I'm just desperate

[DesperateofDevon]

make sure that the hospital staff know that the SW has said that you cant use her account to buy things for her as she has capacity, so, no, you wont be buying the pants for her.

They are still assuming that you will be doing things for her. Keep telling them that you wont.

Yes emailed across to all concerned stating facts !
Lovely advice from all & great advice from Dementia Hotline
Seems that no one is going to do anything until they see we aren’t .
Duty of care letters of complaint to medical board next
Hoping for miracle & emergency care at home package but it’s not looking hopeful

It’s very quiet here at the Alamo!

 

[DesperateofDevon]

Dear @DesperateofDevon.....I'm sorry I can't give you any advice, I'm not in the Uk, but I had to stop and send you a hug, we're having the same frustration with authorities showing very little common sense (or even having actually listened to us!).....try not to pull too much of your hair out, it's not a good look!

How lovely of you
Hugs back
Hair very curly & thick but greying fast !
Natural highlights!
‍

 

[DesperateofDevon]

Hi there,
I found myself in a similar situation with my Dad.
Too cut a long story short I ‘advised’ the hospital that they couldn’t discharge him until an appropriate care package was in place for him. Then came the battle with SS. It prolonged his hospital stay by 5 days but the right care package was put in place.
You must stand your ground, both the hospital and SS have a duty of care to your mother.
It’s a battle and I was reduced to tears in many occasions but you have to persist.
Best wishes

 

[DesperateofDevon]

Thank you
Have done emails to all relevant parties - as phone calls not making any difference
Advice much appreciated

 

[DesperateofDevon]

Welcome to Dementia Talking Point @DesperateofDevon

I’m sorry you’ve found yourselves in this situation. It’s one I found myself in last summer with my dad after he had a stroke and was completely unsuitable for discharge. The hospital said he was medically fit and discharged him anyway. He was then returned to hospital the next day...and again they tried to discharge him.

I got in touch with NHS PALS and they were very helpful in communicating my concerns regarding dad being discharged home with a care package of 4 visits a day as I felt that because he was getting up and falling, incontinent and unable to do anything for himself that this was not sufficient to keep him safe.

You are in a strong position at the moment so stand your ground and do not let them have the keys. It doesn’t sound to me as though your mum should be on her own but you will need to stay strong.

Have you spoken to the hospital social worker? (PALS should be able to help you with this too). I found ours to be very knowledgeable and helpful and she managed to get dad an assessment bed in a carehome which eventually lead to a permanent place although I had to fight for that too.

Make it clear that you are not able to look after your mum and you will hold them responsible if anything happens to her.

Thank you have followed all advice now waiting for replies from relevant authorities
This forum has been a life saver
It’s only when you are so desperate that you reach out
So many going through the same thing
How sad
Thank you for your time & advice it can feel lonely doing this year in year out & I have it easy compared to some
X

 

[DesperateofDevon]

Welcome to Dementia Talking Point @DesperateofDevon

I’m sorry you’ve found yourselves in this situation. It’s one I found myself in last summer with my dad after he had a stroke and was completely unsuitable for discharge. The hospital said he was medically fit and discharged him anyway. He was then returned to hospital the next day...and again they tried to discharge him.

I got in touch with NHS PALS and they were very helpful in communicating my concerns regarding dad being discharged home with a care package of 4 visits a day as I felt that because he was getting up and falling, incontinent and unable to do anything for himself that this was not sufficient to keep him safe.

You are in a strong position at the moment so stand your ground and do not let them have the keys. It doesn’t sound to me as though your mum should be on her own but you will need to stay strong.

Have you spoken to the hospital social worker? (PALS should be able to help you with this too). I found ours to be very knowledgeable and helpful and she managed to get dad an assessment bed in a carehome which eventually lead to a permanent place although I had to fight for that too.

Make it clear that you are not able to look after your mum and you will hold them responsible if anything happens to her.

Thank you I am grateful for the advice but am so sorry that you have this experience as well
Hopefully I will have positive news before Thursday- at least we have got the extension until a days holiday can be booked!
Can’t imagine Thomas Cook offering this sort of days holiday but who knows could be a market out there .....

 

[DesperateofDevon]

I didn't have your problem with the hospital wishing to discharge my hubby with no regard to ongoing care but I did have problems with one ward in particular. TBH my hubby was in 7 different wards in 6 weeks as there was no where specific for him but this one ward had very little understanding of his needs even tho' I constantly told them they couldn't just place a cup of tea or meal in front of him then clear it away later (I saw this happen). In the end they raised a food and drink chart for him I filled it in at lunch on the Monday went in again Tuesday afternoon and nothing had been added to the chart, no supper, breakfast or lunch entries no drinks either. They were extremely embarrassed when I pointed out that meant they had either totally ignored his food and drink needs or omitted to complete paper otherwise the chart would have have some form of written entry.
In the end I went in at meal times to feed him.
It wasn't until I bandied phrases like 'vulnerable adult' & 'duty of care' & 'safe guarding' they actually took notice.

Thank you for your advice
I have tried contacting the Carers which SW has organised but no reply since leaving messages since Saturday!
Doesn’t bode well !
I keep all information & details now have 4 years worth - one day someone will take note !
Until then ...
thank you

 

[DesperateofDevon]

Another day & another round of phone calls chasing answers from Carers organised by social services for meal time care package

Will they do all the washing generated by Mums incontinence is that part of their remit.

Can’t get hold of Social worker as she won’t return my phone calls even after her office manager has contacted her to call us

As Mums been deemed competent by social services we have been told we can’t use her bank account to access funds to provide extra care for her. As she keeps changing her mind about what she wants !

Mum has historically sent away Carers for herself & my father - please God let it be different this time.
Like a NASA launch the time is ticking down & still we haven’t got any answers !

 

[canary]

They are still assuming that you will be doing everything.

Tell the carers that you are not allowed to make any decisions for your mum as she has been declared competent and direct them back to the SW.
Dont try contacting the SW yourself. Im assuming that they are not getting back to you as they consider your mum to be competent

 

[Sirena]

As Canary says, they are ignoring you because they deem your mother has capacity. As your mother supposedly has capacity you don't need to do anything - then let them see what happens without your input. You have to totally leave them to it and allow it to fail, difficult though that will be.

 

[myss]

As Canary says, they are ignoring you because they deem your mother has capacity. As your mother supposedly has capacity you don't need to do anything - then let them see what happens without your input. You have to totally leave them to it and allow it to fail, difficult though that will be.

I'm at work at the moment and don't use my log in here, but wow what a thread. It's like a bad soap opera scene.

I just logged on to say I so agree with Sirena's post. Good luck to you @DesperateofDevon. You are a star!

 

[DesperateofDevon]

Can anybody hear you scream in cyber space ???
Rang Carers who haven’t had any information not even an address for Mum from social services

Thank god we did not let hospital discharge Mum yesterday as no care package in place until lunchtime Wednesday

Yet sw email states Tuesday!


Care package in place not for incontinence or for delusions

What are these people playing at?

So now sent them confirmation from hospital email on what’s what !

Why is this happening to people all the time

If I could I’d release equity from Mums property & move her near me / pay for care / build a granny flat - but we are not allowed to!

So have chased up Doctors now as it will be their problem when they discharge Mum on Thursday
I think there could be more posts soon....

 

[DesperateofDevon]

They are still assuming that you will be doing everything.

Tell the carers that you are not allowed to make any decisions for your mum as she has been declared competent and direct them back to the SW.
Dont try contacting the SW yourself. Im assuming that they are not getting back to you as they consider your mum to be competent

I have just posted the phone call to Carers
It’s unbelievable
Care package wasn’t in place for original discharge date!
Emailed my mums info over to them as they had no contact details for her or me- not even mums address!!
No medical info
Been told it was a very basic check she’s eating drinking & taking meds!
Carers not happy!

I think I might actually be loosing my sanity as this can’t be real - surely

Not contacting SW anymore

Doctors surgery informed of the latest **** up!

Hopefully as the ball or poor Mum will be bounced back into their court/ duty of care they might have something to say about all this!!

 

[canary]

Stop doing things and stop chasing people up.

The SW thinks that you are the problem. If you remove yourself from the situation completely then they will see the true extent of your mums problems. Let it fail.

 

[DesperateofDevon]

Stop doing things and stop chasing people up.

The SW thinks that you are the problem. If you remove yourself from the situation completely then they will see the true extent of your mums problems. Let it fail.

It’s my Mum..
I’m backing away now but it’s breaking my heart

 

[silversea2020]

Can anybody hear you scream in cyber space ???
Rang Carers who haven’t had any information not even an address for Mum from social services

Thank god we did not let hospital discharge Mum yesterday as no care package in place until lunchtime Wednesday

Yet sw email states Tuesday!


Care package in place not for incontinence or for delusions

What are these people playing at?

So now sent them confirmation from hospital email on what’s what !

Why is this happening to people all the time

If I could I’d release equity from Mums property & move her near me / pay for care / build a granny flat - but we are not allowed to!

So have chased up Doctors now as it will be their problem when they discharge Mum on Thursday
I think there could be more posts soon....

It’s quite unbelievable what you’re going through.....disgraceful show of affairs isn’t it! I think definitely take a firm step backwards away from it all (and that’s hard)... only when things fail will SS take action - good luck & keep posting

 

[DesperateofDevon]

It’s quite unbelievable what you’re going through.....disgraceful show of affairs isn’t it! I think definitely take a firm step backwards away from it all (and that’s hard)... only when things fail will SS take action - good luck & keep posting

I will if I can see the keypad through tears!
Thank you all for the support
X

 

[DesperateofDevon]

They are still assuming that you will be doing everything.

Tell the carers that you are not allowed to make any decisions for your mum as she has been declared competent and direct them back to the SW.
Dont try contacting the SW yourself. Im assuming that they are not getting back to you as they consider your mum to be competent

Ok I am goi g to really try to sit back
Thank you
I am listening to the advice

 

[canary]

I’m backing away now but it’s breaking my heart

Of course it is. I would hate to have been in this position too. Unfortunately, if you have been seen as being the problem you have to let them see that it isnt you. Stepping back will show them the true picture quicker. If you are plugging the gaps your mum s problems are not seen and you are still being blamed, so the situation goes on for longer. You have to shine a cruel spotlight on your mums problems so that they are seen. Its a question of having to be cruel to be kind.

Let everyone know that you would like to help, but as your mum is considered to have capacity, you are not allowed to. Be prepared to pick up the pieces quickly when it all goes pear shaped.

 

[DesperateofDevon]

I'm at work at the moment and don't use my log in here, but wow what a thread. It's like a bad soap opera scene.

I just logged on to say I so agree with Sirena's post. Good luck to you @DesperateofDevon. You are a star!

Fallen star!
Xx