Mum paying for 24/7 care yet sent to A&E alone and there for almost 6 hours!

[Lulu14]

Is it right for my Mum, who is an advanced dementia sufferer and is paying for 24 hour live-in care to be sent to A&E on her own after passing out at the table after eating her lunch and an ambulance being called? Mum went in the ambulance without a carer or her husband and was in the hospital for over 5 hours and sent home alone too. Mum is doubly incontinent and calls out for her Mum all the time. This incident happened right at the time when a carer change-over was due to take place, hence her going on her own. There was ample time for someone to get to the hospital to be with Mum, yet nobody went to be with her. By the way, she has a husband who does not accept what is happening to Mum, he says she does these things for attention and even told me she had just fallen asleep at the table, he just wanted to call the doctor but the carer insisted on calling 999. My brother and myself (Mum's blood relatives) are not classed as next-of-kin because she is married so her husband is the 'decision maker'. I would welcome any comments you have, thank you.

 

[imnotloony]

Oh, Lulu, what a dreadful ordeal for your poor Mum to go through. Have you spoken to the care company about why the carer who was due to take over didn't go to the hospital to be with your Mum? Sounds like her husband need some advise about what advanced dementia is too. Did the carer who was finishing her shift not inform the company what had happened? Sounds like a bad case of non-communication to me. Hope you get it sorted out.

 

[greenbutterfly]

So sorry to hear about what happened to your mum and family. Our family also uses a 24/7 carer for father in law. We have quickly come to realise that it is not 24 hour care. Evenings are not included in the care, other than 2 night call outs at an extra charge. Also, rightly so, carers are entitled to time off during the day (in our case 2 hours). Not sure what the answer is - don't understand why it is termed 24 hour care?! I hope your family is okay.

 

[LYN T]

Lulu, I would be spitting feathers Ok, so the ambulance arrived at a shift change but one of the Carers should have got to the Hospital ASAP.24/7 care should be just that. Would the care agency talk to you? If so please get some reassurance that this was a mistake and not normal practice.

Does your Mum have a SW or CPN you could perhaps write to and outline that your Mum's Husband is not understanding her illness? I very much doubt that they would be able to make any comment to you but at least they will know about the situation.

Your poor Mum-and you for having the worry

Take care

Lyn T

 

[Lulu14]

Thank you for your reply, that was the first posting I've ever done on this forum so not sure if I'm doing things correctly yet. Very complicated situation as Social Worker has told the Care Company not to talk to me, I'm not even supposed to phone them, I am always told to talk to the Social Worker, all because they work under the Mental Capacity Act and according to that we are not Mum's next of kin, her husband is. Carer changeover was due to happen at exactly the same time as Mum was being taken in ambulance, new carer hadn't arrived and the carer who was due to leave had informed her company of the situation who said Mum's husband should have gone with Mum. The whole situation is a joke. The vision in my mind of my poor Mum all alone in a hospital department for many hours, soiled and crying out for someone is horrifying to say the least, if she was in the A&E department the whole time they certainly wouldn't have had a spare member of staff to sit with Mum. My brother and myself have both complained to the Social Worker about the situation but have had no replies at all. It is just not acceptable and if you heard the whole story of what's been going on in Mum's situation over the last 18 months you would never believe it, we can't believe it ourselves and yet nobody seems to be able to help. We have had five Best Interest Meetings, last year Mum's husband kept telling SS that Mum had to go, they put her in care homes (Mum paying by the way) then her husband would change his mind and want her back home. The last three care homes were supposed to be 'permanent' and we have that in writing but he got Mum back home at the end of March and she's been there since with a live-in carer. So much for Best Interest, each time the decision was made within a short time it was changed back again to suit her husband, I told Social Services perhaps they should have just called the meeting Best Interest for 'his name' instead of Mum's!!

Oh, Lulu, what a dreadful ordeal for your poor Mum to go through. Have you spoken to the care company about why the carer who was due to take over didn't go to the hospital to be with your Mum? Sounds like her husband need some advise about what advanced dementia is too. Did the carer who was finishing her shift not inform the company what had happened? Sounds like a bad case of non-communication to me. Hope you get it sorted out.

 

[Lulu14]

Thanks Lyn, some of your questions I have just answered in a reply to another person who commented on my post if you'd like to read my reply. Everyone involved with Mum knows Mum's husband is a very difficult man, even Mum's allocated Social Worker told us that he will never understand what's happening to Mum. He isn't in denial but is just a very strange and selfish man who is very regimented in his ways and can't stand the intrusion to help Mum, last year he told me he can't stand the prattling women (the carers) coming into the home to help Mum so he would try to stop them coming in and because they had to continue to help Mum he ended up having Mum taken away to a care home. None of us can believe Mum's been at home since March with a live-in carer with him being so anti-social but he tells us he's caught between the devil and the deep blue sea as he can't cope with going to care homes to visit Mum as he so non-social, only yesterday he told me he was in a no-win situation. My brother and I are doing everything we feel is in Mum's Best Interest but when you know Mum's husband is the decision maker it makes me feel the Mental Capacity Act really needs to be looked into and some big changes made, especially about who is next of kin and who makes decisions on behalf of someone with no capacity of their own, all very sad.

Lulu, I would be spitting feathers Ok, so the ambulance arrived at a shift change but one of the Carers should have got to the Hospital ASAP.24/7 care should be just that. Would the care agency talk to you? If so please get some reassurance that this was a mistake and not normal practice.

Does your Mum have a SW or CPN you could perhaps write to and outline that your Mum's Husband is not understanding her illness? I very much doubt that they would be able to make any comment to you but at least they will know about the situation.

Your poor Mum-and you for having the worry

Take care

Lyn T

 

[Lulu14]

Thank you greenbutterfly, there is a two hour break each day for Mum's live-in carer and a relief carer comes every day to be with Mum but lately the Social Worker is saying they might trial cutting that out to which my brother and myself strongly objected, especially after what happened to Mum the other day, if it hadn't been for the carer phoning 999 and Mum's husband saying Mum was asleep at the table goodness knows what would have happened. The live-in carer with Mum is apparently allowed to be woken a couple of times a night if Mum needs assistance but as far as I know this hasn't happened much luckily, well that's if we are told everything which quite often we are not

So sorry to hear about what happened to your mum and family. Our family also uses a 24/7 carer for father in law. We have quickly come to realise that it is not 24 hour care. Evenings are not included in the care, other than 2 night call outs at an extra charge. Also, rightly so, carers are entitled to time off during the day (in our case 2 hours). Not sure what the answer is - don't understand why it is termed 24 hour care?! I hope your family is okay.

 

[Witzend]

I find that quite appalling. My mother has gone to A & E a few times, and once had to be admitted for a broken hip, but they have always sent a carer with her. If we possibly can we always zoom down to the hospital ASAP - thank goodness it's very close - and OH will usually run the carer back while I stay with her, since I know it's not easy for them to spare a member of staff for long. BUT I must emphasise that they do not expect us to do this.

I would be raising a very strong complaint - this is just not acceptable IMO.

 

[Lulu14]

Thank you Witzend, yes it is appalling. Sadly Mum had a fall while residing in one of the care homes last year and the result was a broken hip, she underwent hip replacement surgery the next day, which was terrifying to see happen to Mum but she came through that thank goodness. Luckily the care home was very near to where I live (Social Services had placed Mum near me, almost two hours away from her home to try and stop her husband from keep putting her in and out of homes near him). I had a call one Sunday morning, got to the home in 15 minutes, went with her in the ambulance, spent nine hours with Mum as no way would I have left her and I was even prepared to camp out on the floor next to her bed while Mum stayed in hospital as I was so worried about her. The Manager at the care home said a member of staff would always accompany the resident to the hospital if no family member could get there in time. Sadly once Mum had been moved back to a different care home near where her husband lives (in their jointly owned house) Mum fell again and cut her head open. Nobody from that care home went with Mum in the ambulance that time as that care home was quite short staffed and they said it wasn't their policy as once a resident was in the ambulance and off to hospital they would be the NHS's responsibility!! Again Mum spent hours alone in the hospital, her husband went and stayed with her for a while but then left her there because he wanted to go home for for his dinner. Now, a year later it has happened again, yet Mum's under the same social services team as she was a year ago and these things are still happening. My brother and I have been tempted many times to go to the papers or television, there must be hundreds of old people being treated like this, it is so very wrong.

I find that quite appalling. My mother has gone to A & E a few times, and once had to be admitted for a broken hip, but they have always sent a carer with her. If we possibly can we always zoom down to the hospital ASAP - thank goodness it's very close - and OH will usually run the carer back while I stay with her, since I know it's not easy for them to spare a member of staff for long. BUT I must emphasise that they do not expect us to do this.

I would be raising a very strong complaint - this is just not acceptable IMO.

 

[Jessbow]

So should the change over have been immediate or is their a time gap between carers?

Sad thing is, it really should be her husband that goes with her, and if he refuses...

You really are in a difficult place.

I really would be tempted to ring adult care services and talk about a vunerable adult - the care her husband is metering out is not good and there must be a way to get someone on your side ( without them assuming its a case of you just not liking him)

 

[Lulu14]

Thanks Jessbow, there's no time gap between carers, a new one arrives and the one who's been there for so many weeks leaves, never a time when there's no live-in carer in the house (or so I'm led to believe!). Yes, we all agree that her husband should go with her but he doesn't see why he should and if anything interferes with his routine, like his dinner time etc then no way will he put himself out for anything. There is quite a team of people involved and we were convinced there can't be many situations like Mum's but after reading through many postings on Talking Point I can see there are many people with very similar situations especially when their loved one is in a care home which is why we hope Mum can stay at home for as long as possible but we know there will come a time, either through her deteriorating or her money running out when we will have to see her go back into a home, although we are told it will be a 'nursing home' next time not a residential care home like the five she was placed in last year. I have over 1,500 emails since May 2013 between myself, my brother, SS and other professionals, it is mind blowing what the law allows to happen to a vulnerable adult who has lost capacity, it is very scary what can happen and nobody can do anything to change things all because of the Mental Capacity Act, all we want is for Mum to be cared for properly and not ever left on her own, that just shouldn't happen and especially when she is paying for 24/7 care! We have done what you suggest and spoken to all sorts of professionals from lots of different departments, even Solicitors but everything is geared around the fact that Mum's married and she has money and the Mental Capacity Act controls everything, it's not right and we know Mum would be horrified if she knew what was going on, quite scary to think what can happen in the future to any one of us

So should the change over have been immediate or is their a time gap between carers?

Sad thing is, it really should be her husband that goes with her, and if he refuses...

You really are in a difficult place.

I really would be tempted to ring adult care services and talk about a vunerable adult - the care her husband is metering out is not good and there must be a way to get someone on your side ( without them assuming its a case of you just not liking him)

 

[WILLIAMR]

Is it right for my Mum, who is an advanced dementia sufferer and is paying for 24 hour live-in care to be sent to A&E on her own after passing out at the table after eating her lunch and an ambulance being called? Mum went in the ambulance without a carer or her husband and was in the hospital for over 5 hours and sent home alone too. Mum is doubly incontinent and calls out for her Mum all the time. This incident happened right at the time when a carer change-over was due to take place, hence her going on her own. There was ample time for someone to get to the hospital to be with Mum, yet nobody went to be with her. By the way, she has a husband who does not accept what is happening to Mum, he says she does these things for attention and even told me she had just fallen asleep at the table, he just wanted to call the doctor but the carer insisted on calling 999. My brother and myself (Mum's blood relatives) are not classed as next-of-kin because she is married so her husband is the 'decision maker'. I would welcome any comments you have, thank you.

I must say the home my mother was in tried to send a carer to A & E with every resident.
That said a relative tended to take over where possible.
Unfortunately one day they had to send 8 residents to A & E which was extreme and 3 different hospitals were involved.
The home did not have that many carers to spare which is understandable.
They managed to get hold of 2 on their day off. It was fortunate they lived close to the home and they were in a position to get there in minutes.
The home manager also went with one of the residents.
One resident was sent to the hospital on his own in the ambulance with 999 staff but a carer moved to him when the relatives of another resident arrived.

For information my step mother was on CHC funding.
There was a notice in the home saying if a resident had to be accompanied by a carer to an appointment a charge or £11.50 an hour would happen.
When my step mother was taken to the hospital on her final day a carer went with her as the son and myself were an hour away.
After her death I asked if we owed any money but the home said this charge did not apply to an emergency situation which could not be foreseen.

William

 

[halojones]

Hi lulu, i am sad to read your story, your poor mum, and what a terrible worry for you... I would advise you to get legal advice about your mum and the fact that her husband is making these wrong decisions for her, he is not fit to look after her, not with this terrible illness..He is the main problem here and it needs addressing.. Get the s.w. onside, make a diary about everything that is happening, get advice from AGE UK, ALz society, mums gp, the carers centre, your MP do whatever you can, you need all these people onside and aware that your mums best interests are not being met...you can get a bit of legal advice from the above organisations, and they will recommend a solicitor in your area if you can afford to pay.. Her husband should have gone with mum to the hospital(so should the carer) ,but he was there and he should have looked after her, and his terrible behaviour of putting her in and out of homes.....The trouble with the SS, is they will just leave well alone if they can, you have to get clever, get a voice and be heard..you will need legal advice..!.I think the best you can do is get mum into a safe and settled c.h. where he cannot remove her..I hope you can get your mum looked after how you wish..Good Luck x

 

[Lulu14]

Thank you for your comment William, it is scary to read what you said about all those poor people having to go to the hospital but it sounds like that particular care home did everything they could to be with each person. I am pleased they didn't charge you the £11.50 for your step-Mum's sad final trip to the hospital, that would have seemed so uncaring but I know some homes would charge the fee as the way they see things is that they are a business at the end of the day!

I must say the home my mother was in tried to send a carer to A & E with every resident.
That said a relative tended to take over where possible.
Unfortunately one day they had to send 8 residents to A & E which was extreme and 3 different hospitals were involved.
The home did not have that many carers to spare which is understandable.
They managed to get hold of 2 on their day off. It was fortunate they lived close to the home and they were in a position to get there in minutes.
The home manager also went with one of the residents.
One resident was sent to the hospital on his own in the ambulance with 999 staff but a carer moved to him when the relatives of another resident arrived.

For information my step mother was on CHC funding.
There was a notice in the home saying if a resident had to be accompanied by a carer to an appointment a charge or £11.50 an hour would happen.
When my step mother was taken to the hospital on her final day a carer went with her as the son and myself were an hour away.
After her death I asked if we owed any money but the home said this charge did not apply to an emergency situation which could not be foreseen.

William

 

[Lulu14]

Thank you halojones, yes it is a big worry for myself and my brother, we have tried everything you mention, we have had all sorts of advice during the last 18 months, you name it and we've been there to ask for help, we have daily contact with the SW and other members of the team yet the way things happen seem to be acceptable for some unknown reason, they always have an answer for everything. We are constantly told it is her husband's decision, everyone we speak to at first says that can't be right as it's not in 'Mum's Best Interest' but everything is always done at his request even though most people involved know it isn't the right thing to do. We are told that because Mum has money her husband is the decision but if she had no money then the Social Services team would be the decision makers. So I've learned one thing out of this.........don't end up getting old with any amount of money which is supposed to make life easier because if you lose capacity then they will take it off you to pay for everything and yet the care you will get isn't always what it should be, no way should Mum have spent five or six hours alone during her recent hospital visit, they had plenty of time to get someone there to be with her.

Hi lulu, i am sad to read your story, your poor mum, and what a terrible worry for you... I would advise you to get legal advice about your mum and the fact that her husband is making these wrong decisions for her, he is not fit to look after her, not with this terrible illness..He is the main problem here and it needs addressing.. Get the s.w. onside, make a diary about everything that is happening, get advice from AGE UK, ALz society, mums gp, the carers centre, your MP do whatever you can, you need all these people onside and aware that your mums best interests are not being met...you can get a bit of legal advice from the above organisations, and they will recommend a solicitor in your area if you can afford to pay.. Her husband should have gone with mum to the hospital(so should the carer) ,but he was there and he should have looked after her, and his terrible behaviour of putting her in and out of homes.....The trouble with the SS, is they will just leave well alone if they can, you have to get clever, get a voice and be heard..you will need legal advice..!.I think the best you can do is get mum into a safe and settled c.h. where he cannot remove her..I hope you can get your mum looked after how you wish..Good Luck x