Totally lost and confused

Worrywart 2

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Jul 7, 2015
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I consider myself quite intelligent but feel I am losing the plot. My mother is 76 and has vascular dementia. She is currently in hospital and they want her out, we were told to look for EMI care homes but then they felt she would be ok in an EMI residential home. We found a lovely home. Today mdt state home has to be dual registered as she is likely to deteriorate. There are a few in my area but they are full with waiting lists. The social worker wants her to try one 40 miles away which means she would never see her family. The reason they don't want her going into EMI residential is to avoid a move at a future date as she deteriorates - is this normal practice as surely if that was the case no one would ever go into a dementia residential home as we all know dementia is progressive. Plus there is the funding - the home we like charges £140 per week more than LA rates - my mother has a house but her capital is below the £23, 500 threshold
How does that work? I realise we would have to pay the shortfall out of her savings but what hapoens when her savings run out as it is above what the LA will pay. I'm so confused and alone - can anyone advise please - thank you.
 

turbo

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Aug 1, 2007
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Hello worrywart, Some EMI residential CHs do keep residents even when they need nursing care. Not everyone with dementia needs nursing care even at the end of their life. Perhaps the social worker is being a bit cautious as your mum may not need nursing care.
I'm not sure about the funding aspect but the LA could take over funding and then it could be repaid when your mum's house is sold. 40 miles is a long way for you and your family to travel to see your mum especially if there is somewhere suitable a lot nearer.
 
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Raggedrobin

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Jan 20, 2014
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Hi, it is all a big worry. i don't think it is unreasonable for them to say she should go somewhere where her needs will be met forever, however I would very much question with the LA trying to put her in a home 40 miles away from you, it is reasonable for her to be in a home that is within an easy distance to travel to, otherwise they are depriving her of frequent family contact which she may need.

As to the money, well there is a lot to get your head around. If a home costs more than the LA then a third party - not your mother, has to pay what is known as a 'top up' fee. The other thing you refer to is a deferred payment scheme, where the equity from your mother's home is used to fund her fees initially. This would mean funding all her fees, she would be self-funding, via the deferred payment scheme, until there wasn't enough equity left. Someone tell me if I have got any of that wrong.

So first you need to talk to a social worker at the LA about what is a reasonable distance away for her to be, secondly you need them to give you a list of their approved homes and thirdly you need to hear from them exactly how it will be financed and what additional contributions would be required. There is a lot to wade through. Search through deferred payment schemes and top-ups on here or google and you will find some more info on those points. Good luck!
 

Worrywart 2

Registered User
Jul 7, 2015
51
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Thank you for your replies. Yes it is so confusing and I am not well myself so I am struggling.
There are no beds in any of the homes within 15 miles of where we live apart from one which has very bad reputation. I too do not understand why a home 40 miles away is being recommended as she would have very few visitors and it would therefore put extra pressure on me as probably her only visitor.
So re the funding. The only home that is on the cards ATM is £615 per week. My mother's income ( pensions dla ) is £350 a week so there is a shortfall of £265 a week. If we went down the deferred payment scheme, would social services pay the £265 a week until house is sold, or will they only pay up to the local authority threshold which is £480 a week, with mum paying the shortfall from her savings ( about £17k ). Sorry if I'm being dim I am just so confused and afraid of entering into a contract with the home, which we cannot afford ( and presumably I would be liable for as her poa - she lacks capacity ).
I would willingly pay for advice on all of this but I'm beginning to think we are the land that time forgot here in Wales as I can't find anyone, only solicitors who deal with CHC.
Thank you to anyone still reading xxx
 

Patricia Alice

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Mar 2, 2015
179
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Thank you for your replies. Yes it is so confusing and I am not well myself so I am struggling.
There are no beds in any of the homes within 15 miles of where we live apart from one which has very bad reputation. I too do not understand why a home 40 miles away is being recommended as she would have very few visitors and it would therefore put extra pressure on me as probably her only visitor.
So re the funding. The only home that is on the cards ATM is £615 per week. My mother's income ( pensions dla ) is £350 a week so there is a shortfall of £265 a week. If we went down the deferred payment scheme, would social services pay the £265 a week until house is sold, or will they only pay up to the local authority threshold which is £480 a week, with mum paying the shortfall from her savings ( about £17k ). Sorry if I'm being dim I am just so confused and afraid of entering into a contract with the home, which we cannot afford ( and presumably I would be liable for as her poa - she lacks capacity ).
I would willingly pay for advice on all of this but I'm beginning to think we are the land that time forgot here in Wales as I can't find anyone, only solicitors who deal with CHC.
Thank you to anyone still reading xxx

Hi Worrywart,

My mom has just been kicked out of a dementia residential home because they couldn't cope with her. She is not violent, but kept getting up and asking questions constantly, refusing to take her meds etc. We have had to move her to dementia nursing for this reason, but the people she is with are far worse. She is not settling at all and crying all the time.

I can't really advise, only tell you what happened to us.

If your mum is not quiet and does not sit in the chair then, depending on the quality of the home, they could ask you to move her on. We got 28 days notice.

Good luck.
 

Pickles53

Registered User
Feb 25, 2014
2,474
0
Radcliffe on Trent
If the hospital is pushing for your mum to be discharged, but there are no suitable beds in any EMI homes within 15 miles, SS may be under pressure to find a vacancy somewhere; that may be why they are suggesting a home much further away. However, it is certainly arguable that this would not meet your mum's needs as she would be deprived of contact with her family and it is therefore is not suitable. It is not her fault or yours if she cannot leave hospital yet because there is no suitable place available.

From the finance point of view, you first need to establish whether your mum would be self-funding or not. If she has more than £23,500 total capital (including her home unless it is exempted) then she would be self-funding and would have to pay the full fees from her income and capital. So if her income doesn't cover the fees, the LA could set up a deferred payment scheme to cover the fees until her house was sold and the capital available. The fees would then be repaid to the LA. Being self-funding generally gives you choice of where mum goes.

As your mum has savings of £17k and you are expecting to sell mum's home this would seem to be the likely position, but please check this out with the LA; if the house is excluded then the position is different and they will make some contribution to the fees.

Try not to be pressured into to agreeing to anything until you are happy with the proposed placement and the financial position has been properly explained to you.
 
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Worrywart 2

Registered User
Jul 7, 2015
51
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Thank you Pickles that is really helpful. I know the hospital are under massive pressure to get her out ASAP as she is out of county, she was admitted to a hospital 60 miles away owing to no beds locally. I think the social worker is being pressurised and I certainly felt that pressure today, reduced to tears at one point. There are no beds in these homes, the only one that has beds had a dreadful review and local knowledge confirms its not a good place.

So how do people sometimes rent their parents house out then. We have a shortfall of about £ 1000 a month but if we rented house out and got about £400 rent then could we pay the shortfall from my mother's savings ?

Sorry for all the questions. I'm at the end of my tether.

Thank you so much x
 

Pickles53

Registered User
Feb 25, 2014
2,474
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Radcliffe on Trent
Thank you Pickles that is really helpful. I know the hospital are under massive pressure to get her out ASAP as she is out of county, she was admitted to a hospital 60 miles away owing to no beds locally. I think the social worker is being pressurised and I certainly felt that pressure today, reduced to tears at one point. There are no beds in these homes, the only one that has beds had a dreadful review and local knowledge confirms its not a good place.

So how do people sometimes rent their parents house out then. We have a shortfall of about £ 1000 a month but if we rented house out and got about £400 rent then could we pay the shortfall from my mother's savings ?

Sorry for all the questions. I'm at the end of my tether.

Thank you so much x

If you are self-funding, it's essentially up to you how you organise paying the fees. You can certainly pay them from a combination of your mum's income, rental income and savings.

Some people decide to rent out the house rather than sell it because it will they think generate more income and so make their relative's funds last longer ; you would then not need a deferred payment scheme as you would be paying the fees each month directly to the home.

We looked at this option for my mum's house, though in the event she died before we actually got anything set up, and she had enough cash savings to cover her fees for at least a year. Until you got a tenant you could pay the shortfall from the £17k savings.

If you think this might be a option, I'd recommend you get an estate agent to give you an estimate of the rent you could expect. Remember that there will be some expenses to offset against the rental income eg you need to cover ongoing insurance, repairs and you may need to spend some of your mum's capital before renting it out on renovating or repairing. Other costs include paying an agent to find and verify a suitable tenant, tenancy agreements and other legalities. An estate agent can do all this for you, and also manage the property on an ongoing basis, which would probably cost around 15% of the rent.

Of course even if you sell there will be some costs eg solicitors fees.

You need to do the sums carefully, but it can work.

I can well understand the stress you are feeling but you need to be your mum's advocate and insist she goes to a home that is right for her where she can still see her family. It's not ideal to have to move more than once, but if the alternative is for her to remain in hospital for a lot longer maybe that might be a interim solution. By the way, my mum went to a dementia residential home. When she moved in she was already dependent on two carers as she couldn't stand unaided, let alone walk. Before long she had to be hoisted, and eventually she became bed bound, but there was never any suggestion that she needed to move to a 'nursing' home.
 
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Worrywart 2

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Jul 7, 2015
51
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Thank you Pickles - most sense I have had all day. I'm so tired I can't think - you have explained it perfectly - thank you
 

Raggedrobin

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Jan 20, 2014
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As the situation is so difficult with the pressure to get her out of hospital, could a respite place be found for your mother, until something suitable turns up? It may not be ideal to do this as it would later involve moving her but it might buy you some time. Also good if you could get respite in a home you want her to be in, then you test the water to see if it suits her.
I think renting out her property is a great idea in that it keeps the property for inheritance. I looked into this with my Mum but was shocked at the huge disparity between what small amount I could get as rental and the large amount needed for the fees. Defo check the rough rental income, minus agent's fees, so you know if that is do-able.
i do sympathise re being ill yourself, I had to handle all my mother's affairs despite my own health issues, it can be really exhausting. I hope once you are over this bit - and it is a very stressful time, she will settle and you can settle too.
 

Worrywart 2

Registered User
Jul 7, 2015
51
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As the situation is so difficult with the pressure to get her out of hospital, could a respite place be found for your mother, until something suitable turns up? It may not be ideal to do this as it would later involve moving her but it might buy you some time. Also good if you could get respite in a home you want her to be in, then you test the water to see if it suits her.
I think renting out her property is a great idea in that it keeps the property for inheritance. I looked into this with my Mum but was shocked at the huge disparity between what small amount I could get as rental and the large amount needed for the fees. Defo check the rough rental income, minus agent's fees, so you know if that is do-able.
i do sympathise re being ill yourself, I had to handle all my mother's affairs despite my own health issues, it can be really exhausting. I hope once you are over this bit - and it is a very stressful time, she will settle and you can settle too.

Thank you ragged robin. I suppose a respite place could be feasible as it would give us all time to draw breath. It's been a tough year and we didn't see this coming. Mother has lived alone with carers for 2 years then she just deteriorated over a weekend.
We too would see a huge shortfall between the asking fee from care home and the income we could generate including rental income. I do question is it worth the hassle. I'm tired, unwell, my daughter is pregnant and my husband is also Ill. I have had over 30 ops on my life and my last one ended up seriously complicated. I want a simple life. I feel like saying - take her money, take her house , just put her somewhere nice where she can be happy and cared for and close to us. Not too much to ask. Life is really hard at times xxx
Thank you xxx
 

Pickles53

Registered User
Feb 25, 2014
2,474
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Radcliffe on Trent
Thank you ragged robin. I suppose a respite place could be feasible as it would give us all time to draw breath. It's been a tough year and we didn't see this coming. Mother has lived alone with carers for 2 years then she just deteriorated over a weekend.
We too would see a huge shortfall between the asking fee from care home and the income we could generate including rental income. I do question is it worth the hassle. I'm tired, unwell, my daughter is pregnant and my husband is also Ill. I have had over 30 ops on my life and my last one ended up seriously complicated. I want a simple life. I feel like saying - take her money, take her house , just put her somewhere nice where she can be happy and cared for and close to us. Not too much to ask. Life is really hard at times xxx
Thank you xxx

You have so much on your plate it would be surprising if you didn't feel overwhelmed, and I'm glad you are finding some help here. TP was an absolute lifeline to me while mum was alive; I found out more from here than any of the official health and social care professionals. My mum was not managing brilliantly at home and we were already looking for a care home, but we were shocked at how the effect of a fall accelerated her decline and we had to move her much quicker than we had expected to.

Unfortunately if you are self-funding (and remember this still needs to be confirmed by LA) the LA will not do anything more than set up the deferred payment agreement. Someone will still have to sort out the house sale.

We rent out what used to be my parents-in-laws' flat. It's pretty hassle-free now; it was just setting everything up that took time and effort. However you have such a lot to deal with already that this may be one job too many, so there's nothing wrong with just putting the house on the market and letting the estate agent do the work.
 

canary

Registered User
Feb 25, 2014
25,018
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South coast
When mum first went into her CH I wasnt sure how much she had in the way of savings, although I knew that she had her bungalow, so would be self-funding. The SW said that if she had under the £23,000 in savings then she would be eligible for a "12 week disregard". In the event she had a fair bit more, so she was not eligible and I dont know how it works. Perhaps someone with more knowledge than me could clarify this?
 

Worrywart 2

Registered User
Jul 7, 2015
51
0
Hello,
Still wading through the mire :(

Please tell me if this is how it works -
Mother who is just 76 has £18,000 savings plus owns her home
She is in hospital and we are looking for care home ( long story )
We have found a EMI residential home @£620 per week
( all the cheaper ones are awful)
The first 12 weeks her home will be disregarded so they will assess her n her income
Her income is £350 per week so local authority will pay difference ( or will they only pay up to their limit which is £480 per week )
After the 12 weeks they will take the value of her house into consideration
We could set up a deferred payment scheme whereby the difference between her income and the charge are deferred until after Mother's Day?
She would continue to hand over all her pensions etc
Further questions :
What happens if she is admitted to the home on a temporary basis? Do they continue to disregard the house until the stay is permanent
Does anyone know if we can rent the house out to try and generate some extra income?

So sorry for all the questions, it's so hard to make decisions when y can't get an answer. Will I have to sign the contract as I have POA?

Thank you for reading and hoping you can help
 

Pickles53

Registered User
Feb 25, 2014
2,474
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Radcliffe on Trent
I hate to add to the mire you're wading through but I think you need to take a look at some of the statutory guidance which LA should be following.

https://www.gov.uk/government/uploa.../file/366104/43380_23902777_Care_Act_Book.pdf

Annex A talks about the choice of care homes. In particular, paragraph 11 says that LAs 'must not set arbitrary amounts or ceilings for particular types of accommodation that do not reflect a fair cost of care.'

This means that if there are no homes that meet all your mum's needs at £480 per week, the LA will have to pay the difference between your mum's contribution and whatever the home charges.

Not sure about the other questions as I have never been involved in negotiating deferred payment arrangements or how temporary residence affects this. Hopefully someone else does!
 
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Worrywart 2

Registered User
Jul 7, 2015
51
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Hello all, an update.
After speaking t the finance department I had sort of got my head around the rules on care home funding. The home we liked is very nice, quite posh but with a £140 top up per week. The woman from the home went to see my mother and said she was from a care home which didn't go down well - my mother ( who has vascuakr dementia ) swore at her and so the assessment ended. The care home manager agreed to take her on a trial basis it said if she continued swearing she would have to leave ( my mother doesn't swear normally she must have been upset at hearing the word care home ). Anyway long story short I soon realised I would have to enter into a contract to pay the top = £600 a month. This frightens me as I don't work and have savings but my mother is 76 so this could go on for years. I'm not sure the local authority will allow the avc to be deferred from equity in house ( house not being considered ATM as she will be temporarily placed )
There is another care home in our town actually which is not so swish but seems very nice and has good reviews, it s so difficult to know what to do, my mother would not care about underfloor heating, flat screen TV etc as is in the expensive home. It's the care that's important and the cheaper home is far more sustainable financially.
So difficult to know what to do, I have to decide tomorrow as hospital what her out :(
 
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canary

Registered User
Feb 25, 2014
25,018
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South coast
Hi worrywort
I know that we want to feel that we have done everything possible and moving someone into a care home is so traumatic that we want the "best" for them, but I dont think that appearances matter. TBH I would go for the cheaper option. You have said it yourself - she wont care about underfloor heating and everything. What she now needs is good care from people who are understanding and know how to cope. If you will get this from the cheaper place then it seems stupid to put yourself under financial pressure when it wont make any difference to your mum.
 

Pickles53

Registered User
Feb 25, 2014
2,474
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Radcliffe on Trent
Leaving aside the finances, I would be a bit worried that the care manager reacted quite strongly to your mum swearing as I understand that is not at all untypical for dementia patients (and probably less difficult to cope with on the scale of behaviours that might be expected, especially as the condition worsens).

I'd expect a specialist dementia care home, residential or nursing, to be well able to cope with a bit of bad language. Otherwise there is a risk that you may end up moving your mum again quite quickly after the trial period. This is what happened with my MIL. The first home which my FIL liked best were very honest; they weren't at all sure they could really cope with MIL's occasional aggressive outburst but my FIL was so keen for her to go there that they agreed to a trial period. That lasted two weeks, and then he had to start the search again which really upset him. With hindsight, we should have listened to what the first home said; they were right that it wasn't the place for her.

So after rambling on, I guess what I'm trying to say is that if the home isn't keen to take your mum, there may be good reasons for that.
 
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Shedrech

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Dec 15, 2012
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UK
I agree with Pickles and Canary. If you think the cheaper home is will provide the care your mum needs, go with that - clean and tidy is just fine - posh to me is for show and visitors and if it's kept posh at the expense of real life ie not coping with swearing and the other messy facts of life with dementia, then it's not worth the money or stress it will cause you.
I would have expected that the assessor from the home would have had the nowse to introduce herself in a neutral manner and not immediately create friction - not a good sign to me that dementia training is at work. And therefore no real assessment of whether the home could provide for your mother's needs was undertaken! That alone would make me think twice.
 

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