A liability

That’s me, a chuffin’ liability. Diagnosed ten years ago with “mild” PPMS. So chuffin (I love that word) mild I’ve not been able to live independently for most of them. I’ve deteriorated steadily. I can’t do much at all now. I was somewhat deluded back then, I really believed to NHS would look after me, that there’d be support and assistance.

I’ve learned that being disabled is expensive, I’ve been means tested and it’s been decreed that I’d have to spend tens of thousands of pounds before I’d become eligible for assistance. We have a modest bungalow, a mortgage, and a nice car, courtesy of a car loan, no savings left, but no one will tell me how they arrived at that figure I do get PIP which helps enormously and I am grateful. We both have occupational pensions, so we’re absolutely not poor, so I mustn’t grumble. I’ve paid for wet room and building work, including a ramp to make my home accessible.

When I married an older man I expected to have to look after him in his old age, not have him spend his old age looking after me, which incidentally he does wonderfully, with good humour and mostly without complaint.

That brings me to the liability bit. He’s I’ll in bed with gastro enteritis, probably the chuffin’ (there it is again) noro virus that’s doing the rounds. I can’t look after him. I’m a liability. I don’t care that I’m not showered or dressed, or that I haven’t had anything to eat. I want to cry because I can’t take care of the love of my life. He’d be better off without me.

I don’t have carers I’m not eligible for help, I’d have to pay, but we have been stubbornly independent thus far, congratulating ourselves that we’re coping without outside interference. We have no family, just each other, but that’s another story. People we thought were friends vanished soon after my diagnosis. I’m not very good at asking for help, and absolutely will not impose on the few friends who didn’t run for the hills. They have enough to do.

Thank you to those who’ve got to the end of this long post, I really have no right to grumble.

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Hello, Flowerpot.

I absolutely insist that you grumble. This is grumble city, the glorious epicentre of grumblicity. (New word.) If you need to moan, then chuffin moan. (plagiarism).

The real bad bit of having to deal with the beast is when your loved ones are ill. It’s not a case of your illness being worse than his; everyone has the misfortune to be ill sometimes. I suspect he would find it a real comfort if you carried on just doing things together-even if it is just lying about. Don’t worry about a shower, it will feel fantastic when you finally get in there. I don’t know what external help you can get. Is it worth getting the doctor out? I just ask for a home visit and explain why. They might put you in touch with someone like your local authority adult social care.

There might also be a local street life forum (google it) which is good for getting someone in to do a bit of housework or whatever on a temporary basis. They usually charge about ten pound an hour.

As I said at the top, no-one minds a grumble here. You’ll get sympathy, empathy and useful advice.

Best wishes, Steve.


Hi Flower

Steve is so right…grumble, rant, scream or shout, whatever helps you to feel better, as this is the place where no one judges…as the Tories would say…we are all in this together.

Have a word with your GP or adult social services, there has got to be something, or someone, who can help.

I wish you all the very best, come back and let us know how things are, take care.

Pam x

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I am sorry to hear of your predicament.

As already stated above, you must get in touch with Social Services so that a care plan can be set up. Would your MS nurse be able to speed up some help on your behalf? I assume that you have contacted your OT department for all the usual aids and grab rails.

It’s shocking that in a supposedly civilised country like ours, the services you need are subject to a postcode lottery. Living one side or the other of an imaginary border can make such a difference.

I hope you can get some help very soon and don’t worry about making a nuisance of yourself with these authorities. It sounds like you both need some urgent help.

Best wishes

Alun x

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Thank you everyone. Crisis over for now. Hubby better, both showered, dressed and breakfasted. To answer some of the points, and suggestions.

The doctor will not turn out for symptoms of viral gastro enteritis, which is very contagious. Hopefully I’ve escaped by virtue of copious amounts of bleach and almost obsessive hand washing.

As for a care plan, the MS nurse and social services tell me it’s means tested and that having been turned down by the disabled grants facilities office I will have to pay for and plan my own care needs. I’ll have to admit defeat sometime I suppose and get help in, maybe an hour or two a day.

I do have a cleaner, she comes once a week, an hour and a half cleaning, but she’s become a friend, and keeps me company for another hour or two, but I only pay for the cleaning.

I have a bed handle and perching stool courtesy of the community OT. I have been paying for physio from a neuro specialist physio, but she’s currently off sick herself. The OT department tell me that paying for physio makes me a private patient so I now have to pay for anything they might provide! I challenged this, I’m not paying for physio as an alternative to NHS physio, but because it’s not available on the NHS. After many months I received a very patronising letter which told me nothing and treated me as though I was stupid, and attempted to baffle me with bullshit.

Yes, we are members of a church, but then that’s back to me and my reluctance, no, refusal to ask for help.

i really appreciate everything you’ve said, it means such a lot, and it helped just sharing my concerns.

Thanks again everyone. xxxxxx

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I`m glad things have improved and you are both managing better.

About your reluctance to get outside help in…whether or not it`s paid for by you or the LA…

6 years ago, my disability was worsening and hubby did everything. But his RA flare ups made coping difficult.

I asked him about getting help. He was dead against it.

A year later, I knew I had to do it behind his back. He wasnt too chuffed…my best word too…but now he is so pleased with my 24.25 hours, plus 2 sleepovers a week.

Dont dismiss it totally…there may come a time when you have to do something about it.


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