In admitting defeat and wanting to give up

[ICantCopeAnymore]

I can't cope any more. I've NC for this.

I'm disabled and have had to give up my career so am now on PIP max for both elements. DH works full time but earns minimum wage so we are really struggling to pay bills, buy food etc.

He does everything, cooks, laundry, school runs etc. He is also very ill with a few things and bad spinal issues but he battles on.

I also have mental health problems. The state of the house is making my physically sick. We have a fair few pets from before I got ill, and can't keep the house clean enough.

I try my best, I really do, but I can't do big things like hoover, mop etc. DH comes in from work, cooks, washes up, does laundry and is exhausted after he's washed me and got me and DD ready for bed.

My furniture is shredded and stained, the kitchen walls are muddy and peeling, the floor is always muddy because of the dogs, as our back garden is a mud pit from hell, there is a layer of hair over everything despite hoovering daily, there's mould in the upstairs wardrobes, everywhere needs decorating and updating and I'm absolutely dreading the summer as we can no longer cut the grass.

There is literally no help. Social services have installed a bath lift. That's it. There are no options with the council as they don't do help in our area. There are no local charities. We can't afford to eat let alone pay a cleaner or gardener.

I've gone from an intelligent, successful career woman with an idyllic life, to a wailing, fat, disabled mess who lives in bed in a stinking hovel.

I literally don't know what to do any more

I would have thought you were eligible to have carers coming in daily, even if it was to help you wash and dress each day it's one less thing for your Dh to do. Social services should be helping with this, it is a lot better for them to help you all cope now rather than when your Dh becomes too ill from trying to do it all alone and they have to end up caring for you both.
If mind didn't respond call them again, and again, squeaky wheel and all that.

Do you rent your house, is it council? I have used a council service to cut grass for a relative who was in a council house which was free. For other gardening work the council referred me to a charity that didn't charge too much. There are also some schemes where people who don't have a garden will come and do your garden if they can then use the produce, anything like that where your are?

For the dogs and mud I keep a towel by the door to catch them before it gets too dirty in the house, also a tiled area just inside the door helps keep things clean.

In terms of getting help from local authority or local charities bitter experience says you need to keep hassling them. Call them weekly. A lot run triage type systems where calling often is the only way to actually get some support.
If its really on top of you paying for the occassional deep clean could be helpful if you xan affird it. You could book a bunch of these spaced apart every 2 months to ask for a discount.
Get a benefits review. It astonishes me how often we stumble across some other benefit or discount we should have known about. If your house has dusability adaprations you can get a council tax rebate. You could look into funding for families with disabilities locally and nationally. Theres often small pots of money you can apply for for household equipment or a short break. All that can help keep your spirits up and frees up money for counselling, hiring a cleaner or just life. Carers support orgs up where i live will fund counselling. Often just short term, but i simply reapplied and got a second round of 6 sessions and paid for a few sessions myself in between. I think on the nhs suatained interventions for non life threatening mental health issues just doesn't exist in practice. Counselling was really helpful for me.
Its shit and a hard slog but see it as using your professional skills. Problem solving, project planning, budgeting, funding applications. I find that helps distance me from the horror of it all.
If you have extended family ask for help. They may refuse but at least you know where you are then. Dont wait snd use up energy and get frustrated waiting for people to step up. Its exhausting. Ask, youll be upset and surprised at how many selfish people you know, but you move on.

Get your husbsnd a carers assessment and dont let him be talked into saying he can look after you. They will be as stingy as possible. If hes working a 40 hour week snd doing household etc wuth a bad back he needs to insist on some help with your personal care and support. They will refuse. Then you complain. Its a negotiation, they are protecting their budget, not trying to help. Without clamouring for some support they will let you flounder

My husband has had a carers assessment and they said hes coping, despite him losing three stone with stress and being so underweight the GP has put him on prescribed meal shakes Our council don't have any services at all that will help, and I've tried that link above but in my area it's only for the over 60s. We've also had a benefits review and aren't entitled to a penny. It's ridiculous. I honestly don't know how anyone copes. My area seems to be one of the worst for support unfortunately.

Yes, we are in a council property, long story involving an ex husband and DV. We're on a waiting list for an adapted bungalow, but have been told that all the bungalows in my county were built before a certain year and none of them are suitable for wheelchairs, so it's pretty pointless.

Op ask if social services can assess you for a direct payment. It wouldn’t help financially but you could get a PA to help you with things around the house.

Also are you claiming all the tax credits you can and what about income support

Do you claim ESA? You need to and try to get in the support group, Also have you transferred some of your tax allowance to your husband? This can be done very simply online and you can back date for two years if you were eligable then

Thank you, I'll get on to social services again about direct payments.

I'm not eligible for contribution based ESA because I went back to study for four years for a career change and only worked a year before I became disabled. Even though I'd worked since I was 15 before then. I'm not eligible for income based ESA because DH works, same as tax credits, we get £20 a week towards after school club for DD as I can't collect her but that's it.

Tax allowance is all done :) We had about £400 back which was very helpful.

It seems as though for us to get any benefits at all, DH would have to give up work completely, which seems ridiculous as work is his sanity. He needs it. We wouldn't be any better off even if he did that, as then the benefits would work out the same. The system where one person is disabled and the other isn't, just doesn't work.

On bad days are there any podcasts you like? I struggle to be by myself but find radio 4 podcasts keep my mind busy.

Don’t have any more practical suggestions I’m afraid.

Does Enfys operate in your part of Wales op? I don't know if it's local to Swansea/Neath or countrywide.

Op, please read the Care and Repair link again, www.pembs-cr.co.uk/What-we-do

It says :-

West Wales Care & Repair offers a complete tailor made service to people who are over 60 or have disabilities and is structured to individual needs and requirements

So you should be able to get some help as you are disabled and the over 60 rule does not apply.

Enhanced rate PIP does open the doors for other help like free road tax on the vehicle that's used primarily for taking you out. Check if that applies to Wales, it does in England.

Does your ex-employer have a Benevolent Fund?

Hi op, I can read the stress and worry in your posts. We have been in a similar situation although my dh is the one who is I'll. I have a coup of suggestions for you. Firstly have you talked to your GP about needing more support? We had some good advice from the physiotherapist that dh's GP referred us to.
Secondly I would encourage you and your partner to consider giving up work to care for you. It sounds like he has some health struggles too. Although financially you will be the same, the stress on your partner may be lifted as he will not be trying to care for you and work. You may find your mental health improves too because you are not on your own for so long.

Have you heard of the spoon theory?

@BlankTimes That's in Pembrokeshire. I'm not in Pembrokeshire, my area says over 60s only.

We have free road tax with Pip, they didn't tell us about it though! It's sorted now, a saving of £12 a month.

I'll look up Enfys!

There's absolutely no way he'll give up work, I have discussed it with him and he's totally unwilling to budge. He said that it's the only respite he gets. I know it seems a little selfish on his part when you think that I'm alone all day, but he has such hard work looking after me that he enjoys the "escape". I don't think I could deny him that, I also think we'd be at each other's throats 😁 His job is office work so non physical too, and I think he enjoys not being up and down every 5 minutes like he is at home. I'd love for him to be off, don't get me wrong but I think it would snatch his last part of sanity away.

How do I listen to podcasts?

He shouldnt give up work unless he wants to. Its respite it's also a remnant of independence financially for you all. Our LA has several constraints on how im allowed ti use money they give us that make somd sensible thingd impossible.
On carers assessment, direct payments, self directed support. Im in Scotland and its for our child so its different but my experience is you need to appeal/complain. They have dn internal procedure. Once you advance through that just before you get into the public/external review stage surprise surprise more money snd services materialises is my experience. Dont take no for an answer. Write letters with deadlines and work through it. Get some specialist legal advice and not from a local auth funded advice bunch whose job serms to be to placate you into accepting a measly package.
Finally getting rnough support was life chsnging. Disability shoulfnt mean a life of total hardship and squalor. Fine itll never be luxury but clean decent and not totally knackered out should be achievable.
I know how hard it is and how demoralising it is to struggle on and on with no solution in sight

Op, you don’t say what profession you were in, but have you checked to see if there’s a charity attached to it? Many do. After breaking my back last year, mine was a godsend with two payments which allowed me to pay my mortgage for the five months I was unable to work

Thank you last, that's really helpful. I'll definitely look into making a complaint. They've been rubbish as it is - they came and said we needed a handrail, a wet room, access to outside etc. Nothing has been done and it's been a year and a half.

There is a charity, the Elizabeth something fund. I applied for it to get funding for a wheelchair, with the help of my ex-boss. They turned me down because DH works.

If you have a smartphone/tablet you can put the iPlayer radio app on. If you have a computer you can go to the bbc radio website. I like, the life scientific, in our time, desert island discs (and Elaine Paige on Sunday )

My library also has an app you can download audio books for free

Hey there!

I’m so sorry you are going through this. When you are in a horrid state of mind it’s so hard, particularly with your physical disabilities also.

Please forgive me if this has been suggested but a few ideas:

Does your area have Homestart? This is a charity that helps people by coming a few hours a week, cleaning, taking people out. Whatever they need

Does you council do a grant for Home adaption? It sounds like you need better access around your home. They could help with handrails, improving the garden, anything that makes your life easier

Thirdly, you need a social worker. They have access to services and can refer you to the things you need. If you are being ignored, please ask again and again until you get listened to

Take care xx

Family Fund is another charity to can apply to for various things. Just google it, it should come up x

The other thing is your local council should have something called the “Local Offer”. I believe these are services you can access for support. Sorry, I’m just thinking of things as I type!

I agree Op when you said that the system does not support one person to work when the other is disabled.
I am disabled and can’t work but my husband does. We would get more money if my husband didn’t work

Thank you notsohippychick - I didn't realise we were eligible for help with Homestart but it seems we are, so I've emailed them!

I had a rather short and rude response from Care and Repair this morning basically telling me to go away as I'm not over 60. How ridiculous - it's about time people realised young people can become disabled too.

Sorry to hear that, Thegreatest - it's awful isn't it? The other partner shouldn't have to give up their career to support a disabled partner financially. Everyone moans about people on benefits and those who sit at home all day doing nothing, then actual people in need seem to be punished by going to work and would be better off on benefits! It's ridiculous.