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The pressures of being a carer - Carers UK Forum

The pressures of being a carer

Discuss news stories and political issues that affect carers.
Most people could not begin to imagine the extent of our exclusions and lack of choices. Birkett quotes the mother of a disabled child saying "life is relentless. It's physically and mentally punishing. But the biggest frustration is the constant battle that you have with social services, health and education to get any kind of help and support".

Read it all here

You can add comments or email the lady direct.Her email addy included at the end of the article.
I am trying to fight on several different fronts at the moment, and in two minds about whether to preceed with a stage two complaint. It needs dealing with, but is it worth the stress and hassle, from Social Services?

I don't get down and depressed through caring, I get so low due to bureaucracy, as so many others do.
it`s hard work being a carer, it is never ending all i ask is for is 1.respite care say 2 weeks every 3 months FREE to give me a break 2. pay me a wage for the work i and other carers do it`s the old complaint if i was not the old doll`s carer who would be doing it ? the state thats who and at a cost of anything from £450 - £1-200 per week yet all i get is £50 nowt else thats yer lot peeoff dont borther me any more on yer way there`s the door yer mug.
Most carers I know feel the same way, Lazydaisy.

They don't complain about the caring but they are really fed up with having to fight everyone for everything all the time.
it is the fighting that gets me down,, fighting for appointments or things that will make amy feel like shes a normal lil girl, we r fighting at the moment to find out who her social worker is! how hard should that be???well for surrey bloody hard

I love caring for her, i love seeing how well she does and i kknow its me doing her physio thats helped but i know ive fought so hard to get the help for her , its just not there unless i kick up a stink and i hate kicking up a fuss!
I agree with everything said so far in this thread.

If somebody had just stepped in the last fortnight and actually sent a doctor her the first time I asked (instead of taking 4 phone calls - one to NHS direct, 2 back and one from them to SELDOC), If somebody had seen fit to help do the meals or the shopping, if somebody had even just taken the laundry off my hands - I might, just might, not still be running round like a blue tailed fly. Image

Haven't posted much since the end of Feb because on top of the usual stuff I do as my husband's carer...

couldn't do any washing at all because vomiting was so frequent that leaving an airer in shower room wasn't safe.

a lot of food had to be thrown out.

more food had to be bought - most of it approx twice the price of what I'd usually get, most of it more perishable than the usual stuff.

3 weeks of meals had to be completely replanned (suddenly nothing solid, sharp edged, chewy, fibrous, crunchy, acidic, spicy, or at all fatty)

spent 3 hours replacing a burnt out blender

spent ages making creme caramel, or custard, or soup - twice a day, every day for 2 1/2 weeks.

spent half a day on the phone to NHS direct & SELDOC (the out of hours service)

spent half a day asking his GP not to stop one of his tablets which keeps him just about mobile (GP wouldn't come out and caree not well enough to leave the flat, so I had to go to the surgery without him, then onward to the chemist to get a repeat prescription which wouldn't have otherwise been needed just yet).

Don't get me wrong, it was worth it - my husband is finally back on solid food Image (after nearly 3 weeks of letting the oesophagus heal), but it feels like I've been working flat out. And the usual amount of work to be done here is a lot less than many of the other carers on this board. Could still do without having to fight for every little thing though.
Most carers I know feel the same way, Lazydaisy.

They don't complain about the caring but they are really fed up with having to fight everyone for everything all the time.
Yes, I'm one of those who feels that way. I'm also fed up with one professional saying one thing and then someone else visits the next time and disagrees with everything the first one said. Who do you believe and what do you do? It just makes everything harder.
A lot of what I/we've had to do is just what we've worked out for ourselves. The first time I had to do bowel stuff for hubby, the district nurse came to our house, put hubby onto his side on the bed, held up the enema to me and said "You just pop it in there." and then just left. THAT WAS MY SOLE TRAINING AND DEMONSTRATION OF BOWEL CARE MANAGEMENT. We have struggled and struggled with some of his care, nobody has actually shown me how to do anything, I've had to work it out myself OR hubby has had to tell me how to do things or what to do. He can't physically show me himself, can't use his hands to demonstrate anything. Fed up of struggling with things and I'M the one who has to educate the new PAs with things. I'm not a nurse. I'm not a PA. I don't have any interest in medical things. It's just taken for granted that we all know how to do everything and understand about it all. And then, people get cross when we get annoyed, or when I lose my temper or burst into tears with anger. Hubby's former GP refused to come out to see him, she just asked for samples which we gave her, he was constantly having trouble weeing and had blood in his wee. She prescribed 3 lots of anti-biotics over 3 weeks without even seeing him. It cleared up eventually, but when hubby went for his annual MOT at the Spinal Unit, his consultant told him that he'd been retaining too much urine in his kidneys and that he had to have an operation, otherwise his kidneys would be damaged even more, as a result of the burning urine. This had been happening since he had trouble with his wee, when his GP refused to see him. She said that it was just a urine infection and there was no need for her to see him. WE SHOULD HAVE PURSUED THE LINE OF BLAME FOR HIS KIDNEY DAMAGE, but, as you say- we didn't have the energy or the time or inclination to do it. We damn well should have done, really. You just can't be ar**d most of the time to fight any more and professionals know that.
Hi Piscesmaid, please don't apologise for your post. Whatever illness or however we are caring for people - we are still carers with a very difficult job and that certainly includes you.

Hugs to us all,
Bluebird xx
Piscesmaid, you've got more than enough to handle. Have you thought of writing down how your OH has been and handing a copy to his psychiatrist? This would help you to tell the psych how things really are without causing too much upset, and being in writing means it cannot be so easily ignored...