Elderly parents care home financial and process advice

[Stay calm. Drink Tea.]

Hello. Ive spent a while browsing and im still not sure which forum or sub forum this should go in, so please forgive me if Ive got it wrong and move it to the correct place.

So, basically as the title says, its difficult getting definitive answers from anyone and the more I read online, the more conflicting answers I seem to find...

To keep it short as possible and keep the relevant points clear Ill bullet point the facts and the ongoing situation.

 

BACKGROUND

- Elderly parents, father 90 years old, mother 83 years old. They have been married over 63 years. Both (until recently) pretty fit and healthy, dad used to be a pro cycle time trial rider and aged 75 he and my mum cycled across india, west to east.

- Both me and my sister have lasting powers of attorney for financial and health matters should we ever need them. We are spread out, parents live in Kent, I live in Chichester, sister lives in Bicester. Both me and my sister are on the same page with everything, speak a lot and have absolute support of each other should any legal decisions have to be made, although to be fair, its unlikely that one of us would do that withoug consulting the other anyway.

- Around 2017 my dad started to become kind of 'vacant' sometimes and you had to prompt him for an asnwer if you had spoken to him. We all noticed it but mum was in denial.

- 2020, just after covid broke out, dad was out on his bicycle when he came off and landed in a ditch. Im not really sure what happened, I dont think we ever will be, but the outcome is that he was found some time later, taken to hospital and spent some time in ICU with a broken neck.

- Getting the correct care for him during this time was just awful... Im sure many people suffered during this time with worse outcomes. But that doesnt change how awful it still was for all of us.

- The change in dad from this point forwards was fairly rapid and noticable, almost like the trauma triggered a sharp decline.

- Between then and mid 2022 his pain in his upper back never went away and he became visibly more frail and increasingly 'vacant'. But still his fitness prevailed and a 25 to 30 mile bike ride 3 times a week was quite normal. Mum finally listened and they got a diagnosis of dementia.

- This gradually got worse, but the cycling seemed to keep him going, and 25 mile cycle rides with my mum twice a week were the norm right up to around april this year.

- Then his balance started to go, he started to fall over a lot. Me and my sister tried to get him to stop riding his bike, but ultimately fate forced this issue.

- His dementia from the begining of this year got worse rapidly. His ability to speak declined. His ability to perform simple functions started to result in him crying because he didnt know what he was doing, but knew that he should know.

- He got lost walking down the lane where he has lived for 50 years and his parents lived before that and had to wear a fall alarm

- he deteriorated and ended up in hospital after falling and my mum couldnt pick him up.

- He came home, with carers visiting a couple of times a day, needed a commode, then became completely incontinent, couldnt get in and out of bed, walking became a major operation with a zimmer frame and someone holding him. one afternoon he ended up in the toilet with faeces all over his hand and getting upset because he didnt know what to do about it.

- Ended up back in hospital with a back injury and falling again.

- It became clear after many tests and scans, that he was suffering multiple things, none of which help each other. -1. Obvioiusly the dementia which has now reached the point where communication is..., lets call it very limited, -2. A degenerative neck injury from when he broke his neck in 2020 which causes pain in his upper back, -3. A degenerative lower spinal inury (probably from falling off a ladder 30 odd years ago) which is causing lower back pain and mobility issues with his legs.

 

So this brings us to today and the advice I need.

He was in Pembury hospital, and while its hard to fault the care he was given there, it was clear that hospital wasnt the place for him and they didnt want him there because he was bed blocking.

They tried to get him moved home, but it didnt take a genius to see that he needed 24 hour round the clock care and my 83 year old mum, who has also deteriorated with general age and stress over the last 2 years, couldnt cope with looking after him. Shes also had her driving licence revoked due to her now steadily failing eyesight.

After a lot of argueing with the hospital, we eventually got him properly assessed by the discharge team and instead of them trying to send him home he was given a 'pathway 3' discharge.

This means he was transfered to a care home that has the facilities to give him the care he needs. We had no say in where this care home was. It was not local to my mother, there are no busses and its a £40 taxi ride each way. She cant ride her bike any more due to her failing eyesight. There are similar homes that provide the same care services that are considerably closer to the village where my mum lives, but for some reason they were not considered.

He will be there until the NHS and the social services carry out an assessment on his care needs and my mums finances. After which a package will be put in place with whatever grants, if any, she qualifies for and the remainder possibly self funded depending on her funds.

 

So the questions I have, which Im pulling my hair out trying to get a definitive answer are:

First

Much as we want him to come home, given the level of 24 hour care he now needs, its not feasable, so we at least want him in a home where my mum can visit him and spend time with him every day.

But we are being told that we cant have him moved until the pathway 3 assessment is complete. Trying to get Kent council to actually carry out the pathway 3 assessment is like smashing your face against a wall. And one person we spoke to at the hospital told us that any care package thats put in place will only apply to the home hes in now and we cant move him.

Can we get him moved closer to home? Before the pathway three assessment is carried out? After the pathway three assessment? How do we do this? Who do we speak to? Currently we just get kind of stonewalled.

Second

We understand that my mum may or may not have to pay for part or all of his care. So be it. But EXACTLYWHAT will she be liable for and how is that assessed?

So far weve been told that my dads estate has more then £23000 then my mum will be liable for paying for his full care until his estate reaches £23000 after which it will be funded by the local authority.

We have been told that this assessment can not take my mums house into consideration as it is her home.

We have been told that my dads estate does not include anything that is in joint names, bank accounts etc that are in joint names are considered my mums estate which is seperate.

My mum has a little over £55000 in various bank accounts, pensions, savings and investments that are in just her name or are on joint names. We have been told that this can not be touched or taken into consideration of my dads estate and can not be taken for his care costs, but we have also been told that these rules only apply when in relation to a deceased persons estate and in the case of someone alive but not capable of making decisions, these rules on what can be plundered by the local authority do not apply and its much more of a 'grey' area.

So exactly what are the rules. What counts as my dads estate, mums estate, joint estate and exactly what can and cant be taken by kent council in relation to my dads care.

third

We were told by a doctor at Pembury Hospital that moving dad to a care home where my mum can visit him was a 'pointless excersise' as this can only be done if his care is 100% self funded, and as soon as the money for that runs out, or if a finite care grant runs out, the council will just move him where ever they want him (ie the cheapest possible option) and we wont have any say in it. Is this true?

 

Im so sad for my dad at the moment. hes deeply unhappy and hes been so active all his life that I just feel like putting him in a care home is an act of unkindness. Even though I know its where he will get the level of care he needs, which he cant at home.

I feel that its kind of important that we get him into a place where my mum can visit him daily, so at least they both have that.

 

Anyway, sorry if that rambled a bit but I thought it was probably best to put all the background info up right from the start to help with any advice.

Many many thanks if you read this far, many many more if you can answer our questions with more definitive answers than we currently have

and remember

Stay calm. Drink tea. Be nice.

 

 

[Stay calm. Drink Tea.]

I will look at ageUK.

Thank you

[Stay calm. Drink Tea.]

Thank you both of you for the pointer to AgeUK.

We always knew that a % of their joint money was going to be used, it was just that no one could tell us how it was going to be worked out, and what and wasn't taken into consideration as part of the assessment, and then going forwards, how any funding and placements worked and what mum would be left with. The best answer we seemed to get was "Social services will do the assessment and explain it to you."

Well Im not saying that I dont trust social services, or that I think that they are staffed by people who lack training/knowledge/experience and we might not get the best outcome and care package but...

Well ok thats exactly what Im saying...

I spoke to a lovely lady from age UK yesterday who gave me some information and escalated it to a level 2 AgeUK financial advisor.

Today Ive spent almost 4 hours on the phone going over every aspect of my parents joint and single finances. I've learned so much and I cant tell you how helpful and amazing the lovely ladies at AgeUK have been.

Im happy that we are now able to get what we need for my dad, I have a clear understanding of how the care package and I have a further appointment with the AgeUK benefits team to get some further help for my mum.

Thank you all

And remember, Stay calm and drink tea

[Stay calm. Drink Tea.]

Thank you for the additional info