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Newbie battling for support - Carers UK Forum

Newbie battling for support

Tell us a bit about yourself here.
I'm the registered carer for my 92 year old Dad, who is rapidly deteriorating. He can no longer stand (not even with help) and needs help in getting to the loo, washing etc. We give in the same house, together with my partner, who receives PIP because his back is shot. I gave up my rented home to move in to look after Dad.

Dad does not want to do into residential care or hospital: he wants to die at home and I respect his wishes. But it's getting to the stage where I feel I'm not giving the level of care which he deserves.

Yesterday his doctor made a home visit and prescribed antibiotics for a lesion on his foot: this is the only medication Dad is on. I explained that I need help, and was told that the GP would contact Social Services and stress that a visiting carer was needed urgently.

Later the same day, I had a phone call from the branch of Social Services who deal with physio and occupational health, advising that they will visit tomorrow and make a full assessment to see what can be put in place to ensure that he can stay in his own home. So far so good.

Today I received a call from the carers' branch of Social Services asking why I thought I needed help urgently. I explained that this was actually a doctor's referral and was then told that they hadn't been notified that it was urgent. I pointed out that (a) the doctor said it was and (b) the physio and OH people had assured me that "the system" showed a request for a care assessment as a matter of urgency. This was denied. After an interesting exchange, during which I managed to keep my temper, but did, however, become hysterical, I was told that the case would be referred to a manager who will deal with it "as soon as he can".

I am functioning on virtually no sleep and losing my grip on reality. Earlier today I became hysterical in Sainsbury's because I couldn't decide what brand of tinned fruit to buy.

Please keep your fingers crossed for me that Social Services decide I need help!
You have clearly reached what I call the "Clapped Out Carer" stage. You have done too much for too long without any support, and are on the verge of a nervous breakdown.
No one wants to end their days in a care home, no relative wants it either, but many of us, including me, reached the point where no other option was left. People at the end of their lives NEED a team of carers 24/7, no one person can provide that.
Get in touch with the GP who came out and tell him what happened today.
If Social Services don't arrange anything tomorrow then ring 111, who can call out an ambulance if necessary. BUT they can also give SSD a verbal kick up the backside and insist they arrange care from the Rapid Response Team. Every SSD has to have a team like this specifically to keep people out of hospital.
Do you think dad is dying? Google "Signs of Dying" (I did this with tears rolling down my cheeks, it's hard, I know) and read what you find, well written articles from people who have worked in the hospice movement. They explain how the body gradually shuts down.
Is there a hospice in your area? They might be able to offer help and support.
Also google "NHS Continuing Healthcare Fast Track" which the GP can arrange within 48 hours if appropriate.

There are lots of former carers here who have been in the same situation, who are here for you. If there is ANYTHING you want to ask, don't be afraid to do so.
Oh god, a sane voice in an insane universe - thank you so much!

I'm going to raise the matter tomorrow with the physio and OH guys, and I also have an appointment with my own GP (sadly, not at the same surgery) because I need something to get me through all this.

I'm alternating between bloody furious and weak and wobbly mode at the moment: but you really can have no idea quite how much your kind reply means.
If ever the subject of NHS Continuing Healthcare is raised , the full sp can be found under the main CHC thread :

https://www.carersuk.org/forum/support- ... inks-32532

Best entered after a very strong coffee ... or something a little stronger.

At first galance , appears to be written Kingon ... stay with it ... and shout at any point for help , even a translation into plain English.
Do be aware that the 'default' position of SS is always to 'deny need for any care'. It's automatic with them now!

They will delay, 'lose' stuff, deny stuff ,etc etc, and it's qujte routine. The sole purpose is to defer the point at which they have to spend any money on your dad....

LOG all conversations and calls, and make notes, times, dates, who you spoke to etc. If possible, get an email address, and write to them saying 'Further to our telephone conversation today, I understand that you will be ....(whatever they said).' This 'confirms' the exchange, and makes it less deniable. After all, IF you 'got it wrong' about what they said, it's up to THEM to email you back and tell you!

It's infurating and depressing but it is all about them saving money they haven't got in the first place as they are chronically underfunded for the demands made on them by an ageing population etc etc etc.

However, talking about money - what is your dad's financial situation? You say you moved into his home - does he own it, rent it?

It's REALLY important at this stage to 'safeguard your own position'. You gave up your rented accommodation, but, if your dad is in rented accommodation then, when and as he dies (or does go into care/hospice etc) unless YOU and your partner are on the tenancy, you'll be homeless yourselves!

But if he owns his own home, and goes into residential care, he'll have to use the value of the house/flat to pay his fees, so, again, you may be forced to sell up to generate the cash to pay those. Be aware care homes cost £100 A DAY, at least - my MIL at 94 has nearly spent all the money she got from selling her flat when she went into care!

All that said, I woul think the first best option is to get outside carers in. If your dad has more than £23k or so in savings, he'll have to pay for them himself - under that and the SS/Council 'should' pay (but may take some of his pension etc etc).

If he does have to pay himself, the upside is you don't have to wait for SS, just phone a care agency and get someone in straight away, as much as you need for him. Don't worry if he objects - tell him unless you get help he'll have to go into a home. I agree it would be lovely for him to NOT go in, but not if you collapse with the stress of it!

Expect to pay around £20 an hour (maybe more!) for a carer (the carers themselves don't get that much!!!!!!!!), but honestly, if it buys your sanity, it's WELL worth it.

Do you have Power of Attorney, or is your dad reluctant (many are, in a way understandably). He may be fine now, but if he weakens, or collapses, it could be very tricky unless you have access to his finances.

Wishing you all the best - there is a lot of help (and 'Been there got the teeshirts'!) here on the forum. Don't despair!
Dad owns his house (he inherited from Mum, who inherited it from her own mother). His sole income is his state pension plus Attendance Allowance: I get Carers' Allowance, a minute amount of Occupational Pension from my late husband and a top-up of Income Support.

The last time I saw his bank account he had £34 in it. Mine isn't that much healthier.

I did make copious notes of today's phone call (all except the name of the person I spoke to - I forgot to ask that until right at the end of the conversation, and she seems to have thought that the conversation was over at that point, as she terminated the call. I shall be generous and assume that was the case, but shan't make that mistake again.)

Most of the time I appeared to be answering a set questionnaire:

"You say he's 92 and deteriorating fast. What exactly is the matter with him?" Biting back the response "He's 92 and dying, lamebrain", I explained that he is completely unable to stand, with or without help, is in extreme pain, and is a dead weight.

So, onto the next question: "Is he mobile?". For my answer, see above...

And the next: "Can he cook for himself?" I mean, HOW, for god's sake? Polite answer: No, because for one thing he can't stand. For another, if he could somehow make his way into the kitchen, there's a fair chance of him falling onto the cooker.

You know, this is the third time I've been through this: firstly my aunt, who had a terminal brain tumour, then my mother, who was basically just worn out, and now Dad. I don't remember it being so hard to get help before!
Can I ask how old you are?
Do you have any brothers and sisters?
(Very relevant!)
What do you really want? Care at home, hospital, hospice?

I've now lost all four parents, brother, and husband. Feel free to ask anything. That's why I stick around here.
I also have a brain damaged son. Social Services drive me nuts too!
I'm 64, and an only child. What I really want - help with caring for Dad at home. Someone with a bit more nursing knowledge than me (which wouldn't be hard) to help me get him to the loo in the mornings and wash him. And I wouldn't mind an uninterrupted night's sleep, either, but that's most unlikely. Last night he woke me at 2 am to ask for a drink (fair enough, can't complain at that) and again at 5.30 to ask if I could find anything worth watching on the TV. You've got to laugh...

In all fairness, the poor old soul does suffer from insomnia, and it must be a dreadfully long night for him.
If you are 64, living in dad's house as his carer, then the value of the house should NOT be taken into consideration of he needs residential care.
Care at home is means tested, if you have below £23,000 you make a contribution depending on income and savings. So nothing to worry about there either.
If he qualifies for NHS Continuing Healthcare, it's entirely free.
Hope that puts your mind at rest on that score.
Thanks for that, bowlingbun: one weight off my mind.