Left to fight on my own

[tryingtobesuperwoman]

Apologies in advance, this will be a long post.

Brief background:

Husband was admitted to a mental health hospital last Spring due to an overdose where he was diagnosed with vascular dementia - due to a major stroke in June 2020, and behavioural problems since then. A DOLS order was in place whilst he was in hospital in 2020.

Discharged home June 2023 under Section 117 aftercare. Emergency respite needed December 2023 for 2 weeks.

Due to behavioural issues emergency respite started April 2024 where he remains today.

CPN visited the care home a few weeks ago to tell him that he wouldn't be coming home and supported accommodation would be best. Husband didn't deal with this well and rang me constantly very upset. He has since forgotten the conversation believing he will come home.

Fast forward to last Tuesday where the Social Workers carried out an assessment at the home. This is the first time they have met him. The CPN and care home nurse were present. Care Home stated he would find it difficult to cope at home and the set routines were good for him.

Social Worker asked husbands wishes, he said he wants to come home. That was taken as a clear intention so legal advice to be sought as I said I couldn't cope and wouldn't agree to a trial period at home. CPN stated that would set us up to fail and could last possibly for just a few hours.

Spoke to CPN on the telephone this morning. Next date for the meeting tbc but possibly next Wednesday. He advised that the Social is seeking legal advice and that it would be up to me to tell my husband that he can't come home. He saw my husband in the home yesterday and said he was fine.

I questioned why he told my husband he couldn't come home previously and that it's at odds with what's happening now. His reply was that was then and husband is presenting differently now.

I'm sat here in tears, fearful of what will happen next week. Their support has been withdrawn and it's now all on my shoulders.

Any advice will be greatly appreciated.

 

[Kevinl]

Please never think that what you say goes unheard, just difficult to know what to say sometimes I fin, other than keep posting. K

 

[tryingtobesuperwoman]

Please never think that what you say goes unheard, just difficult to know what to say sometimes I fin, other than keep posting. K

Thank you

 

[Izzy]

I’m so sorry to hear about your situation @tryingtobesuperwoman. It must be really distressing for you. I wondered if it would help to all the Admiral Nurse Helpline for a chat with someone there -

Admiral Nurse Dementia Helpline

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

 

[SAP]

I think the most important thing is to stick to your guns and refuse to have your husband home as you are not in a position care for him.
Social services are being super cautious these days and ensure that residents where mental capacity is seen as being in existence, they want any form of forced residential care to be water tight. Your husband has stated he wants to come home,they need to be sure he should remain in care. One factor could be that he would need 24/7 supervision and you will not be able to provide that and there is a safe guarding risk due to the behavioural factors.
No carer should be made to feel fearful, it boils my blood when professionals faff about and leave families in a void.

 

[tryingtobesuperwoman]

I’m so sorry to hear about your situation @tryingtobesuperwoman. It must be really distressing for you. I wondered if it would help to all the Admiral Nurse Helpline for a chat with someone there -

Admiral Nurse Dementia Helpline

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

Thank you, I will give them a call, need all the help I can get

 

[Kevinl]

We're always here to help if we can, just chuck the houses keys on the table and say you're off on holiday.
Patient poker was how one social worker once described it to me, not long after she quit the job, it's not something I'd want to do for a living and I say that as a former NHS nurse, social work must be harder.
As has been said stand your ground, maybe I got lucky, maybe men aren't expected to be able to cope in a way that women are.
I have nothing but praise for the help I was offered with wife and mum, not that I always took it but it was there if I needed it. K

 

[Rayreadynow]

If the Social Services assess that you are in a position to pay for care then there really is no incentive for them to get involved as the organising is put in your hands in order to give you a choice of care home, however you can request that they provide you with a list of providers. If you feel you are not equipped to do this physically or mentally then tell them this and I am sure they will have to give you more than just a list of providers, but make it clear to them you can no cope, but they may charge you for this.

I would recommend contacting Admiral Nurse requesting an call back to discuss anything you feel.

 

[tryingtobesuperwoman]

If the Social Services assess that you are in a position to pay for care then there really is no incentive for them to get involved as the organising is put in your hands in order to give you a choice of care home, however you can request that they provide you with a list of providers. If you feel you are not equipped to do this physically or mentally then tell them this and I am sure they will have to give you more than just a list of providers, but make it clear to them you can no cope, but they may charge you for this.

I would recommend contacting Admiral Nurse requesting an call back to discuss anything you feel.

Hi, yes, I'm going to contact Admiral Nurse.

He is under S117 aftercare after his time in a mental hospital so care home fees are paid by social services and the NHS. This, I believe, is their reason for wanting to send him home.

I certainly cannot cope anymore and will make this very clear when I next hear from the Social Worker. It's just fight after fight and seems never-ending.

 

[tryingtobesuperwoman]

I think the most important thing is to stick to your guns and refuse to have your husband home as you are not in a position care for him.
Social services are being super cautious these days and ensure that residents where mental capacity is seen as being in existence, they want any form of forced residential care to be water tight. Your husband has stated he wants to come home,they need to be sure he should remain in care. One factor could be that he would need 24/7 supervision and you will not be able to provide that and there is a safe guarding risk due to the behavioural factors.
No carer should be made to feel fearful, it boils my blood when professionals faff about and leave families in a void.

Thanks. It does seem carers have to over breaking point. I'm willing to walk away for my own mental health but hope it doesn't come to that.

 

[julianac]

If the Social Services assess that you are in a position to pay for care then there really is no incentive for them to get involved as the organising is put in your hands in order to give you a choice of care home, however you can request that they provide you with a list of providers. If you feel you are not equipped to do this physically or mentally then tell them this and I am sure they will have to give you more than just a list of providers, but make it clear to them you can no cope, but they may charge you for this.

I would recommend contacting Admiral Nurse requesting an call back to discuss anything you feel.

Surely very few people are in a position to afford care home fees?

 

[My Mum's Daughter]

Surely very few people are in a position to afford care home fees?

Many of us have sold our parent's home to cover the fees.

 

[SAP]

Surely very few people are in a position to afford care home fees?

Many home owners do indeed have to pay for all of their care by selling property or using any savings and assets if they are over the£23,500 limit.

 

[Chizz]

Hi, yes, I'm going to contact Admiral Nurse.

He is under S117 aftercare after his time in a mental hospital so care home fees are paid by social services and the NHS. This, I believe, is their reason for wanting to send him home.

I certainly cannot cope anymore and will make this very clear when I next hear from the Social Worker. It's just fight after fight and seems never-ending.

Hi @tryingtobesuperwoman
My thoughts from what you have posted:
You are not legally obliged to look after your OH. The SS are responsible at the end of the day for his care and safety.
Do NOT put yourself in a position that you cannot deal with or cope with or that may put you in danger or fear of danger, abuse or violence.
Make it known to them that you cannot and will not take this on. Then they have to.
Your OH will be far better off with professional carers looking after him, who have had training and experience in dealing with such case.
Stay strong. Do not be put upon. You have a life too!
Best wishes

 

[tryingtobesuperwoman]

Hi @tryingtobesuperwoman
My thoughts from what you have posted:
You are not legally obliged to look after your OH. The SS are responsible at the end of the day for his care and safety.
Do NOT put yourself in a position that you cannot deal with or cope with or that may put you in danger or fear of danger, abuse or violence.
Make it known to them that you cannot and will not take this on. Then they have to.
Your OH will be far better off with professional carers looking after him, who have had training and experience in dealing with such case.
Stay strong. Do not be put upon. You have a life too!
Best wishes

Thank you Chizz, that's just what I needed to hear, much appreciated. It's hard to stay strong sometimes but I'm going to need to be for the next few weeks. I'm hoping, in a few months, I can look back and say I did everything I could.

 

[SAP]

Well if he is on 117 aftercare then the assumption is that he is not better or now more capable of looking after himself. Therefore he needs specific care from professionals ,you are not the professional and do not have the necessary training or back up support. When it came to choosing a home for my mum using 117 aftercare funding, I told the sw to crack on with it because it was not my area of expertise and I did not have known of what homes could provide the care needed. I then stopped answering my phone! They soon found her a home and she is being very well cared for.

 

[tryingtobesuperwoman]

Well if he is on 117 aftercare then the assumption is that he is not better or now more capable of looking after himself. Therefore he needs specific care from professionals ,you are not the professional and do not have the necessary training or back up support. When it came to choosing a home for my mum using 117 aftercare funding, I told the sw to crack on with it because it was not my area of expertise and I did not have known of what homes could provide the care needed. I then stopped answering my phone! They soon found her a home and she is being very well cared for.

Thank you for sharing x

 

[tryingtobesuperwoman]

Am I right in thinking that I don't have to care for my husband at home? Do the local authority have to take responsibility?

 

[Bod]

Yes you are correct.
Be strong in your mind that you cannot cope.

Bod

 

[SAP]

You said in your original piece that :-

Husband was admitted to a mental health hospital last Spring due to an overdose where he was diagnosed with vascular dementia - due to a major stroke in June 2020, and behavioural problems since then. A DOLS order was in place whilst he was in hospital in 2020.

Discharged home June 2023 under Section 117 aftercare. Emergency respite needed December 2023 for 2 weeks.

So was your husband in hospital from June 2020 until June 2023? I think I’ve not read that correctly.
Having a DOLS and being sectioned are two different things. With a DOLS in place , there would be no need for a section 3 to have happened. So I am assuming that he was under the DOLS when he was admitted in 2020 , he was then discharged home but due to behavioural issues he was admitted again but this time under section 2 and then section 3 ? Section 3 automatically triggers section 117 aftercare either at home or in residential care. If at home it means that care put in place could be :-

• healthcare
• social care and employment services
• supported accommodation
• services to meet your social, cultural and spiritual needs – as long as they meet a need that arises from or is related to your mental condition and help reduce the risk of your mental condition getting worse.

Given that every time he has been discharged home his condition has gone from stable to being readmitted, I.e. got worse, I don’t think the sw has a leg to stand on. If you refuse point blank to provide any care whatsoever, how can he possible come home. No one can “make” you care for him and without care for a significant portion of the day he will have to be readmitted …..again.
Say you will out of the house most of the day and that you may not sleep there some nights. Like @Bod says stick to your guns.