Dementia Awareness

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Lord Tyrion

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My Dad is being discharged from hospital tomorrow. He is going direct to a local home as the medical and care needs have agreed, thankfully, that going home isn't viable for him or my Mum. She is relieved on one hand but crippled with emotional guilt on the other. I am relieved for all.

Now the next step in the journey is around duration of stay and funding. I think he's there for a fully paid six weeks if I understand correct, with a figure of £1,400 a week quoted, to finally assess his needs and care package. As this is new for us with no experience, I'm after any guidance from you guys about what are the options after the six weeks. I guess they means test my Dad's income to see if he can pay all, most, little or none of his care going forward. He is not well off at all, thus it should be little or none. But I don't know what the NHS or whoever has the purse-strings will be able to pay or what's their set limit. I have it in my head they will pay a set percentage/amount (e.g. £1000), then the rest of the care comes out of his pension, savings, benefits, etc.?

Anyone who has an info, I would appreciate it. I just want to ensure that we cover all the bases and that we are not missing out on any entitlement or support to make the process easier. There's lots of resources and info about; it's just piecing it all together to get the right informed outcome. The Beacon website has been very valuable.

Cheers
My MiL goes in for respite care for 1 week on Friday. First time and likely to become permanent very shortly.

My understanding after listening to my wife explain it to my FiL multiple times is a follows:

They can not touch your mums money, nor her house whilst she is alive and living in it.

The state will pay an amount towards the cost, you will need to top up the rest from pensions, his savings, etc. Once the savings money is used up, pensions keep going of course, your local council will then decide whether they top up the money or whether they move your dad to a home that they suggest and is within their budget. The choice then is simple, either you pay or he is moved.

The figures are not as great up here, North / South divide working in our favour this time, so for us the gap is likely to be easier to bridge or more likely, the council will simply agree to pay the difference if my MiL is happy there rather than put her through the upheaval. Don't forget incidentally, the council at that point will negotiate the fee with the home and their power may get a cheaper rate than you or I could achieve.

My wife has found that Age UK have been very helpful on this front. Are you in touch with them for advice? If not it may be worth speaking to them.

Best of luck and please post what you learn. It is helpful for all of us going through this as getting accurate information at times is ridiculously difficult.
 

RichA

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It all seems to depend on the panel from NHS and social services who make the assessment. My mum's non-dementia medical care needs were considered sufficient that fully funded nursing care was essential. Honestly, we were surprised, as all her medical issues seemed dementia related to us.
Please get advice. It's a few years ago and I can't remember the names, but advocacy can be obtained via Age UK and dementia charities.
 

Piece

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This is an excellent site, thanks. And has got me wondering if we can apply/demand a continuing healthcare assessment to get all his care funded as this mechanism is not means-tested. I'm looking at the very useful Beacon website and toolkit.

My MiL goes in for respite care for 1 week on Friday. First time and likely to become permanent very shortly.

My understanding after listening to my wife explain it to my FiL multiple times is a follows:

They can not touch your mums money, nor her house whilst she is alive and living in it.

The state will pay an amount towards the cost, you will need to top up the rest from pensions, his savings, etc. Once the savings money is used up, pensions keep going of course, your local council will then decide whether they top up the money or whether they move your dad to a home that they suggest and is within their budget. The choice then is simple, either you pay or he is moved.

The figures are not as great up here, North / South divide working in our favour this time, so for us the gap is likely to be easier to bridge or more likely, the council will simply agree to pay the difference if my MiL is happy there rather than put her through the upheaval. Don't forget incidentally, the council at that point will negotiate the fee with the home and their power may get a cheaper rate than you or I could achieve.

My wife has found that Age UK have been very helpful on this front. Are you in touch with them for advice? If not it may be worth speaking to them.

Best of luck and please post what you learn. It is helpful for all of us going through this as getting accurate information at times is ridiculously difficult.
Very useful and thank you.
 

RichA

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This is an excellent site, thanks. And has got me wondering if we can apply/demand a continuing healthcare assessment to get all his care funded as this mechanism is not means-tested. I'm looking at the very useful Beacon website and toolkit.



Very useful and thank you.
We downloaded the Decision Making Tool (it's a points based system) and the checklist and worked backwards, having a few long and difficult conversations with Dad to get evidence of the healthcare he'd been struggling to provide Mum with, how long it had been going on, examples of medical emergencies and violence from Mum that we had been unaware of. Out of shame, embarrassment and not knowing what else to do, he had covered up some pretty upsetting and awful stuff for longer than we had imagined. I documented it all and provided it to the social worker, who almost became our advocate. Along with the assessments by the hospital caring for Mum, it got her over the score required.
Sorry to talk about myself when this is about you, but I don't like giving advice or telling you what you should do, so it's easier to just say what we did.
Maybe your Mum has other similar information that she hasn't told you that will help.

Good luck. I really feel for you and your family.
 

pauldj42

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Good friend is going through a difficult time at the moment, he has however, managed to put some of feelings down on paper

I sat and watched the man in the chair
An empty shell with a forlorn distant stare
Once he had lived, loved, laughed and now cries
Because it’s all gone, he can’t remember no matter how hard he tries
Then a glimmer, a smile a small spark of life
He can see his one constant his long suffering wife
It’s a rare golden moment that shines through the abyss
A moment so fleeting it would be easy to miss
She takes his hand for a second content
and then it’s all over his memory is spent
Once again he is the man in the chair
An empty shell with a forlorn distant stare.
 
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2blue

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Good friend is going through a difficult time at the moment, he has however, managed to put some of feelings down on paper

I sat and watched the man in the chair
An empty shell with a forlorn distant stare
Once he had lived, loved, laughed and now cries
Because it’s all gone, he can’t remember no matter how hard he tries
Then a glimmer, a smile a small spark of life
He can see his one constant his long suffering wife
It’s a rare golden moment that shines through the abyss
A moment so fleeting it would be easy to miss
She takes his hand for a second content
and then it’s all over his memory is spent
Once again he is the man in the chair
An empty shell with a forlorn distant stare.
Wow...... just wow...... from a Dad with a son in the Sevices. :cry::cry:
 

Tashyboy

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Good friend is going through a difficult time at the moment, he has however, managed to put some of feelings down on paper

I sat and watched the man in the chair
An empty shell with a forlorn distant stare
Once he had lived, loved, laughed and now cries
Because it’s all gone, he can’t remember no matter how hard he tries
Then a glimmer, a smile a small spark of life
He can see his one constant his long suffering wife
It’s a rare golden moment that shines through the abyss
A moment so fleeting it would be easy to miss
She takes his hand for a second content
and then it’s all over his memory is spent
Once again he is the man in the chair
An empty shell with a forlorn distant stare.
Tell yer pal Mr and Missis Tash said thankyou. He speaks for millions.😟
 

toyboy54

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Good friend is going through a difficult time at the moment, he has however, managed to put some of feelings down on paper

I sat and watched the man in the chair
An empty shell with a forlorn distant stare
Once he had lived, loved, laughed and now cries
Because it’s all gone, he can’t remember no matter how hard he tries
Then a glimmer, a smile a small spark of life
He can see his one constant his long suffering wife
It’s a rare golden moment that shines through the abyss
A moment so fleeting it would be easy to miss
She takes his hand for a second content
and then it’s all over his memory is spent
Once again he is the man in the chair
An empty shell with a forlorn distant stare.
That is just beautiful, so beautiful-God bless them!
 

Crazyface

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This is a very sad upsetting and very scary thread. Annoyingly the fact that those with a bit of something behind them, a house, have it whipped from them. This is a travesty. You used to be able to gift a house to children to avoid loosing it in these circumstances. Is this still possible? We, the wife and I, have talked about this. In an attempt to stop this from happening to us just in case.
 

RichA

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Some of my MiL's family had a similar conversation with her, including her son's FiL.
When I pointed out that if her children's marriages broke up, she could find herself having to sell her house to settle their divorces, she changed her mind.
Please get proper independent advice before you do anything like this.
 

Tashyboy

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This is a very sad upsetting and very scary thread. Annoyingly the fact that those with a bit of something behind them, a house, have it whipped from them. This is a travesty. You used to be able to gift a house to children to avoid loosing it in these circumstances. Is this still possible? We, the wife and I, have talked about this. In an attempt to stop this from happening to us just in case.
CF, I do stand corrected. But I think me and Missis T have something in our will where the kids are joint owners. But it has to be done for 7 years and not the last few months to avoid a “ fiddle”. Hopefully someone will come along and dot the I’s and cross the T’s.
 

pauldj42

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CF, I do stand corrected. But I think me and Missis T have something in our will where the kids are joint owners. But it has to be done for 7 years and not the last few months to avoid a “ fiddle”. Hopefully someone will come along and dot the I’s and cross the T’s.
I’m probably wrong Tash, but I believe the property has to be in their name, ie, they are the legal owners, for 7 years, therefore you and Missus T are living in their property for that period or more prior to your deaths for it not to be included in your or Missis T’s estate.
 

Tashyboy

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I’m probably wrong Tash, but I believe the property has to be in their name, ie, they are the legal owners, for 7 years, therefore you and Missus T are living in their property for that period or more prior to your deaths for it not to be included in your or Missis T’s estate.
Gonna speak to Missis T when she is back from the gym 👍
 

clubchamp98

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Gonna speak to Missis T when she is back from the gym 👍
My parents made separate wills leaving the house to the children.
So when my mum died we owned half the house ,as it didn’t go to my dad.
In this way all the house can’t be taken to fund care for the surviving one.
There’s a clause making the spouse secure in the property and you can’t sell it without their permission.
The 7 year clause is for tax purposes this applies to large amounts of cash I think as well.
So you can’t even give your money away without the taxman grabbing it.
 

Tashyboy

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My parents made separate wills leaving the house to the children.
So when my mum died we owned half the house ,as it didn’t go to my dad.
In this way all the house can’t be taken to fund care for the surviving one.
There’s a clause making the spouse secure in the property and you can’t sell it without their permission.
The 7 year clause is for tax purposes this applies to large amounts of cash I think as well.
So you can’t even give your money away without the taxman grabbing it.
Just spoke to Missis T and read your post To her. ^ This is it. Cheers CC98.

Back onto dementia. FIL is getting worse by the week. I think the strain is showing at times with Missis T. We had a “ break” at mablethorpe wi the grandkids over the weekend. But you know what your coming back to. Had an amble around Rufford lake today just getting away from it. I asked if she wanted to go and see her parents. Nope. 2 mins later her father is on the phone. She never answered through having a rubbish signal. He called again as soon as we got home. He daily does not recognise his wife, she is a stranger. Today his wife was his mum. She died 20 odd years ago. No one will talk to him on the phone and there all laughing at him behind his back. He was glad Missis T picked up the phone straight away as it was the first time he had called her today 😖. Missis T talked him back into the room in recognising his wife and she is saying in the background “ Ave had enough of this”. Missis T is more than accepting of her dads condition, it’s her mum who is winding up Missis T. She is quite happy to sit back and do nothing, she does not even help to sort out his tablets and just leaves him to it.
 

RichA

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Just spoke to Missis T and read your post To her. ^ This is it. Cheers CC98.

Back onto dementia. FIL is getting worse by the week. I think the strain is showing at times with Missis T. We had a “ break” at mablethorpe wi the grandkids over the weekend. But you know what your coming back to. Had an amble around Rufford lake today just getting away from it. I asked if she wanted to go and see her parents. Nope. 2 mins later her father is on the phone. She never answered through having a rubbish signal. He called again as soon as we got home. He daily does not recognise his wife, she is a stranger. Today his wife was his mum. She died 20 odd years ago. No one will talk to him on the phone and there all laughing at him behind his back. He was glad Missis T picked up the phone straight away as it was the first time he had called her today 😖. Missis T talked him back into the room in recognising his wife and she is saying in the background “ Ave had enough of this”. Missis T is more than accepting of her dads condition, it’s her mum who is winding up Missis T. She is quite happy to sit back and do nothing, she does not even help to sort out his tablets and just leaves him to it.
Dad was similar when mum got bad. In hindsight, we had no idea just how intolerable his life had become. Assaults, abuse, living with a virtual stranger, providing 24 hour care for someone who varies between apathy and hostility.
Early on, someone we knew said, "Never mind your mum, keep an eye on your dad." They we're right. We only realised after.
 

Tashyboy

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Dad was similar when mum got bad. In hindsight, we had no idea just how intolerable his life had become. Assaults, abuse, living with a virtual stranger, providing 24 hour care for someone who varies between apathy and hostility.
Early on, someone we knew said, "Never mind your mum, keep an eye on your dad." They we're right. We only realised after.
Rich it’s tough, she talks to him in an horrible manner. That don’t half set him off. FIL had a right go a month or so ago at his son in law, Effing and blinding in the street. Raising his fists. Me Bro in law was upset and Livid. 2 weeks ago in-laws had a meeting with a Shrink. Missis T who was there mentioned FILs temper. MIL played it down, Missis T mentioned the spat in the street. MIL said “ I don’t know why son in law was upset it was nothing”. missis T was seething. If bro in law finds out what she has said he will go ballistic.
I think she would be happy to see him in a home but she does not want to make that decision.
 

toyboy54

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Rich it’s tough, she talks to him in an horrible manner. That don’t half set him off. FIL had a right go a month or so ago at his son in law, Effing and blinding in the street. Raising his fists. Me Bro in law was upset and Livid. 2 weeks ago in-laws had a meeting with a Shrink. Missis T who was there mentioned FILs temper. MIL played it down, Missis T mentioned the spat in the street. MIL said “ I don’t know why son in law was upset it was nothing”. missis T was seething. If bro in law finds out what she has said he will go ballistic.
I think she would be happy to see him in a home but she does not want to make that decision.
God...What a truly horrible situation for you ALL to be placed in- and if I may say so Mrs. T. especially ( that's not in any way reducing the angst you must be feeling!
Don't know what to say to you except that you have to be the strong one for all. God bless!
 
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