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sicut animam suam : 'it's just life'

Lone Wolf

Registered User
Sep 20, 2020
133
0
On this forum there is a never ending flow of distressed accounts of individuals trying their utmost without any (or grossly inadequate) support to care for their loved one as dementia inevitably progresses and takes its toll. Unfortunately it is is only those of us who have been in this situation that really understand that the impact of dementia is just as dire on that caring individual. But in this era of "me too", amongst all this anguish and heartbreak, it is inspirational to read just how many people are doing, and will do, against all the ceaseless obstacles, their absolute utmost for their loved one throughout the dementia journey.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
On this forum there is a never ending flow of distressed accounts of individuals trying their utmost without any (or grossly inadequate) support to care for their loved one as dementia inevitably progresses and takes its toll. Unfortunately it is is only those of us who have been in this situation that really understand that the impact of dementia is just as dire on that caring individual. But in this era of "me too", amongst all this anguish and heartbreak, it is inspirational to read just how many people are doing, and will do, against all the ceaseless obstacles, their absolute utmost for their loved one throughout the dementia journey.
Thanks I think you have expressed something there many of us try to do on a daily basis, let alone the privelage of being able to look back.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Well I have the outcome of mums CHC funding they have said she is not eligible -I am not surprised by this, but of course its now pressure to recommence mums payments and also to appeal the decision. Its never ending...
 

nitram

Registered User
Apr 6, 2011
22,324
0
North Manchester
An appeal primarily based on failure to follow due process with incorrect assessment thrown in for good measure is often the best way to proceed.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
An appeal primarily based on failure to follow due process with incorrect assessment thrown in for good measure is often the best way to proceed.
Thanks Nitram, the whole process has been rushed because of the deadline on 31st March, and the wording of the letter is not quite in line with what the guidance says:

The CCG have reviewed the DST, including the application of the four key characteristics (nature, intensity, complexity and unpredictability) in order to determine whether, in combination or alone, a primary health has been established. The CCG accept the recommendation and are satisfied that the totality of these needs are not considered to be over and above what local authority social services are under a duty to provide or of a nature beyond which a local authority could be expected to provide.
This as far as I am aware is not an accurate representation of the assessment process, because it is not what a local authority can provide it is about a primary health care need being established apart from it. Anyway I am in the process of seeking advice.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
might help
Thanks, I can't help feeling now the emergency funding has come to end many people nationally will be finding this result. Anyway the only thing I can do is appeal, but I'm not doing it on my own....I'm now at a stage where I do feel completely done in with the whole journey, which has been one of constant fights to get mum the help she needs.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Well I can't deny I am quite stressed, purely because I just want get everything sorted finally and then let everything tick over.

I have spoken with the care home admin and there is already dispute between the two local authorities as mum was moved out of area to find an appropriate EMI unit. Anyway the very nice chap who I have dealt with when mum first started this journey is on leave. However after some digging I did find some useful information around disputes between LA's, I suspect this will be resolved when the key person returns from leave. Just in case anyone else is experiencing this here's the guidance under Coronavirus Easements 2020:


It specifically states:

continuity of Care arrangements do not apply when a person with eligible needs for Care and Support lacks mental capacity to make a decision about where they live and the Local Authority in which they are ordinarily resident places them outside of their local area. This is because the Local Authority placing them remains responsible for meeting their needs before, during and after the move.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Well I have just found out, with Covid-19 emergency funding ending on 31st march there are thousands of people now faced with non-eligible reviews. I have contacted the guys @Shedrech posted info about, but they are now so busy it will be 3-4 weeks before they can take on my case
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
I just really think that after all that I have to do and the stress it brings that by now aft over a year of the system accepting my mum needs 24/7 care that I shouldn't still be here having to constantly resolve issues. I know I will do what I have to do, but seriously I can understand why some people are driven to despair. Its just not right that we are constantly kept on our toes, when all we want to do is make sure our PWD is cared for and comes to a good end in their life. I'm feeling frustrated, angry and to be honest utterly frazzled. How I move forward I don't know, but I don't have any choice -there is no one else to bark loudly enough for mum
 

Lone Wolf

Registered User
Sep 20, 2020
133
0
@Palerider, it is a long lonely and relentless battle, with a continual flow of obstacles, just to try and obtain an acceptable level of care for a loved one with advanced dementia. The system and too many of those working in it are completely devoid of any empathy whatsoever.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Today I went to see mum, who I was glad to see but she looks ravaged by the disease, sat in a wheel chair and inanimate until I managed get her attention. I took a Costa in a flask and piured it back in the cup when I got to see her and she again had two of her fave slices of raspberry and almond cake. She dosed on and off and most of the conversation was difficult as everything is jumbled. I played her some Seekers music and she sang along and there was a mixed reaction, happy but also a sadness, anyway on that I left having seen mums spirit emerge for a short while.

20210414_122152.jpg
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
I have taken advice today and have instructed a legal firm specialising in CHC funding. I can't do this on my own anymore.
 
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anxious annie

Registered User
Jan 2, 2019
801
0
Sorry to hear of your troubles @Palerider . Take care of yourself, it's all such a struggle to get what is right for those in care. It shouldn't have to be such a battle.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,877
0
Your mum is looking very stylish and well cared for. Probably a good idea about hiring the law firm. Often things move in the right direction when the right legal language is used.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Your mum is looking very stylish and well cared for. Probably a good idea about hiring the law firm. Often things move in the right direction when the right legal language is used.
Thanks @Sarasa -mum is well cared for -as much as anyone could expect in an EMI unit. I do think its time they allowed the hairdresser in though -even if mum can't tolerate a perm as she use to have, at least a cut would go a long way.

I generally tend to avoid the services of legal firms because they are costly, and this one is no expception to the rule, but they specialise in this aspect of care and sometimes we have to take a step back and let someone else who knows the system take over. This sin't about mums needs, as often is the case, its about the agenda CCG's have and how the CHC framework is downplayed, especially in those with dementia. Anyway the deed is done and it will take a few weeks.....
 

Bikerbeth

Registered User
Feb 11, 2019
1,940
0
Bedford
Mum’s home has decided that the hairdresser can go in from next week, however my poor Mum will be in quarantine for another 2 weeks. I only mention on the basis that maybe more will start to open up a bit.
You have been through so much that it does seem sensible to let ‘someone’ else fight this battle.
 

Palerider

Registered User
Aug 9, 2015
2,467
0
North West
Today a flurry of releases of documents signed by me as LPA. Its quite hard hitting because things come up you'd forgetten existed.

I wonder if Mr Braithwaite still exists?