New member, but long time carer, struggling badly....

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211 posts
Hang on, the worst is over now. You are now very unlikely to "lose everything" because if mum is detained against her will, that starts a different process which could mean that the NHS HAS to pay for her care forever.
Don't think ahead for the next few days.
Get some pills from the GP to help you relax into sleep, because you must be dog tired. My GP gave me Amitryptilene, which worked well. Jenny will be along presently, I can't remember what she was prescribed, there are a range of options.
Even if you do not WANT to take medication, your body has been so deprived of sleep for so long that your BODY desperately needs rest. Don't be surprised if you just sleep and sleep, remember how much sleep you haven't had.
Mum is now in safe hands. Finally, the medical profession has seen first hand what mum is like at her worst.
Feel proud of how long you tried to help mum, and then sleep.
No advice but do feel for you. I would say it is in your best interests to keep your mother in hospital and if they try to discharge her, say that there is no one to look after her. The whole 'mental capacity'thing is a nightmare as things that you and I would consider dangerous to the person or to others, seem to be accepted. It may well come down to funding because I think BB Is correct - if someone is detained under the Mental Health Act, I think care is then free.

I can only wish you the very best at this very difficult time. Your mother does sound a danger not only to herself but to you and I do feel you need to put yourself first now.
Things can only move forward now. Get a diagnosis. It's better to know however painful.
Give yourself a break now. You must. You are a very admirable lady.
I know that future funding is of great concern to you. Section 117 f the Mental Health Act is the relevant legislation which explains about free after care, but only if S117 has been used.
However you should also be aware that if mum continues to be a danger to herself and others and needs care in an EMI home (Elderly Mentally Infirm) then she may qualifty for care under "NHS Continuing Healthcare".
I hesitated about giving these details at this point, only read up when you feel it is appropriate. However, if you are the sort of person (like me) who can only rest when ou know that things are sorted, it might help now.
Hi Diane
I've read through the post and didn't feel I could not reply although I'm not sure I'm on quite the same wavelength as the others, because I can identify with quite a lot of what you are going through. Dementia for I suspect that's the cause of all this is an evil disease , so hard though it is try to remember happier times - you said at the start of the thread you have always been close to your mum so hang on to that and don't lose her memory in the present dramas unfolding.
I've had Dad screaming all through the night , sometimes in anger sometimes pittifully and truly know what's like to be getting so irritable because of being tired.
I've also been down the road of insisting things were down to UTIs , and there have been many times in the past but it seems now at the same age of 91 that Dad's decline is now dementia and not infection. He has played up so much with professionals the discharge nurses discharged him as being unable to help. The district nurses and Drs are waiting hopefully for community mental health to come up with a plan and when they arrived , they were also unsure what they could prescribe because of his complex medical history and co morbidities. It feels very much as though all the professionals are just trying to manage him until the inevitable happens. I hope you have success with your mum being in hospital and have abreak, although in my own case he was discharged fairly quickly as all due to dementia and "medically fit"- all stats and obs being ok. No one mentioned sectioning him and he has pushed nurses and carers away and tried to bite a discharge nurse. If you want to go down that road of sectioning him, I suspect you will need to push hard for it so keeping a diary of all events is very important. Make sure you stress the dangers to herself and to the property and her carers as the screaming , tantrums and irrational behaviour probably won't be enough. The hospital's main aim from day 1 will be getting her discharged to free their bed up -sorry if I am cynical on this point .Dad is now at home mostly in bed, sometimes doubly incontinent and has moments of great confusion with occasional lucidity. All has been quiet at night recently until yesterday when he yelled the place down again . Even when dad falls and is disorientated, the paramedics don't take him back to hospital-its all "just dementia" and as such not a medical condition the hospital can treat. Sorry if this isn't what you wanted to hear but just sharing my experience for what it's worth.
Diane, hi, I've just 'arrived' on the forum. How are things at the moment? Did you get to your GP, did he give you anything to calm you down? (My 'fave' is Diazapam - you shouldn't 'live on it' as it's addictive, but for short periods it really takes the edge off things and lets you 'cope'...AND it relaxes your muscles, so you are less physically tense too. It should help you sleep.

If you didn't manage to get to the GP, then have a warm, sweet milky drink, and as BB says, you will probably sleep massively - your body and mind is at the edge of what it can endure, and you will 'collapse' catastrophically if you don't get some sustaining rest.

Is your mum still in hospital? I HOPE SO! The more medics see her behaviour, the better, I'm really glad she was such a nightmare to the paramedics, as that will all file into her report.

I agree the best option for you is that she is detained as a mental patient, as that (a) proves she has no capacity and (b) means 'free' care via the NHS.

One possibility might be that the NHS do something 'on the NHS' but 'via the private sector' - for example, they may send her to a 'nursing home for the mentally impaired' which is 'private' but which the NHS pays for. Something similar (without the mental bit) happened to the mother of someone I know who had fallen, and had a UTI too, and instead of keeping her in the large (and distant) general hospital she was sent to a private nursing home, where she spent a week, but it was all covered by the NHS.

If however the NHS somehow say it's 'just dementia' as Henrietta fears they might, and then she has to self-pay, I think you said earlier that she may well have something like £75k in savings. Well, you know, that would keep her in a dementia care home for two years (allow £100 a day, that's what my MIL is paying) (so, £36k a year!). Yes, of course YOU deserve that £75k, but to get rid of her from your life for the next two years would be worth it! And hopefulluy she can't live more than that, can she, given the state she's in? Her lungs for a start, must be shot to pieces from all that smoking.....

I do think it's imperative that you tell the hospital, your GP, her GP that you WILL NOT BE LOOKING AFTER HER ANY LONGER. So if they send her home, you will either not lift a finger, or, better still, you won't be there. Can you not get to your partner, with your little dog, at least temporarily, even if it's tricky for him to have you 'permanently' because of his mum. This really is a crisis, and if you are not physically in your mum's house I don't see how they can palm her off with care-workers, not in the mental state she's in...

Hoping SO MUCH that this is 'the end' now for her living at home, with you as browbeaten and near to collapse as you have been.

We are all here rooting for you. over the several years I've been on this forum you are not, alas, the only middle aged woman whose life has been sacrificed to a selfish parent, so pleae don't feel 'weird' or anything - it's grimly more common than you might imagine. That said, as BB pointed out some posts again, yours is one of the most extreme situations.....
Hi all,

I'm going to say sorry in advance if I miss anyone out in thanking or answering a comment - I tried desperately hard last night to sleep but couldnt - all I could hear was my mother screaming for me to give her more cigarettes & Rennies (as well as the 80 -97 ciggies daily, she was on a box of 72 Rennies also) please forgive me if I'm a bit 'fuzzy' today :/ xx

I've been to the doctors and saw a lovely lady who knew the home first nurse who called on me yesterday & saw me in a terrible state after Mum had been admitted. I've been given Mirtazapine to help me sleep for now and then I am to go back in 2 weeks for a check up and possible anti depressants. She was so very kind to me and also reiterated that I have to stand my ground regards my mother coming home - if that's even possible (and I now know, no matter what my own financial fate may be, that I can't ever put myself through the events of the past couple of weeks ever again - I honestly can't face be bullied into giving mum tablets and cigarettes that will cause serious gastric problems at worst or instant death for us both because of the smoking all through the night, with little/no capacity and a mountain of tissues by the side of the ashtray. There's no reasoning with her. I tried pleading with her that the dog would die (he sleeps upstairs with me and she loves him to bits) but she kept telling me I was being ridiculous and very recently that she didnt care anyway. So basically if this is classed as 'having capacity' then I have to admit defeat.

I can imagine that she will be given the dementia tag in an effort to get her back home with me. But I have resigned myself to losing a roof over my head (the money doesnt matter - it belongs to her after all and she should be where she can be cared for better than I know I can now manage as I'm totally spent, emotionally & physically - even a couple of week's rest would only 'plug' the gap momentarily till I felt this ill again. I just know I reached the end of my tether on all accounts and it was only the kind help & support on this forum that saved me. I don't know how solicitor will view it if mum tries to change her will if i refuse to be bullied home slave anymore but I'll cross that bridge etc.

I hope to have at least a very long rest tonight and I'm now starting to keep small amounts of food down without being violently sick so there's hope! :) Thank you all for caring about me - truly I couldnt have survived recently without your kind help & my heart goes out to all carers on here ...Bless you all xxx
If you can possibly go away for a few days, go. Get away from absolutely everything. There are lots of cheap hotel deals at the moment. GO!
After my husband died,I didn't sleep much at all for almost 2 months. I just had to get away, stayed in Devon for a few days, really cheap deal, and just meandering around doing not a lot, my head started to come to terms with what had happened. It was easier away from home.
Dear Diane,

First of all I'm glad to see you posting - that's a good sign! (If you were totally 'on the floor' so to speak you wouldn't even be able to get to a keyboard!!!). So, that's good.

It's also good that your mum, at least for the moment, is in hospital and 'off your back'. It's also VERY good you went to the doctor and how nice and sympathetic and understanding they were. The tranquilliser etc will give you a bit of 'shelter' from all that is pressing down on you, and a tiny bit of essential head room and protection, so that is really good. It also is a material signal to the medical world that you are NOT able to look after your mum as you were previously doing.

By the way, a thought occurred to me about the screaming for cigarettes....did the GP suggest this I wonder, though I would have thought it might be worth asking some one medical even's that at 75 cigarettes a day I cannot but think, that, whatever her mental state, she must, physiologically, surely, be actually medically addicted to them (the nicotine, is that it?)(I'm not a smoker, so not quite sure what it is one gets addicted to!). But, as we know, grimly, addicts of any substance are fundamentally 'irrational' and also 'desperate'. (Think how much crime is commtted by drug addicts desparate for the money for their next fix!). So that 'addiction' may, if not completely, then certainly surely partially, be contributing to her extreme behaviour when she is 'denied' her 'fix' of nicotine. I would have thought, maybe, that the GP would put her on something like Nicotine Patches, or whatever, where she is getting the nicotine into her bloodstream, but not actually physically smoking (ie, the damage to her lungs with the smoke itself)(not to mention the risk of burning the house down with leaving tissues beside the ashtray!)

(By the way, I'm very glad to hear she loves the little dog - this is a good sign, isn't it, that she isn't 'all monster')(I hope she is NOT 'all monster' and that, you know, with proper treatment and care - and some 'firm' management! - she will improve markedly and what good there is in her might yet's always sad to give up totally on someone, though I would be the first to agree with you that you CANNOT go back to the situation as it had deterioriated SO badly that you reported when you first started posting - that's just NOT acceptable!)

I think, speaking only personally, that your attitude right now is the right one for now - it's a kind of 'hands up' attitude that has looked at 'the worst' (ie, you'll be homeless and broke!) and have said that is preferable to going back into that 'nightmare' that your mum had become.

But, you know, I don't think you will be homeless, even if your mum goes into residential care as a self-paying dementia patient, and that is - and PLEASE do check this! - that it could be that because your mum's house is your home, you've lived there 'all your life', that, at the very worst, the council can only 'put a charge' on it so that you get to go on living in it, but that once your mum dies, then it could be sold to pay for her 'back fees' (which the council may pay 'up front' while she's alive).

Now, I'm not at all sure of this, but others here know the rules and there is the team of experts on Carers UK itself to consult (best to email we are told). But I'm sure I've read of others in your situation NOT being 'thrown out' when their parent goes into residential care.

That said, as I wrote last night, if indeed your mum DOES have substantial savings, that should see her for a good couple of years residential care, and that gives you a breathing space if nothing else.

(By the way, I disagree that it's all 'her money' - personally, I think it's your 'back wages' not just from looking after her but also from all those years of underpayment when you worked for your parents and they actually took money OFF you when you tried to leave!!!!!!!) (You deserve EVERY PENNY of your mum's estate to be left to you!)
Sorry, that post got very long!

What are the nurses/doctors at the hospital saying about your mum's condition? They must have noticed her 'addiction' to cigarettes for a start - how are they managing that? Also, if she is taking all those anti-acids, it could, you know, be a sign there is something seriously wrong with her stomach/oesophagus - it might be more than just the smoking (or screaming!) causing it?

I would say, again speaking only personally, that the doctors will need to decide that, in respect of both her behaviour and her physical condition, how much of both is caused by:

- old age (ie, what's natural' for her time of life)

- her 'pre-old-age' medical condition (eg, what she may have had for years - eg, nicotine addiction?)

- dementia

- psychosis (or similar)

- as yet undiagnosed medical conditions

- 'inherent personality' (as in, maybe she's always been someone prepared to scream for what she wants, and 'explode' if her will is thwarted!!!)

Have you had any contact with either her, or the hospital medics, about her yet? And then there is going to be the question of the 'social workers' etc, ie, whoever decides what is going to happen to her next, and when. There is a LOT of cumulative advice and experience here amongst members about 'What to do when an elderly parent is hospitalised' and also 'What to do about their discharge'.

For example, something I've learnt here is that an 'unsafe discharge' is NOT allowed! Hospitals are legally forbidden to discharge a patient until a care package has been agreed both with SS and the family. ie, they can't just say 'We want the bed back, so she's going into a taxi/ambulance and will arrive home tomorrow lunchtime' (or whatever).

However, this may involve a battle of sorts between you, the hospital and the SS etc, so you may need to roll your sleeves up in a day or two??

Till then, I would say it's important you sit down quietly and think - OK, what do I MOST want to happen to mum?

What would be the implications of this (eg, if she went into self-funding care)

What will happen if they say she DOES have mental capacity to insist on coming home?

If I am not here, or give written refusal to lift a finger to help her (ie, I will live in this house AS IF SHE WERE NOT IN IT!), can they STILL 'send her home' if she wants to and has legal capacity?

By setting out the various options - take a separate A4 page each (as more will occur to you as you think things through!) - you will 'get your head around' all the preferences/fears/upsides/downsides, etc etc.

You'll have the' What Ifs clear in your mind, and be able to argue more cogently with whoever you're going to have to argue with!

This is going to be a time of I won't say 'stress' (because it isn't as bad as the Nightmare you've ended!), but 'focus and effort' perhaps. I found this when I had to 'bite the bullet' and accept that I could not and would not look after my MIL myself, and therefore the only option was residential care of some kind. It took effort to find the right place, get my head around it, go and fetch her, book her in, move her in, etc etc etc. It was not 'easy' (and she was a lovely person compared with your mum, but dementia was increasing and she just took up all my life!), but when it was 'all done' I could relax, and not only get my own life back, but do what I could to ensure she got well looked after AND saw at least a good bit of me etc etc.

For now, though, please just 'chillax' with your little dog, in a quiet peaceful house, and slowly slowly, slowly 'come back to you' (as the 'tea adverts' so well describe it!)

Kindest wishes - Jenny
211 posts