Dementia Awareness

[Robster59]

Sorry to hear about this Tash. I'm glad people find this thread to be of some support. It certainly was to me when I was going through it with my FiL and my Mum. Even just to be able to air your thoughts, feelings and concerns on this forum was really beneficial to me. You can say things you can't necessarily say face-to-face, and release thoughts that otherwise you hold in. The fact that two "outsiders" observed your FiL's behaviour should, I would hope, have raised the issue considerably as he now raises a genuine concern of causing physical injury to someone. I think you need to now use this as leverage in terms of getting the appropriate treatment. Send emails or letters to the authorities, advising them that you are keeping copies so that you have a record should something happen in the future and that they failed to act on those concerns.
I had to do this for the treatment for my Mum. My brother was convinced he could do it all himself and didn't need any help. The Social Worker said that in her opinion my mother was OK with just my brother looking after her. I told her, very politely, that I was not interested in her opinion and that I wanted a formal Dementia test carried oiut on my Mum by a specialist. Social services were happy to load it all on to my seventy year old brother (I lived over 200 miles away) so after her second fall, and a stay in hospital where she caught Covid, I put down exactly what I expected them to do and advised that I was keeping copies of all correspondence in the case of another serious incident. It was amazing how quickly I got a response from the manager of the services.
I can't pretend things are going to get any easier. All I can suggest is to get out there and get all the help you can get. And keep pushing for it as otherwise you will just get fobbed off and passed from pillar to post, as they were doing with my brother.

 

[Tashyboy]

Cheers Robster. Missis T has a call to make to the social services this afternoon. Be interesting to see how that goes.

 

[Hobbit]

As I said early in the thread, been there and it’s damn painful. We, like many, probably tried too hard to keep mum in her own home way past when a different plan was needed.

You love them unreservedly 24/7 but, truthfully, you can’t care for them 24/7, especially when some elements of that care are specialised. In the end there was no choice. A fall meant specialised care, then into a home that was part staffed with nurses as well as carers.

Mum loved the home. There were people of her age group, people to talk about rationing and dance halls. And daily organised activities and a couple of afternoons a week there be entertainment brought in. On-site hairdresser twice a week. And there was more…

We visited almost every day, as did our siblings and her grandchildren. We would find a very happy old lady who, sometimes, even remembered us. On other occasions she just thought we were random visitors, which she enjoyed too.

The meetings with Social Services etc, over nearly 5 yrs, whilst she was still at home was hard but the alternative was worse…

 

[Rooter]

Bit of a rant, sorry. What I can't get is how goddamn complicated and onerous the whole process is. My mum is in charge of everything, 2 separate care facilities for the grand folks, she has the power of attorney for my gran, but they have POA to my uncle who has since blooming died aged 62. so, G-dad is basically in the hands of the system and Mum has no real say in anything. The sheer volume of paperwork and admin my Mum is having to do is unreal, its lucky she is retired as it's nigh on a full-time job!! To make things harder/more frustrating, they have/had a bit of cash saved up, not millions but 6 figures, they worked hard for 40 odd years and saved. This and the value of their McCarthy Stone flat is due to run out in about 6 months' time, current bills are around 5k a month-ish...

Pay into the system all your life, save to pass some down to your loved ones, but you can't. you have to pay your own keep if you have it. Until it's all gone. If they would have known, they would have holidayed more, had a new car etc etc. It's a damn joke.

As a society we are very good at keeping people alive, but terrible at giving people a life.

 

[Hobbit]

Bit of a rant, sorry. What I can't get is how goddamn complicated and onerous the whole process is. My mum is in charge of everything, 2 separate care facilities for the grand folks, she has the power of attorney for my gran, but they have POA to my uncle who has since blooming died aged 62. so, G-dad is basically in the hands of the system and Mum has no real say in anything. The sheer volume of paperwork and admin my Mum is having to do is unreal, its lucky she is retired as it's nigh on a full-time job!! To make things harder/more frustrating, they have/had a bit of cash saved up, not millions but 6 figures, they worked hard for 40 odd years and saved. This and the value of their McCarthy Stone flat is due to run out in about 6 months' time, current bills are around 5k a month-ish...

Pay into the system all your life, save to pass some down to your loved ones, but you can't. you have to pay your own keep if you have it. Until it's all gone. If they would have known, they would have holidayed more, had a new car etc etc. It's a damn joke.

As a society we are very good at keeping people alive, but terrible at giving people a life.

Unless things have changed in the last 7 yrs, if gran has a medical condition a substantial part of her care costs should be met by the state irrespective of how much is in the bank. MiL also had mega bucks in multiple bank accounts and building societies but because she suffered dementia a significant part of her home care cost were covered.

 

[Lord Tyrion]

Unless things have changed in the last 7 yrs, if gran has a medical condition a substantial part of her care costs should be met by the state irrespective of how much is in the bank. MiL also had mega bucks in multiple bank accounts and building societies but because she suffered dementia a significant part of her home care cost were covered.

Dementia alone doesn't qualify the person for costs to be covered. People with dementia receive care, not treatment. Only people receiving treatment, cancer sufferers, etc. get financial assistance.

Care costs for dementia are not met until you get down to the last £23k, or so.

It's a hugely important point that the Alzheimer's Society are trying to change.

 

[Tashyboy]

Bit of a rant, sorry. What I can't get is how goddamn complicated and onerous the whole process is. My mum is in charge of everything, 2 separate care facilities for the grand folks, she has the power of attorney for my gran, but they have POA to my uncle who has since blooming died aged 62. so, G-dad is basically in the hands of the system and Mum has no real say in anything. The sheer volume of paperwork and admin my Mum is having to do is unreal, its lucky she is retired as it's nigh on a full-time job!! To make things harder/more frustrating, they have/had a bit of cash saved up, not millions but 6 figures, they worked hard for 40 odd years and saved. This and the value of their McCarthy Stone flat is due to run out in about 6 months' time, current bills are around 5k a month-ish...

Pay into the system all your life, save to pass some down to your loved ones, but you can't. you have to pay your own keep if you have it. Until it's all gone. If they would have known, they would have holidayed more, had a new car etc etc. It's a damn joke.

As a society we are very good at keeping people alive, but terrible at giving people a life.

I couldn’t agree more. When FIL and me dad were diagnosed. It was GP and then dementia diagnosis team. The process was simple. Then they are referred on onto social services and since then I am am lost. It’s like FIL is stood in the middle and all around is GP, Consultant, family, social services, social worker, physio. So who do you contact.
Then it comes to money. In laws have never been rich, primarily coz it’s been spent on beer. But let’s just say that money was spent. It had to be otherwise it was going on payment towards care. House renders, roof repairs etc. Its a nightmare.

 

[Hobbit]

Dementia alone doesn't qualify the person for costs to be covered. People with dementia receive care, not treatment. Only people receiving treatment, cancer sufferers, etc. get financial assistance.

Care costs for dementia are not met until you get down to the last £23k, or so.

It's a hugely important point that the Alzheimer's Society are trying to change.

I wonder how MiL got it then? She got over half of her monthly bill covered.

 

[Lord Tyrion]

I wonder how MiL got it then? She got over half of her monthly bill covered.

Pass, but keep quiet in case the council wants their money back .

 

[Hobbit]

Pass, but keep quiet in case the council wants their money back .

Extradition!

 

[clubchamp98]

I wonder how MiL got it then? She got over half of her monthly bill covered.

Possibly something she never told you about !
secrets .

 

[Hobbit]

Possibly something she never told you about !
secrets .

I wonder if it was because she’d spent 5mths in hospital recovering from a broken hip plus 2 bouts of pneumonia, and the dementia was well advanced by then. Ah, she also had chronic COPD.

 

[clubchamp98]

I wonder if it was because she’d spent 5mths in hospital recovering from a broken hip plus 2 bouts of pneumonia, and the dementia was well advanced by then. Ah, she also had chronic COPD.

Well she would have a tough time keeping that quiet.

Both my parents has Dementia so I feel for the ones going through this.
And yes you second guess the decisions you make, but you can only do your best.

My dad asked me to help him kill himself I said “No”
That still haunts me to this day.

 

[Hobbit]

Well she would have a tough time keeping that quiet.

Both my parents has Dementia so I feel for the ones going through this.
And yes you second guess the decisions you make, but you can only do your best.

My dad asked me to help him kill himself I said “No”
That still haunts me to this day.

My horror story was repeatedly having tell MiL her husband had died… repeatedly having to cope with her crying broken heartedly only for her to have forgoften an hour later, for weeks/months.

 

[RichA]

Mum's care was fully funded by the NHS. Basically, the person has to be assessed as having significant medical needs - full nursing care as opposed to "just" care.
It's not especially common. Mum's social worker was pleasantly surprised when the NHS panel decided she qualified.

 

[Tashyboy]

Well she would have a tough time keeping that quiet.

Both my parents has Dementia so I feel for the ones going through this.
And yes you second guess the decisions you make, but you can only do your best.

My dad asked me to help him kill himself I said “No”
That still haunts me to this day.

When I brought me dad out of City hospital Nottingham. He had just had a triple by pass after his Leukaemia treatment.He said to me “ if I am like this in a week, blow my brains out”. Don’t know how I drove him home with the tears in me eyes. That was 16 years ago yet he is still going strongish.

 

[Lord Tyrion]

I wonder if it was because she’d spent 5mths in hospital recovering from a broken hip plus 2 bouts of pneumonia, and the dementia was well advanced by then. Ah, she also had chronic COPD.

I think you have just answered your previous post there. Tough spell for the poor woman.

 

[Rooter]

If either of my grandparents was in the care they are in due to say a stroke, it would be fully funded by NHS. But Dementia and Alzheimers as per LT are not 'qualifying' conditions.

 

[SwingsitlikeHogan]

Dementia alone doesn't qualify the person for costs to be covered. People with dementia receive care, not treatment. Only people receiving treatment, cancer sufferers, etc. get financial assistance.

Care costs for dementia are not met until you get down to the last £23k, or so.

It's a hugely important point that the Alzheimer's Society are trying to change.

The £23k limit is changing to £100k in October 2025 (was originally to have been brought in October this year). This means that some state contribution will be provided when the capital of the person in care reduces to £100k - if indeed the capital was greater than £100k to start with. Also changing in October is that there will be a lifetime cap of £86k on care/nursing costs. These costs do not include the cost of accommodation, meals, entertainment etc which must be paid by the person in care. Once the cap is reached the state will cover all subsequent care/nursing costs for as long as it is required.

 

[Neilds]

The £23k limit is changing to £100k in October (this year). This means that some state contribution will be provided when the capital of the person in care reduces to £100k - if indeed the capital was greater than £100k to start with. Also changing in October is that there will be a lifetime cap of £86k on care/nursing costs. These costs do not include the cost of accommodation, meals, entertainment etc which must be paid by the person in care. Once the cap is reached the state will cover all subsequent care/nursing costs for as long as it is required.

Just to point out, there is no such thing as state funding - it is funding that comes from taxes so everyone still ends up paying, just in a different way