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Hi, I am new to this - Carers UK Forum

Hi, I am new to this

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Hi
I am new to this. I am new to the forums.
I have been caring for my mother since she was diagnosed with Motor neuron disease last year. I gave up full time work to care for her.
However I didn't realize that I have actually been caring for my Nan for about 3 years. I didn't realize that helping Nan out with her washing, shopping, cleaning, paying her bills, taking her to medical appointments and sorting her medication out was actually caring, I thought I was being a good grand daughter, she had no one else to do it.
It has been difficult to balance caring for my mum and continuing supporting my Nan but I thought I was managing.
But my sister who has serious mental health issues has split with her husband and had a breakdown. I am caring for her too now.
Some days I have to sit with my sister for hours talking to her, trying to calm the storm, trying to stop her killing herself or drinking or cutting, I have to be there to talk through the million worries she has running through her mind, i have to try and say the right the thing, I have to sit up on suicide watches. I have to support her through her devastating lows but also stop her doing crazy things while she is in her manic stages.
I am finding it so difficult to manage the 3. I love them all dearly but I am just so tired. I feel so bad all the time and i just want to run away.Am I a terrible person? I feel like I am failing and not sure what to do.
Hi Nicola

i just got up to get a drink of water and when I read your post I just had to reply to say a few words before getting back into bed.

You are very tired, exhausted, and of course you are, giving all your time and energy helping others close to you, but you cannot continue giving everything you have, without setting aside some time, for just yourself. Precious time I call it.

I am tired, so I must close off, but rest assured, many responses will follow from other members, so things will get better for you as time goes on.

Welcome to the club.
Hi Nicola,
Welcome to the forum and I'm so glad you have found it as you do sound as though you are near drowning in care at the moment.
I think your priority at this stage should be absolutely 100% yourself because if you overdo it, and burn yourself out, you won't be able to help any of them. I think a good start would be to step back and reassign yourself as manager rather than provider. Managing the care of all 3 will be more than enough for you to cope with.
Have any of them had full needs assessments with Social Services? Have you had a carers assessment for any of them?
Do you live with any of them and will they be self funding for any care needs ?
Are you registered with GP as being carer for any of them and have you already asked GP or Social Services for support?
That's far too much for you - or anyone! - to cope with!

No wonder you are feeling the way you are, and of course that doesn't make you a bad person! How can any one single person be expected to cope with all that triple load of caring? They can't, that's what!

May I take a guess and say that I suspect that, right now, the thing that is getting you down most is your sister? Not only because she is taking up SOOOOOOOOOO much of your time (all that patient listening to her outpourings etc, sigh sigh sigh) but because she is the least 'managable'.

With your Nan, you know what you need to do, and are doing it, with your Mum, dreadful though MND is, she is mentally still there for you, but with your sister in the grip of MH, the problem is that MH people are RUTHLESS about everyone else.

Your sister is 'drowning' in her own misery, and can think of nothing else except her own woes, and her own misery. She won't think about you, or any other human being - those with MH can be hideously 'selfish' in that respect. She, I fear, is your biggest problem.

First off, is she on any medication? That's essential as a first start, whatever counselling/therapy she then moves on to (usually, as I know from my own niece, the drill is that the GP puts you on meds first, which you have to take for about 6 weeks to 'calm down' a bit, before you start counselling).

You may need to go with her to the GP, but insist she takes meds as a first step at least. You mention a history of MH - maybe she's always been on meds????

Where is your sister living physically, now she has left her husband? Can YOU talk to her ex at all - I am sort of assuming that HE was the one that called time on their marriage? Being married to someone with MH is VERY difflicult.....
Thank you all for the comments and advice. It has made me feel better.

I am going to see my GP later in the week to explain how I feel and see if he can do more for my sister.
I feel I can handle mum and Nan, even though it is tiring I know how to care for them.
With my sister I feel like I am in quicksand. Her mental health team have been really useless lately and she is waiting to start therapy again, (they had to stop because she tried to kill herself and her home treatment team need to say she is not a suicide risk before going back into therapy).
I am always calling her team for help and they never call me back. When they visit I speak to them about how she really is but it is like they don't care about my opinion. It is like they think I am being over the top about how bad she is.
I need to find some time for myself. I know I must do this. Even though it is hard and makes me feel guilty. I must do it.

Thanks everyone
Hmm, sadly, I rather thought I was right to say your biggest source of stress is your sister....it's SO often the way. (Do NOT feel bad about it - everyone dealing with someone with MH feels that! My bro and SIL feel that about their daughter with chronic MH)

You say 'quicksand' and that is SO apt! You simply 'sink' into their misery, and they sink even further too. 'Bottomless pit of need' is another phrase often used to describe those with MH all too often.

Re your sister's MH team - alas, as we know, MH is grossly underresourced in the NHS, and grimly, part of that is that treating it is SO 'expensive' - it's partly why meds are doled out - LOADS cheaper than extremely expensive time in therapy. There are no 'qujick fixes', and the longer someone has had MH the more intractable it is to treat - their 'norm' IS being 'depressed', and they have simply forgotten what it feels like to be happy....

It's frustrating that the MH team aren't listening to you, but, again, the last thing they will want to do is accept how bad she is. (Actually, I find it a bit weird that she has to stop feeling suicidal before they'll renew her therapy - isn't feeling suicidal the most urgent indication that she NEEDS therapy badly?? Or do they simply up her meds to 'stabilise' her, is that the idea? Or that someone suicidal simply won't 'engage' in talking therapy, and just blanks the therapist, or repeats how much they want to be dead etc etc, so the whole session is a total waste of time?)

more cynically, of course, the NHS wants to 'minimise' your sister's ill health, so they then 'don't have to treat it' so much!

As to your sister herself, do you have any idea just WHY she is so depressed/suicidal? Are there what I might call 'real' reasons for it? (OK, splitting up with husband - but, a I speculate, did they split up BECAUSE she has MH??). But were there any life traumas she's had to cope with in the past, that might have set off the MH?

All too often, of course, it's far more 'vague'. If I had to explain WHY my niece has MH I would say along the lines of that her mother, my SIL, is a chronically anxious person, and 'taught' her daughter to be anxious about everything, my niece picked up on how anxious her mother was about herm, and 'believed' that yes, there WERE things she needed to stress over! Yes, my niece DID have some 'real' health issues, but they were of the 'trivial' variety, such as very bad eczema (horrible, I know, but in the great scheme of dire childhood conditions, not that bad). More significant was my niece's late development (difficult birth that went wrong - SIL had PND badly as a result - so MORE cause of chronic anxiety), and, worst of all, the fact that she is a shy, introverted person, very quiet.....whereas both her parents are highly confident socially and very outgoing and goal focussed! They saw their daughter's quietness as a dreadful 'problem', and kept hammering away at it, forcing her to socialise, and that just made my niece shrink more and more etc etc (she used to 'live' in her bedroom......). The more her parents worried about her, the worse she got, sinking into chronic anxiety about her 'problems' as a teenager, from which she has never emerged. The mental stress then compounded itself into the chronic stress reactions the body makes - ie, IBS and FM. A really intractable vicious circle of cause and effect and yet more cause.....

I say all this simply to show how MH can 'take over' someone's life, even if nothing particularly traumatic happens to them.....

My niece was never taught 'resilience' and utterly lacks it....she 'can't cope' with what life throws at her, even though she has a perfectly pleasant life *she has a home, a partner etc). She now defines herself as someone 'with depression' that she believes is part of her, and will be part of her all her life. It is her 'normal'. It's a desperately sad waste.
Nicola, your role needs to change. So you MANAGE the care of the other three but the physical caring for them is all done by someone else. Yes, yes, I can hear you say already that they want you, and you alone, but it's just not possible. Even when I'd gone into hospital for life saving surgery my mum wouldn't organise outside carers, then she broke her leg and nearly had it amputated. After that I made it clear that her choice was either outside carers or residential care, because I was under strict instructions never to care for anyone ever again. (But I still had my son with severe learning difficulties).
Your family role is obviously that of dogsbody, like mine was (at one time our family had five people entitled to highest DLA all at the same time!!!) and it took counselling to help me change my way of thinking, and I think it would help you too.
Start by understanding that YOU are the one with all the power, and you ARE entitled to say "I don't want to do this anymore" and head for Australia! You use the phrase "have to" many times, you don't have to do anything whatsoever.
Don't feel guilty about what you can't do, feel proud of what you can.
All three should have a Needs Assessment from Social Services, and you, a Carers Assessment. Are they all claiming disability benefits? Paying you anything for the care you provide?!