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

Tell us a bit about yourself here.
211 posts
Good point! And it's not as if the hospital staff don't have their own proof she is abusive, as she's been abusing THEM as well! (I till can't help thinking that she should be fed tranquillisers - if nothing else, she's upsetting HERSELF as well as everyone else!)
Hi all, Hospital phoned this morning. Mum has had a fall in the bathroom. They say she is Ok but very disorientated & almost delirious. She has high temperature and they have diagnosed now pneumonia, to add to her problems. They say this is causing the mental issues.

So, I have Occupational Therapy onto me next, asking about the set up at home. Lots of questions. Told them, in tears, that I'm at the end of my emotional tether, been prescribed meds for depression (for first time in my life) and that I can't cope with her at home. They have agreed she has no capacity. Problem is, she is climbing the walls to come home - and also is desperate to start chain smoking again, I would imagine. It sounds like she's actually worse now than when she went in. God only knows how they could contemplate I could cope?

Despite some sleep last night I now feel completely drained & beaten once more....

Sorry i couldnt impart better news:( xxxx
Diane, hang on in there.
I'm sure I've mentioned NHS Continuing Healthcare to you already?
That involves a range of assessments from various hospital professionals, including Occupational Therapy. She's probably just doing her job, her side of the report.
When anyone says anything about discharge, just say she isn't going ANYWHERE until the CHC checklist has been completed, and you should be involved in that.
Also remember that it must be a SAFE discharge, it sounds as if you got her admitted just in time. She definitely can't go anywhere whilst she still has pneumonia.
Since she doesn't have "capacity" that is another "good" decision, they MUST now hold a "Best Interests" meeting. (Google this for more information). Whether or not she has capacity is another issue which will be involved with the CHC decision.
If it's granted, that will mean the NHS funds her care, until such time as she improves, which sounds pretty unlikely just now.
I'm glad your GP has given you some medication, keep taking it and try to rest.
I feel your nightmare will soon be over, come back whenever you want, we are here for you.
Diane - please please please keep telling the Occupational Therapist, the nurses, the doctors, anyone and everyone that IF they send your mother home IT WILL BE TO AN EMPTY HOUSE.

I do think it's ESSENTIAL they understand that the moment your mother arrives, YOU will be walking out. You will simply NOT be there, and that's that.

Take whatever money you have, and either land on your partner for a week, or beg a space on the floor of anyone you know, or a B&B it doesn't matter, the point is you will NOT be 'in the house'....your mother will have NO ONE to look after her.

Put this in in writing and 'on the record' and send it to everyone concerned with your mother's care. (Email them all for speed).

Remmber you have NO legal duty of care towards her. None. Not a thing, and THEY KNOW THAT!

BUT, if you look at all like 'weakening' they will have your mother back to her house in a shot. That's why it's SO important to get it on record you will NOT be looking after her, will NOT be in the house.

This really really is the end of the line now. You are NOT going back into that nightmare.

They CANNOT force you to look after her, or even be in the house.

Write to your GP as well, saying that!

On the plus side, it's great they are saying she doesn't have capacity....again, see if you can get them to say it in writing and on record!

The best, obviously, would be for them to move your mother to a residential care home specialising in dementia/mental infirmity (doesn't matter what is causing it, it's the 'infirmity' that counts') They can tell your mother 'This is a convalescent/nursing home',and not imply its permanent, that might placate her a bit.

Have you actually been in to see your mother? Please don't! It would just stress you out even more.

Finally, Diane, you may also have to be prepared for your mother worsening - the pneumonia may take a hold, and then it might be a case of 'nature taking its course'......I don't say this to scare you, but you will need to admit it as a possibility, even if it's a remote one.

But we'll deal with that, as and when.

In the meantime, my feeling is you need to tell everyone you are NOT going to be looking after her, and will NOT be in the house if they return her. Then maybe start asking which residentiall care home she is most likely to be sent to (pointing out that she will be self-funding - that should cheer them up!)

You're doing well - the situation is markedly better than it was before she was taken in, and the end of your nightmare is in sight.

Let us hope that it is not long before she is settled in a care home, being well looked after, by care-workers who are used to handling 'difficult' residents, and that you can 'get back to you' , look after the house, look after the dog, look after YOU, and then, when you visit, take the dog with you, and imply that where she is is 'temporary' a 'nursing home until you get better'.....and hopefully hopefully hopefully you and she can have a 'calmer' time of it all, until the end DOES come for her, whenever that might be.....

Hope you get as good nights' sleep as possible - kindest wishes at such a troubling time, Jenny
Diane, I have come late to this thread, but I am sorry to read everything that has happened to you. I just want to add that bowling bun is right - asking all those questions is what Occupational Therapists do. And you have done exactly right - telling them exactly what your situation is, tears and all.

Don't be surprised to find that others will ask the exact same questions. I found the Social worker and Physiotherapist both did - even though the answers were in the notes, they seemed to need to hear from me what I could not/would not do before they could fill their own form in. They are not afraid to keep asking so you should not be afraid to keep telling them.

C
My mum was in and out of hospital many times. In the end, the hospital wanted to send her home again, knowing she would fail again. I just couldn't face that again, neither could mum.
In the end, I realised it was time for mum to make a "last move" to somewhere that could manage whatever problem she developed. The nursing home said they could deal with anything other than profuse bleeding. Had she not gone to the nursing home then, it would only have been days before she would have been readmitted.
Slowly, but surely, he body was shutting down. In her last year she had mini strokes, lost her hearing, and almost her sight, but by then she knew the staff and they knew, and cared about, as well as for, her.
Isn't it time your mum made a "last move" too?
Thank you all once again for sound advice and support.

I have to go into hospital today, they want some clothes & things for her, which is natural, plus I need to speak to a doctor to find out where she's at with the pneumonia & if possible, how she's responding to drugs etc. I'm desperately tired today, no sleep all night & been sick all morning with nerves, just the thought of being anywhere near my mother brings on acute anxiety & my IBS is through the roof too, today.

One thing I WONT be doing is backing down regarding her coming home, no matter what pressure. I hope they'll realise when they see me, almost a week on, how ill my caring role is now making me. i know now that I've reached the end of my own mental & physical rope - I have no more to give - just trying to take care of myself at the moment is hard - I can't focus on even the smallest of tasks at times. I never thought I could feel so desolate, but its the not knowing what the future holds that's doing that, I know. I think I'm so terrified of having this peace snatched away from me again that I'm not enjoying it like I should....if that make sense?

I'll let you know how I get on. Think of me please! xxx
Diane, I know exactly what you mean, I was the same with my mum a couple of years ago. The trouble is you've been doing, and coping with, far too much for far too long, it's a bit like a tidal wave just behind you, and as soon as you finally let your guard down, it comes crashing down on you.
Others here have found that it takes a long time to get over this feeling. So it's OK, horrible, but you WILL get over it.
I hate lots of self help terms, especially the word "mindfulness", but the concept of listening to your body and being very aware of how you are feeling really helps. You know what you don't like, but try and concentrate now on little things that you do like. Maybe just the peace and quiet of having a coffee and croissant in a café knowing you don't HAVE to be anywhere for an hour or two. Or walking through autumn leaves. Or having a long peaceful soak in the bath with the radio on and bubbles everywhere.
You cannot be forced to do anything for mum. So if you just want to drop things off and not see her. That's fine. It's what YOU want that matters now. Mum is in safe hands.
Back from hospital. Mum was in tears, totally confused, says she's 'forgiven me' as has my father (he died 25 years ago) and that she was coming home at 6pm today. She did seem calmer, but of course, gagging for a ciggie. Should think all hell will break lose at 6pm when she can't get out.

She's on Clarithromycin for the pneumonia and apart from the general madness, looks ok. Told the nurse who is looking after her how ill it has all made me and that I can't have her back. She didnt argue. I am going to try to take advantage of this break now, at least I know she's OK (even though she's said they treat her badly - which is what she has said about me) Still feel so very ill, but have booked haircut for tomorrow, with another very early night tonight. Thank you all again for your help & support - I couldn't have regained even a modicum of sanity of hope without you all. Bless you xxx
Enjoy the hairdressers appointment, you deserve every second of pampering. Concentrate on that thought, mum is not allowed to intrude into your thoughts when it's being done!
211 posts