Hi, I am 50 and a carer for my husband who has secondary progressive MS. He is mostly bed bound now. I work full time and we have no additional help as he doesn’t want anyone else to bathe, wash, help him to the loo etc except me. Most days I am shattered beyond belief. The MS I can mostly deal with, but some days (and I feel sooo guilty typing this) I could shout at him “what about me!” when I get home from a 10 hour working day and he says he’s tired, and we still have the toileting/shower routine to do, which can take anything upto another 2 hours when I get home from work. I feel really low at the moment. Social media doesn’t help as it seems all my friends are in lovely holidays in Greece or Portugal or Spain and I am instead pining for something I know is not possible. I know tomorrow is another day, and I’m just having a down day. Sorry to sound so ungrateful, because my husband is the sweetest, kindest man.
He was: but he’s now being unfair to you.
My wife’s needs are pretty much the same as your husbands, but I’m retired and she has a carer on four mornings every week to wash and dress her - I couldn’t do all seven days and remain sane.
Does your husband receive attendance allowance? He should be eligible at the higher rate, as is my wife, that pays for the care she receives from outside,(with nothing left over).
my husband is the sweetest, kindest man.
That’s lovely however it’s not reasonable or practical that you are doing everything. Do you have at least a cleaner.
You husband should have a needs assessment and your a carers assessment. You don’t have to be in receipt of carers allowance.
https://www.carersuk.org/help-and-advice/practical-support/getting-care-and-support/needs-assessment
Is your husband a similar age to you. If so is he receiving PIP.
No, he’s under 65 so we don’t qualify for AA. He does receive PIP but most of that goes towards helps no out with the bills. I don’t have a cleaner (couldn’t afford one anyway).
No, he’s under 65 so we don’t qualify for AA. He does receive PIP but most of that goes towards helps no out with the bills. I don’t have a cleaner (couldn’t afford one anyway).
All things are possible although it may feel like that now.
You are properly entitled to a carers grant. Normally one needs to apply via Social Services or a carer group where Social Services have commissioned that agency to do them.
You will be able in the future to have a break. It’s just what sort and how. At some point your husband will have to except outside help.
As part of a needs assessment you could talk about finances. And it’s possible to get money towards a cleaner should that be what you want. If that was the most useful. What you need extra finances for can be changed via reassessments.
My salary precludes us from being eligible for any other benefits, including carers allowance. We seem to fall into that middle category of not earning a pittance but not earning a fortune eithe…
Most local authority carers grants are not usually means tested. Each local authority has it’s own criteria. That’s the sort of information you would find out. If you both have an assessment.
If you and your husband have below £46,000 between you, then you are entitled to some help from Social Services, which they will partly or fully fund.
As a carer, they are supposed to look at what you need to help you so that you can continue working.
Your husband must accept that as you are out all day working, you need some rest when you get home, or you are going to get ill.
It sounds like he is now so self focussed, all he thinks about is what he does or does not want.
He should be thinking about what you need to make life easier for you.
Hi Sunshine girl
Can you avoid the social media as its making you feel worse …when u are a carer seeing other people having a great time just does not help.
Use the small amounts of time you have to listen to music or read perhaps or meditate
Nobody could do your workload and be ok with it…it is too much for anyone.
YOU do not have to do the toiletting routine etc.
You’ve already done a day’s work, when you come home you deserve and need a rest.
Sadly, the only way anything is going to change is by you accepting that you are now the lead partner in this relationship, the roles have reversed. What you NEED matters far, far more than what he WANTS. You will see these two words, need and want, repeatedly on the forum.
He doesn’t want anyone else to care for him, but you need someone else to care for him.
I understand that he’s more or less bed bound now.
Has anyone mentioned NHS Continuing Healthcare to you? If not, google “Continuing Healthcare Checklist Assessment” and see how you would score him. Unfortunately, CHC is a postcode lottery, but you should be aware of it.