Struggling in limbo

[jenny lucas]

PS - my understanding is that when you are only talking about 'extra care' - ie, paying for care workers to come to his house - only his SAVINGS and income are taken into account to see if he qualifies for 'free' extra care. The value of his house will NOT be taken into consideration by the state. That is another very good reason for keeping him out of residential care!

(In the end, we are all, sadly, 'gambling' on how long they will live. Had my MIL died within six months of entering a care home her children could have had a nice chunk of inheritance from her! Now they will get zilch!)(The state allows us to keep £14000 IN TOTAL - from £23,500 to £14,000, the state contributes to care home fees on a sliding scale, but only steps in completely when we are down to the £14k!)

Oh, and out of that measly £14,000 we have to allow for the cost of our funeral too!!!! We CANNOT set aside money for that beforehand! (Unless it was decades before care was needed - otherwise it's, yet again, deprivation of assets!)

So, with funerals costing lets say £4k-ish these days, the most you'll inherit is £10,000.......

[busybee_1607]

PS - my understanding is that when you are only talking about 'extra care' - ie, paying for care workers to come to his house - only his SAVINGS and income are taken into account to see if he qualifies for 'free' extra care. The value of his house will NOT be taken into consideration by the state. That is another very good reason for keeping him out of residential care!

That is the financial assessment we are going through now for care at home. Depending how things pan out this is the route we are going down even if we have to self fund, but I am looking at all avenues.

Thank you for all your advice! . It is very appreciated!!. Unfortunately my Dad had to be admitted to hospital yesterday as he had bad stomach pains during the night and in the morning which was not being relived by paracetamol. The time had come to call 999! . After having IV fluids, antibiotics, and paracetamol he is looking much better. The results of the CT scan show possible inflammatory bowel disease so they have started him on medication for this and he will have further tests. Managed to get a half decent sleep finally. Indeed I have a lot to research and also my job situation to sort out (I work part time evenings) . Thank goodness for organisations like Carers UK and the local carers centre, this is something you really can't imagine about until you experience it. When I talk to my mum and sister in the Caribbean they can't believe this is how it is in the UK. Thanks again.

[jenny lucas]

I'm sorry to hear your dad is back in hospital, but it does sound, at the moment, that that is the best place for him, especially if they can finally come up with a reliable diagnosis.

As for the financial gen, do search the CUK website, not just the forum, as there is a lot of 'proper' info up there, and for chapter and verse email the team of experts at CUK itself (best to email, phones lines are busy, plus email reply will be easier to digest and 'record' etc)

Councils are DESPERATE to minimise spending of any kind on care, so you may well have to fight battles. And they can be, so other forum members have found from time to time, let us say 'economical' with the facts - this may be 'semi-deliberate' or it may be 'incompetance' or it could just be sheer overwork and understaffing....but if you know what you and your dad are legally entitled to (and what not), then it gives you a firm footing for debate.

It is usually advised on this forum that ANY communication with anyone on the council, in DWP, SS, etc etc, should be logged- the time you made the phone call, or spoke to someone, the place and date, etc, so they can't 'forget' what they may have said to you. Best, too, to get email addrsses, and then after every meeting or phone call to send an email to a named individual if possible, giving a resume of the contents of the meeting/phone call...

eg, Dear xxx, in respect of our meeting/phone conversation on xxxxx (time and date and venue), I understand that ....' and just repeat what they told you! End it with 'please confirm I have understood this correctly, and if not, please correct this information. Thank you.'

Again, the purpose is to hold them to account, and not let them say calls never happened, or whatever they had said or promised they then deny or 'forget'.

Good luck with it al!

[X_1808]

I'm sorry to hear your dad is back in hospital, but it does sound, at the moment, that that is the best place for him, especially if they can finally come up with a reliable diagnosis.

As for the financial gen, do search the CUK website, not just the forum, as there is a lot of 'proper' info up there, and for chapter and verse email the team of experts at CUK itself (best to email, phones lines are busy, plus email reply will be easier to digest and 'record' etc)

Councils are DESPERATE to minimise spending of any kind on care, so you may well have to fight battles. And they can be, so other forum members have found from time to time, let us say 'economical' with the facts - this may be 'semi-deliberate' or it may be 'incompetance' or it could just be sheer overwork and understaffing....but if you know what you and your dad are legally entitled to (and what not), then it gives you a firm footing for debate.

It is usually advised on this forum that ANY communication with anyone on the council, in DWP, SS, etc etc, should be logged- the time you made the phone call, or spoke to someone, the place and date, etc, so they can't 'forget' what they may have said to you. Best, too, to get email addrsses, and then after every meeting or phone call to send an email to a named individual if possible, giving a resume of the contents of the meeting/phone call...

eg, Dear xxx, in respect of our meeting/phone conversation on xxxxx (time and date and venue), I understand that ....' and just repeat what they told you! End it with 'please confirm I have understood this correctly, and if not, please correct this information. Thank you.'

Again, the purpose is to hold them to account, and not let them say calls never happened, or whatever they had said or promised they then deny or 'forget'.

Good luck with it al!

Great advice re-calls Jenny. Tbh, I try to force them to only contact me via email, because it's so much easier than noting down tel conversations and then typing them up. Anyway, due to my neuro, I can barely remember half the stuff they said once I put the phone down, so, pants to that rigmarole. I notice the dodgier they are, the more they try to ''call you.....just for a chat''. Or ''drop by to discuss things'' (brow beat more like).

Nah. Force em to email or whatsapp wherever possible. That's my current M.O. Legally, they're supposed to contact you using the method that best suits your disability anyway??? Unsure what an able bod could do to push them to email? Anyone?

[jenny lucas]

Re 'not remembering' phone calls.....I have sometimes said, quite truthfully, that I CANNOT take in information verbally, as it goes in one ear and out the other (especially in 'stress' conditions.)

I once seriously pxxxed off a hospital consultant as I sat scribbling down everything she was saying to me. She got really shirty, and said, 'Could you please listen to me and pay attention' (or words to that effect - really snotty!). I simply said, 'I won't remember a thing you say if I don't write it down'.

Now, clearly, she was both used to people 'paying her attention respectfully' (whether junior medics or the great unwashed public!), and also, I suspect, she did NOT like that I WAS 'recording what she said'......

I even once had a manager who, in staff meetings, called me out for writing down his wonderful words of wisdom and encouragement! He wanted 'admiring faces' turned to him. Again, I just said if I didn't write it down his words were completely wasted on me as I wouldn't remember a thing!

I do think it's a 'power play' though - from both directions. One side DOES NOT WANT you recording them, and the other side DOES want to be seen recording the exchange!

Do you remember the bit in Hot Fuzz where Seagent Angel deliberately starts writing down in his notebook (which he tells his sidekick is an officer's most powerful weapon!), everything a suspect is saying to him. The suspect gets REALLY shirty....

So, I think it's a definitely a power issue, and that is why those 'in charge' do NOT like you recording them to 'hold them to account'.

(Good warning about the 'little chat' by the way - that 'pretence' of being casual and chummy while they tell you you can't have the care you need.....!)

[busybee_1607]

Thanks for all your advice. Dad is still in hospital and has his appetite back. They will do a further endoscopy on Thursday to find out what exactly is going on. Unfortunately he is very confused again, prior to this my Dad has only ever been admitted to hospital once in July this year where he also had about two days of delirium. Feeling I most likely will have to give up my job.

[jenny lucas]

The pressure to 'give up one's job' and take on fulltime care can be overwhelming! It just seems like the SIMPLEST thing to do, the thing that 'solves everything'....

BUT PLEASE PLEASE PLEASE do NOT rush into this HUGE decision.

Look, the really awful question is this - how long will your dad live?

I know that sounds dreadful, but full time care for, say, six months, a year, is 'doable'. But longer than that ....your life 'disappears'. It's as simple and brutal as that.

I'm not very good on this, but other's here know more than me, and do ask the experts on CUK as well, but it could be that your father is ENTITLED to some respite care (provided by the NHS/SS), before sending him back home.

This might give you - while he is in a care home/nursing home for a few weeks - to give you the VITAL time to really sit down and make these big decisions about what you WILL do for him, and what you WON'T.

If you give up your job to look after him full term, how many years will it be before you get your own life back?

That's a horrible question to ask, but it must be asked alas.

[busybee_1607]

My workplace have offered me some options, one of which is sabbatical leave for three or six months. At the moment that is the path I will most likely take, but am taking advice.

[jenny lucas]

That's really helpful of them, but maybe it only 'kicks the can down the road' a while?? Again, I don't think you can avoid the 'big question' which is 'how long' has your dad got.

My fear is that, say, you take out 6 months from work, look after him yourself for that time, but he is still alive at the end of six months - and you want to go back to work. Will he accept 'outside help' or 'residential care'??

Would looking after him yourself for six months just 'disappoint' him when you go back to work (OR, you just #stay off work indefinitely.....?????)

On the other hand, if having you for six months is either his 'last six months' then it would be lovely if you could have that 'full on' time with him, and he with you. OR if after six months he really NEEDED residential care (ie, even if you stayed off work you could NOT look after him at home any longer anyway.)

It's SO difficult to know what is the best decision to take at this time.

[jenny lucas]

PS Full time caring can be very boring. Sounds 'trivial' but day after day after day after day.......??

on the other hand, this is your dad, and if it's the last time of your life you spend with him....???