This system has beaten me

[Meppershall]

Hi everyone

My dad has Lewy Bodies Dementia and after a stressful few months of my him being admitted to hospital with a UTI, then agreeing to move to a NH (witnessed by the SW), then realising he hated it and the SW agreeing he can move back home - despite my objections - it looks as if it is happening.

After not meeting the criteria for DoLS (assessed yesterday), he has been assessed by a care company and are in the process of arranging a date to go home.

I do not want him to return home. His neurologist is not keen on this decision. His specialist nurse thinks he should be in a NH. The carers at the home think he will struggle at home on his own even with a care package. The SW says he has capacity and that is that. Basically, I have been told that I need to let him go home as he wishes and allow a crisis to happen again - before it can be considered for him to go back to a NH, and he may not even agree to it then!

I have firmly advised the SW that I will not be involved in his care package, that this needs to be agreed between my dad, the care company and if required assisted by SS. I have refused to get involved with his medication and the organisation of blister packs from the pharmacy. I will not be assisting if he needs additonal aids once he returns home - the SW needs to sort this. And, I will not be involved in any financial agreement, the SW needs to sort this also. I have agreed to take him shopping for his weekly shop, but nothing else.

My question, am I acting like a spolit teenager who hasn't got her own way for refusing to help ? (I believe I was near a breakdown earlier in the year with all of his care needs, hospital appointments, looking after the garden, doctors, medication, his challenging behaviour, sulks- the list goes on and on). Or am I doing the right thing and stepping away from this situation ? I will still be looking in from the outside as I will be his only emergency contact (brother doesn't want to know). I'm trying to stick to my guns and stay away but don't want people to think bad of me either. I am having difficulty reconciling all of this

 

[Moonflower]

I'm sorry. I'm sure more knowledgeable folks will be along soon, but for what its worth I think you are doing the right thing. You don't think your dad can manage at home, and if you give in to pressure you are facilitating that happening. It may be that if the SW has to organise everything without you, they will decide he is better off in the NH after all.
It might be worth you writing to the SW, listing all the things which need doing that you are not prepared to do, saying you will do one visit a week to shop, and stating that he is a vulnerable person and they are legally liable for his safety and well being. Putting that in writing means you have a record of it and so do they.

 

[elvismad]

I echo Moonflowers response. You were near breakdown yourself previously. You have clearly tried your utmost to do all you can and despite all the advice from the professionals the SW still thinks they know best. Try and stick to your guns(although I know how truly hard that can be). Your dad needs to be in the safety of the Nursing Home.

 

[Shedrech]

oh Meppershall
what a blow
I'm astounded that the SW has managed to force this through over the recommendations of all those involved in your father's care

you cannot wreck your own health over this, so I definitely agree with your stance - you are not abandoning your poor dad, you will be in contact with him on your terms - so you will be ready to notify the SW when things go badly wrong - I'm not sure I'd even take him shopping; maybe do it with him on line, or for him as going out to do a stressful chore may lead to problems

I don't know whether to hope for the best or the worst

but I send you my best wishes

 

[LYN T]

For goodness sake I would put it in writing that you will hold the SW responsible if another crisis happens. Mention your Dad is a vulnerable person and they have a duty of care to make sure that your Dad is safe. Then send it via email to the head of Social Services in your area. When the Crisis happens (obviously, I hope it won't but it probably will) get straight on the phone to Adult Care/Safeguarding and say, 'I told you so-now YOU sort it out'.

I'm sure that you have done the right thing in stepping back- please stick to it.

You must be feeling very stressed


XXX

 

[Meppershall]

Thankyou

Thankyou all so much for your posts - it really has meant alot to have you say I'm doing the right thing. My friends agree with me too, so I think I can stop feeling bad about being obstructive.

Thankyou all again xxx

 

[CeliaW]

Meppershall - you must be so upset and furious.

May I suggest that you summarise the points and email to the SW and their manager.

Copy for information to your MP and the budget holder on the council for Adult Services. (If you need any help with finding these and other appropriate people's contact details, please inbox me with your local council name - town and county- and I am happy to look them up for you)

I would also suggest that you request a formal acknowledgement of your email from those you send it to - especially the relevant social worker and manager.

You are not acting as a spoilt teenager, you are trying to ensure your Dad is safe and getting appropriate care and support. I have not seen all your posts so don't know if you have POA or if he has been judged to have capacity but the facts would still remain, you and many professionals have taken a reasonable view that he needs nursing home care and won't manage at home and this SW is putting a vulnerable person at risk.

Please don't doubt yourself, big supportive hugs for you x

 

[CB100]

Oh WOW

Gosh I feel for you so much and I think your SW is harsh and sounds unhelpful. Does your father qualify for financial assistance in looking after him? Because this is often the crux of the matter. Once the SW realises that even without financial assessment your father will have to self pay they run for the hills and abandon you. To be blunt .. if he does qualify then throw it back at them - you are not able to do anything due to other life commitments - make them arrange home visits, shopping, etc etc - everything that you can think of to stop you having to do it. If he qualifies for financial support then GO FOR IT. Trust me your caring work load will become great even with help.

I have had to bite the bullet with my mum (dad on NHS continuing health care in nursing home) and pay for carers because she does not qualify for any financial help other than attendance allowance and I can cope no more. I tried and I still do pretty much everything behind the scenes but from next week the paid for carers will come in for one hour a day at 6pm to do a meal and keep company, in addition to that there will be a visit on a Wednesday to do baths, bed changing, hair washing, personal laundry etc. Tuesdays are a pick up and go to day club (£35) and Fridays are community group day out (another £35.) Tuesdays when she is out I scrub her over large house from top to bottom. If you are self financing then kiss good bye to any spare money.

What I have learned is that if you really kick hard you can at least get a degree of emotional support from your SW. My mum is a serial killer when it comes to saying dreadful things about me behind my back. She has been so good at this that I got reported as an abuser and investigated under the safeguarding policy (good I say as I am a total believer in this policy) of course even my mum could not validate or confirm her own comments. Since then I have plagued our new SW (never had one before for Mum) I insist everything is recorded to her file, I insist on monthly meetings to protect both her and me - we will never get any money but I will be dammed if I am going to be judged by those that she bitches to!

I don't know your financial circumstances but PUSH PUSH PUSH. If you don't ask you don't get.

Big hugs to you. I have only been going through this for 2 1/2 years now but am frazzled already.

XX

 

[CB100]

ps

There are hundreds of people living in NH/CH who say they don't want to be. Sometimes it just takes finding the right one and giving it the right amount of time. XX I see it day in and day out with people moving in and out of my dad's home. Of course he wants to be home but sadly cannot be. He has now accepted it and has a lovely room in a 75% ok home (I say that because I am not sure there is a home that is 100% anywhere in the UK) he likes the carers apart from one. Grumbles about being overfed and although he and I do talk about his sadness he is brave and generous. XX

 

[Caroleca]

Meppershall ...how terrible for you...and all the others in this situation! Mom did not want to be in a care home but we had no choice...we couldn't look after her...absolutely no pwd would want to be in a care home...especially if given a choice. Personally I would NOT do any shopping...I know that sounds harsh...but in a way you are giving in to them by "helping out" ...as the other says write that email and tell them you will not be involved at all. This horrible disease is so consuming ...I feel for you.

 

[chris53]

Meppershall, I am very sorry you and dad have been put in this dreadful situation, I agree with all the comments that have been made on this thread, so won't repeat what's already been said,but would just like to add only one little point could you ensure that you get all this in writing from the social services first and that you are not first point of contact with the care company,any problems,however small, that they have, they must call social services.
Sending you a hug and hoping that SS see that this is not the quick fix or the answer to keeping dad safe 24/7.
Take care
Chris

 

[Georgina63]

Hi Meppershall
Just adding my support. Sounds like you know exactly what should and shouldn't happen - much better placed than the SW acting against your wishes. Stick to your guns, don't worry what others think and as suggested get it all in writing. I do hope that a crisis can be avoided. All the best. Gx

 

[Digilux108]

Hi everyone

My dad has Lewy Bodies Dementia and after a stressful few months of my him being admitted to hospital with a UTI, then agreeing to move to a NH (witnessed by the SW), then realising he hated it and the SW agreeing he can move back home - despite my objections - it looks as if it is happening.

After not meeting the criteria for DoLS (assessed yesterday), he has been assessed by a care company and are in the process of arranging a date to go home.

I do not want him to return home. His neurologist is not keen on this decision. His specialist nurse thinks he should be in a NH. The carers at the home think he will struggle at home on his own even with a care package. The SW says he has capacity and that is that. Basically, I have been told that I need to let him go home as he wishes and allow a crisis to happen again - before it can be considered for him to go back to a NH, and he may not even agree to it then!

I have firmly advised the SW that I will not be involved in his care package, that this needs to be agreed between my dad, the care company and if required assisted by SS. I have refused to get involved with his medication and the organisation of blister packs from the pharmacy. I will not be assisting if he needs additonal aids once he returns home - the SW needs to sort this. And, I will not be involved in any financial agreement, the SW needs to sort this also. I have agreed to take him shopping for his weekly shop, but nothing else.

My question, am I acting like a spolit teenager who hasn't got her own way for refusing to help ? (I believe I was near a breakdown earlier in the year with all of his care needs, hospital appointments, looking after the garden, doctors, medication, his challenging behaviour, sulks- the list goes on and on). Or am I doing the right thing and stepping away from this situation ? I will still be looking in from the outside as I will be his only emergency contact (brother doesn't want to know). I'm trying to stick to my guns and stay away but don't want people to think bad of me either. I am having difficulty reconciling all of this

Did your father clearly express his wishes that he wanted to go home to the SW? It sounds like the SW may be acting on the principle concerning respecting a patient's wishes. However, he or she may be acting independently of your father's wishes. In other words, without consent. Have you asked the SW to justify this decision? Saying that your "father has capacity" and "that is that" is simply not enough. Are we talking about mental capacity?

The overriding principle here has to be your father's safety. Unless the package includes a live in carer, there may be the possibility of exposing your father to some serious harm and so I would assert yourself with the SW. I realise that this stressful for you, given that you appear to be handling this on your own without help from your brother, but it is important that you stick to your guns because, as we know, SW's are not always right. I was a carer for my mother, and I used respite care some times when I really needed a break. The respite was arranged through Social Services, but they ****** things a couple of times, and so they are not infallible.

The British Medical Association and General Medical Council (as does the law) have clear guidelines on things like this and it might be useful for you to seek further clarification and guidance on the matter before going back to the SW.

 

[bumblefeet]

Hi everyone

My dad has Lewy Bodies Dementia and after a stressful few months of my him being admitted to hospital with a UTI, then agreeing to move to a NH (witnessed by the SW), then realising he hated it and the SW agreeing he can move back home - despite my objections - it looks as if it is happening.

After not meeting the criteria for DoLS (assessed yesterday), he has been assessed by a care company and are in the process of arranging a date to go home.

I do not want him to return home. His neurologist is not keen on this decision. His specialist nurse thinks he should be in a NH. The carers at the home think he will struggle at home on his own even with a care package. The SW says he has capacity and that is that. Basically, I have been told that I need to let him go home as he wishes and allow a crisis to happen again - before it can be considered for him to go back to a NH, and he may not even agree to it then!

I have firmly advised the SW that I will not be involved in his care package, that this needs to be agreed between my dad, the care company and if required assisted by SS. I have refused to get involved with his medication and the organisation of blister packs from the pharmacy. I will not be assisting if he needs additonal aids once he returns home - the SW needs to sort this. And, I will not be involved in any financial agreement, the SW needs to sort this also. I have agreed to take him shopping for his weekly shop, but nothing else.

My question, am I acting like a spolit teenager who hasn't got her own way for refusing to help ? (I believe I was near a breakdown earlier in the year with all of his care needs, hospital appointments, looking after the garden, doctors, medication, his challenging behaviour, sulks- the list goes on and on). Or am I doing the right thing and stepping away from this situation ? I will still be looking in from the outside as I will be his only emergency contact (brother doesn't want to know). I'm trying to stick to my guns and stay away but don't want people to think bad of me either. I am having difficulty reconciling all of this

This could be my life, I'm totally with you on this one. We also have a militant social worker, who insists that my mum told her that she wanted to go home. No witness to this conversation. Mum has been diagnosed as not having Mental Capacity, but never mind, the social worker is clearly in the right.

It's a horrible, stressful time, and no wonder you're near breakdown. Stand your ground, and refuse to provide care. It's just awful that some idiot, claiming to act with the best of intentions, can send home a vulnerable elderly person, despite evidence from other healthcare professionals, against the wishes of family who have seen this person decline.
I hope that this goes well for you, and that you get the result that you long for.

 

[Jessbow]

What is the hardest thing to do for our loved one with dementia? NOTHING!

It WILL be hard, but be strong, and only do exactly what you agree to and no more. The SW will expect it all to be fine and hunky-dory...until the fist of her carers turns up and it isn't.

First thing they will do is call you - and again, be strong. Carer needs to inform duty social worker and sort it out.

It will be a long lived through few days, but it sounds like a few days is all it will take.

First things will be he is fit for discharge- Who is going to accompany him, put the heating on, and make sure he has the basics in? BE STRONG! Tell the ward to inform the social worker. She will no doubt ring you so be ready to state your line '''I would far rather he went to a nursing home, So no, as I don't agree with him going home so I wont help facilitate it''

Thinking of you x

 

[jugglingmum]

You need to be strong as Jessbow says - and do absolutely nothing.

I followed your previous thread as well - it is one of the things about dementia that really gets me - if you left a vulnerable child alone all hell would break loose - but it is fine to leave vulnerable adults alone.

It is horrible - but I think you need to go back to them and say you won't do his shopping either, and let them do the whole shebang, the less you do the quicker it will unravel and your dad will get back somewhere safe. I presume someone is taking him home(NOT YOU), or are they putting him in a taxi on his own with a key - if that is the case it might unravel before he gets through his front door.

 

[Meppershall]

Did your father clearly express his wishes that he wanted to go home to the SW? It sounds like the SW may be acting on the principle concerning respecting a patient's wishes. However, he or she may be acting independently of your father's wishes. In other words, without consent. Have you asked the SW to justify this decision? Saying that your "father has capacity" and "that is that" is simply not enough. Are we talking about mental capacity?

The overriding principle here has to be your father's safety. Unless the package includes a live in carer, there may be the possibility of exposing your father to some serious harm and so I would assert yourself with the SW. I realise that this stressful for you, given that you appear to be handling this on your own without help from your brother, but it is important that you stick to your guns because, as we know, SW's are not always right. I was a carer for my mother, and I used respite care some times when I really needed a break. The respite was arranged through Social Services, but they ****** things a couple of times, and so they are not infallible.

The British Medical Association and General Medical Council (as does the law) have clear guidelines on things like this and it might be useful for you to seek further clarification and guidance on the matter before going back to the SW.

Thankyou Digilux x It does just seem to all hang on the fact that the SW believes my Dad has the capacity to make this decision for himself. The DoLS assessor pretty much said the same, capacity is hard to judge, but as long as the SW believes he has it then he can say where he wants to live. Clealrly, when he has been visited by all of these people they have caught him on a good day, cause if they had visited last Thursday they would have found a pathetic old man, slumped in a chair, mumbling and talking nonsense, hallucinating and covered in bruises where I believe he had fallen out of bed. Typically of this disease though, on Sunday when I went to see him he was his usual nasty, feisty self, accusing me of stealing from him and interfering in his life. I simply feel as if I can't win in this situation, and I'm losing the will to fight

 

[Meppershall]

You need to be strong as Jessbow says - and do absolutely nothing.

I followed your previous thread as well - it is one of the things about dementia that really gets me - if you left a vulnerable child alone all hell would break loose - but it is fine to leave vulnerable adults alone.

It is horrible - but I think you need to go back to them and say you won't do his shopping either, and let them do the whole shebang, the less you do the quicker it will unravel and your dad will get back somewhere safe. I presume someone is taking him home(NOT YOU), or are they putting him in a taxi on his own with a key - if that is the case it might unravel before he gets through his front door.

Oh jugglingmum, it's all so hard. I will take him home and settle him in, but then I'm off to let the carers deal with him - even though this is all happening against my better judgement, I do feel I have to do that and get him home safely. I don't get on with my dad particularly, but I don't want any more guilt on my shoulders than is necessary. x

 

[CeliaW]

Meppershall, I do appreciate how you feel but you may well find that by taking him home you are deemed as being accepting of /complicit in his discharge. This could cause you future problems in objecting. Hugs, how difficult for you xx

 

[Meppershall]

This could be my life, I'm totally with you on this one. We also have a militant social worker, who insists that my mum told her that she wanted to go home. No witness to this conversation. Mum has been diagnosed as not having Mental Capacity, but never mind, the social worker is clearly in the right.

It's a horrible, stressful time, and no wonder you're near breakdown. Stand your ground, and refuse to provide care. It's just awful that some idiot, claiming to act with the best of intentions, can send home a vulnerable elderly person, despite evidence from other healthcare professionals, against the wishes of family who have seen this person decline.
I hope that this goes well for you, and that you get the result that you long for.

Bless you Bumblefeet, I've seen your posts and have idenitified with them completely. What frustrates me the most, is that the medically qualified professionals opinions hold no weight against the LA and SW's. I do not understand how that can be. It just baffles me completely.

I am so empowered by all of the posts here, you have all absolutley backed me and I can't tell you how much that means. It's really difficult dealing with this on my own - I know I'm capable but sometimes you just need re-assurance from others who have gone through this/are going through this, in order to help. All of your experiences and opinions are more valuable than those of any professional I have come across to date. Thankyou so much x