A lifelong friend and me
- Thread starter Palerider
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I completely agree this is a physical illness with a terminal stage, it is not a social care issue or even a mental health issue
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “ 
I certainly would happily lobby about this . It’s a huge injustice .
I certainly would happily lobby about this . It’s a huge injustice .I am happy to add my voice to try & get this disease recognised for what it is. Ironically more people will experience cancer than dementia according to the latest statistics, & the funding for cancer is on another planet compared to the funding for dementia!
Dementia is seen as a disease of the elderly, & ageing population - yet more people are being diagnosed earlier now & it can no longer be thought of as an ageing process.
The attitude towards dementia & how you find your care definitely dictates the quality of care you receive. County councils have homes on a list that will give them preferential rates, so if you are funded by social services you get smaller rooms. ( horrendously I have personal experience of this situation & am gin smacked that in this PC world this is allowed & acceptable practice!)
we were shown around the home, beautiful large rooms downstairs opening onto gardens. Reality a room upstairs half the size - that’s what you get when you are council funded!
mum pays for carers, if she goes away for respite we pay a retainer. If social services pay & mum has respite care we have to reapply if it’s longer than a few days & could lose the care package!!
really couldn’t believe that the hard fought for care package lost because my Mum wanted to visit my Dad who’s in another county as there wasn’t a care home space available in their county on the social services list!!!
So yes I will join you in writing & shouting & telling my parents experiences of dementia & the lack of compassion & care shown by many! x
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “
we need to get ourselves organised! My mums experience led to safeguarding issues being raised & now having sorted that - Dads experiences have raised safeguarding!!! I’m disgusted mostly by the whole charade carers are put through; but I have also met some lovely people who do have a moral conscience & make a big difference. Actually if I’m brutally honest they do their jobs.
Think that says it all....
Agree with you both @Palerider and @DesperateofDevon , have a friend who’s dad very sadly had brain cancer , it’s awful and he is suffering greatly but he has been in a fabulous hospice for 4 months ! They are extremely wealthy but obviously it’s all free and he is supported heavily by Macmillan , meanwhile when you try to access help for dementia it seems the first question is “how much money do you have “
Yes my dad once diagnose with terminal lung cancer was put onto an excellent care pathway and he was well cared for, I couldn't fault any of that service at all, they were amazing. In stark contrast mum is left with a physical illness and no help, and I find that both as a professional and as a member of the society I live in quite sickening to be honest. Its not good enough, not just for my mum but for anyone with this awful physical illness
I’m adopted & my biological Mum had a palliative care team & pain relief packs on stand by. My poor Dad with dementia & other health issues is on Butec patches & oromorph - he has numpties in the care home trying to give him paracetamol instead! It really beggars belief!!
at least now SLT team have red flagged him, but the home are still saying that he doesn’t have issues.......
at least now SLT team have red flagged him, but the home are still saying that he doesn’t have issues.......
We need a national pathway and appropriate teams to deal with people who have dementia, we have to move away from the model we have now, and get something better put into place, its just not acceptable. There is no way I would leave my mum in a CH where dementia experience and training is minimal, I would remove her and bring her home before leaving her to that fate
It isn’t acceptable , it’s scandalous. Some of the stories on here are horrific . Like you say there needs to be big changes and soon . I don’t for one minute expect Boris to do anything about it but just push it in to the long grass again.
I have read this thread from the beginning... it resonates so much
If my mother had cancer she would be scooped into a pathway.
If my mother had cancer, no one would have started any meeting with are you self funding?
If my mother had cancer she would have a named consultant, probably a specialist nurse all funded by the NHS
My mum is self funding. I can’t tell you it is much easier tbh. I have come up against the same struggles with when is the right time, guilt, desire to do the best, worry over how long the money can last (homes are £900 a week), lack of involvement by SW, GP, I don’t have LPOA H&W and therefore no control etc. Professionals usually hear we are self funding and leave. No assistance to discover what her needs are, what support is required, is she safe?
If my mother had cancer she would be scooped into a pathway.
If my mother had cancer, no one would have started any meeting with are you self funding?
If my mother had cancer she would have a named consultant, probably a specialist nurse all funded by the NHS
My mum is self funding. I can’t tell you it is much easier tbh. I have come up against the same struggles with when is the right time, guilt, desire to do the best, worry over how long the money can last (homes are £900 a week), lack of involvement by SW, GP, I don’t have LPOA H&W and therefore no control etc. Professionals usually hear we are self funding and leave. No assistance to discover what her needs are, what support is required, is she safe?
we’ll sign me up folks, I think if we all emailed councillors, MPs, Health minister on the same day, maybe some one might sit up & notice?!?
Yes I empathise, I think alot of what is posted on the forum resonates, so many stories of difficult situations.
My mum will be self funding if she goes into care and the house is sold, but until then I have to rely on the SS as she has few savings left, as she says 'enough to bury her'. I can't assist as what I have left I will need to find somewhere else to live so its a Catch-22.
This journey has been a great personal cost, not just financially but also emotionally and it has worn me down. Constantly having to fight the system, constantly having to shout for mum -its never ending. I can't believe as you to say how people that need professional care are left with no further support, when infact they do need it -self funding or not.
This was the response I got from the Minister for Social Care in September this year:
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.
It will be interesting to see what she means by this....
Just catching up with your thread @Palerider ...I heartily agree with everything that’s been said and yes it’s very hard and soul destroying I sometimes wonder if I’m going down the same road as my oh this disease drags the carer (( and family )) into its web.That is why as carers we all need help from the powers that be that put every obstacle in our way so as not to have pay up for decent care. I understand the LA all over the country have little money but sadly that does not help any of us ..Phew !!!!that feels better !!!! Rant over
I hope you get the help you so clearly need and soon ..take care A x
I hope you get the help you so clearly need and soon ..take care A x
I’m fairly irritated that now my mum has been declared end stage and we’ve been given 2 months I’ve been contacted by care support worker and the NHS has supplied 3 months worth of incontinence products. We have requested both much earlier on and been dismissed or ignored. I think the CSW will offer me respite...it’s a joke.
Last November our case was considered urgent. I have dealt with temporary Case Workers and should have a visit from a long term one on Monday.
Our daughter emailed MP about a week ago, a reply was received from an assistant who asked for more details.
My daughter gave me a copy and said I could pursue if I wished.
I composed a email explaining the present situation and past history.
I feel it is important we take every chance possible because every time we loosen a brick in the wall it is important for everyone.
Remember the Berlin Wall? When it was built it seemed invincible then suddenly it fell.
We must keep chipping away, it is all so unjust.
Our daughter emailed MP about a week ago, a reply was received from an assistant who asked for more details.
My daughter gave me a copy and said I could pursue if I wished.
I composed a email explaining the present situation and past history.
I feel it is important we take every chance possible because every time we loosen a brick in the wall it is important for everyone.
Remember the Berlin Wall? When it was built it seemed invincible then suddenly it fell.
We must keep chipping away, it is all so unjust.
Thanks @AliceA for a very meaningful statement.
I have had to write protesting at what little there is here in terms of care for people who live in rural areas and fight to get mum home carer visits. I have since written a number of letters about our situation to mums MP and I Managed to get our MP to lobby the Minister for Social Care on the House of Lords Report on the scandal of social care. I have since had a response to that, in which most of the letter contained rhetoric that most of us on this forum already know.
I am now about to write my fifth letter back to our MP and raise these problems yet again. And @AliceA I will keep on chipping away, I will keep on and on until I hear about a reform bill
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