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Ive done this wrong ! - Page 2 - Carers UK Forum

Ive done this wrong !

Tell us a bit about yourself here.
Audrey - padding him is great for a couple of hours but sometimes the "Todds Paresis" he has after his seizures can last 30 mins to 6 up to 10 hours. Hes skinny too so gets very sore after a short time. Thats why i have sliders and compressor. Thing is still takes effort to get him on them , i wish i was Arnold Swarzenegger and could pick him up with one hand and march him to bed Image
His whole rt side is like a stoke until it resolves and when he is thrashing about in post confusion state it can be a bit difficult. hes only 10 stone but 6ft and a bit like moving a long plank that keeps losing its structure.
Our Epilepsy Nurse says some people get this paresis and most do not, we are just unlucky Image
He certainly doesnt conform to my experience in hospital of Epileptics !!!

I know about ambulance crews but was told that only on occasions would they assist. Thats why the compressor was provided, i need them on average12-18 times a month minimum depending on my own spinal pain. They wont come out for this number of times. OTs are great and i have so many cushions pillows with breathable holes all the way through. i also got a Community Care Grant for things to make him safe.
How often have you called out the ambulances ?

As for cooking - i hate it, its a means to an end- Andy did it all and now even with me there is a liability . I used to cook everything fresh now if i can get it to a plate without fuss i do. A woman not cooking , we were born to it ( said by some man no doubt Image )
Siamese ruling ??? of course , its her job- 5 dogs is no problem Image
Have a good afternoon audrey - hope its not raining where you are
Hello and welcome Mandy!

I hate being so reliant on benefits but I know we have no other choice because of our circumstances. The problem is that the handful of people who cheat the system give us all a bad name and people who've never been in our situation then feel justified condemning us for accepting 'hand outs'.

It would be so much easier to work full time then to be a 24/7 carer with no breaks.... do people actually think we choose this?

The press doesn't help nor the governments recent policy changes ... carers are the most undervalued employees in the UK. Being a carer has affected my self esteem... I feel embarrassed when I tell people I don't work because I'm a carer. They look at me with a quizzical 'can't you do both' look. It can be very demoralizing.

I now have a handful of very close friends that I see pretty regular but there are a lot of 'friends' and family members that I have little or no contact with because they just don't get it and I can't stand, nor do I need, their judgmental attitudes.

I really believe you'll be blessed here. Everyone is understanding of each others circumstances and there's a lot of support and encouragement. Im sure you'll love it!


Never feel guilty about benefits. I was a carer for over 20 years , 24/7. But what I am saying is
I am at the other end of things now, I was led to believe as a carer you where doing a job, your stamp was paid and you received unemployment benefit. this is not the case. You are not seen to
be doing a job by these people. It is another KICK in the teeth for carers. so hard as it is, try to
cherish your loved ones.
p.s. I have now to go and see these people in an hour. Image Image arragh.....wish me luck
Thank you Debbie

Today is the first day ive felt comfortable with myself as Carer since it began. Myrtle showed me the way as i set off defensive and unsure of what it was all about on here on sunday.

Ive read so much and typed more than ive done in ages. I now understand that we are all unsung heroines/ heroes
i was surprised to find so many men carers, i think they will have the harder time.

Ive been told by my Mother to stop skiving and tried to get Andy to drive her into town AFTER a major seizure because i wouldnt take her. He couldnt stand up and yet she told him to get up and take her. Not only that he had no licence for 5 years Image ......needless to say she has had a carer in my step dad siinc she was 50 ( my age) poor man , but then we shared looking after her in the earlier times between work and children and husband......she is so selfish , like our children.

The old adage "you can choose your friends but you cant choose your families" is perfect for me and others i see.
Needless to say she told me we wouldnt get DLA because she couldnt ! only we did and she had the gall to check with social services ( she was a Social Worker and had friends)

i still feel guilty for the Carers Allowance and DLA but i will do without before i go for anything else. Im lucky i had a good job and took my public sector pension before the government close them down altogether. We manage, no cars to run, free bus passes and i dont drink and smoke ( he does- not much) Ive even gone off food !

I tell Andy in fun if he was paying me i would want £35000.00 per year to care for him , just like the NHS paid not £55.55 per week from carers Allowance.
Im sorry - im not trying to show off but i wanted you to understand how much ive lost - financially. Slowly gaining in strength and fortitude.

Many thanks Debbie
The trouble when you care 24/7 for a spouse is that you not only lose your income, you lose theirs!
But I refuse to be made to feel ashamed of being on benefit......by anyone. The shame is theirs when the disabled and their carers are treated so shabbily in this country.
Touche - we should unite better perhaps, or at least push for some reform, a 2 tier benefit system perhaps.
I understand now, knowing people on our council estate who "abuse" the system but im not a whistleblower-
Id like to be but its the government that should have different control strategies so we -the governments poorly paid workforce can get a better deal.

One day.........
I know how hard it must be to come from a good wage (possibly 2 good incomes) to end up on benefit. Its a mind field just trying to work out what you should apply for never mind filling in those awful forms that just look at the most negative aspects of your caree's personality/health etc.

My ex-husband has been ok financially since we seperated nearly 8 yrs ago ~ he simply couldn't cope with the boys special needs and we were always at odds about how to handle them so the marriage broke down. He's in the armed forces and is ranked at the top of the uncommissioned officer chain so he's on a very good salary now ~ a position I helped him get by supporting him while he did extra study etc! He's on extended service and when he does leave will get a nice lump sum and pensions. Because of his job combined with the needs of the boys I was never able to go back to work after they were born. I know that I could be earning as much as him now if I had been able to keep my career but it wasn't to be. He pays maintenance so thats deducted from benefit entitlement but I still feel we're beholding to either him or the DWP...

He is actually one of the worst people for condeming me for being on benefits while at the same time agreeing there's no way he could cope with living with the children! He has a very rigid institutionalised mind set and makes the most contrary statements at times. He didn't bond with our second son when he was born and he can't cope with J's challenging behaviour at all. Forces mentality is 'do as I say no questions asked'... and J doesn't do anything you ask him to so it drives his dad nuts! Funny thing is they're both very alike!

It's really hard to feel valued as a carer... I used to have a lot of confidence when meeting new people but now I tend to shy away from anywhere that means meeting people face to face. I like forums like this because its one place where people understand but I'm not sure I'll ever get back the confidence I once had.

Encouraged by the forums here though.. even if I don't reply to a lot I read pretty much all of it and find it helpful.

Debbie x
ive just read your profile and all i can say is -WELL DONE YOU..........i know i couldnt do what you do, you are special and one of the earth mothers who really care for her family come what may.

I have a nurse friend who has two boys - one with ADD and one with Epilepsy. They both have Aspergers syndrome ( have i spelt that right?)
She was married to a man like your first husband only a policeman. He used to knock her about if the boys misbehaved and told her to keep them away from him as he was ashamed of her for giving birth to them !!!

Needless to say when he started hitting her myself and the staff who worked together got her a place of safety. He wasnt hitting my staff .....She is a quiet kind gentle generous giving person and i applaud anyone who cares for children such as her and yourself.

She like you has a good man now who loves the boys. Unfortunately the older got too big and aggressive and is now in an adult care home. Not because of her , just because.......

I bet your husband now is a great partner and support. You deserve it, what a hard time youve had and will have because children live much longer and need always.
Im with you - i shy away from new relationships close by and i NEVER answer the telephone. We have 2 mobiles and a landline but i wont touch unless to make a call. i was always the garrulous one, make friends with the old lady at the bus stop etc.....now its easier over the internet and i used to sneer at this form of communication.

Take Care - and sleep well Mandy