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Newbie caring for MND sufferer - Carers UK Forum

Newbie caring for MND sufferer

Tell us a bit about yourself here.
Hi everyone
I am caring for my husband who has MND, his symptoms started in April 2010 and was diagnosed in September 2010. If I am honest I have had enough, I wish it was all over for both our sakes. Our children (2 girls, 21 and 17) have mostly left me to it, and I don't mind that as they have a life to live and this is my job. It been nearly three years and this last nine months have been the worst.

I am off work at the moment totally stressed out, till now I have had no help and no respite I need to get away and feel I can't. I can't relax if I go anywhere as I always worry what is happening at home.

I know how I am feeling is only natural but I can't stop the guilty feelings, even about being off work Image
I love your name! Image Image Welcome Image
Even though we know we shouldn't as we have nothing to feel guilty for, it kind of comes with the territory Image
Hi and welcome Image Lots of support here on the forum Image
Thank you for the replies, my name is something my hubby used to call our youngest when she was little and I adopted it for myself Image
I found myself a cleaner to come and help with the house, so happy Image hubby less happy about it, not sure why. He won't speak to me about it Image I had a bit of a go at him actually, he doesn't want a carer, doesn't want me to get a cleaner, I caused home of trying to put me in a grave before him, harsh I know, but that's how I feel, I am only one person with a full time job and a carer role. Surely a bit of help is not to much to ask Image

Anyway it's done and I am looking forward to it, she comes on Thursday for the first time
Hi squirtymcburty
Well done in getting a cleaner. As you so rightly say - there is only one of you and you cant do everything - especially as you are also working full-time. Awesome respect for that - it is really hard to work full-time and care. I had to cut my hours down.
Many carees want their main carer to do everything for them rather than getting in someone else and get quite good at emotional blackmail. I suspect that this is what is beginning to happen in your hubbys case. There is often also denial - the caree doesnt want to acknowledge that he/she needs additional help. I think you will need to stick to your guns. If you become ill you wont be able to work/look after him and this is quite a mild introduction to outsiders coming in. After all, many non-disabled people have cleaners coming in.
Thanks for your words of encouragement Crocus, I have already made myself I'll, I left it to late, I have been off work for two months already. I am starting to feel I want to go back though and decided I couldn't go back without some help. I do think I will have to cut my hours too, which is quite worrying.
You are right about the denial thing, I believe that is the reason, although he would never admit it. Next step is getting the carers in to help out