tangible help and clear, practical advice
4) We don't actually give a flying fig about which party 'broke' the care system: we just wan to know who will fix it.

Is that clear enough? Brilliant!! I would like us ready to list what help we want too, including a named person who will be accessible to us and help to arrange support, day care, respite, care home. Someone who will coordinate services so that support at home is viable, not an endless series of battles and disappointments. Let’s Add to this …. Kindred

 

[Starbright]

This is so good @Seaholly @kindred ...would a petition to Government be viable just in the way you have posted. Thousands of members on here ...maybe someone in the government would sit up and take notice.
A ?
Just a thought I hope it’s ok to post this admin

 

[Starbright]

This is so good @Seaholly @kindred ...would a petition to Government be viable just in the way you have posted. Thousands of members on here ...maybe someone in the government would sit up and take notice.
A ?
Just a thought I hope it’s ok to post this admin

 

[kindred]

This is so good @Seaholly @kindred ...would a petition to Government be viable just in the way you have posted. Thousands of members on here ...maybe someone in the government would sit up and take notice.
A ?
Just a thought I hope it’s ok to post this admin

Great! I think it’s so important to be specific about what will help. Kindredx

 

[Starbright]

I take your point completely. But as for misery porn. No, in fact, my life as a carer was way way worse than what is shown, Kindred

I followed your posts when you were seriously struggling @kindred you were wonderful.
Im over 5 years into my husbands Alz/VD and a couple of years before that getting a diagnosis, he was clever at hiding his symptoms for short periods.
like you although good and maybe a start letting people know , the film never showed the frustration / anger/ aggression etc that is also part of this vilest of illnesses.
A?

 

[Shedrech]

Sign our petition to #CureTheCareSystem​

Alzheimers Society campaigns -

 

[Seaholly]

I've signed that one, but I'd be delighted anyone wanted to join me and, like Kindred, expand on it and then I could send it to my MP and County and Local Councillors too - as could anyone else who wanted to!
It needs to come 'straight from the horse's mouth' and avoid buzz-words and nebulous requests.
If enough folk want me to collate and share, I will
(especially after dealing with a UTI 'from Hell today with my PWD; not actually knowing for certain whether it was a UTI, or End of Life; ringing the GP and being told by a very smug receptionist that surgeries were all booked and could I ring again tomorrow! When I explained the problem, I was asked 'what sort of resolution are you looking for? What would you like me to offer you?' Honestly - it took all I had not to scream, " a trip to Blackpool and a bl***y donkey ride - obvioulsy!" What I do know is, there were millions of other Sea Hollies all over the world today, having exactly the same 'moment'

 

[Shedrech]

People are telling it as it is here:​

Why Government must Cure the Care System​

We can’t cure dementia yet. But the Government can cure the care system.

Behind every signature there's a story, share yours to show the impact of the broken care system on everyday lives across the UK, and what you want to see changed.

Why Government must Cure the Care System

<p>We can’t cure dementia yet. But the Government can cure the care system.</p><p>Behind every signature there's a story, share yours to show the impact of the broken care system on everyday lives across the UK, and what you want to see changed.</p><p>#CureTheCareSystem</p>

alzheimersociety.memorypage.org

The link goes to pages of people's own testimonies

 

[kindred]

I followed your posts when you were seriously struggling @kindred you were wonderful.
Im over 5 years into my husbands Alz/VD and a couple of years before that getting a diagnosis, he was clever at hiding his symptoms for short periods.
like you although good and maybe a start letting people know , the film never showed the frustration / anger/ aggression etc that is also part of this vilest of illnesses.
A?

Oh thank you with all heart, starbright, thank you. I volunteer now at the nursing home where Keith died. How are you doing?
Love and best, Geraldinexxx

 

[Birdseed]

As mentioned above, here's the video. The actress herself, Kate Dickie, has personal experience of dementia and wanted to be part of telling this story.

---

What do you think?

We wanted to give you a space to share your thoughts on the film. Does it reflect your own experience? We'd like to hear what you think, and your honest feedback would be really valuable.

 

[Birdseed]

The film is honest about how situations and feelings escalate. Carers honestly believe they will be zblectocope, until the point when they can't, and it's almost as if you have to plan the request for help. On the 3rd occasion that I called the ambulance when my husband was unable to get up, I was in tears as I knew it couldn't continue like that. He looked at me with a question in his eyes and reached for my hand. Even with Carers coming in it was difficult. People may know a lot about dementia, but until you are a Carer you don't understand how difficult it is, and how your emotions are tied up in it too.

 

[yacht66]

As mentioned above, here's the video. The actress herself, Kate Dickie, has personal experience of dementia and wanted to be part of telling this story.

---

What do you think?

We wanted to give you a space to share your thoughts on the film. Does it reflect your own experience? We'd like to hear what you think, and your honest feedback would be really valuable.

Having helped to look after my father-in-law and mother-in-law - both of whom had Alzheimer’s and vascular dementia- I can relate to the overwhelming feelings of tiredness and frustration shown in the film, particularly when seeking help from the Social Care system. After five years of trying to look after them in their own home, we finally had to make the difficult decision to move them into a Care Home. We were lucky in the sense that the Care Home we chose has been good. With both parents in the Care Home, their joint fees of £7.5K per month soon exhausted their cash savings. We had no choice but to put their house up for sale which because of Covid took six months to sell - during which time we were extremely worried that they would exhaust their savings before we could sell their house. In the event that this happened before we managed to sell their house, we explored with our local authority the ‘deferred payment’ facility whereby we would have in effect a loan from the local authority until such time as we sold the house as a stop gap measure. This took an inordinate amount of time and many phone calls and emails to try to sort out. Our experience was that Social Care staff didn’t know about the facility; often sent us out-dated information and were reluctant to award it. They couldn’t get their heads around the fact that it was for both my parents-in-law and insisted that they would each have to pay the £650 application fee for a deferred payment facility even though they had shared finances and obviously lived in the same house. The interest rate would have been quite high - well above the current rate of interest . So we were very relieved that in the end we didn’t have to pursue this option as we managed to sell their house just as their cash savings were almost exhausted. I recently wrote to my MP as I was so angry that yet again the Govt. had chosen to defer their plans for Social Care. He forwarded it on to the Dept of Health & Social Care and I got a very anodyne reply from Helen Whately, the Minister for Care, saying yet again ‘that the Govt. was committed to reform the social care system and that nobody needing care should be forced to sell their home to pay for it.’ No firm date as to when this may happen other than a vague statement of bringing proposals forward sometime this year.‘ Sounds familiar doesn’t it because it’s what successive Govt.s have been saying for at least the last 15 years. The social, mental and health considerations for people with dementia and their Carers is well known by those who have the misfortune to have this awful disease or be involved in their care, but the financial worries is perhaps less well documented. For those people who do not own their own house or have any other asset - it’s bad because you are totally reliant on your local authority and have virtually no choice about where you may end up. Equally however, if you do own your own house, whilst you may have more choice (within reason) you are expected to use all of your own assets and family members are put in the invidious position of having to adopt the role of actuary when trying to work out how many years of care your family member can afford. And then what- when the money runs out? The prospect of couples being split up and having to move to different care homes chosen by the local authority. As a family, we believe that we should contribute a fair amount towards our own care but this current system is completely broken. Apologies for the length of this comment but this is just a snapshot of what we have had to deal with - I could go on with all the other horrible things you have to face when trying to deal with dementia such as trying to persuade someone to wash and change their clothes etc. when any mention of this is met with belligerence, but I wanted to highlight the financial worries that you also have to deal with.

 

[white eagle]

As mentioned above, here's the video. The actress herself, Kate Dickie, has personal experience of dementia and wanted to be part of telling this story.

---

What do you think?

We wanted to give you a space to share your thoughts on the film. Does it reflect your own experience? We'd like to hear what you think, and your honest feedback would be really valuable.

 

[white eagle]

Very upsetting but shows the reality of caring for a person with dementia.