The fightback begins here!

Cazzita

Registered User
May 12, 2018
617
0
My father has lived with dementia for 10 years and is now, age 90, in the later stages.of the disease . In this time I have cared for him and nearly made myself ill whilst looking after family and trying to keep a business going . I had to find a ‘care’ home for him 6 years ago as I could no longer cope. We have had so many issues with the homes . He is now in his 3rd and hopefully final place. In his last ‘Care’ Home he was assaulted by another resident twice, quite violently, and abused by staff . For the last 9 months I have been my father’s voice trying to get some justice for his poor care. He was once a fit and highly intelligent man and doesn’t deserve to be treated like this. We have complained to the home, the CQC , his social worker , the ombudsman’ with little result or recompense for my fathers welfare. The head of the social care/ safeguarding team told me my Dad wouldn’t remember the abuse so not to get upset ........ All this costs money and it is on top of the thousands of pounds a month that my dad has to pay as he is self funding . If he had any other type of illness we would get help with his funding and it would be possible to find support for his poor care. I have spent years trying to get care and help for Dad only to run round in circles . I truly hope the recent publicity brings about a change and others don’t have to suffer as my father and our family have .
He is now in a nursing home where the staff are wonderful and the care is excellent. The fees are now over £5000 a month. I left him today, so frail, hardly able to see, and shouting away in his terribly tortured world. Hopefully with more people speaking out and describing life with dementia and all the issues that arise it will no longer be brushed under the carpet. It must be the most devastating disease that impacts both the person and family and I hope in the near future it gets the support, funding and understanding it deserves.

Unbearably sad and so unfair :(
 

Cazzita

Registered User
May 12, 2018
617
0
Really need these people to walk in carers shoes for 24hours they couldn’t cope for longer!! But can’t see that happening!
The reality of the situation cannot be fully appreciated until experienced. Maybe we should all ask our MPs to stay with us for 24hours to experience the realities faced!

Absolutely! I dreamed that we all took our PWD to Downing Street and left them at the front door! Wonder what they - the government - would do then! x
 

Cazzita

Registered User
May 12, 2018
617
0
Well @DesperateofDevon here is a quick summary of the content. Sounds like plans are being drawn up, but what is in those plans remains to be seen. I am hoping the government take onboard the House of Lords report, anyway heres a quick summary of the response I recieved today.....

Esther McVey replied saying that the Prime Minister will be announcing plans to tackle the issue in the near future and then to respond with my thoughts on those plans. So she didn't really say very much at all.

The Minister of State for Care, Caroline Dinenage, wrote two sides in response, acknowledging the role I do and that such carer roles deserve to be better recognised, but no indication of what she meant by that. Most of the letter was rhetoric that many of us already know about current funding and the selling of family homes to pay for care, so she didn't answer my original raising of the report by the House of Lords on the scandal of social care. The Minister did finish by saying and I qoute:

Dementia is a major health and care challenge of our time, and we are working to improve care and support to make this the best country in the world to live with the condition.
She then went on to say that local authorities have been given £4billion this year as dedicated funding for social care, with a further £410million available for adults and childrens services. But importantly she has given her assurance that the Prime Minister is committed to fixing the problem and proposals will follow in due course.


As you say, it's likely rhetoric. I won't believe anything until I hear it, see it and feel it. There is always hope...
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Just to update - I got a considered response from both my MP and my Mum's MP (AL) about my letter. I had to get my mum to write a letter to AL as AL wouldn't write back to me personally (as I'm not AL's constituent - even though the issues were local to her). I think I managed to embarrass her into responding as I posted my mum's letter on Twitter and Facebook. She offered a meeting but backed out of that as it was scheduled after my mum's house was sold and so she was no longer a constituent.

But at least I got both of them to engage with this.

Andrew Dilnot on Today this morning said that those affected with dementia need to be louder. How can we do this?
I have been asked if Alison Holt from the BBC can come down and film us next week, do not really know how the BBC got my name other than from Carersuk, but I am happy to talk to them - and tell them as it really is, not the sanitised version of dementia.........
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
Really need these people to walk in carers shoes for 24hours they couldn’t cope for longer!! But can’t see that happening!
The reality of the situation cannot be fully appreciated until experienced. Maybe we should all ask our MPs to stay with us for 24hours to experience the realities faced!
I once invited the Devon Director of Social Care to come to my house and do what I did ( this was years ago, when I fostered a lovely lad with cerebral palsy, sho, sadly has passed on). Needless to say, the guy did not take me up on the offer.........
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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I once invited the Devon Director of Social Care to come to my house and do what I did ( this was years ago, when I fostered a lovely lad with cerebral palsy, sho, sadly has passed on). Needless to say, the guy did not take me up on the offer.........

it’s very easy to have an office based opinion- flexible working hours, holiday leave & pay, sick leave, coffee & lunch breaks, etc
Yet none of these apply to carers!
Caring is a job
so basically a carer doesn’t have the same rights as anyone else? And the powers that be are happy with that situation.....

so if you put another person into this working position, you would be breaking EU law & legislation, along with breaching human rights.

Doesn’t seem fair does it?
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
I have been asked if Alison Holt from the BBC can come down and film us next week, do not really know how the BBC got my name other than from Carersuk, but I am happy to talk to them - and tell them as it really is, not the sanitised version of dementia.........

You are that person with vast experience & perspective of the system & it’s failings.
I look forward to reading & seeing this interview.

Good Luck x
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
You are that person with vast experience & perspective of the system & it’s failings.
I look forward to reading & seeing this interview.

Good Luck x
Thank you m'dear. I do have a lot of experience, and it grieves me that I am getting on in years (70) and wish I could make changes happen.
Years ago, on the Isle of Man, I fostered a little girl with cerebral palsy, and got the law changed over there in relation to children with disabilities who were in care. Here I, with others, got a facility in Mid Devon for respite for children with disabilities.
Now, I struggle with the lack of provision for adults - social care in the UK across the decades is horrendous.

I will try my best
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
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Thank you m'dear. I do have a lot of experience, and it grieves me that I am getting on in years (70) and wish I could make changes happen.
Years ago, on the Isle of Man, I fostered a little girl with cerebral palsy, and got the law changed over there in relation to children with disabilities who were in care. Here I, with others, got a facility in Mid Devon for respite for children with disabilities.
Now, I struggle with the lack of provision for adults - social care in the UK across the decades is horrendous.

I will try my best

you are an amazing person, I truly believe things happen for a reason. Mostly I don’t understand that reason but out of every situation some positive element will happen. However large or small.

I look forward to hearing / reading all about the interview. A true advocate for us locally
Xxxxx
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
you are an amazing person, I truly believe things happen for a reason. Mostly I don’t understand that reason but out of every situation some positive element will happen. However large or small.

I look forward to hearing / reading all about the interview. A true advocate for us locally
Xxxxx

Thank you so much - I try, but I am almost at the end of my tether here at home - I will do my utmost and best
 

Cazzita

Registered User
May 12, 2018
617
0
I have been asked if Alison Holt from the BBC can come down and film us next week, do not really know how the BBC got my name other than from Carersuk, but I am happy to talk to them - and tell them as it really is, not the sanitised version of dementia.........

That is brilliant - there is no sanitised version after all. Good for you! Wishing you luck doing the interview and let's hope that many hear your voice and all you say on behalf of the rest of us x
 

Soroptimist

Registered User
Jun 10, 2018
72
0
I have been asked if Alison Holt from the BBC can come down and film us next week, do not really know how the BBC got my name other than from Carersuk, but I am happy to talk to them - and tell them as it really is, not the sanitised version of dementia.........
That's great news @maryjoan, I looked her up and she looks like she knows her stuff. Good luck with it - I wonder what programme she's doing it for.
 

maryjoan

Registered User
Mar 25, 2017
1,634
0
South of the Border
All fallen to bits, I am afraid !! My partner's son did not want his father talked about nor on film on national TV as he has dementia.
I have to respect this, and in a way, I can see his point of view. Shame though.
 

Soroptimist

Registered User
Jun 10, 2018
72
0
All fallen to bits, I am afraid !! My partner's son did not want his father talked about nor on film on national TV as he has dementia.
I have to respect this, and in a way, I can see his point of view. Shame though.
That is a shame. The more this is outed the better. But I can see it could be difficult for your partner's son.
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
All fallen to bits, I am afraid !! My partner's son did not want his father talked about nor on film on national TV as he has dementia.
I have to respect this, and in a way, I can see his point of view. Shame though.
What a shame.Does your partners son help??
 

DesperateofDevon

Registered User
Jul 7, 2019
3,274
0
All fallen to bits, I am afraid !! My partner's son did not want his father talked about nor on film on national TV as he has dementia.
I have to respect this, and in a way, I can see his point of view. Shame though.

I am really sad that your husbands son doesn’t want this interview to go ahead. I’m pleased you have support from him though
X
 

Max68

Registered User
Aug 21, 2018
178
0
Sussex
Something really needs to be done as it affects everyone in a family. Mum as I state on my thread is now in care and we (or she) pays £4000 a month to pay for it. People who aren't aware of dementia are absolutely shocked when they find out how much she pays and as others have said other conditions you don't have to.

But once in care it doesn't get any easier. I didn't work for over a year to take care of mum in her last months at home and because I didn't live there I didn't get a carers allowance just Universal Credit. However of course that means you are meant to look for work 35 hours a week so as well as looking after mum and her affairs both at home and when she went into hospital I had the delightful DWP breathing down my neck!!

Mum entered care a few months ago and I managed to find a job which started at the start of November. However it costs me £250 a month fuel with a 2 hour commute, my council tax has gone up because I am working and I am still obviously mums POA so running two lives whilst working the new job.

After work I try and see mum as much as I can but it's in the evening so she is at her worst and when I get home there is invariably post or emails I have to reply to and most companies have gone home by the time I get back so have no time to phone anyone to sort things out. Plus I live alone so I have no-one I can allocate things to bar my sister who has a special needs child so she has her hands full all day. I am often gulping down egg and chips at 10pm at night before hitting bed to be up for 6.20am the next day.

I am obviously not having time to cook properly, do the household chores etc during the week and spend my weekends catching up "my life" and even after just a month I am exhausted. Flexible working with less money for earlier finishes or only working 4 days rather than 5 would help but you can't ask things like that after only being there a month!!

I am sure I am one of thousands in the same boat where the whole dementia experience destroys the mental state and physical health of not just the person requiring the care but the family members themselves and that doesn't cover the guilt that accompanies, certainly in my case, the awful feeling that I am not seeing mum enough now I am back at work.

The Government either doesn't see this or just ignores it as not their problem.

Sorry for the rant!
 

Lirene

Registered User
Sep 15, 2019
243
0
It is a very sorry state of affairs that 3/4 of the people in this country have absolutely no understanding whatsoever of dementia and many other chronic illnesses that also have dementia-related symptoms.
I am astounded day after day of reading posts on this network of the absolute lack care, understanding and downright abuse, both mental and physical, that our loved ones suffer at the hands of the callous and utterly cruel people who are supposed to be caring for the very vulnerable in our society.
It must stop NOW and we must act accordingly. We must report immediately anything that we deem is unacceptable, however small the incident may be.
Our loved ones with dementia and illness related dementia revert to being childlike in all terms and as such should be protected like children.
We carers protect and care 24/7 and when we, for many reasons, cannot care anymore we have to entrust our Duty of Care to others. However, cruelty and neglect are criminal offences and as such should always be reported.
Please, please everyone be vigilant write things down, take photographs and report everything. Go further if necessary and go to the top, social workers, social services, health care professionals, members of parliament, Prime Minister and Police.
Dementia and related illnesses is a time bomb, carers are running around like headless chickens trying to do their best but attitudes and caring must be put to the forefront I know we are all exhausted with caring and fighting for everything and not all loved ones are exposed to suffering at the hands of others. but some do and we never know what goes on behind closed doors.
My prayers are for all xx