Dad and Lewy Body

[eileenread]

I orginally began a thread on my FIL earlier this year under the title "Impacting on our Lives".

Anyone who read that thread will recall the difficulty we were having in getting Dad assessed. At that time with the help of information on the AS website I concluded from dad's symptoms that he was suffering from Lewy Body Dementia.

Dad helped us to get an assessment for him by taking matters in his own hands. He was having regular hallucinations and on 5th August he telephoned the police to inform them that he had intruders, of course he didnt, but they in turn took the decision to call for an ambulance. We visited dad in A&E where he was all ready to go home. However, after informing the doctor that his hallucinations seemed to start after a fall he had a year previous they decided to keep him overnight and do a CT Scan. We were told the next day that the scan showed no abnormalities ie tumors and that they would be discharging him within 48hrs. What a turn around we arrived next day to find he had been admitted to a Geriatric Ward. Things really flew from there. Dad became very violent lost contact with reality and was eventually placed on quetapine to contol his psychotic behaviour. Doctors were reluctant to use the word Dementia but eventually said he certainly had some dementia going on. After six weeks they said he was mentally incapable of making any decisions for himself and that they had diagnosed Lewy Body Dementia we finally had a diagnosis.

Our troubles then were just beginning. The minute Social Services realised he was self funding that was it. We were told that they were unable to offer us any further assistance and that everything was our responsbility from now on. They also made a point of saying they wanted to discharge him asap.

Needless to say Dad did not have an LPA and doctors deemed him incapable of signing one, so our only other option was the Court of Protection. To pay for his home we have to be able to access his finances. That is a nightmare in itself and the whole process could take 5 months.

We were lucky enough to secure a room (the last one available) for him in a very nice Care Home but to secure this room we have had to take the responsibilty of payment of his fees until we get a green light from the Court of Protection, this is our life savings were are having to use, does anybody care do they heck. I know we will be able to claim this back from his funds eventually but what happens if you dont have funds to help a family member in a similar situation.

Dad moves in tomorrow so fingers crossed we are hoping he will settle in so we can get some normality back into our lives.

Until you are placed in this situation as most of you are you are not aware of what is going on if it wasnt for websites like this and others we would not have learnt half of what we have.

I think I know more about Lewy Body Dementia than some of the medical staff I have spoken to.

Sorry if I am waffling on but just had to get it off my chest.

 

[Jo1958]

Eileen, hi
What a terrible time you are having and a cautionary tale for us all about taking care in advance.
I am pleased to hear that you have found a placement that looks and sounds good, I do hope it turns out well and you are all happy with what is on offer there.
The financial situation you are finding yourselves in is not uncommon, my savings are also much depleted after caring for hubby full time for the last year without any earnings or help. But if, as I hope you find, it's right for the sufferer of this awful disease then we wouldn't have it any other way.
Take care of yourself,
kind regards, Jo

 

[eileenread]

Hi Jo

Sorry to hear about the situation you are in there are so many awful tales out there I get quite upset reading about some of them.
We hope that Dad settles in he seemed anxious after his assessment but we have been told to expect a change in him for a week or so.

I wish more was being done for people with this awful disease having a family member suffer from it has certainly opened my eyes.

 

[jenniferpa]

I just want to make sure that you are aware that if your father has less that £23250 in liquid assets (that is, savings, bank account, IRAs, premium bonds etc) he will be entitled to a 12 week disregard while you sell his house. It doesn't sound like this will apply, but if you don't know about it, it won't be offered.

I assume you've applied for AA on his behalf?

 

[eileenread]

Hi Jennifer

Thanks for advice. Unfortunately Dad (who is my FIL) amassed a tidy sum of money through frugal living and spending (he is 92) which takes him well over that limit. We are hoping to rent his house out and have worked out that with his pensions and AA (we are waiting to hear regarding moving to higher band) and rental from property that we will only have to make up half of the home fees from his savings I know what looks good on papers doesnt always work in practice but there is enough to keep him going for 5 years or more without selling his house.

Certainly any advice anyone can give is more than appreciated.

 

[JPG1]

Eileen,

Horrific words of caution that you have found a way to share with everyone. I feel for you.

It is just not acceptable for you to have been told by ‘the authorities’ that they are unable to offer any further assistance - they all have the legal duty of care and that means they have to offer advice, wisdom and knowledge. (If they know the meaning of those words, that is!) Regardless of whether someone is likely to be self-funding or not - that is their legal duty of care. But not a lot of people know that!!! That's why we sometimes get exploited along the way.

It’s also extremely unfair of ‘the authorities’ to have told you that you would need to assume responsibility for paying for his care. That obligation was removed a few years ago, meaning that nobody has to bear the burden any longer for any relative’s costs. And definitely not if there is no Attorney in place. But not a lot of people know that either!!!!

And before your Dad was discharged from hospital, there should have been an assessment for NHS Continuing Healthcare which would be funded in full by the NHS (carried out by the PCT, and with your involvement all the way along the line). And that process should remain ongoing until such time as you are presented with full information of it all, the outcome and also with your ability to challenge any decision made.

Then, if it was eventually deemed (after all appeals processes have been exhausted by you, and then only with your consent) that your Dad was not to receive fully funded NHS CHC, there should have been an assessment for the Nursing Care Contribution.

And so it goes on!

There’s no way you should have been forced to sign any contract to take on the responsibility for payment of his fees. That’s totally out of order.

There’s recently been a published report – in the last few days only – about the way in which the local authorities/SS are charging people for services illegally.

They thrive on our ignorance and innocence. Sadly.

Wishing you all well, and hopefully one day the mess of care will be sorted out once and for all, so that we don't have to be presented with these insurmountable obstacles. Do they really understand the meaning of the word 'care'?

All the best.

 

[eileenread]

Thank you for your input. We have brought up many of the issues you have listed. We had two choices either we pay the fees for the time being so that we could secure him in a Home that we were happy with or the hospital would have placed him in temporary accommodation (more upset for dad) until we had the funds sorted. Whilst one side of use wanted to make them do this, the other was Dad's ultimate welfare. I can assure multi disaplinary hearings and copies of all reports went out the window when they realised he would self fund. Dad's social workers last words to us when we asked again about CHC was that he would not qualify as he only had care needs and not medical needs and that as we would be self funding he would have to step back and not be able to offer us any further help ie finding of care homes.

I feel for the next person who will have to go through what we are going through.

Hopefully there will be a happy outcome in that Dad will settle in and that we will once again be able to get our lives back on track.

 

[eileenread]

Just a question if you can answer it. Regarding NCN. We have been told by the home that he will qualify for NCN can this assessment be carried out by them? No one in the hospital ie OT or Social Worker even mention this it was something we found out from the Care Home Booklet. How many other people dont know about it I wonder.

 

[jenniferpa]

And sadly, that's so often what happens: caring family, recognizing that insistence on sticking to the "letter of the law" will result in the sufferer suffering more, cave (for want of a better a word). I did it myself, and while not sorry I did it, wish that there was a better system.

I would still be requesting an evaluation for NHS CC - it's not like social services have any real input into that anyway, and it's definitely not up to the social worker to make that evaluation. And additionally, you might get the nursing component (unlikely perhaps but possible).

So often this whole thing comes down to "sticking to your principles" versus "doing the best for the person".

 

[JPG1]

Regarding NCN. We have been told by the home that he will qualify for NCN can this assessment be carried out by them?

In a word of one syllable: no! A care home can't carry out an assessment for the Registered Nursing Care element. A care home (with or without nursing) is not part of the NHS or of the PCT.

The care home should only be able to 'suggest' to you the avenues you should explore. Very often, though, care homes decided that they know it all, so they sometimes advise people incorrectly as to whether or not someone would be able to qualify for anything at all.

Of course your priority will always remain the comfort and well-being of your Dad. That's what we all work towards.

But the MDT (multi-disciplinary team) meetings should have been carried out before your Dad was discharged from hospital. The question of whether he would be self-funding should not have entered into the debate at all.

For the simple reason that anyone who is about to be discharged from hospital should receive that assessment. And that assessment for NHS CHC comes before anyone asks questions about the future funding of care. That would apply to millionaires too!

It's called pulling the wool over people's eyes - and the longer the length of wool, the better the system of neglect continues.

 

[Jancis]

Dear Eileen,
Unfortunately I didn't read your thread earlier this year, but I do understand your frustration and anger.

I am not as knowledgeable as JPG1 who is an absolute mine of information on this kind of problem, however, I have been involved with the Court of Protection which is ongoing and I thought my situation was bad until I read your's. You sound at the end of your tether and it is awful that you have had to draw on life savings to fund your FIL's care when he has substantial assets of his own. As you rightly say, what would have happened if you had no reserves to draw on?

In my own case, right from the start, Social Services paid for my uncle's immediate care via a local authority bridging loan (presumably interest free but I don't know how this works). I didn't have to ask for this. SS accepted that until the COP could appoint a Deputy for property and affairs then they would have to finance his care. Although I applied to be my uncle's Deputy, the COP decided that an independent solicitor should be appointed. My application cost me very dearly in legal fees due to the unexpected complexity of the situation. I had to surrender a pension scheme in the end to pay the bills.

I do hope your FIL will settle into the home you have been able to secure. He sounds very similar to my uncle in so many ways. Sounds like it's been a scary time for you over the last few months and wish you well.

Love Jancisx

 

[Nebiroth]

Our troubles then were just beginning. The minute Social Services realised he was self funding that was it. We were told that they were unable to offer us any further assistance and that everything was our responsbility from now on. They also made a point of saying they wanted to discharge him asap.

Needless to say Dad did not have an LPA and doctors deemed him incapable of signing one, so our only other option was the Court of Protection. To pay for his home we have to be able to access his finances. That is a nightmare in itself and the whole process could take 5 months.

Absolutely shocking! And it's complete nonsense as well.

The facts are that Social Services have a legal duty of care towards vulnerable persons. It does not matter in the least that they may be self-funding (this can only be determined after a proper financial assessment has taken place).

Under the law when social services said "it's your responsibility" you had the right to turn around and say "no, it is not, it is yours, we are walking away and having nothing to do with this" (obviously this is not what you would actually fo but that is the legal position)

Social Services cannot oblige anyone to provide care, of any sort, to someone else (except dependent children). This means that children have no obligation to parents - even spouses don't (they used to but this was changed long ago). This includes managing your dad's finances - if there is an existing LPA or EPA then the named donor has a legal duty to register it and assume their duties (although they can opt to cease doing so), but if not then no-one has any obligation to do it. It is quite common for the local authority to assume guardianship for this purpose.

Sad to say, it appears that social services either appear to be ignorant of the law or, and worse, appear to take advantage of the fact that most laypersons are unaware of what the law says.

I have no doubt that they wanted to discharge as soon as possible - the NHS can fine local authorities when delays occur that lead to patients suitable for discharge occupy hospital places because the local authority has not arranged a suitable care plan.

You have been treated very badly and in my opinion you have grounds to lodge a formal complaint.

 

[eileenread]

Thank you everyone for your input. Things were going great dad arrived in his Care Home on Thursday evening at 9.30 after sitting around in the hospital all day waiting for an ambulance. Only after several calls by myself did they finally manage to get an ambulance to take him to the Care Home. Dad settled in fine even said he liked it. However, things took a downturn this evening. We got a phone call from the Home informing us that Dad was frightening and threatening the other residents with his walking stick unfortunately these were all ladies. The staff could do nothing. As dad has moved out of his area they were unable to call his GP. The Home informed us that they would arrange for a change of GP but obviously with the weekend in place nothing could be done. As the Home is close to home we went there to try and assist. He became really aggressive with us although we did manage to relieve him of his stick and get him back to his room.

We were assured by the hospital that they had got his medication doseage correct and that there would be no further outburst of aggression how wrong they were. We are now at the end of our tether as we fear the Home will refuse to keep him.

On the MDT meetings we were told Dad would not be having one. Just another shock point we have a 92 year old man admitted to hospital because of hallucinations who then became aggressive and violent whilst in hospital. The hallucinations are quite frightening to him as he believes people are out to get him and guess what a psychiatrist report said he was normal. God help us all.

I feel at this moment in time that we have been hoodwinked somewhere. We did bring up the National Framework for funded care with his social worker as we said he ticked some of the boxes regarding behaviour, medication for his behaviour (quetapine, cognitive behaviour, he cannot retain what he is being told, that is in doctor's capability assessment, but the social worker dismissed all this.

Should I write to the hospital, requesting a review. I have a draft letter as in the Coughlan case although my FIL condition is different. He is mobile. Obviously he is affected with hallucinations, aggression and voilence.

Obviously this whole episode has drained us we have visited so many website and have reams of information but you try getting these across to social workers and the like.

Any input by anyone would be appreciated.

 

[JPG1]

It hurts to read what you and your Dad are experiencing. (I tried to post this earlier, so if it ended up in the wrong thread I apologise. If it arrives twice over, I apologise twice over!)

1. Anyone admitted to a care home from hospital should have undergone an assessment for NHS Continuing Healthcare, which means fully-funded care via the NHS (not by Social Services).

There should have been an assessment for NHS Continuing Healthcare before your Dad was discharged from hospital. That is the first step in the discharge-from-hospital process. And you should have been involved in that, so that you could have the chance to ‘input’ your special knowledge of your Dad and of his needs.

If there wasn’t one, they have not followed the correct procedure (a legal requirement before discharge from hospital).

2. Anyone admitted to a care home must receive - before admission - what is called a ‘pre-admission assessment’. That is supposed to make sure that the person entering the care home – and his/her family members – is/are happy and satisfied that the ‘care home’ can meet his/her needs.

And also the legally-required ‘pre-admission assessment’ is designed to make sure that the care home is fully CQC-registered via the appropriate categories (i.e. with/without dementia; with/without nursing care and so on) and fully-equipped (via suitably qualified and trained staffing and with suitable ‘equipment’) to handle his/her needs.

And that applies to people without dementia too – not everyone entering a care home has dementia, so each and every potential resident (who may have equally challenging medical and/or mental health and/or physical conditions) must receive a ‘pre-admission assessment by the receiving-care-home’) before admission.

Was there a ‘pre-admission assessment’ carried out by the care home, before your Dad was accepted by the care home?

3. Anyone admitted to a care home has a choice:
(i) to remain with their original GP if that is desired and possible and if within the catchment area of the original GP; or
(ii) to change to a new GP of their choice within a new GP’s catchment area; or
(iii) to be ‘served’ and ‘cared for’ by whichever GP is connected to the care home – and receiving a fat ‘retainer’ fee for serving that particular care home.

Every care home has access to the ‘emergency’ service of a GP or to the NHS medic-provided services in an emergency. Just the same as you and I have, if we are ever ‘away from home’ and then encounter a need for medical help.

4. If the care home can’t cope, within such a short space of time, with the behaviour and demands of dementia, it may be a care home that is unsuitable for your Dad. Is that care home registered via the CQC as ‘able to cope with dementia’? It doesn’t sound like it.

5. Challenge every single thing your SW has told you. A SW is not qualified and not legally able/entitled/allowed to assess for NHS CHC (= NHS Continuing Healthcare funding). So by-pass the SW and go straight to your PCT (=Primary Care Trust) department for Continuing Healthcare. There will be one, and then ask the PCT Switchboard to put you through to the CHC coordinator. There will be one of those too. Guaranteed!

Yes, you have been ‘slightly’ hoodwinked. Join the merry band of those of us who have been similarly ‘slightly’ hoodwinked! But you now know better – so hit the phone tomorrow, and then hit the keyboard, and make sure you make a full and total diary of ‘who said what to whom and when and how and ... and ...’ whatever it takes.

The thing that bugs me is the way in which some local authorities and some SWs are totally au fait with the NHS CHC procedures, and more importantly with the challenging demands of dementia, and who go that extra mile to assist each and every one of their ‘clients’. But others just close the door.

Good luck! And challenge everything that you aren’t comfortable with.

 

[lesmisralbles]

Hello

At that time with the help of information on the AS website I concluded from dad's symptoms that he was suffering from Lewy Body Dementia. Quote


Hello
Could I ask how you/they know it is lewy body dementia ?
I am interested because my husband was told this is what he had.

Thank you
Barb

 

[eileenread]

Thanks JPG1 you are a mind of information.

Its difficult when you are trying to put things down to cover everyting.

Dad was assessed by the Care Home, which I might add is lovely. We have been so impressed with it over the few days he has been there. They know of his behaviour problems. There Dementia Unit is split into two halves challenging as they say and non challenging. Dad's room is in the non challeging section, although we were informed that he may have to be moved to the challenging section, we were hoping not as the side he is in is so calm. It may be when we go to the home on Monday that they will have to move him, my only worry was that we have the last room vacant in the Home. Fingers crossed all will be okay Monday.

I have started to prepare a letter but I am not sure if I should use the strong wording as per the pro forma letter I have found on the internet.

The principle here is not so much the the funding or non funding but the fact that procedures do not seem to have been followed, although dont get me wrong I think that every dementia patient regardless of their needs should be funded, they do after all have an illness and therefore need health needs.

Thanks once again an I will keep you posted.

If there are any places you can direct me it would be appreciated.

 

[JPG1]

You don't need to use any words other than your own words to describe how you feel, and what you are trying to achieve. Those words can be 'strong' as long as they're your own chosen words.

All the best and if you're impressed by the home at present, then stay happy! And try to keep your Dad there for as long as it takes for him to settle. And time is the one thing that it may/will take.

PS. Yes, I agree - and I'd like to hope that ALL other TPers would also agree - dementia is an illness, an organic disease of the brain about which not one single one of us can change a single thing. So, the healthcare and funding for same should be there. As it is with each and every other disease/illness that requires healthcare.

Perhaps we need a TP poll - as to whether dementia is an illness or not. And if so, whether that illness should be seen as needing healthcare. Or not.

Interesting thought! But I have no idea how to construct a poll, so I'll leave that one for 'someone' else. Or not!

 

[eileenread]

Thank you. I am sure someone somewhere would know how to go about it. I would have thought that this has come up before. This problem is only highlighted when someone of a profile nature has someone they love get this awful disease.

Will keep you posted, I feel I will get nowhere but will give it my best shot.

 

[JPG1]

I feel I will get nowhere but will give it my best shot.

No, no, no!!! Positive thinking is required wherever dementia rears its ugly head.

So, yes, yes yes ...

You will get SOMEWHERE. And there's a cue for a song there! Somewhere ....

 

[eileenread]

Hi Barb

I started by listing all his symptoms and behaviour. I then ticked the boxes of the various dementia's listed.

The main thing that led me to believe it was Lewy Body was that he was having severe hallucinations something that is more prevalent in Lewy Body than any other Dementia and that unlike most other Dementia sufferers he has retained a fair bit of memory. His short term is affected however his long term is still reasonably sharp he is able to recognise people and shows recognition.

Hope this is of some help.