ME/Chronic Fatigue Syndrome carer

[Nikiya]

Well, they ask us to tell something about ourselves, so here goes:

I care for an older family member who has ME/CFS, and have done for 25 years or so. Until this year, it hadn't been particularly onerous: she was reasonably self-sufficient although largely housebound, and I managed pretty much to have a reasonable life of my own while looking after her. Then something somewhere went wrong: I still don't know what it was, and the doctors are baffled, but her condition deteriorated very noticeably. She could barely get out of bed, and started suffering severe anxiety and panic attacks, to the extent that I could barely leave her on her own at all: at its worst, I was totally trapped in the house, and had to get a friend to sit with her just so I could go to the supermarket. The GP has put her on some different antidepressants, and she seems to have been better as a result - I can usually get out for a couple of hours or so - but I'm just bemused as to what's caused this change. Not only have I turned into something getting close to being a full-time carer, but I'm also self-employed and trying to keep my business going - I do need to eat . It's pretty tough, and I'm struggling. We're neither of us getting any help or support from social services, who seem determined just to ignore us, and I don't have any spare energy to battle with them

So, that's pretty much it in a nutshell.

[bowlingbun]

Hello, welcome to the forum. You can't go on like this!
Social Services have a duty to visit and write a needs assessment for your relative and a Carers Assessment for you. Has this ever been done? Updated in the last year? Written copies sent to you?
If not, write formal request letters to them, sent Recorded Delivery.
What is your relationship, and how old are you both?
Social Services won't provide help, but should still provide information, if your relative has over about £23,000?
Last, but by no means least, what are you being paid by this relative for providing all this support?!
Don't answer anything you don't want to, but your replies will help work out a long term solution.
You cannot be forced to care for anyone, the choice is yours. The only power she has over you is the power you let her have, it's your choice. So many of us have ended up in similar situations, me included,

[jenny lucas]

I don't understand - what is this lady living on? (She needs food too!). Unless she has a private income (!) then she obviously isn't working/earning (???) so she can only be living on PIP or whatever.....PLEASE don't tell me YOU are keeping her!

As BB says, the first thing, alas, is to summon up enough energy to get her all the benefits etc to which she is entitled, and to get you Carers Allowance and so on.

The cause of the decline is mysterious - but then these wretched 'systemic' conditions like ME/CFS (and the other horribly debilitating one, fibromyalgia) are mysterious anyway - no one seems to know what causes them let alone what cures them. As for the depression/anxiety, that could be separate, or linked, or simply because she's depressed 'by' her CFS (not surprisingly!)

They key thing is that this deterioration could well be permanent, even if her mood picks up with new ADs (and remember, ADs tend to 'atrophy' in their effect - you need more and more to get less and less - they are a 'fix' not a cure). So you CANNOT continue as you are.

You do need to get outside help in, because otherwise you will both suffocate and starve! (Though BB raises a key point about you being 'paid' for your care of her) (are you living, say 'rent free' for example?).

Remember, too, that those with anxiety disorders can sadly become incredibly 'ruthless' and 'self-focussed'. She may well not realise just what a 'burden' she is to you in that respect - she will just be 'desperate' and 'clingy' etc etc. But her anxiety, however real it is to her (and I'm not saying it isn't), doesn't actually reflected any 'real' 'physical danger' so to speak. She may 'dread' you going out, but nothing bad will actually happen to her if she is left alone......

It's going to be a difficult line to draw, knowing when 'care' becomes 'pandering' - care is fine, pandering is not! You won't be able to rely on HER sayso, as only the desperate anxiety will answer - you'll need to step back emotionally, and in a way 'make her strong for herself'....even though she won't want to be!

Otherwise she will, alas, 'suck you dry'.....she won't mean to, but she will.

Time therefore to reassess your life, sort out boundaries, set up external helplines, both financial and practical (ie, benefits and care-workers), and find sufficient space for YOURSELF and YOUR life - which is as important as hers, never forget.

[bowlingbun]

What do YOU want to happen now. Extra care in the home to help you, or replace you; or residential care for the person concerned.
The other desperately important issue is that of housing. Is the property owned outright by her, or rented. If rented and she needs residential care, will you inherit the tenancy?
Too many long term "relative carers" have been made homeless when someone dies. Don't let this happen to you. Start making enquiries and arrangements quietly, sooner, rather than later.

[jenny lucas]

I'm afraid I agree with BB - your most important priority is to secure your own accommodation. If your caree is suddenly, say, taken into residential care, for whatever reason, what will happen to you?

Once YOU are 'safe' then you can start to sort out more external care for her, so that you can have enough time for yourself, both work and your own leisure.

[Jayne_1708]

Hi Alison,
Sorry to hear about your struggles. I have M.E/CFS but no where near as severely as the person that you're currently caring for . It is a very weird illness and though they seem to know much more about it than they used to, it is as the other commenters have said mysterious.
I'm fortunate that I can manage to work part-time but have to manage every part of life to try to avoid relapses. Even then , sometimes they can just happen, seemingly out of the blue. Has your caree suffered much with Anxiety before or is it quite a recent thing? What sort of input has your caree had from Dr's and Neurologists etc. Many of us sufferers and families end up becoming experts in our conditions because there are still relatively few answers/treatments that the medical profession can give us.
I'm glad you're getting some support but it sounds like you need much more help because becoming a sole carer in this situation must be very stressful for you, especially when it seems like there is little outward reason for such a decline. I wish you all the best and hope that you find greater support in this very difficult situation .

[Nikiya]

You can't go on like this!

No, I do realise that

Social Services have a duty to visit and write a needs assessment for your relative and a Carers Assessment for you.

Allegedly they do, yes, they're just being negligent in their duty. But there's a limit to the number of times I can sit on the phone for an hour waiting to get through to them - ditto my other family members, her care coordinator etc.. The trouble is that the whole social services setup is completely opaque. I'm about to start writing to my MP, in desperation.

What is your relationship, and how old are you both?

She's early 60s. I'm somewhat younger. Excuse me if I don't provide more personal details until I get my username changed.

Last, but by no means least, what are you being paid by this relative for providing all this support?!

I thought the definition of carers was that they *were* unpaid?

[Nikiya]

I don't understand - what is this lady living on? (She needs food too!). Unless she has a private income (!) then she obviously isn't working/earning (???) so she can only be living on PIP or whatever.....PLEASE don't tell me YOU are keeping her!

As BB says, the first thing, alas, is to summon up enough energy to get her all the benefits etc to which she is entitled, and to get you Carers Allowance and so on.

She's on the usual benefits. And as for Carers Allowance, I'm not eligible The fact that I'm self-employed and am taking a major financial hit at the moment because I can't work full-time unfortunately doesn't suddenly make me eligible.

They key thing is that this deterioration could well be permanent, even if her mood picks up with new ADs (and remember, ADs tend to 'atrophy' in their effect - you need more and more to get less and less - they are a 'fix' not a cure). So you CANNOT continue as you are.

Yes, I know. (The ADs were originally prescribed mainly to help with sleeping, BTW, rather than for countering depression). They're a sticking plaster over her current problems, nothing more.

Remember, too, that those with anxiety disorders can sadly become incredibly 'ruthless' and 'self-focussed'. She may well not realise just what a 'burden' she is to you in that respect - she will just be 'desperate' and 'clingy' etc etc. But her anxiety, however real it is to her (and I'm not saying it isn't), doesn't actually reflected any 'real' 'physical danger' so to speak. She may 'dread' you going out, but nothing bad will actually happen to her if she is left alone......

No, that's not the case here. She's back to something nearer normal in that respect, although it may be down only to the medication, of course.

[Nikiya]

Extra care in the home to help you, or replace you; or residential care for the person concerned.

What I WANT(ed) is cover so I can get out more without having to keep an eye on the clock and make sure I'm back within x hours. But the rug has just been pulled out from under my feet on that one, so I'll post separately about that.

The other desperately important issue is that of housing. Is the property owned outright by her, or rented. If rented and she needs residential care, will you inherit the tenancy?
Too many long term "relative carers" have been made homeless when someone dies. Don't let this happen to you. Start making enquiries and arrangements quietly, sooner, rather than later.

She owns the property. We realised some years ago that she wasn't going to be able to live on her own again, so decided to sell our places and buy somewhere together. I sold mine, we moved into hers and started looking, various things went wrong with sales and - cut a long story short, we're still here and she's not currently in a fit state even to think about moving. (Adding insult to injury, the guy who bought my place resold it last year for about 80% more than he paid me for it!). I made enquiries about getting my interest in her property formally registered, but was told this would be regarded as an attempt to circumvent being required to sell it if she needed to move into permanent care.

[jenny lucas]

Alison, sorry, I still don't get the financial set up!

When you say 'we' do you mean 'Alison' and 'ME/CFS caree' or do you mean 'we' as in 'Alison' and 'somebody else' (eg, Alison's partner) (sorry, not trying to pry, let alone if this lady IS your partner, but simply to see if there is a 'third party' involved here, which might further complicate financial matters!'

However, assuming the 'we' is 'Alison and ME/CFS caree', are you saying you were both owners of previous properties, which both of you sold simultaneously but separately, and then she bought the place she's living now with the proceeds only of her OWN sale, or with the proceeds of YOUR sale as well?

The difference is crucial, obviously ,because if you put YOUR money (from the sale of YOUR previous property) into her purchase, then at worst you've simply loaned her the money, and at best you've bought the percentage equity in it that your contribution amounts to.

Now, hopefully it's the latter, in which case that percentage equity is YOURS and cannot be taken into account when evaluating her share of the equity to see if she qualifies for, say, free care/residential care (which she's unlikely too, given that her share is presumably way over the £23,500 threshold for free/LA-funded residential care)(not sure about the rules re carers-coming-in-care - others here know, as you ay already anyway, plus the team of experts at Carers uK itself)(best to email them for fastest response to questions).

If you never went down on the title deeds as tenants-in-common or joint-tenants (the two forms of sharing property ownership so I understand), and if you - incredibly rashly I would hasten to warn!!!! - simply handed your money over to her so she could complete the purchase and then put it entirely into her name (though perhaps there were good reasons - eg, your ex trying to get hold of your money or whatever!!!)(just thinking outside the box here!), I still think a solicitor could establish for you that this was NOT NOT NOT a 'gift' from you, but a 'loan'. In fact, you could probably simply write out a 'note of hand' to say 'I, Alison xxx, have loaned the sum of xxxx on (date), which requires payment in full, on the sale of her house, signed by you and countersigned by your caree' (I've done notes of hand to my brother in the past, re loans - they are quite legal!)(though if the sum is large, as it is likely to be when property purchase/sale is involved of course getting it done via a solicitor would be sensible)

In a worst case scenario I would think you would have a good case for suing her for the return of whatever you handed over to her to purchase the current property. After all, it would be her word against yours that it wasn't a gift! ?????

If, however, you didn't hand over the proceeds of the sale of your own previous property to her, then presumably that money is still in your possession in some form, whether cash/property/investments (but it does sound from what you said about 'registering an interest' in 'her' property that this is not so.'

Whatever you did, however, if she used your money to buy her house, then your share of that is yours, whether as equity or a loan. The council cannot include it in any assessment.......it would constitute theft!
(Please please tell us you didn't just give her the money!!!!!!!!)