Help with DLA night time care needs

kingfisherblue

summerof0763 wrote: »

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.

Although I understand your comments to some extent, I would also state that for some carers do understand how difficult it is for disabled people.

I am my son's carer. He was born with Down's syndrome and several rare medical conditions. He has developed further medical conditions since then.

My son needs substantial care both day and night. He needs help in every part of his life. The only page that I do not fill out (usually with an essay length answer!) is the page that asks about fits, siezures and blackouts, as fortunately he does not have these. otherwise every page of his DLA form is filled with details of the help he needs.

My son has never known any different. Perhaps as a result of his learning disability, he doesn't realise how hard life can be. I, on the other hand, am very aware. I have fought constant battles on his behalf. I have sought out suitable social and leisure activities that he can manage (thank goodnes for a brilliant Akela at Cubs!). I have become involved in groups for disabled children to ensure that their needs are met.

So certainly for some carers, possibly mainly parent carers, we do understand that everyday things take longer and cannot be taken for granted. This is because our children would not be able to do these things without our input. I'm including tasks such as changing nappies, eating, dressing, etc - at the age of twelve. As for going out, it's not possible unless supervised. Even then, I have to load his wheelchair into the car (I'm thinking of getting a ramp to make this easier on my creaky shoulders and back!), take a change of clothes, nappies and wipes, possibly some milk and medication, strap him in safely (he's still in a car seat), settle him with some books, etc. So I think I can safely say that I know how much effort is involved.

Indie_Kid

skcollobcat10 wrote: »

Also what about ready made meals that you could put in the microwave? You could also do your shopping online with one of the supermarkets this might help.

Ready meals are full of processed rubbish.

shegar

kingfisherblue wrote: »

Although I understand your comments to some extent, I would also state that for some carers do understand how difficult it is for disabled people.

I am my son's carer. He was born with Down's syndrome and several rare medical conditions. He has developed further medical conditions since then.

My son needs substantial care both day and night. He needs help in every part of his life. The only page that I do not fill out (usually with an essay length answer!) is the page that asks about fits, siezures and blackouts, as fortunately he does not have these. otherwise every page of his DLA form is filled with details of the help he needs.

My son has never known any different. Perhaps as a result of his learning disability, he doesn't realise how hard life can be. I, on the other hand, am very aware. I have fought constant battles on his behalf. I have sought out suitable social and leisure activities that he can manage (thank goodnes for a brilliant Akela at Cubs!). I have become involved in groups for disabled children to ensure that their needs are met.

So certainly for some carers, possibly mainly parent carers, we do understand that everyday things take longer and cannot be taken for granted. This is because our children would not be able to do these things without our input. I'm including tasks such as changing nappies, eating, dressing, etc - at the age of twelve. As for going out, it's not possible unless supervised. Even then, I have to load his wheelchair into the car (I'm thinking of getting a ramp to make this easier on my creaky shoulders and back!), take a change of clothes, nappies and wipes, possibly some milk and medication, strap him in safely (he's still in a car seat), settle him with some books, etc. So I think I can safely say that I know how much effort is involved.

Yes kingfisher I know whats its like to look after some one 24/7, my husband had a massive stroke at 49 yrs old nearly 2 yrs ago he is left with no use in left arm and very little in leg, he was in 3 different hospitals then come home to the bungalow once it was adapted for his needs,,

He as been told he is very lucky to have survived the type of stroke he had..he now need constant care and help, the only thing he can do for himself is eat one handed once is food is cut up...everything else I do for him.

And on top of all that due to the brain injury he now suffers epilepsey for the last year , he as tonic clonic seizures which affect all the brain , we are still in the process of sorting his meds out,,when he fit he goes unconcience and always end up in a &e. then takes 2 further days to sleep it off, In may this year he was admitted 5 times in a week due to fitting, and last week he had an other fit and ended up in there for 4 days due to complications..When he first had the stroke they had to cut a part of his skull away to get to the brain, he was left with a deep concave the size of the palm of your hand, since then he as been back in hospital and had a cranioplasty op which means he now as a titanium plate fitted, also the stroke affected his eyesight and he is registered blind.

And to think he was a healthly hardworking man that never smoked but did have a odd drink at times. never once did he ever claim any type of benefit . until the stroke . NO Im not worried about him having medicals to claim his DLA , bring em on I say ..

summerof0763

kingfisherblue wrote: »

Although I understand your comments to some extent, I would also state that for some carers do understand how difficult it is for disabled people.

I am my son's carer. He was born with Down's syndrome and several rare medical conditions. He has developed further medical conditions since then.

My son needs substantial care both day and night. He needs help in every part of his life. The only page that I do not fill out (usually with an essay length answer!) is the page that asks about fits, siezures and blackouts, as fortunately he does not have these. otherwise every page of his DLA form is filled with details of the help he needs.

My son has never known any different. Perhaps as a result of his learning disability, he doesn't realise how hard life can be. I, on the other hand, am very aware. I have fought constant battles on his behalf. I have sought out suitable social and leisure activities that he can manage (thank goodnes for a brilliant Akela at Cubs!). I have become involved in groups for disabled children to ensure that their needs are met.

So certainly for some carers, possibly mainly parent carers, we do understand that everyday things take longer and cannot be taken for granted. This is because our children would not be able to do these things without our input. I'm including tasks such as changing nappies, eating, dressing, etc - at the age of twelve. As for going out, it's not possible unless supervised. Even then, I have to load his wheelchair into the car (I'm thinking of getting a ramp to make this easier on my creaky shoulders and back!), take a change of clothes, nappies and wipes, possibly some milk and medication, strap him in safely (he's still in a car seat), settle him with some books, etc. So I think I can safely say that I know how much effort is involved.

you sound lovely,and i am sure you do your very best.
I unfortunately or maybe was meant to be,struggled with no help from school and in some respects hospitals.apart from getting big muckle hearing aids in p1 i was left to get on with it,primary school basically ignored me,if i could not keep up "tough"
secondary school,i never bothered telling them i was deaf,i basically lip-read whenever i could see the teacher's face.
left school went to factorys,cleaning,food/serving etc whatever i could get,unfortunately when i was 18yrs old i had a really bad fall in one of the factory's i worked in,which is one of the major problems i have now,which came back to haunt me 10yrs ago,and put paid to me working anymore.
i now have 3 other major problems,which although being treated for,i have one that seems to be resisting any amout of tablets,and is causing me a lot of pain and discomfort,waiting on a hospital app for it just now.

i have two daughters, who are an absolute godsend,honestly do not think i would be here today if it was not for them.also now have two granddaughters and a grandson,and a new addition next year all being well.g/kids love to keep me upto date with everything that is going on.so in these respects i am lucky.but honestly wish i had my health.i so miss being able to do the simplest of things.
sorry for waffling

summerof0763

sh1305 wrote: »

Ready meals are full of processed rubbish.

argh i agree,though a lot of people have no choice but to eat them!!

krisskross

skcollobcat10 wrote: »

Instead of giving money for petrol to friends so that you can get food in. Have you thought of the scheme I think it is across the country, dial a bus, it is free if you have a bus pass or taxicard, and it is wheelchair accessible. They go to various places and do have shopping trips and they can help with a volunteer to assist you if you require. Also the taxicard gives a discount for travel and the taxi companies work 24 hours.

Also what about ready made meals that you could put in the microwave? You could also do your shopping online with one of the supermarkets this might help.

I cook extra and freeze it. I am going out without him on Thursday (he refuses to come to see The Sound Of Music with me...can't imagine why :rotfl:)so he will just pop one of the meals in the microwave. If I thought there were going to be more occasions when I couldn't cook I would make extra to freeze more often.

ash4becks

skcollobcat10 wrote: »

Instead of giving money for petrol to friends so that you can get food in. Have you thought of the scheme I think it is across the country, dial a bus, it is free if you have a bus pass or taxicard, and it is wheelchair accessible. They go to various places and do have shopping trips and they can help with a volunteer to assist you if you require. Also the taxicard gives a discount for travel and the taxi companies work 24 hours.

Also what about ready made meals that you could put in the microwave? You could also do your shopping online with one of the supermarkets this might help.

iam trying for the bus pass atm but they really a pain if you havent got HRM , but the letter with the 100 meters for walking i hope will be enough, the taxi card is the same HRM with possible if they think your bad enough, taxi card i cant apply till sept for nexus just do it that way grrr and theres only two taxis in the area that offer the taxi card service used to with my mate thats blind, and the dial a bus is being cut in this area and social services say iam not bad enough even though i havent ever had a assesment but did register me as disabled today though

and trying for blue badge also but they have just changed that in area last week to a OT assesment i think this will be for the better thou i hope anyways but with a condtion that flares up and comes and goes might be a lot harder also but i alredy have had a OT assesment of late also plus the letter but i dont no how far walking it is atm for blue badge but pain is doing my head in atm docs give me tramodol had two and its didnt touch the sides

shoping online is ok but theres not everything online thats in the shops but i do use it when geting out out of the question and no help avalible either its hard because iam bang in the middle were iam bad but they dont think quite bad enough yet i wish they lived with me mates got a shock when they sore me tonight not seen one of them in 6 months and she could see i was struggling, friend picked me up went to the chipy and sat on a bench infront of the beach relised how much i miss it down there but it was great to get out and see my mates the geting out does you good but i no i will pay for it tommorow

but iam going to get worse rather than being able to at least try myself and help my condtion with going swiming to bulid up my bodys condtion and strenthen the wasting mucsle i have atm a bus pass would help me so much i just hope they see that

on micromeals ready made yuk there dry and horrid, but mirrowave chips are a godsend when iam bad better than not eating and i can sit on my bed while there made saying that i have been known to burn them :rotfl:

ash4becks

summerof0763 wrote: »

argh i agree,though a lot of people have no choice but to eat them!!

agree thats me i still eat what you would call kids food fish fingers,chicken nuggets,spaggiti chips,mictrowave pizza

but iam terrible cook was kicked out cooking lessons i used to drop things burn, ingrediants in wrong order but really be holding a pan of hot water etc not going to happen wrists are to weak for that

summerof0763

ash4becks wrote: »

agree thats me i still eat what you would call kids food fish fingers,chicken nuggets,spaggiti chips,mictrowave pizza

but iam terrible cook was kicked out cooking lessons i used to drop things burn, ingrediants in wrong order but really be holding a pan of hot water etc not going to happen wrists are to weak for that

i have to say,i was a good cook,used to spend hours cooking and baking.and i miss being able to do it now.
i sit on a chair and throw the orders to my daughters,as g/kids love baking.
dont ask me why,but both daughters to this day,still ask me "how do i make this" lol they moan as it never taste as good as mine was.
d1 not got much time as 2kids and due another,so d2 does most of my cooking,i am forever being asked how to cook varios dishes,although give her due,she is getting better at making new dishes up,which we enjoy tasting,but makes me feel bad as she works f/time and has her son and own home to see to.

ash4becks

summerof0763 wrote: »

i have to say,i was a good cook,used to spend hours cooking and baking.and i miss being able to do it now.
i sit on a chair and throw the orders to my daughters,as g/kids love baking.
dont ask me why,but both daughters to this day,still ask me "how do i make this" lol they moan as it never taste as good as mine was.
d1 not got much time as 2kids and due another,so d2 does most of my cooking,i am forever being asked how to cook varios dishes,although give her due,she is getting better at making new dishes up,which we enjoy tasting,but makes me feel bad as she works f/time and has her son and own home to see to.

have you ever got little adaptions for the kitchen so you can still do little bits, yes i have to agree mums food is always the best i love my tom and jerry cakes cooked them since i was about 3 and oh so yummy they seem to disapear in less than two days shamefull when its often just me here lol but is that not something you could do i no its basic but might be a good onr to do with the kids