It has to be well in advance (which is not always possible to predict) otherwise social services could view it as 'deliberate deprivation of assets' when you are means tested if you eventually need to go into care.
continuing care fees and costs
- Thread starter iggypop37
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It has to be well in advance (which is not always possible to predict) otherwise social services could view it as 'deliberate deprivation of assets' when you are means tested if you eventually need to go into care.
jaymor
I think Pete probably meant that the person had the intention of eventually leaving the money for the grandchild's future education, but was prevented from doing so as a consequence of needing to pay for dementia care. In other words that grandchild has not been able to benefit. (And didn't necessarily expect it either!)
I have chosen to help my children when they need help of any sort, financial or practical. In fact it's not really a choice, just something a loving parent does automatically. We couldn't give them a lot when they were very young so I feel better for doing it now.
I would also hope that they would inherit something when I am dead too if circumstances allow.
However, until then, it is our money - my husband's and mine. We have earned it, been broke in the early days, economised and saved, with no expensive holidays etc. Now that my husband has died and most of my husband's savings has been spent on care fees, I would expect what remains of our joint assets to be used for paying for my care, should I be in a position to need it. If there is anything left afterwards, I will be delighted for my children.
My bolding
As previously stated my OH was forced to go to a CH. He was self funding as he had 'failed' the CHC checklist. NOT IMPOSSIBLE TO DEAL WITH AT HOME
How do you proposed a lone Carer should/could deal with someone being awake for up to 48 hours at a time. Doubly incontinent ( and smearing the contents of his protection over the walls). Then there was the bathing issue let alone the violence. According to your assessment as to who should/shouldn't be able to cope with a loved one at home that guilt monster should be firmly clinging on to my shoulder. 
I am aware of that. But it can be done and it is an option for those who feel strongly about such matters.
I won't be signing over my house in advance though as I've seen first hand how it can all go horribly wrong and the unforseen consequences. My children are happy to have whatever is left at the end when i don't need it anymore and I will gift them what I can afford in advance. They are more than happy with that.
My bolding
As previously stated my OH was forced to go to a CH. He was self funding as he had 'failed' the CHC checklist. NOT IMPOSSIBLE TO DEAL WITH AT HOME
Lyn T
Sorry to hear of your story (which sadly is all too common, as can been seen on TP) but I was talking about in theory. In line with the 1948 Act, the Coughlan Jugdement etc.but the NHS don't abide by that.
Someone like your husband should not have failed to get CHC. it is yet another of the examples on TP and other forums of the way in which the NHS break the law on this issue with people suffering as a result. The symptoms you describe - making it impossible for him to be cared for at home - warrant CHC funding, but as you say, don't in practice.
It makes my blood boil
, but I feel powerless as what to do about it Lyn T
I would like to add that my father (who does now get CHC but was originally refused) has similar presentation to your husband, although was not incontinent when he was still at home. An episode of violence precipitated his first Mental Health Unit stay during which time he deteriorated but did not get CHC upon discharge, so like your husband, had to pay for his care.
When the dementia home in which he was self-funding could no longer cope with behaviour such as the faeces smearing which he by then had developed, he was further re-assessed (a long process) and is now correctly in receipt of CHC. The NHS unit where he now is have both the staff ratio and expertise to deal with things like faecal smearing, resistance to care etc which an ordinary dementia care home doesn't. From what I can gather, there are not many of these type of units. Where he is is at the other side of the county to my mother but she is happy to get 3 buses each way to visit just because she knows it is the best place for him. There should be more places like this, but with current budgets, it is unlikely to happen, and the consequences will be more stories such as yours.
We should be campaigning for them.
I would like to add that my father (who does now get CHC but was originally refused) has similar presentation to your husband, although was not incontinent when he was still at home. An episode of violence precipitated his first Mental Health Unit stay during which time he deteriorated but did not get CHC upon discharge, so like your husband, had to pay for his care.
When the dementia home in which he was self-funding could no longer cope with behaviour such as the faeces smearing which he by then had developed, he was further re-assessed (a long process) and is now correctly in receipt of CHC. The NHS unit where he now is have both the staff ratio and expertise to deal with things like faecal smearing, resistance to care etc which an ordinary dementia care home doesn't. From what I can gather, there are not many of these type of units. Where he is is at the other side of the county to my mother but she is happy to get 3 buses each way to visit just because she knows it is the best place for him. There should be more places like this, but with current budgets, it is unlikely to happen, and the consequences will be more stories such as yours.
We should be campaigning for them.
My bolding
According to your assessment as to who should/shouldn't be able to cope with a loved one at home that guilt monster should be firmly clinging on to my shoulder.
Lyn
Sorry to keep replying like this, but the more I think about it, the more upset I am that you have misunderstood what I meant. It is also important that anyone in a similar situation knows their rights.
It is not my assessment about who should/shouldn't cope with someone at home. There are laws around it. If someone has relatively low needs which can be dealt with at home, that should be allowed to happen if the parties so desire. Equally, if those needs could be better met in a residential home, through choice, that should happen, and can be means tested by social services under the 1948 Act, if the care is at 'social service level'..*
Your husband's condition was way above this, and should have been dealt with as such, CHC funded, but was not - a very common story, unfortunately.
* If you have the time and inclination, please do google 'Luke Clements CHC' and see his criticism (he is a QC lawyer) of the 2009 DST. It is long (it goes into the whole background of the NHS/social services before explaining how the DST is used to deny what should be free care), but very well written and extremely enlightening to anyone involved in the CHC process. However, it is also very depressing at the same time, when you realise just how much we bear the brunt of it.
It should be compulsory reading for NHS Nurse Assessors!
P.S. Remembering your previous posts, and how they all join up now, I am still amazed at how a residential home managed to cope with your husband's condition as you describe it now! I think it is highly unusual - and commendable - as it is way beyond their remit. And, at least you got the CHC in the end as well.
When someone receives CHC or as in my mum's case section 117 aftercare they keep their pensions and do not contribute at all to any costs. Would it make things fairer if everyone paid towards the hotel costs but the care costs would be free. It would particularly lessen the burden on those who seem to be having to a small fortune if their care needs become great,ie needing one to one care etc. only an idea as it seems so hard to get CHC as it is so expensive, if the hotel,costs were removed it would be more affordable for the NHS, and more could benefit. Also the care homes will be separating the hotel from the care costs under the new care act. Maybe this could be the plan anyway!
I cannot disagree with you on the point you make but that is not what I was saying.
What if those who were going to benefit are not of the age yet to need it and were never expecting it but it was the wish of the person? Once the disease sets in there is no choice.
Me too but again not what I was saying.
KARJO!!!!!
I agree so much, and this what I wrote about in my post #91 (towards the end of what is quite a long post!) -and another couple.
As you say, it is so hard to get CHC (because of the high cost to the NHS to fulfil its duty) so this would be a fair compromise. In fact, we have often thought that we would be willing to contribute to the food costs etc at my father's NHS dementia unit (so good is the care), if that would be one way of ensuring such units can survive. It makes so much sense - NHS pay for the care, and the patient pays 'fair living expenses' as they would if they weren't ill.
As you say, the new Care Act will be doing something a bit like this for those in care homes, once they have paid out about £72,000 I think. But, as you say, it could also be done to enable those presently not getting CHC when they should be, to actually get their care paid for.
Is it too late for us to stand for Parliament and do something?
K + K !!!!!To be serious, it is an important issue to be raised on behalf of all the AD sufferers and others who will need CHC in the future.
I totally agree. Your state pension should go towards hotel costs (as that is what the government says you can live on) and feel it should extend to hospital care over a certain time frame.
Pete
Proof that at least one person understood what you meant!!
And I agree with what you say about inheritance. My parents might want to leave money to me - or they may indeed prefer to leave it to Battersea Dogs' Home! That is their choice. It is not for the state to take it from them to pay for what is NHS treatment. And just because they can't otherwise use it now (as one poster said) doesn't make it acceptable!!!
We can by law be asked to pay for social services level care if we have the means. If someone ends up paying out money in this way, it is sad for them to see it go in this unplanned way, (just as it is unfortunate to be ill in the first place) but it is at least lawful. It is not lawful to charge for NHS level care, and that is the crucial difference. Sad and unlawful.
Thanks for that great advice.
Hindsight is a wonderful thing when it comes to dementia isn't it.
I totally agree. Your state pension should go towards hotel costs (as that is what the government says you can live on) and feel it should extend to hospital care over a certain time frame.
I agree on this too!
I have long thought that hospitals should ask patients who go in for routine operations/having a baby etc (as opposed to those in say Intensive Care) to pay for their meals - as they would at home or would indeed if they spent a day in Outpatients having tests. This is just one of the very many other ways that the NHS could save money which could then be used for patient care.
It frustrates me that the 'powers that be' are not more active in seeking solutions to help meet the changing and growing demands on the NHS n the 21st Century.
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Karjo, Pete (and anyone else interested!)
Just reiterating what I was saying.
As I say, this would be my solution for those needing long-term CHC as many advanced AD sufferers do, but are currently denied it. I would keep the fast track end of life system as it is.
i think we pretty much agree Katek and sorry I seemed to have missed that you had already written similar re "sharing the load" by contributing to hotel costs.
I think the idea of protecting inheritances crops up when really this is not what the argument (if there is one) is about.
I am not the main beneficiary in my mums will but I do have P of A and as such would be duty bound to protect her assetts and if that means making sure CHC is applied for I would do it.(though I actually don't need to as she has section 117 funding). And I too would be cross if this was refused simply because of where she lived,bad record keeping by carers etc etc.
I am also not too sure about self funders having choice, as many would chose not to go into care in the first place, and we now need to quite rightly make sure we are not depriving people of their liberty just because they have dementia.
It really is a very difficult and hearbreaking problem, but I am sure most on here are doing their very best with something that they would never have thought could happen.
I think the idea of protecting inheritances crops up when really this is not what the argument (if there is one) is about.
I am not the main beneficiary in my mums will but I do have P of A and as such would be duty bound to protect her assetts and if that means making sure CHC is applied for I would do it.(though I actually don't need to as she has section 117 funding). And I too would be cross if this was refused simply because of where she lived,bad record keeping by carers etc etc.
I am also not too sure about self funders having choice, as many would chose not to go into care in the first place, and we now need to quite rightly make sure we are not depriving people of their liberty just because they have dementia.
It really is a very difficult and hearbreaking problem, but I am sure most on here are doing their very best with something that they would never have thought could happen.
Yes, the deprivation of liberty aspect is a tricky one with dementia patients. If they have to be sectioned (my father's is my first experience of it), they differ from non-dementia patients (for other mental illness), in that they don't actually know anything about it, yet by law have the right to appeal. In our case it is down to my mother and I as his P of A, and while we realise that it was imposed on him, we know that it is for his own good and have no issue with it.
It is more questionable though, if they are simply 'forced' to go into a care home and then charged for it, as they have no say in the matter - either the placement or the enforced payment.
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