Desperate now - this is going to kill me

[jenny lucas]

Maz, she's in a safe place, and that is the essential matter. And YOU need your sleep - you came so near the edge, and at some point, the body just 'collapses' and it sounds like you reached that.

All best for tomorrow- Jenny

[Juggler]

I hope you manage to sleep and get some of your strength back ready to hold your ground.
Take care
Jx

[Lesley_15012]

Stay strong and be firm. Your own physical and mental health must prevail over others. Xx

[Maz1963]

Thank you all, your words of support really help.

As predicted, I had a call from the ward Matron this morning at 0830 asking if I could come in to calm mum down (could hear her shouting and screaming in the background - heartbreaking). Told her no, told her I had this all the time at home and that is why she is back in hospital. She asked if mum had a Social Worker. I said yes, but that SW can't move on in helping us until mum has a diagnosis/assessment of future care needs. She accepted all that, told me to relax at home and come in when I was ready.

On a positive front (not too many of those right now!) I just checked my bank account on line and I have already had my Carer's Allowance approved and can see it has been backdated to my claim date. That was very quick and at least I've got something coming in, as small as it may be (had to give up my part time job because of all of this). Also a chap just delivered a washing stool and 'mowbray' for mum (seat/frame that sits over toilet). I hope mum gets to use them, but sadly I don't think she will now.

My concern now is whether mum will be manageable in any dementia care home, or whether she will have to be committed to some kind of 'special hospital'. But, I'm not qualified to make that decision, so someone will have to make it for me, some day.

Thank you so much for all your support, it really helps.

PS - I have been keeping detailed notes of mum's tragic story, which I'm about to check, print and take to the hospital with me later (together with her meds, which I forgot about and brought home again with me!). Also, just thought again about the CA - they will probably stop that, won't they, after a while, if she doesn't come back home again? Will have to check.

[jenny lucas]

Maz, very glad to hear you didn't rush into the hospital! I'm not unsympathetic to the hospital, because patients with dementia are very, very challenging (as that poor matron is finding!), but that is NOT something for families to sort out - the NHS/government should be sufficiently funded for the huge numbers of very elderly people with dementia who are arriving on their doorstep and will continue to do so in in ever increasing numbers as the UK population ages.....(!!!!). Clearly, the NHS needs specialst 'dementia hospitals' as well as what used to be called convalescent nursing homes to absorb all the 'bed blockers'.

I'm glad the matron was sympathetic to you, but it does show they 'try it on' with families, doesn't it?!!!!! If they can get family to cope, then they are only too relieved to pass the problem back to you.

Speaking of which, please don't have your mum home again! It really does seem as if she has gone way, way beyond what you can cope with.

I'm not really clear about why they are faffing about with her diagnosis. After all, does it really matter that much WHY she is as she is, so distraught and 'wild', only that she IS like that! Unless what it causing it can be reversed, and in days, she HAS to be in 'care' somewhere (not at home!), irrespective of what is causing her to behave like that.

As for whether dementia care homes can cope with her - they do come in different 'varieties' I know. My MIL started out in an Abbeyfield where those with dementia only had it mildly, but she got too bad for it - they threw her out when she got out of the front door and headed off! So she went into another one which had 'lock down' facilities - basically, the doors were code-controlled, and residents couldn't get in and out on their own. This was actually 'too much' for her, and so I moved her yet again to an intermedicate home where nearly everyone has dementia, but not if it's 'wandering dementia' as it is not a lock-down facility. So far she's not managed to be thrown out, but it does happen. She did take to walking out a month or so ago, but was put on a low diazepam dose to 'calm her' (she gets restless in the evenings when there are no structured activities to absorb them), and so far, fings crossed, that seems to work. Another resident was thrown out because he kept going into the wrong bedroom and getting into bed there - nothing could convince him to stay in his own room for bed!

So, on that basis, I would surmise that there are care homes for very very disturbed and 'wild' dementia patients - though perhaps that is only through the use of tranquillisers?

I know it's controversial, but one argument in favour of tranquiillisation is that it not only makes it possible at all for someone to be cared for by others, but that they themselves are more well 'tranquil'......though others say it's just a 'chemical cosh' and turns them into zombies.

Whatever the situation with your mum, it really truly does sound like her behaviour is utterly impossible to manage at all without constant care and 'hands on' attention, and even then she sounds desperately unhappy. And WAY beyond what you can cope with.....

[Tracy_1412]

Hi Maz,
I have just had my ca stopped after telling them about a change in circumstances and so thought I would post the address for you. https://www.gov.uk/carers-allowance-report-change
It is stopped immediately and then they write to tell you they've investigated and your circumstances have changed, just in case you had forgotten!
I hope you can get some rest and recuperation and that your mum is placed somewhere suitable for her needs. It's very hard as a carer to hand responsibility on to someone else but at times it is the only decision left.
Take care
Tracy

[Maz1963]

Finally, after six weeks, she seems to be in the right place, for now anyway. She's in a specialist dementia/old people's ward. They have her doped up to the eyeballs, but at least she's sleeping and resting. For the first time in six weeks two ward sisters have sat with me in an office, listened to me, and re-assured me. A dementia specialist will be seeing her regularly. They say she still has a UTI, which will be exacerbating the confusion. They say she definitely has delirium, on top of any possible underlying dementia. Whatever the future holds, at least for now I feel we have her in the best place.

[jenny lucas]

Phew, relief! That sounds a lot lot better. Well done! Hope you can have a more relaxing evening tonight, plus a good night's sleep.

[Maz1963]

Thanks Tracey for the CA link. I am too honest for my own good sometimes (!) so will notify them she's in hospital.

[Maz1963]

Just called ward to ask how mum is. Nurse asked if Icould come in to help them as mum was wandering and refusing her meds. Guess what my answer was?!

Have bought a few treats for her, food wise, so will take those in later and will see if I can get her to take her tablets. I'm glad she's wandering -means she realises how important it is to keep mobile!

Am feeling a bit better today, think I am starting to 'get myself back'