Hospital/Social worker - trust destroyed, desperate

[MegandMolly]

Hello all

I'll begin with a disclaimer that its not my partner with Dementia its my Dad.

Background:
Memory issues for last 5 years or so, scans etc showed vas changes but nothing serious (we were to find out later he had small vessel disease), discharged with one session at a memory clinic. I could see he was getting really bad but Mum was in denial/couldnt see.

Fast forward to just after Halloween 2017 he was hospitalised with delirium that started at home. It was actually his dementia really coming on very fast with a minor ep of delirium. After 2 weeks he was declared fit to come home, we had a meeting with his consultant and hosp social worker to express concerns over things we had seen in the hospital (shuffling walk, incontinence, inappropriate behaviour towards Mum, thinking he was at work, no idea he was in a hospital, refused to hear he had an illness, we were the ones with the problem etc). The SW said becaus ehe understood what a care home was and what it meant and he could retain that info for 5 minutes he had capacity, even though he was under a DOLS due to trying to escape the ward.

Hes now been in an assessment unit for about 4 weeks after we pushed back in the above meeting for further assessments. We have been told by the nurses that he wanders, is incontinent, needs help showering, strips off his clothes in the day room because hes too hot...........it goes on.

Lots of things have happened in between but Im finally getting to the crux of the matter - thank you if you have read this far....

We had a best interests meeting just before Christmas, we werent told this is what it was, the SW told mum it was just a quick chat to discuss discharge planning and care packages. We walked into the meeting where we were ambushed by 5 people (consultant, psychiatrist etc) who said he no longer as a medical need so he needs to come home. We explained why we felt this wasn't possible (Mum has various health issues, mainly mental/psychological, but has poor mobility) because it woudl mean he could never be left alone, wouldnt be able to go out without Mum so that woudl be two people with poor mobility holding each other up. Mums life would effectively be over as not only woudl she be a prisoner in her own home, but shed never sleep again as before he went into the hospital he constantly woke her up, she'd then have to stay awake until he came back upstairs to make sure he was ok, and then go downstairs to check he hadnt left gas etc on/unlocked the fornt door etc. Eventually, the SW, after the psychiatrist stepped in, suggested daycare for 5 days a week and 2 care visits a day, he specified that this needs to be in place BEFORE Dad came home. We reluctantly agreed (we had no choice) on a trial basis and were assured that if at any stage she couldnt cope we could call an ambulance to take him back to hospital. After the meeting, which was rushed to a close when I started asking more questions, Mum called the SW back and asked for another chat as we had some further queries. She didnt. This was just before Christmas remember.

We heard nothing. Nothing at all.

Yesterday, a care worker arrived to bath Dad at 10am, strange, called the SW - no answer, did not call back.

Last night Dad arrived home in an ambulance, fully discharged from the hospital. My poor Mum had to refuse him to come in his home. I know this killed her, which is why I also know 100% that she is genuine when she says she wouldnt cope.

What happened next is disgusting IMO - the consultant called Mum, had a go at her because they had no bed for Dad.......then the SW called, "why didnt you tell us about your problems" - err.....we did?? Numerous times.

Now the SW, after being sickly pleasant with Mum, is agreeing that Dad needs to be in a care home due to Mums issues.

Heres whats making my nose twitch - she said Mum has to tell Dad he cant come home, and convince him a care home is the best thing for him.

My question is - why did we have to have a best interests meeting with 5 people to decide he should be at home, whereas on Friday this week Mum has to sit in a room on her own with my Dad and tell him he has to go into a home and get his agreement? I may be too cynical and way off with this, but Im thinking if its a voluntary suggestion coming from Mum/Dad rather than them saying he needs a care home due to his needs/lack of appropriate care at home then that makes him ineligible for funding?

(Sorry for the long post - wanted to give a bit of background (theres way more elements!!) so you understand my concerns.....and also just because it feels good to write it down)

Thank you.

S

 

[Shedrech]

my oh my @MegandMolly what a sad tale
your poor mum must be feeling utterly distraught

unfortunately, there are other members in not dissimilar situations - I think Social Services are so under such strain that they are under pressure and passing that on - not that that in any way excuses the way your mum and dad have been treated

has your mum ever been given a written report of any consultations and the best interest meeting(s)? - if not, request these as there should be written records - and also write out, as you have here, exactly what you remember of every meeting so that you can show them what you know happened (if each of you do this separately, the accounts will be very similar but with some differences of emphasis, which will back up that they are true accounts)

your mum was very brave to refuse to have your dad discharged as they tried to do, good for her; but so very hard on her too

does anyone hold Power of Attorney for health and welfare for your dad? - this might help with some leverage, though strictly it doesn't come into effect until your dad no longer has capacity
and that seems to be the issue they are pressing - in one way they are right, If someone has capacity, their wishes must be followed and Social Services can't strictly move someone into a care home if they refuse, unless the person is sectioned (not done lightly; and with a possibility of funding the care needed) - however, they seem to be going about this brutally and with no sympathy for either your mum or your dad

maybe in a conversation throw in these buzz phrases, SS are meant to react positively to them - your dad and mum are 'vulnerable adults'; your dad because of his dementia nd behaviour, your mum because of her own health issues; they are 'at risk' because your dad cannot look after himself and your mum cannot look after him, so both may come to harm; and the Local Authority has the 'duty of care' for all adults, no adult can be required to look after another adult

has anyone mentioned Continuing Health Care funding? - if not ask for a CHC checklist to be done - your dad may not be eligible, but before discharge the checklist should be done to find out - and this will show you have some knowledge of funding - also mention that you are extremely concerned as for your dad there has already been one failed discharge

have you contacted the PALS in the hospital - they are there to help and the wards don't want to have a record of them being called in - let them know exactly what has happened and what has been said to your mum

and there should be a dementia matron (may not be given that title) - ask to speak with them

if the family do hold POA, you could go ahead and arrange a move to a care home and slightly fudge the issue of getting your dad's agreement by telling him it's so that he can recuperate - indeed maybe that's the way to get his 'permission' - say the care home is to give him time to rest and recuperate for a time, and for your mum to build up her health, and then they can decide what to do for the future when he is well enough - actually this isn't a lie as the first few weeks are a trial period to make sure the placement is suitable

as for funding of care home fees - your mum and dad's home is not at risk, it is disregarded in any financial assessment, there is no question of your mum being required to sell it - CHC is incredibly difficult to get and rarely awarded these days - so that leaves either:
if your dad alone had savings/assets (NOT the house) and half of any joint savings and income over £23250 then he will fund his care himself
if his savings are below that amount and he's on a low income, the LA will at least part fund his care, using his state pension and half any private pension, and he will lose his Attendance Allowance - but your mum must be left with enough to live on (including any benefits she is/will be entitled to) - AND the LA must offer at least one care home which they will fully fund - if the family prefer another, they may chose to pay a top-up of the fees

I've gone on too long - hope something here is of use
finally - I really do recommend that you call the AS Helpline as they have a lot of experience of tricky issue
0300 222 11 22
Monday to Wednesday 9am – 8pm
Thursday and Friday 9am – 5pm
Saturday and Sunday 10am – 4pm https://www.alzheimers.org.uk/info/...46.1520506424.1514026406-344839362.1497455008

keep posting - I agree it helps to get things off your chest and straight in your own mind - no post is too long

 

[Havemercy]

There are no words to describe this disgusting so called "discharge". For your dad just to be sent home in this manner - with apparently no notice to the family beggers belief. If this were me, I would be putting in a formal complaint and asking for names of those involved with this fiasco. Best wishes to you and your mother and I hope things work out with a placement for your father. Your mother did the right thing in my opinion - it would have been a disaster if he had stayed at home. Best wishes again.

 

[MegandMolly]

oh my goodness thank you for replying! I could see people had viewed and assumed I was to boring to reply to lol

I have to be quick as Im supposed to be working but to answer your questions:

- No written reports, of anything, nor told of any assessments when they happened
- No POA unfortunately
- I mentioned the vulnerable adult - dealing with two - the SW said Mum could have a tracker fitted to Dad and a door alarm and a carers assessment (I refused saying Mum wasnt going to be his carer because she couldnt, the SW was even told of a potential for......not sure hwo to put this.......inappropriate advances that might escalate)
- I asked about CHC in early December - was told it wouldnt apply as his is a social need (I argued the crossover -not interested)
- Have thought about PALS but mums woried this will make them be even more awkward
- They do have joint savings but it wouldnt be long before his share is below the £23250 (the SW said its £16k? ) and the SW also said the house is at risk, Dads share, I challenged this saying frm my research because mums still alive and living there its disregarded - the SW said I was wrong but everything I read suggests Im right?

I think theyve taken one look at me and Mum, seen how we present, made an assumption theres not a lot of money avalable (true!) and thats they they have been so aggressive about him coming home. "Its his home too" "he has a right to be there" "he just wants to be with his family who love him" "hes very scared, imagine how youd feel" etc

Mum will be ok as she has her pension etc

Im still wprried about this thing on Friday, if its agreed between Mum and Dad about care hime (Pitched tohim as you say) then would they still fund when it drops below the £23k? Even if they deem he doesnt need care as such, he just needs it because theres nowhere else fr him? (I feel sick typing that out)

Also want to add Ive held mums hand every step of the way, she has no clue what to do. My poor Dad, just want to take him in my arms, I wish I didnt have to work so I coudl care for him.

 

[DeMartin]

I am appalled, but a huge YES to your mum, such courage.
The reason for slow responses was probably outrage, and a need to think how best to help.
Don’t let anyone pressure you or your mum, stick firm,
And as for that SW, I can’t type it,
Go to PALS, keep kicking up a stink
Document everything

 

[Shedrech]

hi @MegandMolly
it takes time for folk to respond as most members are carers so can only pop in once in a while - and we have a lot of guests to the site (which is good, means it's helping many more folk as well as members) but guests can only read, so there are always many more reads than responses

I can't believe that those things were said; how could anyone not appreciate that your mum knows only too well how her husband feels and herself would want him home with her BUT has come to the dreadful decision that his and her wants are now out weighed by your dad's care NEEDS

do, please, get PALS involved, it has made a difference for some members here- and I agree, make a formal complaint when all this is sorted out
I believe AgeUK also have an Advocacy service, may be worth checking that out

personally I would insist on the CHC checklist - tell them you want it done to prove what was said - and your dad's condition has 'progressed'

as for funding - have a look at these
https://www.gov.uk/government/publications/care-act-statutory-guidance/care-and-support-statutory-guidance#AnnexA
https://www.ageuk.org.uk/Documents/..._home_if_you_have_a_partner_fcs.pdf?dtrk=true

the upper limit is £23250 - the LA part fund
the lower limit is £14250 - the LA wholly fund
the marital home is NOT at risk (that's made me angry) - it is a mandatory disregard in any financial assessment if there is a spouse living in the property

some homes will not accept only LA funded residents - you can decide to pay a top-up BUT this will only increase over the years and you cannot be made to pay this - the LA have to offer at least one home BUT it may not be the one you'd choose yourselves - if you can start doing your own research so you know what's out there​

http://www.housingcare.org/index.aspx
https://www.cqc.org.uk/

 

[MegandMolly]

Just a quick one again in between work - thank you all, so much

I don tknow where my mum pulled her courage from, I'm so proud of her but also heartbroken that she had to do that, that she was put in that position, that they treated my Dad with such disregard.........how he must have felt seeing his home and then be driven off again..........it makes me vibrate with rage tbh and it will take a lot for me not to simply headbutt the SW when I next see her, the only 'good' thing is he probably wont remember

 

[Kikki21]

I would definitely complain to PALS & actually I would raise a formal complaint too.
My mum was unsafely discharged & ended up straight back into hospital & I am still seething about that.
I have contacted PALS twice now & shown that i’m not going to be pushed around or fobbed off but I have a feeling that my mum’s social worker is thinking about the money aspect of stuff & not about my mum’s NEEDS so I reckon we might also have a battle. Don’t give up with your fight!

 

[LadyA]

I think theyve taken one look at me and Mum, seen how we present, made an assumption theres not a lot of money avalable (true!) and thats they they have been so aggressive about him coming home

You may have a point. However, I wouldn't worry about being awkward - THEY are the ones making things awkward. All you and your mum are doing is showing you won't be walked over when it comes to getting your dad the care he needs. I would, as suggested, contact PALS.

 

[Slugsta]

The treatment to which your mum and dad have been subjected is utterly appalling! Please do complain, people need to know they cannot push patients around like this.

The SW who dealt with my mum was focussed solely on cost. If she had said 'cost effective' I would have had some sympathy but 'cheapest' was her only focus.

I will also re-iterate that your mum's home is not at risk. The person who told her that was either very badly trained or telling an outright lie - I will leave it to you to work out which you think it was. I do hope that a satisfactory solution, for all concerned, is found very soon.

 

[Amy in the US]

@MegandMolly, welcome to Talking Point. I'm sorry to hear about your horrid experience and that you needed to find your way here.

I wanted to say that you are not boring or too long winded. Some people here only read and don't participate in discussions. And many of the "views" are generated by bots, not actual people. So please don't feel discouraged about that.

 

[Jessbow]

how dreadful.

I must confess that I told my own mother an out and out lie, that she was going 'somewhere else' until she was well enough to come home, as despite dementia, she'd never have agreed.

After a week or two she simple didn't ask To go home again, I blamed the Dr, he had to say it was okay.....

Maybe you mum could tell a similar story, ''its so much nicer than the hospital''
Big hug for her too, it must be dreadfully hard

 

[Baker17]

Just a quick one again in between work - thank you all, so much

I don tknow where my mum pulled her courage from, I'm so proud of her but also heartbroken that she had to do that, that she was put in that position, that they treated my Dad with such disregard.........how he must have felt seeing his home and then be driven off again..........it makes me vibrate with rage tbh and it will take a lot for me not to simply headbutt the SW when I next see her, the only 'good' thing is he probably wont remember

I want to head butt the social appointed for my husband as well, the attitude they have is disgusting, I won’t go into detail but it’s now going to the COP to decide where my husband lives, they’ve ignored letters even from the solicitor I’m using, I hope you manage to get the right outcome for your mum, and stick to your guns because I think they think we are just going to lie down and succumb to their views, they don’t have live with the issues 24/7 grrrrrr

 

[No_Exit]

Hi,

Sorry to hear about the situation with your dad. His treatment from Social Work and the hospital is a disgrace. I have had similar problems and to be honest my conclusion is the consultants / doctors nurses and social workers dont really know how to treat people with dementia, they just bury their heads in the sand. And want the patient with dementia out the hospital asap. I am not making excuses for them as they should be well trained up and able to look after your dad until things have calmed down a bit. I am pretty sure if your dad had another illness such as cancer he would probably be treated with more care, compassion and respect not discharged so quickly. In my experience dealing with these people whilst looking after my dad because they are really ignorant of dementia and just dont know and are unskilled in how to tackle the issues families face. I hope you manage to get everything sorted.

Dont let them get you down.

 

[technotronic]

Hi I was sorry to read about your dad and treatment you have received from the social worker, she definitely needs head butting, might knock some sense into her!
When my wife was in hospital the first time in November, it was a case that I get the house n carpet cleaned before she could come home, which had suffered fecal staining from her refusing to wear any incontinence pant or let me wash or change her, which I did. The reason for my wifes release a day or so after carpet had been cleaned, as was stressed to me by the hospital social worker was that as she was only suffering from dementia there was no medical reason for her continued stay in hospital now she could again eat food n was now more used to wearing incontinence pants n being changed. And so she was two days later to sleep back on the settee again. Keep doing what you need to do to get the result YOU want n not the social worker or hospital. My thoughts are with you.

 

[MegandMolly]

Hi all

So we had the meeting (I'm on a rubbish tablet so would take me forever to relay everything) but the SW,not surprisingly, said "let's forget the past and start afresh" (don't think so love, PALS and your manager will hear more about this i guarantee it) the upshot is she now agrees my mum wouldn't be able to cope, or keep him/her/the public safe as he could wander out into traffic etc

She said she'll get dad so mum can tell him- I said no way is my mum doing her job for her and having to break her husband's heart, it's inappropriate to ask that of her and after the despicable way they have both been treated there's no way I'm letting mum make her life easier. She was annoyed but she said fair enough and that she'd tell dad (she rang me afterwards - must have taken a bit of feedback I gave her on board ) and said dad had accepted it quite easily, saying "am I that bad" and that if everyone thought it was best then ok - although he forgot the conversation 2 mins later and the SW had to go through it again apparently. I said this is the trouble mum would have, she'd be telling him every 5 mins that he can't go out the house, can't drive etc and the problem is hed ignore her because he did before. Plus his acceptance just shows how bad he is mentally - he always said he'd want us to "deal with him" if he ever had to go into a home )

Can I ask - she keeps going on about the value of the house being assessed but everything I find says it's not included as mum lives there and it's also half in her name - the SW said it's not included for now, but once mum died and the house is sold (if) then basically everything owed will come out of that. She also mentioned top ups and said well have to pay a top up but I thought we only had to pay that if we want a better standard/different location than what's offered? Although she didn't actually say one would be offered, she said I'll get a list of homes and we choose from that and "we must ask about the top up fees so we don't get stung by them".

I want to stress it's not about money, I don't care if mum gives it all to charity if it makes her happy. It's the principle that I don't want these <insert word I probably can't say on this forum> to get anything they aren't entitled to.
I'm so confused and don't trust this sw as far as I can throw her, although I reckon I could chuck her quite far if I really put my back into it.

 

[Shedrech]

hi @MegandMolly
well done on standing your ground
when it comes to the actual financial assessment it will be done by someone who does know the rules
have a look at the links I added to post 6 - the SW is wrong and needs to be told, goodness knoss how much anxiety is being caused by her telling this to families - the marital home is disregarded completely

 

[sah]

Hiya.

My husband has just moved from self funding to LA funding so I had to brush up on all this!

• Just to reinforce advice you've been given. House totally disregarded whilst mum is alive...they cannot take it into account at all. Is it held in Tenants in Common? That way, mum can safe guard at least half of it if anything happened to her before dad. They cannot put a charge against it either whilst mum is alive.
• The LA must offer at least one fully funded care home that meets your dad's needs ( which should mean it has dementia specialist standing?) As you rightly said-top ups are only payable if the family choose a more expensive alternative.
• Your mum's needs are also important -they cannot place dad in a home which makes it impossible for the family to visit and be involved in his care.( Human Rights Act-Article 8. The right to a family life...throw that at the SW if needed)
• They do not have the right to know about any of your mum's sole finances-such as her savings/pensions etc. She does not have to tell them details of these.
• Age concern website also -as well as the ones on here -has a useful guide/fact sheet - you can download it I think. Some solicitors also offer a free intial consutation...maybe worth seeing one and make sure the SW knows you have?

Your post has made me mad.....don't they think this is awful enough for families without them getting their facts wrong? Hope it goes better for you in future.
Sah.x

 

[MegandMolly]

Shedrech I've just realised that you posted links to sites that will answer my questions, I do apologise, my head is all over the place. Like everyone else who sadly finds their way to this forum it's occupying my mind constantly until I get used to this chapter of our lives. Have permanent headaches.....and every now and then I forget for a few mins, but then I'll think about my poor mum and dad and my heart gets so heavy, like someone is standing on my chest.

Anyway, will have a read tomorrow of those links thank you shedrech.

Sah, techno, exit and everyone earlier in the thread - thank you for your support and sharing your experiences, it's helping a lot.

(And we are going to speak to a solicitor to go through everything)

Will update, night all.

 

[Ronnianne]

oh my goodness thank you for replying! I could see people had viewed and assumed I was to boring to reply to lol

I have to be quick as Im supposed to be working but to answer your questions:

- No written reports, of anything, nor told of any assessments when they happened
- No POA unfortunately
- I mentioned the vulnerable adult - dealing with two - the SW said Mum could have a tracker fitted to Dad and a door alarm and a carers assessment (I refused saying Mum wasnt going to be his carer because she couldnt, the SW was even told of a potential for......not sure hwo to put this.......inappropriate advances that might escalate)
- I asked about CHC in early December - was told it wouldnt apply as his is a social need (I argued the crossover -not interested)
- Have thought about PALS but mums woried this will make them be even more awkward
- They do have joint savings but it wouldnt be long before his share is below the £23250 (the SW said its £16k? ) and the SW also said the house is at risk, Dads share, I challenged this saying frm my research because mums still alive and living there its disregarded - the SW said I was wrong but everything I read suggests Im right?

I think theyve taken one look at me and Mum, seen how we present, made an assumption theres not a lot of money avalable (true!) and thats they they have been so aggressive about him coming home. "Its his home too" "he has a right to be there" "he just wants to be with his family who love him" "hes very scared, imagine how youd feel" etc

Mum will be ok as she has her pension etc

Im still wprried about this thing on Friday, if its agreed between Mum and Dad about care hime (Pitched tohim as you say) then would they still fund when it drops below the £23k? Even if they deem he doesnt need care as such, he just needs it because theres nowhere else fr him? (I feel sick typing that out)

Also want to add Ive held mums hand every step of the way, she has no clue what to do. My poor Dad, just want to take him in my arms, I wish I didnt have to work so I coudl care for him.

Can I urge you to go to Pals? My husband of 51 years was sectioned, and placed in a locked unit for assessment. the care was disgusting, his physical health declined, and I had mo idea what to do until a relative of another patient told me to go to Pals. I was reluctant as I feared it would make his treatment worse, but they were wonderful, we had a meeting, and all our complaints were noted and dealt with. Please, for your mums sake, contact them, I'm glad I was persuaded