Never thought it would be this hard

[GiddyMintOtter]

Evening ,
It's so stupid but I knew becoming a full time carer to my husband would be hard but I never imagined it would be this hard.

The MND is ravaging him, seeing him fight for every word, every movement unaided is brutal. Seeing his frustration at not being in control of his body is truly devastating. His silence kills me. I miss his laugh. I miss us talking about random shit. I try to talk but one way conversation is hard.
I naively thought we would have more time before it got this bad.
Fuck MND!
I am exhausted, we are not at the point of needing carers but I have no support in his daily care. Everyone who is able to help works full time. And I can't ask them to stop work.
Im exhausted making all the decisions all.of the time.

Sorry I just needed a vent. I will give my head a wobble and pull my big girl pants on and get on with it.

Thanks
Giddy

Now is the time to start the ball rolling for carers otherwise you will burn out fast. It won’t be quick so you don’t wait until you are desperate.

Agree re carers start the process even if you’re not quite there. Can anyone come Ona evening or weekend to give you a break.? Do you have any time for hobbies even reading or similar?

Asking for carers feels like such a leap and I dont know if either of us are ready for it. I worry about how it may make my husband feel
It sounds daft I was an avid reader but I struggle to concentrate on books at the minute. I think it is stress/ depression affecting my concentration but I miss it. I think with it being the summer holidays I may set a timer for 30 minutes and focus on a book and nothing else.
Thank you both xx

You are doing an amazing job but it's 24/7 and difficult to sustain. Social work will take a long time to assess and implement carers so it would be worth considering getting the ball rolling. Sending you strength to keep going x

I’m sorry you’re going through this x

Take the leap, you might just find that having some carers help is what helps you through this difficult time. You'll have extra energy to talk to him, and enjoy him. Grit your teeth, big girl pants on and make some phone calls. Do it next week, give yourself a few days to come to terms with it. It'll take a while before anyone turns up so it won't be a very quick thing to adjust to.

As someone who was a full time carer for my late DH for your own health and sanity you need to get the ball rolling now in respect of carers. You also need to talk to SS about putting an emergency plan in place in case something happens to you and you are unable to perform your caring role. If nothing else at this stage you need respite care to give you a break. I know your DH might not be ready for carers but if you end up in a heap on the floor through exhaustion or illness he will have no choice. So please as one carer to another start the conversations even if as a starter for 10 you get a couple of hours a week respite so you can go for a coffee with a good book, go to the dentist / hair dresser / GP without worrying about needing to be back before you got there ! It really is brutal being a carer so make sure you do look after yourself as well.

I agree with everyone else, I know it's hard but you need to do it in order to carry on caring for him. It's an incredibly hard road, harder than anyone could ever imagine before they find themselves in those shoes. Keep talking, it helps. Do you have emotional support for you?

Thanks everyone. Thank you for the encouragement. We are going away for a week, probably our last family holiday as a 4, I think being away will be a good time to broach this with him.
To those who are or were carers , you are amazing x
Giddy

Where do you even start when looking for a carer? I’m assuming I would need to go down a private carer route as it will take too long on the NHS?

Contact your local adult social care dept and ask for a Care Act assessment for the cared for person, and a Carers Assessment for yourself. It's arranged via local authority social services, not Nhs, unless cared for person gets CHC

If you're self funding you can just go to an agency, but local authority carers will be cheaper rates (and more basic depending on where you live)

How about audiobooks? maybe you could even listen to together?