.
Honey Badger
Such a basic requirement of enough sleep SHOULD be possible, not right when circumstances prevent it.
The GP merger doesnāt sound great.
All the best to you too
Iāve been a carer for 28 years,first my wife and now my son.I started having health problems around eight years ago,finally having a pacemaker fitted just over five years ago.Itās never been a great success as i still get dizzy spells,iāve reported it to the hospital,but they say they canāt see anything wrong,iāve learned to live with it.
Just before Christmas i had a cough that lasted for just over two months,now i suspect Prostate problems,blood test this morning,GP appointment next week.
I donāt know if all of this can be put down to stress,had plenty of it over the years.Always remember the parents meetings that we had at my sonās school,whatever subject we tried to discuss soon fell by the wayside as parents would have questions about personal problems they had,and others would try to resolve them through own experiences.On the whole i donāt think much is out there for carers.
My sonās PIP runs out on the 21st of this month,still havenāt heard.To be honest,if he doesnāt get it,i donāt know what iāll do.I certainly canāt go back to being an Electrician.
Why do you think PIPisnāt going to be renewed?
David
I would be tempted to phone up re the PIPā¦you do have to wait a while on the phone sometimes half an hour. It may be they can give you some information. Sometimes a nurse looks at the details initially before passing it to a CASE officer.
Have you had a letter from them to state they have enough information to make a decision. If not I would definitely phone them.
Thanks for replies.I just thought i might have heard by now,i suppose iām looking at the worst case.
They did write to me about a month ago saying they would be asking for further information,but when i had a GP appointment last week,they hadnāt contacted the surgery as yet.
I have sent in a letter from the hospital after the request,so perhaps they are happy with that.
I donāt even know where to begin with what itās done to me.
Iām a carer for a young child with autism, a teenager with autism and a wheelchair bound wife. Iāve also got another ānormalā 6 year old child
Being a carer has hit me pretty hard financially. I had to reduce my working hours to be able to look after everyone.
I now work from home most of the time so I can assist my wife even during work hours. This makes me lonely as I donāt really see many people each day.
I have no social life.
I have gone from fully blonde to grey in a short space of time.
Iāve lost a lot of weight because Iām so busy and active that I just canāt get enough calories in me of a day.
Iāve lost my love life. My wifeās condition leads to her sleeping a lot so we rarely do anything together.
We donāt have sex anymore.
I get very little sleep as there is always someone who needs me in the night.
Iām on edge pretty much all the time Iām awake because I can never be sure when Iāll be needed. In fact right now after Iāve put all the kids to bed and before I fall asleep of exhaustion is the only time I have to myself.
I think the worst thing is my personality haS changed. I was always known as a laid back guy, who didnāt worry about things and very rarely lost his temper. Iām not that man anymore.
Oddly though Iām reasonably happy. The joy, fun and love the kids and my wife give me keeps me going.
Theyāre all so happy and kind. They all show appreciation to me in their own way. I think that makes be lucky? When I read the posts on here I recognise all the stresses but I donāt feel hopeless because of the love I get.
It has aged me. Iām about to turn 37 and the other day someone referred to my 25 yr old brother as my son. 
It has destroyed my social life. Iāve not had a day off in just over 7 years now, the last time I was out the house for longer than an hour was last April for my older brothers funeral.
It has ruined me financially. My income is just my weekly carers allowance + Ā£33 monthly from my UC, seems I need to decide between heating or eating on a day to day basis, and heating usually wins.
It has to be done though. What is the alternative?
CircaM
Wowā¦you do have a lot on your plate. Testament to you that you are still happy, I feel sure you have a strong personality as honestly that is more than I myself could deal withā¦I do manage to get small social life.
For you to get appreciation and love is surely the thing that carrys you through the difficult times.
Iām impressed with your ability to manage all you do.
Mark
You have hit the nail on the headā¦whatās the alternative?
There isnāt oneā¦as we all sadly realise.
That must be so hard not getting out of the house hardly everā¦who do you care for?
Financially it is so toughā¦I dont honestly know why we are not paid.
Have you checked you are claiming all you can?,
And also whether you can have someone else care for some time while you get out of the house? Via a needs assessment from social services?
I care for my brother who has ASD.
Iāve checked multiple times and apparently Iām getting all Iām entitled to.
And as for the needs assessment, I always get discouraged when reading the council website about itā¦mainly this part
Will I have to pay for the help I get?
All the councilās advice is free of charge, but it is likely that you will need to pay towards the cost of the care and support you receive.
The council already get Ā£400 of my Ā£433 UC, I canāt give them anymore.
Mark,
The council already get Ā£400 of my Ā£433 UC, I canāt give them anymore
.
Why do you pay them Ā£400 a month out of your UC?
Melly1
Mark
Ok, so your brother is 27 and autistic.
This means that he will be means tested in his own right.
I have two sons one is autistic and 24. I do not have to pay anything towards the help from Social Services that my son gets. He does not have to pay anything towards the help he gets either.
They would assess his needs first and do a means test afterwards.
Does he claim PIP? ( I have just seen your previous post and note that you do), And Universal Credit in his own right?
I note that at least a couple of the scores you mentioned re the PIP do seem a little low compared to all you do for him.
I have found a supported housing place for my oldest son. Iām hoping in time this will give me some more time to myself!
Itās really tough all the extra admin created by caring for someone with a disability. I find that the paperwork and fighting for the right support is the most difficult thing.
You have been hit very hard financially. It should not be like this.
Does your brother get out at all during the day or are you doing absolutely everything for him every minute of the day?
Iām asking a few questions as I live with this every day myself.
Mark, Iām dismayed at your post. Your brother should probably be entitled to highest PIP and also ESA. Any services provided for him should come out his money, not yours. Presumably you are his DW P Appointee. Services for carers cover things for YOU to keep you well. I have counselling and gym membership paid for, non means tested.
Ā£288 Rent, Ā£112 Council Tax
Heās 25 and gets PIP and ESA, I have to take him to jobcentre every now and then. Which always goes a little something like this.
āAdvisorā: We just wanted to invite you to see if thereās anything we could do to help you into work?
Brother: I wanna learn howto edit videos but donāt have a good enough computer to do it on.
āAdvisorā: We canāt help with that but if you want we can refer you to xyz company for a numeracy, literacy and employability skills course?
Brother: No thank you.
āAdvisorā: Well thatās allā¦ have a think about what kind of work youād like to do and let us know at our next session.
Brother (to me): Can we go McDonalds now?
I didnāt do anything about the PIP scores, as he was already awarded higher rate for care, so they wouldnāt have made a difference.
Regarding supported housingā¦ I walked in on a meeting between my mum and Social Services where they were talking about this, the only problem was they were suggesting a place in Nottingham 50 miles away from anyone he knows, thatās when I took him in.
As for going out, he used to go shop frequently, itās less than a minute away with 0 roads to cross. This year thoughā¦ heās only left the house maybe 5 times. I feel this is partly my fault as I told him heās not allowed to go out without first letting me bath him. He hates the bath, hates being in the water and is scared of falling while using the shower attachment because āthe bath is not flatā. Iāve been trying to save to get a walk in shower installed, heās fine with showersā¦ just not baths. Iāve actually got a few things I need to try and save for :-/ but saving isnāt an option atm. I fear this thread is getting derailed so I should probably stop now.
He contributes towards electricity, internet and a bit of the food shopping. I canāt take too much money from him as it is important to try and keep things as normal as possible for him since our brother passed last March.
His happiness is paramount.
No, keep going, we can help! As your brother is living there, half the rent should be paid by him, and half the Council Tax if he has to pay any. His ASD could be classed as severe mental impairment, in which case he is exempt.
Why are SSD talking to mum when you are his carer?!
If he needs a walk in shower, have you asked Social Services about this?
His money is for his food housing etc.
Itās only my name on the tenancy and council tax bill.
SSD were talking to my mum as thatās where he was living at the time, I took him from her so that they couldnāt go ahead with the supported housing idea. My mind just went back to that panorama āWinterbourne Viewā episode and I was not having that. The episode from May last year āWhorlton Hallā tells me I made the right decision.
Has your brother had a Mental Capacity Assessment?
Has he been asked who he wants to represent him?
If your brother was classed as not being able to choose who SSD should speak to there should be a Best Interests meeting.
I donāt think soā¦ weāve not had any contact with social services since he was 18.
My older brother used to be his DWP representative, now itās me.
He knows he has a choice on where and who to live with, and heās happy here.