Help with DLA night time care needs

TOBRUK

krisskross wrote: »

No of course you are not less deserving but surely if someone is paid high rate care because they say they NEED 2 hours care each night but manage without it do you not agree that this could be an area that would be looked at when considering the proposed 20% reduction in DLA payments?

It would be better to reduce some people's amounts than to completely take away others.

I understand and appreciate what you are saying krisskross and I'm not saying you are wrong, and I am not looking for any arguement or debate on this issue. The fact that I don't get the help doesn't mean I don't need the help. I would not have ended up in Intesive Care if I had someone here.

I only answered (openly and honestly) the questions they asked. The fact that I don't receive the help doesn't mean that I manage, far from it - when you find you can't get to the bathroom, or fall off the toilet, fall getting out of bed, unable to get to bed what do you do? When I fall and unable to move my legs for a time, I just stay there for ages until I am able to move. I just accept that this is my situation as it is. I actually got dressed for a couple of hours on Sunday - now that's something isn't it? I feel pathetic and no amount of DLA can change that. My life used to be hectic, I had a career, I had a social life ... I had a life - it's now an existence, and no, I am not seeking sympathy.

I don't mind them looking into how DLA is paid. It may be they could have someone come to check on me during the night. If I were to move near family I would get the help I need.

krisskross

TOBRUK wrote: »

I understand and appreciate what you are saying krisskross and I'm not saying you are wrong, and I am not looking for any arguement or debate on this issue. The fact that I don't get the help doesn't mean I don't need the help. I would not have ended up in Intesive Care if I had someone here.

I only answered (openly and honestly) the questions they asked. The fact that I don't receive the help doesn't mean that I manage, far from it - when you find you can't get to the bathroom, or fall off the toilet, fall getting out of bed, unable to get to bed what do you do? When I fall and unable to move my legs for a time, I just stay there for ages until I am able to move. I just accept that this is my situation as it is. I actually got dressed for a couple of hours on Sunday - now that's something isn't it? I feel pathetic and no amount of DLA can change that. My life used to be hectic, I had a career, I had a social life ... I had a life - it's now an existence, and no, I am not seeking sympathy.

I don't mind them looking into how DLA is paid. It may be they could have someone come to check on me during the night. If I were to move near family I would get the help I need.

Our local housing association, accessible to everyone not just their tenants, has a careline scheme where you have a wristband that you press if you find yourself in difficulty day or night. Don't have to be near the phone, it is all wireless. We pay £10 a month for this in case my husband has a fall or is taken ill when I am not around. Would something like this give you more confidence? Have you approached the Housing Associations where your family live about sheltered adapted accomodation?

summerof0763

i dont think anyone who is disabled,should HAVE to justify what dla is used for.the fact they receive it means they need help in a variety of ways,is NONE of the benefit bashers business.
think anyone on dla would GLADLY give it all up and have a life,not an existance which is what it is for most.
i know i would give mine up,i hate the fact i HAVE to rely on certain people to do the simplest of tasks,that non disabled take for granted.

TOBRUK

krisskross wrote: »

Our local housing association, accessible to everyone not just their tenants, has a careline scheme where you have a wristband that you press if you find yourself in difficulty day or night. Don't have to be near the phone, it is all wireless. We pay £10 a month for this in case my husband has a fall or is taken ill when I am not around. Would something like this give you more confidence? Have you approached the Housing Associations where your family live about sheltered adapted accomodation?

Thank you for that krisskross, much appreciated. Perhaps the wristband thing is something to look into. I wouldn't say it was anything to do with confidence though ... if you fall you fall. I have been up since 5am this morning and since then have been able to make toast, have a drink and take medication.

Housing Association - there isn't anything like this where my family live - it's a very rural area. The nearest hospital is 25 miles away. My GP is hoping that I will be able to get a bungalow near my family which would be a great deal better, however the housing market isn't good at the moment.

krisskross

TOBRUK wrote: »

Thank you for that krisskross, much appreciated. Perhaps the wristband thing is something to look into. I wouldn't say it was anything to do with confidence though ... if you fall you fall. I have been up since 5am this morning and since then have been able to make toast, have a drink and take medication.

Probably not confidence, reassurance would be a better word. My husband is a very early riser too, he is always up at 4am. Pain normally wakes him. He just gets a slice of bread and a banana for himself so he can take some painkillers.

The careline scheme also keeps details of your medication, GP, next of kin etc so will contact someone in case of emergency.

There is also a keysafe thing that they do where you can have a sort of little code operated safe accessible from outside so a house key would be available if needed.

I note my MSE stalker continues to leap on anything I post:rotfl:

TOBRUK

Yes, it's the pain that wakes me up somewhere between 4 and 5am. It takes an hour or so for medication to work and to get any mobility - just sitting there waiting for it to kick in. Making a cup of cofee is a task in itself!

Careline scheme is definitely something to look into, thank you.

pipkin71

TOBRUK wrote: »

The fact that I don't receive the help I need doesn't mean that I don't need help.

I agree TOBRUK. I also receive HRC and have the care needs even if there isn't always anyone who can assist with my care needs.

I do see where kk is coming from though because people can claim for needs that may not actually be met. As you say though, the need will still be there.

pipkin71

krisskross wrote: »

i do understand all this. That you therefore have unmet care needs. So what difference does having the extra money make? Is it sort of compensation for your poor health? How do you answer the time questions on the forms?

Time questions are difficult, so personally I would write that such and such is an approximation because I cannot give a definite answer.

The extra money means someone is able to buy aids that will help, or employ someone to help with their needs, ect.

I've come across it before where DLA has been referred to as compensation for disabilities. I suppose it would depend on what people were using their money for, but I don't see it as a compensation. I don't know what others feel about that.

pipkin71

TOBRUK wrote: »

The fact that I don't receive the help doesn't mean that I manage, far from it - when you find you can't get to the bathroom, or fall off the toilet, fall getting out of bed, unable to get to bed what do you do? When I fall and unable to move my legs for a time, I just stay there for ages until I am able to move. I just accept that this is my situation as it is.

Yes, there are many issues I face during the night, too. I do have some of my care needs met but not all and at times it is very difficult, so I feel for you here

TOBRUK wrote: »

I don't mind them looking into how DLA is paid. It may be they could have someone come to check on me during the night. If I were to move near family I would get the help I need.

Agree with this. I have no objection with them looking at how DLA is paid.

I hope your move goes as planned and you do manage to receive the help you need, TOBRUK

krisskross

I know a 94 year who gets high rate AA. She is blind, quite frail, lives alone and values her bit of independence.

She uses her AA money to pay someone to come in morning and evening to help her wash, change clothing etc. She also has a young woman for an hour or so a week a week to do her cleaning. Plus she has meals on wheels 5 days a week and also pays the £10 a month for the careline. So to me the extra cash she gets is definitely used for the intended purpose.

I am sure she has to find extra money on top of the AA but she is happy that her extra needs are recognised and that she gets some funding to help.