Help with DLA night time care needs

Indie_Kid

pipkin71 wrote: »

I've suggested to sh before now, that they contact adult social services. Perhaps, now she is at her parents, she may find it useful.

When I was registered partially sighted in 2007, I saw someone. She had a look at the houe and my dad asked her about something and w got told there's nothing they can do for. The low vision clinic have said the same.

If millions of £s a year are being paid yet making no discernible improvement to anyones situation as far as receiving care is concerned. then it does need looking at.

But how do you decide whether the money has helped (or helps) them? A lot of my money goes on aids - yes, it makes life slightly easier; but it doesn't completely remove the obstacles for me.

TOBRUK

krisskross wrote: »

This is exactly why I feel guilty..because he receives the care he needs, but freely, lovingly given. So if I feel he perhaps shouldn't get the money because he has no need to pay for the care he receives then should someone get the money who doesn't even get the care? How can you have a real need for the care if you manage without it?

You see my husband simply could not survive without the care I give and would have to presumably pay to put something in place to replace me if I were not here.

Yes I understand what you are saying krisscross. I have tried to explain that I don't manage a lot of the time, I do need the care although I don't get it!

Is falling getting out of bed, or crawling across the landing, falling off the toilet, waking up on the bathroom floor not knowing how long you've been there .. unable to recall getting up at all managing?

I'll just leave it there.

krisskross

sh1305 wrote: »

I have the smallest room in the house. There is no room for me to have a commode. Also, how will I wash my hands? And does it really solve the issue of me not being able to wipe myself? of course it doesn't.



I know people who see it as this, spend it on whatever they want (nights out, games consoles, etc) and whinge they have too much money. Well, no-one forces you to claim DLA, do they?



How? I get £151.60 every 4 weeks. £100 of that, I don't see at all. Last week, I spent around £30 on disability related equipment. Somehow, I have £21.60 left for disability related stuff for the next 3 weeks. Out of that, I need to buy coloured paper at at least £10 a ream (500 sheets) - that leaves me with £11.60 to last me 3 weeks. During those 3 weeks, I may have to buy more things.

what happens to the £100 a month you don't see?

We used to give wet wipes to our patients who couldn't get to the washbasin for their hands after they had used the commode. Would this work for you? Who usually wipes your bottom? Who did it for you during your year at University?

Honestly I think you sometimes exaggerate your situation out of all proportion and it simply sounds made up. You never seem to look for the simple solutions but have a 'woe is me' attitude towards everything.

Indie_Kid

krisskross wrote: »

what happens to the £100 a month you don't see?

£85 of that goes to my parents for various stuff and £15 of that is phone bill. (I have an adapted phone - this was more expensive than the others)

You never seem to look for the simple solutions.

What simple solution? Oh sorry, I forgot - you have NO idea what the full list of problems I have are.

pipkin71

How often during the night do you need intimate care due to toileting, sh? How many nights a week?

krisskross

sh1305 wrote: »

£85 of that goes to my parents for various stuff and £15 of that is phone bill. (I have an adapted phone - this was more expensive than the others)



What simple solution? Oh sorry, I forgot - you have NO idea what the full list of problems I have are.

My husband has an adapted phone which was free from Worcester Supporting people. It is meant for both deaf and partially sighted people with flashing lights and huge number buttons.

However you would have a phone anyway so unless you would have got a completely free one from somewhere you can't count the whole cost can you?

Still there is no need for you to justify yourself to someone on an internet forum. When the medicals come in they will be the people that need convincing.

Indie_Kid

pipkin71 wrote: »

How often during the night do you need intimate care due to toileting, sh? How many nights a week?

At least once a night, 5 nights a week. (unless I've had to drink a lot during the day, in which case, it's sometimes twice a night) I also wake up in a lot of pain - I go to sleep on my back, because this doesn't cause me as much pain, yet is really uncomfortable and I always wake up in pain on my side.

Indie_Kid

krisskross wrote: »

My husband has an adapted phone which was free from Worcester Supporting people. It is meant for both deaf and partially sighted people with flashing lights and huge number buttons.

Due to the effects of my conditions, I can't stand flashing lights. Plus, because I was away at uni, a contract was much cheaper.

pipkin71

sh1305 wrote: »

At least once a night, 5 nights a week. (unless I've had to drink a lot during the day, in which case, it's sometimes twice a night) I also wake up in a lot of pain - I go to sleep on my back, because this doesn't cause me as much pain, yet is really uncomfortable and I always wake up in pain on my side.

I wonder if it would help following a programme to regulate your bowel movements, so that you don't need to evacuate during the night??

Then again, your post reads as you emptying your bladder during the night - do you need help wiping then?

I'm the same with getting up and reducing my tea intake has helped. I can sympathise with the pain you get when lying in various positions.

summerof0763

unless your disabled yourself,no-one can fully appreciate how difficult things are for the disabled.
everyday day things take so much longer,things you take for granted,be it taking a walk,visiting friends etc,take planning and dont always happen as it takes effort.