Predictability of Alzheimers

Mariella

Registered User
Feb 27, 2013
17
Hello everyone - I'm new to the site.
My mother was diagnosed and placed into care 10 years ago now and we can no longer fund her care.
She has houses, which I have now started to sell - however I am still trying to get some state funding under the Continuing Health Care act. I have an appointment for an assessment in October, however the Home Manager keeps saying that in my mums case the disease has progressed with 'predictability' which seems to be a word used to suggest we won't be able to receive any continuing care funding. I understand her Social needs comes under the fact she is doubly incontinent, cannot feed herself, bath herself, see, hear or any of these things, but apparently that is not enough. I need to have evidence that she has had an infection or needs medical intervention of some kind. Over the last ten years we've paid over £400,000 privately for her care. The Public Guardian Office and Court of Protection have done nothing to help, just drain our resources and time, and I have very little faith in the state. I wish my mum had died with grace and dignity intact - but she didn't. I hate myself for saying that.

I'd love to know if there is anyone else currently trying to get Continuing Health Care. I originally made my claim before September 2013, so hope to put in a back dated claim and recoup some of our costs, it would be great to have a dialogue with others in the same situation.

Any help would be greatly appreciated. We all need support while our parents live in this condition.

Mariella
 

Kevinl

Registered User
Aug 24, 2013
4,774
Salford
Hi Mariella
Below is a link to the CRAC regulations on the government website, these rules will determine whether or not funding is available. It's 118 pages but you can pick out the relavent bits fairly easily. One thing to do is print off the front page and put it in a clear plastic folder with 117 blank sheets of paper and take it to the meeting and have it prominently in front on the table of you so it looks like your know your stuff:)
As you refer to her having houses (plural) to sell you she may not be seen as in need of financial help, however, if she is entitled to it she should get it she's paid her taxes like the rest of us.
Good luck
K

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/301250/CRAG_34_April_2014.pdf
 

Mariella

Registered User
Feb 27, 2013
17
Hi K

This is great! Thanks for getting back to me. My mother was a landlord so we have more than one property - but even if we sell the most expensive, that will only fund 3 more years of care at £43,000 a year! And yes, she's paid her taxes and should get funding if its applicable. I will definitely look into this and like the idea of the top sheet on display in the meeting!

I will let you know how I get on,
Mariella
 

PeggySmith

Registered User
Apr 16, 2012
1,683
BANES
Two things. Does she get Funded Nursing Care and Attendance Allowance? Those knock over £200 a week off the bill.

Secondly, we've applied for CHC funding and have had a meeting at the NH with the assessor. We are paying an advocate to support us. At first, the assessor was just going to assess for continued FNC but our lady forced her to do the CHC assessment. The report arrived this morning for us to comment on. I'm don't know whether or not your Mum will qualify just as I don't know whether or not MIL will get it either but what you've been told by the CH manager is not correct at all.
 

cragmaid

Registered User
Oct 18, 2010
7,942
North East England
Mariella, I have applied for CHC for my Mum...she is similar to your Mum in some ways with varying heath needs including an optical cancer which has caused her to become blind. She is doubly incontinent, falls, is incapeable of weight bearing or walking unaided...the list goes on. However I am not the least confident that she will receive any funding.
Her care home is slightly less financially demanding than your mother's, however we have had to sell her only property to fund her care and by my reckoning she has about 3 years left in the pot. Mum is 87.
I have no way of knowing how long she has left....to be honest, to die soon would be kindest for her. She worries constantly about what she will do when she has no money, and is going through a spell of asking each visit if she has any money left.

I realise that what I am about to say is controversial, and yes I do think there ought to be a fair and just way found to fund care, however at the moment that way is not evident and if your or my mother fails to qualify for state funding, then I'm sorry but property must be sold or families must find the means if they/we wish our loved ones to remain in the Care Homes chosen to provide the best care possible.
My Mum worked and paid taxes. She only had a property to sell because her youngest daughter, with whom she lived, died and bequeathed the property to her. If she had not had this home to sell, Mum would have been a resident of a council run care home which recently went bust and closed.

I think that your Mum is very lucky to have someone caring for her needs and looking after her assets, but unless the funding comes from the state ( at a cost to some other service) then you will have to sell her property to fund her care.
 

Mariella

Registered User
Feb 27, 2013
17
Hi PeggySmith
We don't get Funded Nursing Care or Attendance Allowance. I also know that she has an under active Thyroid - which could be construed as medical? Lets keep each other updated on the assessments to see if we can help each other. Many thanks for your reply
 

PeggySmith

Registered User
Apr 16, 2012
1,683
BANES
She should certainly get AA and I can't see why she doesn't get FNC unless she's in a residential care home with access to GP & nursing services locally.

Yes, I'll keep you updated but may not be entirely articulate as I haven't really got a clue as to what's going on:D
 

PeggySmith

Registered User
Apr 16, 2012
1,683
BANES
I realise that what I am about to say is controversial, and yes I do think there ought to be a fair and just way found to fund care, however at the moment that way is not evident and if your or my mother fails to qualify for state funding, then I'm sorry but property must be sold or families must find the means if they/we wish our loved ones to remain in the Care Homes chosen to provide the best care possible. My Mum worked and paid taxes.
Cragmaid, I don't care about the money at all (not any of my business anyway). BUT we were bullied into sending MIL to a nursing home and are constantly subsidising them. The whole system is a rubbish nightmare and I just lost it one day and contacted this company to have a moan. The truth is that my MIL has a life-limiting illness and neither the private nor the public sector are making her final months any easier for her or for us. So there! Rant over.

PS After 2 years, it's a bit late to "protect the inheritance".
 

Saffie

Registered User
Mar 26, 2011
22,505
Near Southampton
The report arrived this morning for us to comment on. I'm don't know whether or not your Mum will qualify just as I don't know whether or not MIL will get it either but what you've been told by the CH manager is not correct at all.
Unpredicability features very highly where CHC is concerned, so the Manager was actually quite correct in that remark. It is one of the aspects which one tries to present when applying for CHC funding and can make a big difference. It's why behavioural problems can so often warrant it.

I'm afraid that an underactive thyroid will not make any difference and will certainly not alone warrant the funding. Many people suffer from this, my own daughter and sister included. My husband had multiple health problems but was refused it.
 

PeggySmith

Registered User
Apr 16, 2012
1,683
BANES
Thanks for that correction Saffie - I really don't have a clue. I just checked and it says: "Unpredictability: This describes the degree to which needs fluctuate, creating challenges in managing them. It also relates to the level of risk to the person's health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, or unstable or rapidly deteriorating condition. Each of these characteristics may, in combination or alone, demonstrate a primary health need....."
 

Mariella

Registered User
Feb 27, 2013
17
Hi Cragmaid
I don't think what you're saying is controversial. My mother was taken into care when she was 73. Her decline was so rapid that she went from being a screaming, paranoid although still fairly capable person to a zombie within 2 years. Im still not sure if it wasn't the medication they gave her at that time... I think a lot has changed about what we know about this illness in the last ten years. But now I have a zombie to visit - she doesn't know who I am, doesn't know that she has any grandchildren - or that her life savings and now investments that she worked so hard to pass on to me and my brother have actually gone into funding her care. The woman I visit isnt my mother - its what's left of her. I still rather treasure the memory of the person she was. We were told she wouldn't last more than 5 years, but here I am 10 years now and still no end - although thankfully she is fading, but very very slowly.
I can only hope that this isn't a genetic disease, and if it is, that I can take my own life rather than know my children could see me disintegrate the way I've watched my mother. I don't think that's controversial. I think its love.
Mariella
 

Mariella

Registered User
Feb 27, 2013
17
Peggy - thank you so much for this. Its essential to me to have anything I can at this stage. Im going to read the "Charging for Residential Accommodation Guide" over the next few days - what fun!!!

Please keep posting everyone - what we talk about doesn't just help us, it helps everyone:)
 

Mariella

Registered User
Feb 27, 2013
17
CRAG assessment/Continuing Health Care Funding

Just thought I'd update you all with my mums assessment.

First of all, thank you to everyone who gave me advice on what to expect during the assessment. There was also an amazing piece on Inside Matters on BBC Radio 4 recently, which mentioned a company called Beacon who's advice I also took, especially the quick tick list for what to ask during an assessment using the Decision Support Tool

Despite my mother having had various infections over the years, and the fact she now has an under active thyroid gland and is so bed ridden she does suffer from sores and so needs barrier creams - it seems the nurse (CCG) carrying out the assessment was most concerned that she wasn't eating. My mother hasn't been eating well for years (all her teeth have ground down to nothing, and she needs assistance in eating babyhood daily) and now she is in the late stages of the disease, it seems her body doesn't register hunger anymore. She's lost about a stone in the last three months, and this more than anything was what appeared to be of most concern to the nurse giving the assessment.

Im amazed at how many things didn't really seem to be of importance but was also rather concerned that the records kept at the home weren't up to date. My mother is currently taking some antibiotics but there was no sign of this on the medical records. The nurse also suggested that as my mother does not communicate in anyway, and is not aggressive or dangerous, this also puts her at quite a low level in terms of getting funding. She mentioned that had my mother been sectioned she would be sure to get Continuing Health Care. My mother was actually sectioned before she went to the home - it was as a result of whatever drugs she was given in the hospital at that time that she never spoke again!

Without offering any commitment, the nurse who assessed my mum did seem to think we should qualify for funding - but I will have to wait another two weeks for an official verdict!

Will keep anyone interested updated!
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
Hi Mariella

So sorry to read that your Mum is so poorly. I don't know a lot about Health Annuities- but it may be worth looking into buying one for your Mum's care. Others have gone down this route so I hope the people who have will pop in and give advice. You could try to search on the Forum for details. If you don't get CHC funding it may be a more cost effective route to take.

Re sectioning-sorry that doesn't lead to CHC. My Husband has been sectioned 5 times in 8 1/2 years-but they were all section 2. If you are placed on a section 3 then you get funding by the LA under section 117 aftercare. (I hope that's all correct).

My Husband has got CHC funding (awarded last xmas) . He scored very highly in behaviour as he was very unpredictable (no triggers for violence) and intensity. He does have Bipolar which rather makes the mix with his AD very complicated. Pete can't communicate either so carers have to anticipate all of his needs.

The nurse was correct in being concerned about weight loss-one of the domains refers to nutrition. Pete scores high in this because he has lost loads of weight since january even though he eats everything. He also has to be fed and believe me it takes an age to feed him (more points) because he tends to fall asleep.

I won't go into the other domains but I have to say that up to date records are an absolute plus for getting CHC. Pete's CH keep exemplary records. The CCG/CHC couldn't really argue with the records/evidence in front of them

Good luck to you and PeggySmith and everyone else who are trying to see the wood through the trees regarding CHC.

Nightmare in my opinion

Take care

Lyn T
 

Mariella

Registered User
Feb 27, 2013
17
We got CHC funding!!

I found out yesterday, although have yet to have an official letter in front of me that my mums health care bill will now be funded completely by the NHS. I'm so pleased! This means we no longer have to look for £43K a year. I am worried that this may only last 12 months and then will change following a further assessment, but the nurse did tell me "i don't think your mum is likely to get any better" which although is painful to hear, is very true.

A lot of people are now telling me I should try and get this payment back dated, as I originally put a claim in 2012 - but its taken this long for someone to come out and assess my mother. Im going to look into this. Lets face it, my mother would rather any money possible would go to her family than the Court of Protection office - a useless bunch in my opinion.

Once again - many thanks to all on this site. I don't think I would have had the confidence to go through with this if it wasn't for you guys.
 

mrsapple

Registered User
Feb 4, 2013
49
Northumberland
My mum was granted CHC in March, but has had two reviews since that date - the latest one just last week, so we are still waiting for the decision. Despite the fact that mum is clearly much worse both mentally and physically since March, it feels as though the CCG is determined to find a way to get the CHC off her (she has been self funding for six and a half years - almost all of the proceeds of the sale of her house have now gone). Just makes me feel angry that despite all her many problems they somehow feel she is not entitled to any help in the last stages of this dreadful disease.
 

Mariella

Registered User
Feb 27, 2013
17
Oh dear - that doesn't sound very optimistic. I had a feeling that it wasn't just going to be a case of 'yes, we'll pay from now on'. I haven't actually had a letter yet either - just the say so of the nurse who carried out the assessment. Maybe I should put that bubbly back in the fridge?