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Newbie - Carers UK Forum


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Hi everyone
I am new to this site. I have cared for my wife for 8 years now and have worked full time in some ways I was fortunate enough to be in a caring role more supervisory so my caring impacted on me more in out of work time and mainly was running home and making sure my wife had all she needed but could still have time for a normal life . About 2 months ago as many see my wife had started a decline and as so gradual I was not noticing it maybe in some ways also ignoring some of the signs .We had no care help in all that time and on the frequent visits to Doctors they were all assuring me things were ok .About a month ago she started to have falls and seemed in more pain than normal which ended in a hospital stay which was a wake up call to me my wife had stroke 8 years ago which left no mobility etc. problems but turned a once full on strong personality into a meek person and I listened to what she was telling me instead of investigation it turns out she was dehydrated and had tried to limit pain in movement by cutting down on food and liquid intake .To cut to the chase I realised I was not managing her care at all through ignorance and not through any kind of malicious intent with the hospital and social service input I quickly saw the system would not be able to give the care she needed and knew I had a hard decision to make which is to give up work and become her full time carer . She was discharged yesterday and I have been arranging and getting Benefit advice on how to replace my income to fulfil this role .
Already I have found how difficult it is to get to the right benefit as we are not a normal couple she is 73 and I am 58 and all the primary benefits we do not fit It seems that our only way forward is pension credit for the wife and only carer credit for me What a daunting prospect and can only progress the claim if I give up work straight away .
Seeing as the fact will be that for the next few weeks we are going to financially struggle and come to terms with my new role. My aims are not to let the caring suffer and try and not to dwell on the next few weeks of hardship and fighting to survive so thought would post this to know that others have been through this and could give me encouragement as the times get tough
Hi Stephen, welcome to the forum. Carers UK has an excellent helpline (which made me £50 a week better off) so I suggest that first of all, you ring them. It's a very busy helpline, if they are busy, email them. Has your wife had a "NHS Continuing Healthcare Assessment"? Google the CHC checklist and work out what you would score your wife. If there's the slightest chance she might qualify, ask your GP to arrange an assessment. Actually policy says that there should be a full assessment for anyone with significant needs before discharge, but very often it's "forgotten". It should have involved an Occupational Therapist visiting your home to check that your home is properly adapted. CHC is very much a postcode lottery, and it may take time. When did Social Services last do a Needs Assessment for your wife? When did you have a Carer's Assessment?
Hi Stephen
Your wife should be eligible for Attendance Allowance which is not means tested and is paid to the person being cared for. It is for people who are past the age when you can apply for DLA. We only found out about this when district nurse mentioned it - she had assumed hubby was receiving AA, whereas we knew nothing about it. You should apply right away because payment would be backdated to date of application.
Thank you for welcoming me to forum I took your advice we are sorting out benefits with the help of the Helpline and Age uk are going to help fill out forms I have asked on their advice for assessments to be done on my wife and me for caring at the moment everything seems to be falling into place will keep all informed
Hi everyone,i am new to this site and am in desperate need f help,i am no longer in the Uk so i dont know if anybody can help,we are parents to a 12 year old with autism, brain damage and epilepsy,he also has hyper mobile joints,last year we made the decision to live in Spain as in the sun our sons health improves as does his behavior,before we left the UK i made sure that he would be entitled to some benefits from the UK and was told he could still claim as we are in the European union,well he is settled and very happy and everything was fine until now we have had benefits stopped, tax credits and child benefit,leaving us broke,it seems that they didn't tell us that the carers allowance that he still gets and his dla do not entitle him to get any of the other things he got in the UK, now my problem is i have a son in the UK and family but am now not considered to be a UK resident nor am i a resident of Spain as you have to have money in the bank to be able to do that so what should i do go back to the UK and watch my sons health decline again or stay here broke with no help from anyone as Spain does not have benefits for non residents,any advice please am desperate
Just a note to all to say thank you for pointing me in the right direction I used the Advice Line and we put together an illustration of the benefits we were entitled to Pension Credit Carers allowance if we get the DLA re assessed .
The latest is I found the Pensions at DWP so helpful and we applied online and have been awarded Pension Credit which is being paid already and although I had already got the DLA reassessment form and Age uk coming to fill them out the pensions offered me a DWP representative to come if I wanted so helpful this is the first time I have dealt directly with them and would now urge people to use but do get a bit of knowledge from other places first .
I can honestly say that a daunting prospect of giving up work and the thought of slow benefits was giving me a financial worry but it all seems to sorting itself out very quickly . Also my wife being cared for 24/7 by me seems to have improved and we are moving into routines and next stage is to use help available from Carers and other places to enable me to fulfil the role but try and keep part of me for me to avoid pitfalls which undoubtedly are the future
Hope I helped with my exoerience