Hi, my mother has early onset dementia - she is 64 and can no longer do anything for herself. 2 weeks ago we moved her into a care home to give my father some respite. The care home have now said they can't cope with her needs unless my father pays £2,200 PER WEEK for one to one care...... this is absolutely absurd. Has anyone else come across this type of demand for 1 to 1 care.... she has to come home on 1 August as there is no way in a million years anyone can afford nearly £9,000 per month for a care home.... what are we supposed to do now? Any advice would be gratefully received.... thank you.
Problems with 1 to 1 care in a care home.....
- Thread starter VIB35
- Start date
Hi VIB35
I empathise with early onset dementia problems - my Jan was 50 when her dementia surfaced and she had to go to a care home when she was 61, and is still there.
What are your mother's care needs and condition at present?
Do you have any idea of why in particular the care home can't cope?
Is the home a specialist dementia home - EMI type?
A possible element may be that the home simply can't cope with your mother and are using this to 'encourage' you to move her, something you may have to do on financial grounds anyway. Her care needs may not actually require quite that amount of care.
Sorry it is all questions really at the moment, and you will probably have to ask a good few yourself to find out the why's and wherefore's.
Has there been any mention of NHS Continuing Care?
As far as I know, this is the only way that such massive care costs can be accommodated.
NHS Continuing Care at any level at all is not easy to get, and is subject to the usual postcode problems and seeming whims of local health organisations. To get NHS Continuing Care with 1 to 1 care is yet rarer, but it does happen.
The amount you quote is very large for us to envisage, but it comes to something like £14 an hour if my back of mental envelope calculation serves me correctly. 1 to 1 care in our experience means someone dedicated to the person and within 3 feet of them all day, and generally making regular checks at 15 minute intervals overnight. I was quoted £15 an hour once when I enquired about getting some extra care for my wife - this was agency fees. Regular care home staff get a lot less.
I hope someone else can be more helpful - I am trying to understand the actual care needs your Mum has.
I empathise with early onset dementia problems - my Jan was 50 when her dementia surfaced and she had to go to a care home when she was 61, and is still there.
What are your mother's care needs and condition at present?
Do you have any idea of why in particular the care home can't cope?
Is the home a specialist dementia home - EMI type?
A possible element may be that the home simply can't cope with your mother and are using this to 'encourage' you to move her, something you may have to do on financial grounds anyway. Her care needs may not actually require quite that amount of care.
Sorry it is all questions really at the moment, and you will probably have to ask a good few yourself to find out the why's and wherefore's.
Has there been any mention of NHS Continuing Care?
As far as I know, this is the only way that such massive care costs can be accommodated.
NHS Continuing Care at any level at all is not easy to get, and is subject to the usual postcode problems and seeming whims of local health organisations. To get NHS Continuing Care with 1 to 1 care is yet rarer, but it does happen.
The amount you quote is very large for us to envisage, but it comes to something like £14 an hour if my back of mental envelope calculation serves me correctly. 1 to 1 care in our experience means someone dedicated to the person and within 3 feet of them all day, and generally making regular checks at 15 minute intervals overnight. I was quoted £15 an hour once when I enquired about getting some extra care for my wife - this was agency fees. Regular care home staff get a lot less.
I hope someone else can be more helpful - I am trying to understand the actual care needs your Mum has.
You want the Care not pay the Mortgage
Dear Vib35,
I think the price quoted are herrendous. Do you have a Social Worker, CPN ?
Have the Care Home explained how they have come about such a large amount of money ?
My husband is in a E.M.I. Unit and his fees per month roughly what you are expecting to pay per week. Plus my husband has a Carer with him most of the time when he is awake.
Perhaps someone will come on line later with some advice.
Best wishes
Christine
Dear Vib35,
I think the price quoted are herrendous. Do you have a Social Worker, CPN ?
Have the Care Home explained how they have come about such a large amount of money ?
My husband is in a E.M.I. Unit and his fees per month roughly what you are expecting to pay per week. Plus my husband has a Carer with him most of the time when he is awake.
Perhaps someone will come on line later with some advice.
Best wishes
Christine
Hello VIB35
It sounds as if the home does not want the responsibility of care for your mother and feels the only way out is to quote an outrageous fee.
If this is the case, and I do hope I`m wrong, it is a cowardly action and one which would put me off the home for good.
If the home is not prepared to discuss the matter with you, I can only suggest you contact Social Services or the CSCI and see if you can get an explanation from them.
Please let us know what happens.
Love xx
It sounds as if the home does not want the responsibility of care for your mother and feels the only way out is to quote an outrageous fee.
If this is the case, and I do hope I`m wrong, it is a cowardly action and one which would put me off the home for good.
If the home is not prepared to discuss the matter with you, I can only suggest you contact Social Services or the CSCI and see if you can get an explanation from them.
Please let us know what happens.
Love xx
Thank you all for your quick responses. We have had care at home for 12 hrs a day for the past 8 mths or so but the carers at home now feel she is becoming a danger to herself at home in that she trips over rugs, can't manage stairs alone, sits on the sofa and ends up on the floor etc, her spacial awareness has gone. She is not violent, just needs help everything from the loo to eating, drinking, dressing, bathing etc everything really. We had financial assistance via the direct payment scheme but have been told that that stops once the patient is in a care home - you only get it if you are caring for someone at home (which I just don't understand either). The carehome she is currently in is a dementia home newly opened in March so perhaps there are some teething problems. But to price themselves at this level is totally outrageous - I just don't understand why they can't manage Mummy's dementia. She is the youngest patient there with the most advanced dementia (i'm led to beleive). Since she's been in this home (2 weeks) she's had someone with her all day and gets checked every half hour over night. She tends to sleep ok (medication) and is up between 1 and 3 times a night but settles back quickly afterwards. My father only received this news this evening so I am going to call our early onset co-ordinator at Addenbrookes Hospital tomorrow to see what this is all about as if the carehome cannot cope with her needs, how do they expect my father to cope at home with the help of different carers?
Thank you all so much for your help...
Thank you all so much for your help...
update - my father got a call yesterday from the care home saying that he needed to pick my mother up on Friday and take her home as they couldn't provide for her 1 to 1 care. I'm speechless. How can a dementia care home 'discharge' a dementia patient with 2-3 days notice? this decision has been made by management and not by the carers on the floor looking after my mother. Just awful...
Dear VIB35. Your dear mum sounds just like my Lionel when I was caring at home, and I only had a carer in the mornings.
Just thinking aloud here, but if she was having 12 hours a day care at home, she should not have been attempting to climb stairs, or sit herself down without a carer being with her.
Yes, she needs one to one care, but surely that care could be put back in place. That was what the care was being provided for previously, or have I missed the point.
I aam not unsympathetic, as I have been through this experience myself. I did managed to find a care home that would provide the care he needed, albeit at a high cost.
If your mum is not abusive or aggressive, I really fail to see how she cannot be looked after at home, giving the level of timed care you were being provided .
Just thinking aloud here, but if she was having 12 hours a day care at home, she should not have been attempting to climb stairs, or sit herself down without a carer being with her.
Yes, she needs one to one care, but surely that care could be put back in place. That was what the care was being provided for previously, or have I missed the point.
I aam not unsympathetic, as I have been through this experience myself. I did managed to find a care home that would provide the care he needed, albeit at a high cost.
If your mum is not abusive or aggressive, I really fail to see how she cannot be looked after at home, giving the level of timed care you were being provided .
I was thinking that , also did not want to sound unsympathetic so did not say so in my last post.as when my mother got to that stage .
Could not do the stairs to go to bed, they offered my mother a stair lift , as long as I supervised mum in it, but mum was to scared to use it .
So I moved mum single bed into a very large fount room we have. also a walk in shower is going to be built in down stairs toilet . All rugs are removed as mum tends to trip over them .
I also have laminated flooring , so if mum urinate on floor its easy just mop up leaving no lingering smalls .
My mother 76 now , Older then your mother I know , I did not like seeing my mother use it even at that age also my mother hated using a Zimmer frame at the age of 73 , but she gave in, after she had a few falls , so then it help her get around when her spacial awareness started to go really bad , its even getting more worse now that she does not know how to lay in the bed the right way . So I have to guide her to lay down the right way .
Also guild her to sit the right way on her chair.
Dose sound very inhuman as you need more time to get her care packet up ruining at home with your father aging also any adaption that needs to be done .
Last edited:
one 2 one care
i sympathise all the way.is your mum in a dementia/emi unit?the only way these costs they are quoting are plausible if is she is in private care.if she is in the right setting then then i ask have you had a statement of terms and conditions from the home?if they are struggling to attend to her needs then i think you should suggest moving her.see what they say then!
i sympathise all the way.is your mum in a dementia/emi unit?the only way these costs they are quoting are plausible if is she is in private care.if she is in the right setting then then i ask have you had a statement of terms and conditions from the home?if they are struggling to attend to her needs then i think you should suggest moving her.see what they say then!
Me too...
Back when Dad was about 59 (he's now 64) we had virtually the same experience, except we were not given an option of paying for additional care (an understandable amount when you think of the cost per hour of hiring someone to do the job, but an impossible amount for any normal person to be able to afford). Like what has happened to your Dad, my mother got a phone call from the place my Dad was staying at to give her some respite, and they told her she has to come pick him up because they couldn't manage him. Like you, we were astounded because if they couldn't cope with him, trained carers and multiple carers, how ever did they expect my mother to be able to come pick him up and care for him by herself???
At the time, my mother was absolutely cared out and this was the straw that promised to break the camel's back. What you are going through now, is very very tough. At the time, the whole situation seemed so ridiculous to me, I started having ridiculous thoughts of my own...what if I were to swaddle Dad in blankets and dump him on a church door step over night, would somebody care for him then? What if I could manage to frame my Dad for a crime, so that they would put him in prison...at least then he could have the state look after him....Yes, yes I was just being silly, but the situation was so unbelievable!!!
But don't panic yet...I live in Australia, so can't advise who to go to in your country...but I am guessing perhaps social services, or any institution that assists carers where you are...you need to go speak to these people and find out what the true options are. As we found out, it just depends on the home. Some homes can manage people like our parents and some can't. We ended up finding a nearby home, that seemed no different to the other home, but they were prepared to look after someone like Dad with the same number of carers. Hopefully if you can get some advice from someone like social services they will be able to tell you whether there is a suitable home in your area, that provides what they call here in Australa 'high care'.
Best of luck to you, my heart goes out to you and your family,
Back when Dad was about 59 (he's now 64) we had virtually the same experience, except we were not given an option of paying for additional care (an understandable amount when you think of the cost per hour of hiring someone to do the job, but an impossible amount for any normal person to be able to afford). Like what has happened to your Dad, my mother got a phone call from the place my Dad was staying at to give her some respite, and they told her she has to come pick him up because they couldn't manage him. Like you, we were astounded because if they couldn't cope with him, trained carers and multiple carers, how ever did they expect my mother to be able to come pick him up and care for him by herself???
At the time, my mother was absolutely cared out and this was the straw that promised to break the camel's back. What you are going through now, is very very tough. At the time, the whole situation seemed so ridiculous to me, I started having ridiculous thoughts of my own...what if I were to swaddle Dad in blankets and dump him on a church door step over night, would somebody care for him then? What if I could manage to frame my Dad for a crime, so that they would put him in prison...at least then he could have the state look after him....Yes, yes I was just being silly, but the situation was so unbelievable!!!
But don't panic yet...I live in Australia, so can't advise who to go to in your country...but I am guessing perhaps social services, or any institution that assists carers where you are...you need to go speak to these people and find out what the true options are. As we found out, it just depends on the home. Some homes can manage people like our parents and some can't. We ended up finding a nearby home, that seemed no different to the other home, but they were prepared to look after someone like Dad with the same number of carers. Hopefully if you can get some advice from someone like social services they will be able to tell you whether there is a suitable home in your area, that provides what they call here in Australa 'high care'.
Best of luck to you, my heart goes out to you and your family,
