Trying to explain unpaid caring?

All about caring
1

I am trying to explain to this NHS lady about unpaid caring, she seems to think that i should contact social services and they will do everything.

My issue is that Social Services have cut services leaving the elderly/disabled with little help and support.

I am looking after my partner who is disabled and suffers from complex mental illness.

I do all the housework, cooking cleaning shopping you name it i do it, a normal married couple would share the household jobs, when you are married to someone disabled, of course they can’t.

I was looking after my friend, in effect i was responsible for 2 households.

The constant emotional worry, the constant fighting to get services, treatment for my partner, fighting with the benefits, the constant issues with medication, you have to order every month, then the medication can take 10 days to be dispensed in total, your partner almost running out every month.
my partner takes a lot of tablets but cannot remember so needs to be reminded every day.

I was looking after my friend who died last year, again the same issues, i gave a massive load of support to him but got zero unpaid carer support despite looking after multiple carees.

I am still grieving for my friend, still upset, having bad memory’s but having again problems trying to get bereavement support.

The covid situation isn’t helping at all , my partner worries and worries, every time she sees all the stockpiling news, worries there’s going to be no food left.

I am battling long term chronic illness myself but getting no support for that and no unpaid carer support.

Life really is difficult and you don’t just get help handed to you on a plate like this NHS lady thinks.

I read in one report that only 12 per cent of unpaid carers feel they are getting the support they need, but that report was before covid probably a lot of the support, day centres etc has been cut now.

Can anyone add to this, the fact that i am not getting any support, that i don’t ask for support, i have given up asking, what is the point of asking for services that don’t exist.

Tired, frustrated, fed up, depressed, feeling not supported, that’s thousands of unpaid carers.

And the GP should be helping as well, NO nothing to do with him, but i am looking after his patients and my health is suffering as a result.

2

I understand completely.
It’s too cold to go out at the moment, so I’ve finally been tackling my son’s “filing mountain”. It makes me so depressed/angry that I took all the ring binders relating to him off the shelf in what is supposed to be my sewing room, just before Christmas, stuck them in boxes, and put them in the conservatory. Any miscellaneous papers were chucked in a plastic box.
I’m about to complain to the social workers governing body about the conduct of someone I deal with. so I couldn’t avoid it any longer.
It makes depressing reading, the same things, over, and over and over again, like a stuck record player.
I’m not supposed to be doing ANY caring, but if I don’t do certain things with M, no one else will.
I’m so, so tired of it all. I never fought with my husband, we were like two halves of a whole. He was an engineer, really good at problem solving. I’ve never asked for anything other than what the Care Act says my son can have.
So why won’t they just get on and provide it?!?!
I’ve recently discovered that his budget has been slashed by over £300 with absolutely no discussion whatsoever!!

3

Bowlingbun

Thats really bad what they have done to the budget.

Surely, they should have had a review?,

Time to jump up and down?

Only we shouldn’t have to should we.

Oh, and I know what you mean about all the ring binders.

They drive me mad!

It just shows what we have to spend our time on.

Life is too short, and we shouldn’t have to.

4

I’m now sorting out a formal complaint about the area manager tasked to sort things out 4 years ago. 20!!officers involved, no proper care plans, no risk assessments, utter shambles.

5

I feel that a lot of people, paid professional people have let me down and not acted properly.

I was in contact with a lot of staff, my friend was in and out of hospital, I was named as his unpaid carer but no carers assessment was ever arranged or extra help.

He was just sent home and i had to provide the extra care.

All these professional staff, Hospital staff, social services staff, the Doctors surgery etc should have been seeking out and identifying unpaid carers and helping and supporting, signposting me to unpaid carer help and advice.

No wonder there are thousands of unidentified unpaid carers, all these good paid professional staff just didn’t care, it was nothing to do with them, except the problem was it is to do with them.

The councils should be identifying unpaid carers, the NHS should be identifying and supporting unpaid carers according to NHS England Guidance.

I still feel very angry that my friend and i were treated so badly.
Same with Me Bowlingbun, if i didn’t do things no one else did.

My friend was just totally abandoned by social Services, very let down, the carers turned up when they wanted, turned up late or didn’t turn up at all, no one cared, no one did anything.

If i turned up late for my work I would be disciplined and then sacked, they couldn’t sack these carers, there would be no one left.

Not one second of extra help was ever provided for my friend, how about Christmas, help going shopping, buying presents for friends etc.
You want to have a normal Christmas, a proper Christmas dinner friends around, nope you get a £2.50 microwave Christmas dinner plonked in front of you.
How about your birthday, you want to have a party or go out for a meal with friends, nope no help supplied.

My friend was just left for hours and hours, less than 3 hours of care a day, who provides the other 21 hours of help? simple answer me.

But it wasn’t my job to provide emergency care and night care, it should have been arranged, no we don’t do that.

There was a case that the Ombudsman dealt with, if there are identified needs, they have to be met, the council can’t just pick and choose, no we don’t have to provide this service or that service.
The council just did, minimum care and if you can’t cope you end up back in care.

The whole system stinks, going through complaints, you are expecting elderly and disabled people to go through a complex and lengthy complaints system which takes months and months.

Advice for unpaid carers from the council, you don’t have to care, but the council are providing such a crummy service we don’t have any choice but to step in and help.
It is human nature we don’t like seeing people suffer, we like to help, gives a good feeling but helping every day, you just end up depressed and miserable.

The government says that unpaid carers should have their own life, be well supported, our health protected, what a load of baloney, they must have a big nose telling so many lies.

Been told to ring the Samaritans as i was suicidal after my friends death, surely i should been provided proper bereavement support, nope no support provided.

to Social services its just a cross them off the list, they don’t need care anymore.

Rant over except its not over, how do i get proper support, job swap the manager of Social Services?

Let him suffer the care that he is providing, maybe he would see what was going on?

Because i don’t think they really know, they paint a cosy picture that the family will help, what if there is no family, many elderly just don’t have family, rarely see their family.

Social Services what a complete joke.

So what do i do go through complaints? that would take weeks/months with no guarantees at the end of it?

I am an exhausted unpaid carer but simply unwilling to go through Social services for help, what help have Social Services given me, NONE.

But it seems i am blamed that i didn’t cooperate with Social Services, perhaps if they had carried out assessments properly then i would have done, perhaps if they had provided an advocate under the Care Act But NOPE not allowed.

But Social Services just provide so little, bare minimum of care, surely this lady should realise this, she seems to have blinkers on like a horse.

basically again i give up, i just can’t be bothered to explain my situation for about the fiftieth time only to again be refused all help.

6

Yup! No support for carers but loads of support for sex workers / alcoholics / drug users / criminals etc. It doesn’t make sense to me at all.

I’m not saying the above categories should not be afforded support but they can’t just ignore unpaid carers and tell them to just get on with it. It’s one thing that just doesn’t make any sense to me at all. Support should be for all people that require it not just a few categories only.

So it’s like “Oh Mr Jones, you are an alcoholic, have 5 different professionals from 5 different organisations giving you support”. Then it’s “Oh Mr OTV, you are the unpaid carer for 3 people, good stuff, carry on doing the hard work, no support for you”.

:-??? :-??? :-???

7

The council says they support unpaid carers but where how, you have to be assessed and qualify, tick the right boxes in order to get the support.

But what support getting a 2 hour afternoon break, big deal I do night care but would like a night or even weekend off but night respite, weekend respite just doesn’t exist.

How much funding is available for unpaid carers? no one can tell me, what help and support is available? no one can tell me.

Getting advocacy for an unpaid carer NO chance doesn’t exist , for many years i was acting as an advocate for my friend, writing letters, doing phone calls, fighting his corner but who fought my corner? No one.

Supplying unqualified carers on minimum wage, that’s not the way forward, expert professional qualified care staff but they cost too much.

Giving me a grant of £150, so that’s paying me £150 for a years work, I don’t get carers allowance but i didn’t get the grant either i didn’t qualify.

I have been advised there is plenty of support available? but where how, I don’t know anyone who is getting support, just refused and left with no help.

The government seems to think we are happy to care, we don’t mind caring, but many like myself just don’t have the time to protest and complain and fight to get help AND Care as well, you just can’t.

They keep saying they will reform Social Care, it was in the paper today, the Care Act was supposed to improve Social Care, a better deal for the elderly/disabled and their carers.

I never got any help from the Care Act, people didn’t get more care, help and support, the money just was not available to provide the extra support.

If anything it was worse, the council just cut and cut and cut services.

I am tired and ill and sick of fighting bureaucrats so what do we do, who should fight for us? I don’t know

8

Unpaid carers are invisible. It’s assumed you do everything no one else will.
Yesterday, I went to see my son with LD. In theory he is supported by his care staff to do everything at his flat, but there are always things for me to do. It was my birthday on Sunday. I rang him at his flat to say I was on my way, it’s a 30 minute journey across the New Forest, glorious drive yesterday. Arrived and there was no one to be seen!
I rang the door bell, yelled over the fence, knocked his lounge window. No one. I’d just got out my emergency set of keys, that live in the glovebox, when staff turned up with M in the passenger seat. He’d been taken to buy me a bunch of flowers, which I was given, still with the label on. He knows I don’t have flowers in the house, because I get hay fever.
So no one had thought before my visit to help him get me a proper present, take the price off, and wrap it?
I always love Ferrero Rocher, Raffaello, and Yardleys Lavender powder or soap, this is supposed to be on the records. It couldn’t be simpler.
I took with me a tray of apple juice cartons which we buy in Costco. Staff doing the shopping once a week on Friday sticks rigidly to her list, won’t add anything else to it. I plead for staff to list things I take M that I know he likes, to be added to the list. They use it, but don’t list it! I’m going to be buying him gammon steak until I die!
I also took him some pump action Head and Shoulders shampoo which he finds easier to use, details of where we are going to stay in July, and details of the possible place to stay in October. If I don’t arrange a holiday for him, no one else will. He told me he wanted some new lampshades to match the one at home, so I checked the lamp fittings, got home, ordered them Click and Collect, and emailed the details to staff to collect them.
Earlier this year I was told the fridge door had broken off. As he was locked down I had to buy a new one. Later inspection revealed a bolt had just come undone!
If I don’t bring his duvet and pillows and curtains home to be washed periodically, they just wouldn’t get done. No one ever thinks about things like this. One way and another I’ve spent a whole day this week doing things for him. Unseen, and unpaid. Meanwhile staff sit on his settee and support him to watch TV or a DVD.

9

There’s just no extra help available for the disabled elderly to live any kind of normal life, just bare minimum care, no thought to the extras.
My friend wanted a new TV, tried to get help going down to the shop, having help guidance, which ones best, help getting it home and of course getting it out of the box, setting it up, a big big 42" tv, get a taxi, pay a man to do it, why should he have to pay another £100 for something as simple as that.

Same with the washing machine, look on the internet and pay someone to fit, another £80.

I did both, i heaved the old washing machine outside, scrap men love dead washing machines and fitted the new one, took about half an hour.
£180 that’s a lot of money to my friend , a lot of money, i was told that the disabled get extra money, they do but not enough to pay for all the extras, just naming 2 above.
You need to get to the doctors, get a taxi, you need shopping, pay for someone to do it, you need the carpets/curtains cleaned, pay for it, there is a limit to finances.
There was limited help shopping, a bus there and back, but my friend needed help going around the shop, reaching items, help packing and paying, No we don’t do that.

Why isn’t there some sort of voluntary scheme to help the elderly/disabled, No you just have to pay extra.

I wouldn’t have minded doing that giving a few hours volunteering to do jobs above, its not rocket science, fitting a new tv , plumbing in a washing machine, pushing someone around the shops but i was doing that anyway.

There are so many basic jobs my friend couldn’t do, the carers can’t won’t or didn’t have time, the carers weren’t allowed to go around when not working, not allowed to be friends.

Pet care another one, my friend had 2 cats, company for him, the cat tray needed emptying every day, stink the house out otherwise, the tray needed washing and changing, help taking the cats to the vets, giving medication every day. The carers just didn’t have time or just didn’t care.

Social services just don’t think or just don’t care about all this, living a normal life and the carers there were just so many, fast turn over, i knew what needed doing at my friends house, the carers just didn’t have a clue.
It was supposed to be according to CQC, a small team that knew him well and that’s what my friend needed a team of help to help with anything, he just had basic dash in, dash out carers just didn’t have the time.
And no help at all going out, socialising etc.

my friend just couldn’t have managed without me, he was supposed to be independent, but you still need the right support.

I still miss him, almost 2 years now since he died, i just can’t believe it.

Final grumble , the carers would just use things up and just not tell anyone, put the empty bottle back, so next time no washing conditioner, the margarine was running out, tell someone , write it on the shopping list.
i kept an eye on everything, house management i think you call, i cleaned the fridge regularly, no one did that, i did regular spring cleans, i took my friend to the garden centre, get some plants, he loved his garden.

There just wasn’t the full time support and that’s what he needed full time support, not just minimum care.

But when he became ill instead of providing more home care, advised moving into a care home miles away, leave his house, leave his garden, get rid of his pets.
I am sure he should have qualified for CHC but very little was done about that.
I looked after him until his death, i took his pets home, still have them, all social services would have done is send them to the local cats home.

Social Services just didn’t care.

There is just so much you can’t explain and no one understands anyway, you have to be an unpaid carer, be in an unpaid carers shoes to really understand.
Paid carers yes they do a very difficult job for not much money, but they go home at the end of a night, they get wages, weekends off, holidays. They can go out for meals whenever they want, have a bath whenever they want, go to the shops, have a good look around, my friend just couldn’t.

But unpaid , we just don’t have choices, we just have to step in as no one else will, say No i have been told, its not my responsibility, i think people who say that just don’t have a clue.