Perplexed with the care system. My mum has dementia.

[Frances61]

Hi, I am new to this forum, and thank you for all the helpful posts on here.
After a bout of illness my mother was admitted to hospital a few months ago. She had been living at home with 4 care visits a day, which was proving inadequate.
Her GP advised me to consider finding her 24 hour care in a nursing home.
She has dementia and is uncooperative with challenging behaviours, selective memory loss and often displays violence.
After the hospital stay (for various acute conditions) she was eventually placed into a nursing home.
Very quickly, due to her extreme reluctance of being in the home (despite numerous meetings and explanations and her agreement) the nursing home applied for an emergency DOLs assessment.
This came through, and after 4 very difficult weeks of refusing food, drink and medication she ended up back in hospital.
The nursing home have now refused her to be discharged back there.
She is on an elderly ward, kicking and screaming (though she requires the assistance of 1 they had to call security today)
The social worker who was originally dealing with her has said it’s not his case any more.
I do not know what alternatives there may be for her future care as she cant just stay in hospital for ever? She does seem extreme with her terrible behaviour.
I have no experience of any of this and the whole situation is completely awful.

 

[Kevinl]

Well hello and welcome first of all.
Worst thing is they could Section her, on a section 2, for 28 day and not renewable then section 3, but that would entitle her to section 117 aftercare funding so all free.
Step back (and I assume you're UK based) and let the system kick in. Don't be too helpful.
How much do I hate saying that, but it it is what it is. K

 

[Arthurgeorge]

So sorry to hear your story. There are plenty of people here who will give you good advice.
Hopefully being in hospital will get her some help, perhaps changing medications, or finding a cause for her agitation.
I guess the original social worker is no longer involved as a hospital social worker has taken over.
She is safe in hospital, so get some rest and recharge.
It is not an easy situation for you And I’m sure you are doing the best you can.
Do not be afraid to ask questions. Best wishes.

 

[Jake's Nan]

Hello 👋 you have a lot going on here and obviously just need someone to help you. Another social worker must be assigned to your mum as they usually put the DoLS order in place. Hoping more people can give you answers, maybe different medication will help calm her and give you the time to find another care home

Hi, I am new to this forum, and thank you for all the helpful posts on here.
After a bout of illness my mother was admitted to hospital a few months ago. She had been living at home with 4 care visits a day, which was proving inadequate.
Her GP advised me to consider finding her 24 hour care in a nursing home.
She has dementia and is uncooperative with challenging behaviours, selective memory loss and often displays violence.
After the hospital stay (for various acute conditions) she was eventually placed into a nursing home.
Very quickly, due to her extreme reluctance of being in the home (despite numerous meetings and explanations and her agreement) the nursing home applied for an emergency DOLs assessment.
This came through, and after 4 very difficult weeks of refusing food, drink and medication she ended up back in hospital.
The nursing home have now refused her to be discharged back there.
She is on an elderly ward, kicking and screaming (though she requires the assistance of 1 they had to call security today)
The social worker who was originally dealing with her has said it’s not his case any more.
I do not know what alternatives there may be for her future care as she cant just stay in hospital for ever? She does seem extreme with her terrible behaviour.
I have no experience of any of this and the whole situation is completely awful.

 

[Arthurgeorge]

PS.
Do not be upset if she is sectioned. It’s just a legal way of helping your Mum get the help she needs.

 

[My Mum's Daughter]

The hospital should appoint a different social worker who will take on your Mum's case. They will know which homes will deal with challenging behaviour and supply you with a short list of places that you can consider. You're unlikely to be given many options and expect that if it's a decent home, they'll have a waiting list.

DOLs is very normal in care/nursing homes. Without this in place, a resident is free to walk out of the door and the staff can do nothing other than call the family/police. Mum had one that was never used but I was comforted that in the unlikely event of an escape, Mum could be escorted back to safety.

Please don't worry about security being called, I've seen it happen and watched them talk a PWD down with no need for physical restraint. There may be a hold of the hand or lower arm, a gentle amount of guidance from a hand on the back but it's mostly done verbally (tea, fancy a cup of tea? Food is on the way, let's go and see what you've got).

As others have mentioned, sectioning may be an option but I've no experience of this.

 

[Frances61]

Many thanks for all the helpful responses. It’s a pity there is no instruction manual for this process as it seems everyone has to find out for themselves and muddle through.
I have to be honest that the dementia which has progressed over the years has meant this poor old woman feels like a family burden. There is nothing nice about her or the whole situation, she absolutely hates me, so the advice to step back seems like a worthy one if not to save a little of my own mental health.

 

[maisiecat]

The hospital should have to restart the process of finding a placement. The social worker who is appointed will contact various homes for them to assess her. There will be detailed notes from the staff. The placement usually hinges on how well the Home can manage overnight as that is when staffing levels are often low. Ironically it is when PWD are usually worse. I was shocked when I read my husband's behaviour reports from overnight at how violent he can be.
Only a really top notch dementia home will be able to manage her needs. My husband is in such a home as all others refused him because of his care needs.
I have watched his Home skillfully turn round PWD with very advanced symptons so please don't despair. They will only section as a last resort but they also can improve things.
Make them do their job to find a place because they do try and push it onto relatives. I was sent to see Homes when he hadn't been assessed by them which is a waste of time.
Nursing homes mostly have DOLS, my husband has one and I am not his representative, but we wander off down the road most days. Its all very light touch.

 

[Bunpoots]

Hello @Frances61 welcome from me too.

It sounds as though the first home w your mum was in was not set up to deal with the sort of aggressive behaviour your mum has been displaying but there are very good homes out there which can cope.
The others are right and the hospital will have to find her a suitable place. My dad was sectioned on a section 2 and had no idea that this had happened to him. It was the best thing that could’ve happened as it took the responsibility of finding a suitable placement away from me. Dad spent his remaining days in a carehome where he was well fed and well looked after.
If you contact the hospital PALs service they should be able to tell you what’s happening with your mum - it’s not always easy to get a straight answer from the ward as everyone is so busy!
I found the hospital social worker to be very kind and efficient once the ball was rolling.

 

[Frances61]

The question for weeks and weeks after her progressing from 4 care visits a day to needing 24 hour care was constantly “is there any family who can do this?”
Really persistent.
I nor any of my siblings are medically trained, we have jobs and mortgages and children to look after. How ever many times I said this I was constantly getting to feel the guilt of saying “no”.
The nursing home was a special dementia home, fully staffed, all medical disciplines available to my mum but it could not meet her needs. Thank you about PALS as Is not thought of that

 

[Violet Jane]

Step back. SS are out of order suggesting that the family do more. They will try to make the family feel guilty and you have to be firm and refuse. It doesn't matter what their opinion of you is. You know your capabilities and limits. Your mother needs specialist care from a team of people in a residential setting.

What medication is your mother taking? Has her medication been reviewed?

 

[Frances61]

Step back. SS are out of order suggesting that the family do more. They will try to make the family feel guilty and you have to be firm and refuse. It doesn't matter what their opinion of you is. You know your capabilities and limits. Your mother needs specialist care from a team of people in a residential setting.

What medication is your mother taking? Has her medication been reviewed?

She refuses her medication. She would not even take a laxative for her constipation last time I called. She was supposed to be on 45mg Mirtazapine but refused. She is in hospital now as she refused antibiotics for a chest infection and had to be taken in for IV antibiotics. As soon as she was in for that the care home said they can not have her back. So she is in a geriatric ward now

 

[Gosling]

Gosh @Frances61 , what an awful turmoil you are going through. As others have said, please do try to use some of this time while your Mum is in hospital to recharge your own batteries a bit.
The situation of trying to find your way through the minefield of a loved one with dementia being admitted to hospital, then essentially, what to do with them whilst there and to discharge them is an emotional rollercoaster - and conflicting information from the 'authorities' as to whose doing what does not help.
Please please do not let them make you feel guilty. They will try and push more and more onto you as a family, if they can, so do all you can to make it clear you cannot. I do so feel for you.

 

[Alisongs]

Hi, I am new to this forum, and thank you for all the helpful posts on here.
After a bout of illness my mother was admitted to hospital a few months ago. She had been living at home with 4 care visits a day, which was proving inadequate.
Her GP advised me to consider finding her 24 hour care in a nursing home.
She has dementia and is uncooperative with challenging behaviours, selective memory loss and often displays violence.
After the hospital stay (for various acute conditions) she was eventually placed into a nursing home.
Very quickly, due to her extreme reluctance of being in the home (despite numerous meetings and explanations and her agreement) the nursing home applied for an emergency DOLs assessment.
This came through, and after 4 very difficult weeks of refusing food, drink and medication she ended up back in hospital.
The nursing home have now refused her to be discharged back there.
She is on an elderly ward, kicking and screaming (though she requires the assistance of 1 they had to call security today)
The social worker who was originally dealing with her has said it’s not his case any more.
I do not know what alternatives there may be for her future care as she cant just stay in hospital for ever? She does seem extreme with her terrible behaviour.
I have no experience of any of this and the whole situation is completely awful.

Well hello and welcome first of all.
Worst thing is they could Section her, on a section 2, for 28 day and not renewable then section 3, but that would entitle her to section 117 aftercare funding so all free.
Step back (and I assume you're UK based) and let the system kick in. Don't be too helpful.
How much do I hate saying that, but it it is what it is. K

Very wise. Mum is now the responsibility of Social Services. Please take advice from a solicitor. They will point you in the direction of a specialist who can advise re DOLS, LPA and Court of Protection

 

[Jessbow]

Very wise. Mum is now the responsibility of Social Services. Please take advice from a solicitor. They will point you in the direction of a specialist who can advise re DOLS, LPA and Court of Protection

Doesnt really need a solicitor. DOLS seems totally appropriate. Too late for LPA, may need COP but maybe not.
Let the hospital SW doe their job. You just keep saying no. They will find her somewhere eventually, although spaces are often few and far between so may have to wait a while. /meanwhile she is fed and watered, and cared for, if on basic level

Dont worry about security- they were probably short handed, Security are usually very kind to the elderly.

Step back, bide your time, They will sort a place out eventually. Sectioning is not a bad thing. Experts in mental health, and usually staffed by nurses that enjoy the challenge

 

[maggie6445]

@Frances61 I'm sorry you are in this position.
I agree with @Jessbow . I don't think you need a solicitor and the DOLS is for your mum's safety.

Keep telling social services and the hospital that you can not look after her and that they have to do their job and accept their legal responsibility for her.

Keep strong x

 

[Alisongs]

Doesnt really need a solicitor. DOLS seems totally appropriate. Too late for LPA, may need COP but maybe not.
Let the hospital SW doe their job. You just keep saying no. They will find her somewhere eventually, although spaces are often few and far between so may have to wait a while. /meanwhile she is fed and watered, and cared for, if on basic level

Dont worry about security- they were probably short handed, Security are usually very kind to the elderly.

Step back, bide your time, They will sort a place out eventually. Sectioning is not a bad thing. Experts in mental health, and usually staffed by nurses that enjoy the challenge

It will do no harm to seek legal advice. If you want any future say in your right to family life, then application to the Court of Protection is indicated, otherwise Social Services will take over all decisions. Hospital Security may USUALLY be very kind to the elderly, but no msnhandling should take place.
I throughly agree that mental health sectioning would be more appropriate. Mental health staff and nurses do not, however, have a remit to "enjoy a challenge". That could be open ended and inappropriate

 

[maggie6445]

@Alisongs , sorry but I think consulting a solicitor may cause harm ,it could aggravate a situation and alienate people who are there to help.

I think using the Admiral nurse ,many hospitals have them now,,and PALs might be a better way to get support.

 

[My Mum's Daughter]

There's no dispute so no reason to consult a solicitor and to run up a large bill for their services.

As many of us have already said, due to the level of aggression displayed by the PWD, the choice of nursing homes is going to be extremely limited. Homes are private businesses so they are able to choose the type of resident they accept and the majority will not accept this level of aggression. No solicitor can change this.

I find that the best approach is to work with the professionals as they have far more experience than me. If you fight them at every given opportunity, the working relationship between you will be destroyed and that's when they're more likely to take over.

It will do no harm to seek legal advice. If you want any future say in your right to family life, then application to the Court of Protection is indicated, otherwise Social Services will take over all decisions. Hospital Security may USUALLY be very kind to the elderly, but no msnhandling should take place.
I throughly agree that mental health sectioning would be more appropriate. Mental health staff and nurses do not, however, have a remit to "enjoy a challenge". That could be open ended and inappropriate

 

[Alisongs]

There's no dispute so no reason to consult a solicitor and to run up a large bill for their services.

As many of us have already said, due to the level of aggression displayed by the PWD, the choice of nursing homes is going to be extremely limited. Homes are private businesses so they are able to choose the type of resident they accept and the majority will not accept this level of aggression. No solicitor can change this.

I find that the best approach is to work with the professionals as they have far more experience than me. If you fight them at every given opportunity, the working relationship between you will be destroyed and that's when they're more likely to take over.

My experience is one of continued breaches of trust and truth. From reading round the Forum I'm pretty sure I'm not alone!