Carers Role - Newish

Hi my husband has a non specific Motor Neuron Disease. We were aware that things would be getting worse and we have applied for Attendance Allowance, we are both retired, and if we are successful I will apply for Carers Allowance. We are not eligible for any Pension Credit or anything that is means tested because we had provided for our retirement as best we could.

Things have progressed a lot quicker as he has been in hospital for a week with a UTI and now has issues with his bowls. All this has come from ulcerated legs which started back in June. We have had a lot of help from our GP Surgery but things took a turn for the worse last Saturday. He was struggling to even stand just before admission but I have been told this could have been connected to the UTI. This is much better now but no one seems to be helping him get back on his feet. My worry is that if he cannot at least stand and maybe shuffle his legs around a little I will not be able to cope with him at home.

I admit to not being a very patient person but he doesn’t want to end up in a residential home, he would never forgive me. I have contacted the Physio at the hospital but they don’t seem to understand the urgency. He feels that if they don’t get him back on his feet soon he may never be able to stand or walk again. As far as I can make out, he hasn’t been on his feet since he was admitted last Saturday.

I’m not sure I am asking for advice here I think it might be a rant to get things off my chest. I am so new to this I don’t really know what to do.

Welcome to the forum.
I’m dismayed that he hasn’t applied for Attendance Allowance already.
I’m afraid that as you are retired, you are not eligible for Carers Allowance. One of the greatest unfair parts of the benefits system. I’m also caring but get nothing.

Has your husband had a Needs Assessment from Social Services, to work out what help he needs?
That has to be the next step before discharge.

Social Services should also do a Carers Assessment for you, to work out if there is any help and support they can give you. I have been given money for gym membership and counselling.

However, there is also something called NHS Continuing Healthcare, free care from the NHS, whatever he needs. Read the Continuing Healthcare Framework, especially the “Checklist Assessment”. Hopefully you won’t need to claim for a while, but it is there for you if things get more serious. It means that rather than someone be admitted to residential care the money can be used for care at home instead. It’s a bit of a postcode lottery I’m afraid.

Thank you for your reply. I have only just applied for the Attendance Allowance about two weeks ago but had no response yet. Things have gone down hill a lot since I applied. I have also sent in a request for a Social Work and OT Assessment also just before things deteriorated. I think I actually did know about no Carers Allowance if you are retired but I had forgotten.

I will chase again on Monday. I don’t think he will be eligible for CHC just yet I’ll have to see how much mobility he manages to remover. They did mention a rehab centre but if he can stand and I can get him to the car I’d rather do visits from home.

I a glad I found this forum because I can see it will help me to understand how I am feeling and how to help him too.

Should I devise a signature for the end of my posts? Do most people do that? Again thank you.

It’s by no means essential.

I don’t have one on here, but on another forum (work related, although I’m now retired), mine is:-

“One day it will all be firewood”

It was always a great line for deflating site agents and architects. :laughing: