It beggars belief

[leicester61]

Hi Everyone

Just come on for a bit of a rant really. My OH was diagnosed with early onset az nearly 5 yrs ago age 52, its been hard as he had to stop working at the begining of this year and this has been difficult sorting out managing financially, i applied for esa for him back in feb and finally about 4 weeks ago we had the letter saying he was going into the support group for esa. Massive sigh of relief from me !!!!! Oh No sighed to soon, last week we both received a letter from the job centre to go in and see a job coach !!!!
I have a part time job as well as being his carer, and he has just been diagnosed with acute asphasia and they want to see us to talk about how they can help us get back into work !!!!!!!!!!
Obviously i called the DWP to be told that even though its voluntary on his part to go, if we dont attend then its likely his money will be sanctioned......
So we will attend, he will be so anxious and stressed, inc me to be honest, however im not going to do my usual and talk on his behalf, i think i'll just sit back and see how the job coach gets on asking him questions etc. I dont want to come across as cruel but how cruel is it to expect a 56 yr old man with az who finds it nearly impossible to put a sentence together have a conversation about going back to work !!!!
Im so angry that the dwp are doing this, az is not an illness that can be blagged, hes never getting better, in fact his consultant told us last week that hes shocked at the rapid decline in my OH over the last 6 months !! I try my best not to be bitter and angry about this disease, but i feel bitter and angry, our plans for retirement are no longer a reality, and i watch my husband decline on a daily basis, i love him, hate this disease and really hate how people are treated with this disease.

Rant over, sorry
suz xx

 

[marionq]

For it to Happen to someone so young is brutal. Our thoughts are with you.

 

[leicester61]

For it to Happen to someone so young is brutal. Our thoughts are with you.

Thank you marionq, it is and this constant worry about what they expect him to do next is driving me crazy, but i am determined i am not going to do my usual and help out the person asking questions. I cant wait to hear their advise. I also dont understand why they need to see me as ive got a job, granted its only part time, but theres no way i could work full time and look after my hubby, its hard enough now leaving him in the house alone, in fact he comes into work with me at least once a week. Besides the money having a job keeps me sane too.
I dont know marionq the whole system is a mess !!!!!
suz x

 

[MERENAME]

I've got one tomorrow. I will smile, nod,say thank you and give it as little energy that I can. 40 mile round trip, mum on her own, can't get extra care for love or money. Letter said it was to help me back to work. Should have said 'help me back to work when she dies'. If you've never been involved in the benefits system then it's utterly gobsmacking how much money they waste on stupid things like this.

 

[leicester61]

I've got one tomorrow. I will smile, nod,say thank you and give it as little energy that I can. 40 mile round trip, mum on her own, can't get extra care for love or money. Letter said it was to help me back to work. Should have said 'help me back to work when she dies'. If you've never been involved in the benefits system then it's utterly gobsmacking how much money they waste on stupid things like this.

Hi Merename
I am shocked on a daily basis in the way we get treated, I have worked since i was 15 yrs old, so has my Oh and in genuine circumstances when help is needed you are made to feel like a scrounger, i wonder sometimes if they think we want our lives to be like this, i want that they find a cure, i want my old oh back !!!
wishing you good luck tommorow, if possible could you let me know how it goes so that i know what to expect
suz x

 

[Cherryade]

Don't know much about the benefit system but sounds as though you should apply for pips rather than esa. My friend with early onset az got the full pips benefit.

 

[esmeralda]

What an dreadful, pitiless situation suz, as if things weren't difficult enough for you. Hope Cherryade's suggestion re PIP is useful and you get it sorted out soon. The stress and pressure must be awful.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[nellbelles]

http://www.claspthecarerscentre.org.uk/

Contact the above they have a wonderful advocates service, they helped me immensely

 

[leicester61]

Don't know much about the benefit system but sounds as though you should apply for pips rather than esa. My friend with early onset az got the full pips benefit.

Thank you for the info, he is already on PIPs, i claimed that soon after he was diagnosed. He was able to work part time for a few yrs but had to stop at the begining of the year, hence applying for esa. But thank you for the info
suz x

 

[leicester61]

http://www.claspthecarerscentre.org.uk/

Contact the above they have a wonderful advocates service, they helped me immensely

Thank you for the link info nellbelles, tbh i am positive they have no right to do this and are wrong, so I am going to the appt ( well both of us) just to see what they have to say. Then depending on that outcome will see where i go from there. Thank you again x

 

[leicester61]

What an dreadful, pitiless situation suz, as if things weren't difficult enough for you. Hope Cherryade's suggestion re PIP is useful and you get it sorted out soon. The stress and pressure must be awful.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi esmeralda
I did get truly stressed but after a few rants I feel a lot better lol x

 

[canary]

The same thing happened to my OH - he had to go to the job centre to be be assessed for work capability, even though he had been granted ESA

The person who interviewed him was lovely - she told us that there was no work that she could offer and that he was not suitable for any courses. She said that she would submit her report and that we should go home and not worry about it.

She also said that she saw a lot of this sort of thing

 

[canary]

I also thought Id mention that ESA and PiP are 2 separate benefits and you can get both - it isnt one or the other

 

[Casbow]

It beggars belief.

Hi Everyone

Just come on for a bit of a rant really. My OH was diagnosed with early onset az nearly 5 yrs ago age 52, its been hard as he had to stop working at the begining of this year and this has been difficult sorting out managing financially, i applied for esa for him back in feb and finally about 4 weeks ago we had the letter saying he was going into the support group for esa. Massive sigh of relief from me !!!!! Oh No sighed to soon, last week we both received a letter from the job centre to go in and see a job coach !!!!
I have a part time job as well as being his carer, and he has just been diagnosed with acute asphasia and they want to see us to talk about how they can help us get back into work !!!!!!!!!!
Obviously i called the DWP to be told that even though its voluntary on his part to go, if we dont attend then its likely his money will be sanctioned......
So we will attend, he will be so anxious and stressed, inc me to be honest, however im not going to do my usual and talk on his behalf, i think i'll just sit back and see how the job coach gets on asking him questions etc. I dont want to come across as cruel but how cruel is it to expect a 56 yr old man with az who finds it nearly impossible to put a sentence together have a conversation about going back to work !!!!
Im so angry that the dwp are doing this, az is not an illness that can be blagged, hes never getting better, in fact his consultant told us last week that hes shocked at the rapid decline in my OH over the last 6 months !! I try my best not to be bitter and angry about this disease, but i feel bitter and angry, our plans for retirement are no longer a reality, and i watch my husband decline on a daily basis, i love him, hate this disease and really hate how people are treated with this disease.

Rant over, sorry
suz xx

The best thing to do is what you have said. Sit there and do not say anything. It won't take long for whoever, to see that your poor husband is not fit to work. When I took my husband to the hearing clinic the doctor asked questions to my husband. After each question I waited a few seconds and then answered for him. The Doctor looked me and said "Do you not allow your husband to speak for himself." I then went silent. After 3 or 4 more questions to which my husband said "I don't know" He then looked at me for an answer. You can imagine what I would have liked to have said.!!! I hope things go well for you.x

 

[leicester61]

The same thing happened to my OH - he had to go to the job centre to be be assessed for work capability, even though he had been granted ESA

The person who interviewed him was lovely - she told us that there was no work that she could offer and that he was not suitable for any courses. She said that she would submit her report and that we should go home and not worry about it.

She also said that she saw a lot of this sort of thing

Thanks for that info canary, it certainly makes me feel better, after speaking to quite a few people I dont feel as stressed about it, in fact in a perverse way im looking forward to seeing how this Job Coach manages a conversation with my OH.
Have a good day
suz x

 

[leicester61]

The best thing to do is what you have said. Sit there and do not say anything. It won't take long for whoever, to see that your poor husband is not fit to work. When I took my husband to the hearing clinic the doctor asked questions to my husband. After each question I waited a few seconds and then answered for him. The Doctor looked me and said "Do you not allow your husband to speak for himself." I then went silent. After 3 or 4 more questions to which my husband said "I don't know" He then looked at me for an answer. You can imagine what I would have liked to have said.!!! I hope things go well for you.x

Oh my word casbow i have been in those shoes, several times i have been looked at as though im a controlling wife or even worse a nag and bully !!! so i have done what you did and not say a word, with that look on my face that says ' go on, get on it with mr/mrs professional !!! lol
I have also been described as ' a very forthright person who dosnt suffer fools gladly ' lol - translation - too much too say for herself and a know it all !!!!!

but what they dont see are the times your sat there in despair, sobbing and wondering how the hell you can carry on fighting this disease, the system, the ignorance of people etc etc

a couple of weeks ago took my oh to see the consultant ( a new one) who diagnosed oh with acute asphasia, i told the consultant that i had mentioned this problem last yr and that i thought it was asphasia, the person that tested him told me no hes fine, this new consultant said, listen you are with this person 24/7 YOU know whats going on more than any professional, honestly i could have kissed him.
ah well upwards on onwards eh
Have a good day
suz x

 

[MERENAME]

Hi Merename
I am shocked on a daily basis in the way we get treated, I have worked since i was 15 yrs old, so has my Oh and in genuine circumstances when help is needed you are made to feel like a scrounger, i wonder sometimes if they think we want our lives to be like this, i want that they find a cure, i want my old oh back !!!
wishing you good luck tommorow, if possible could you let me know how it goes so that i know what to expect
suz x

Hi, well I went for the interview and it was ok. I haven't been in a job centre for years and they have changed quite a bit. There is no reception so I just hung about looking lost for a while before someone asked if they could help. I was told to take a seat and wait. So I did. My appointment was 2pm so at 2.10pm my name was called and I was shown to a desk. The girl was nice enough and explained that basically it was to explain the move to universal credit and how it might affect me. She asked what I did as a carer etc. Basically carers are going to be expected to look for 5 hours work a week along with their caring duties. This will not apply to every carer and she accepted that it would not be possible for me. She signposted the carers centre, which is a plus but seized upon the 2 days mum goes to daycare as time I could maybe volunteer. She asked about plans when my circumstances change, what did I think was a barrier to returning to work etc. She said she'd see me in a year as that would be nearer the change over. I said it was difficult to get care so she is going to ring me instead.

So it doesn't affect me much but the switch onto universal credit will be a nightmare for some. I was a working carer up until just before my Dad died and it was hell. Luckily I was self employed so I was flexible but the stress was immense. Most carers don't have time to look for fantasy 5 hour jobs that fit in with their PWD and don't need to live with the threat of sanctions. I only get a £42 a week top up that can be sanctioned but for some people it threatens their rent too and that's scary. £42 will buy you 2 hours of unspecialized care through an agency . If I walk away how much will they need to spend. Is this really how people who basically give up their lives to care should be treated?

 

[Casbow]

At least at the age of 65 ,when my husband was diagnosed, they didn't tell him to get a job.!! He was working with dementia for some time until I realised too many things weren't right and we went to the doctors. Even then it took a year to get him diagnosed. This was more than 9 years ago so I hope that side of things is improving.xx

 

[leicester61]

UPDATE: On Job Centre Appt

Hi All
Well we attended the dreaded appointment. They actually didnt want to see my OH, they wanted to see me. A very nice lady wanted to offer me support in finding work, I told her I already had a job plus caring for my OH. Ok she said then all i want to say is we are here to offer the same support to you as we would your OH.
Asked her what support was she talking about, re my OH she said well if he wants to go on any courses/training etc, reminded her he has AZ and also now acute asphasia. Oh yes she said ok then I think were done. We then spent 30 mi9ns talking about her new role she was taking on.
All in all an easy (if not pointless) time was had. Although when I told her that my OH now comes to my work place she quickly said oh he volunteers then. No he comes because he dosnt like being left alone, and would rather sit in the office with me than be at home alone.
Anyway just thought Id update anyone here who might also be having problems with ESA or PIP.
keep well
Suz xx

 

[BazArcher]

Sadly seems like this is now the norm for our failing health service/dwp, I to have been thru it this last 2 years as my OH was diagnosed with Early Onset AZ at 48, as you can imagine its not been great bearing that sort of news for someone who has been a loving wife for 28 yrs.
I to got caught with the dwp for an esa assessment on OH only for me to meet with the most obnoxious person I have ever met in my life, after a few questions of which I had to answer I get told to shut up and let OH talk so I did the best thing I could think of and handed over a note with my phone number on and walked out leaving OH there to deal with it, you can guess I received a call in under 5 minutes to which I told them where to go in no polite terms and was begged to come back and be there.
To their credit I and my OH did get an apology and since then have been left alone mercifully to get on with things.
I can only say if this is all I have to deal with while this terrible disease takes away my OH I won't be complaining but sadly I know it will get worse so chin up and all that usual English bravado and keep smiling as I can laugh about the incident now .

Baz